Parkinson's Disease Foundation Resource List '11 by sharon klein

Parkinson’s Treatment Centers

Caring In Parkinson’s

Employment, Insurance, Financial Assistance and Legal Matters

PARKINSON’S DISEASE RESOURCE LIST Understanding Parkinson’s Managing Advanced Parkinson’s Learning About Parkinson’s

Parkinson’s Organizations Parkinson’s Treatment Centers

Caring In Parkinson’s S E C O N D

E D I T I O N

Understanding Parkinson’s

Parkinson’s Treatment Centers

Caring In Parkinson’s

Employment, Insurance, Financial Assistance and Legal Matters

Understanding Parkinson’s Managing Advanced Parkinson’s Learning About Parkinson’s

Parkinson’s Organizations

For questions about Parkinson’s disease, contact the Parkinson's Information Service (PINS) HelpLine at (800) 457-6676 or visit www.pdf.org.

PARKINSON’S DISEASE RESOURCE LIST

S E C O N D

E D I T I O N

Parkinson’s Treatment Centers

Caring In Parkinson’s

Employment, Insurance, Financial Assistance and Legal Matters

Understanding Parkinson’s Important Information for Users of this Publication

Managing Advanced Parkinson’s Medical Information provided in the PDF Parkinson's Disease Resource List, Second Edition is not meant to be a substitute for advice provided by a physician or other qualified health care professional ("Medical Advice"). Always seek the Medical Advice of your physician or other qualified health care provider about any questions you may have regarding Parkinson's disease or any other medical condition or disease. You should not rely on the Medical Information provided in the PDF Parkinson's Disease Resource List, Second Edition for diagnosing a health or fitness problem or disease, for selecting or receiving any kind of pharmaceutical or form of treatment, or for participating in any form of clinical research. Never disregard professional Medical Advice or delay in seeking it because of something you have read in the PDF Parkinson's Disease Resource List, Second Edition.

Learning About Parkinson’s

Parkinson’s Organizations Disclaimer of Warranties Parkinson's Disease Foundation® (PDF®) does not endorse, recommend or make any warranties or representations regarding any of the materials, products, services or information provided by other organizations referred to in the PDF Parkinson's Disease Resource List, Second Edition. © 2011 Parkinson's Disease Foundation, Inc. All rights reserved.

Conditions of Use Parkinson's Disease Foundation, Inc., a New York not-for-profit corporation ("PDF"), owns the copyright in the PDF Parkinson's Disease Resource List, Second Edition. Portions of the PDF Parkinson's Disease Resource List, Second Edition may be photocopied for personal non-commercial use, but may not be reproduced, republished or distributed in print or in electronic form or other form without advance written permission from PDF or without compliance with any restrictions and conditions of use required to obtain that permission.

Table of Contents Welcome Letter

I. Learning About Parkinson’s • Understanding Parkinson’s • General Information • Practical Advice: Finding Reliable Health Information Online • For Those Newly Diagnosed • Motor Symptoms • General • Balance and Falls • Nonmotor Symptoms and Complications • General • Pain • Sleep and Fatigue • Gastrointestinal and Urinary Function • Cognition and Mood • Impulse Control Disorders • Vision • Oral • Orthostatic Hypotension (Low Blood Pressure) • Parkinsonism and Alternative Diagnosis • Clinical Studies • Practical Advice: Learning About PD Clinical Studies

1 1 6 7 8 8 9 10 10 11 11 12 14 15 15 16 16 16 19 20

• Treating Parkinson's • Medications • Surgical Treatments • Physical, Occupational and Speech Therapy • Practical Advice: Building Your Health Care Team • Nutrition • Exercise • Art and Music • Complementary and Alternative Therapies

24 24 26 27 28 32 36 40 41

• Living with a Parkinson’s Diagnosis • Coping with Parkinson's • Young Onset Parkinson's Disease • Practical Advice: Building a Support Network • Finding Support • Staying Independent • Driving • Traveling • Hospitalization • Accessing Adaptive Equipment and Supplies • Sources for Buying Equipment and Supplies • Personal Stories • Practical Advice: Getting Involved with the PD Community

42 42 45 46 47 50 52 53 55 56 56 57 58

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2. Employment Issues, Insurance, Financial Assistance and Legal Matters • Employment Issues • Insurance • General Information • Medicare • Social Security Benefits • Resources for Veterans • Practical Advice: Saving on Medications • Financial Assistance • Legal Matters

69 71 71 73 73 75 76 77 81

3. Caring in Parkinson’s • Support for Care Partners, Family and Friends • Practical Advice: Caring for the Care Partner • Providing Daily Care • Young Children Learning About Parkinson's Disease

85 86 92 94

4. Managing Advanced Parkinson's • Living at Home • Alternatives to the Home Setting • End of Life

97 99 100

5. Parkinson’s Organizations • National Parkinson's Organizations • Local/Independent Parkinson's Organizations • State Chapters and Networks • International Parkinson's Organizations

105 106 109 120

6. Parkinson’s Treatment Centers • Movement Disorder Centers • Veterans Affairs Parkinson's Disease, Research, Education and Clinical Centers (PADRECCs)

127 136

Indexes

137

Please note: • All listed programs and services are free unless otherwise noted by “$.” • All books are available in bookstores unless otherwise noted.

Phone

Welcome to the second edition of PDF’s Parkinson’s Disease Resource List! The concept for this publication — and its companion online version — developed originally from conversations with our People with Parkinson’s Advisory Council (PPAC). Members of the group, who provide the patient perspective to our programs, told us of the need for a central source of useful Parkinson’s resources. The first edition of the Parkinson’s Disease Resource List, published in the spring of 2008, generated rich feedback on the types of information people wanted to see included in the next edition. Building on these suggestions, and incorporating some of our own, we have added more than 50 pages of new resources in this second edition. Even with these additions and refinements, we know this publication remains far from comprehensive. In this connection, we thought it might be helpful to share with you some of the criteria we used in deciding whether a resource belongs in this publication. • Is the resource current? The rapid pace of scientific discovery in Parkinson’s makes this question very important. However, not all information goes out of date — for example, one-of-a-kind resources and inspiring first-person personal stories. • Is the resource credible? A proposed resource will not be included if its content draws premature conclusions, is inaccurate or is misleading. • Is the resource accessible? A resource will usually not be included if it is out of print, expensive or otherwise not easily available. Because we believe strongly that people should make their own judgments, it is not our practice to “endorse” listings, which are accordingly presented in alphabetical order. We also do not list give any preference to PDF programs or materials in the selections or recommendations. The exception to these rules is when we believe that one or two listings are exceptionally thorough or potentially useful by comparison with all others in the section; in such instances, we have placed the listing in a box and located it at the top of the section. We hope that you will find this publication helpful as you explore the Parkinson’s community. If you have suggestions for us to consider in preparing the next edition, please submit the resource online at www.pdf.org/en/resourcelink. And if you cannot find what you need, please call or email us at (800) 457-6676 or info@pdf.org. Very truly yours,

Robin Anthony Elliott Executive Director

Parkinson’s Treatment Centers

Caring In Parkinson’s

Employment, Insurance, Financial Assistance and Legal Matters

Understanding Parkinson’s Managing Advanced Parkinson’s

Learning About Parkinson’s Parkinson’s Organizations • Understanding Parkinson’s • Treating Parkinson's • Living with a Parkinson’s Diagnosis

Learning About Parkinson’s

1 Understanding Parkinson’s Key Resource: PINS: Parkinson's Information Service HelpLine Parkinson's Disease Foundation (800) 457-6676 info@pdf.org www.pdf.org/en/ask_expert

This national toll-free HelpLine is staffed by information specialists who can answer questions about Parkinson's disease, provide referrals to doctors and support groups where available and offer free educational materials.

General Information Ask The Doctor About Parkinson's Disease By: Michael S. Okun, M.D. and Hubert H. Fernandez, M.D. Publisher: Demos Health, 2009, 200 pages www.demosmedpub.com This book, written by two PD specialists who contribute to the National Parkinson Foundation's “Ask the Doctor” online service, provides in-depth answers to frequently-asked questions about Parkinson’s disease. Genetics and Parkinson's By: Katrina Gwinn, M.D. Publisher: Parkinson's Disease Foundation, 2009 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet examines the role of genetics in Parkinson's disease. Also offered in Spanish. ICYou icyou@benefitfocus.com www.icyou.com This website enables visitors to watch video clips from health care professionals on the disease or topic of their choice. It also allows individuals to post and share their own health-related videos. To view videos about Parkinson's disease, type "Parkinson's disease" in the search box.

Phone

Parkinson’s Disease Resource List

The Muhammad Ali Parkinson Center 100 Questions & Answers About Parkinson's Disease, Second Edition By: Abraham Lieberman, M.D. Publisher: Jones and Bartlett, 2009, 242 pages This book, written by a PD specialist, offers both physician and patient perspectives on multiple topics while also giving expert and practical answers to many commonlyasked questions about treatment options, quality of life and sources of support. Neurology Now Publisher: American Academy of Neurology (AAN) (800) 422-2681 neurologynow@lwwny.com www.neurologynow.com This bimonthly free online and print magazine offers features and expert articles on Parkinson's and other neurological conditions. Subjects previously covered include Treating PD Symptoms Unrelated to Muscle Movements, Driving and PD, Pesticides and PD and more. Parkinson's Disease and its Treatment: Secrets, Myths and Misconceptions By: Melissa J. Nirenberg, M.D., Ph.D. Publisher: Parkinson's Disease Foundation, 2009, 60 Minutes www.pdf.org/en/parkinsononline This online seminar, a PDF PD ExpertBriefing, discusses the myths and misconceptions about Parkinson’s and shares some lesser-known secrets about the disease and its treatment. Parkinson's Disease: A Complete Guide for Patients and Families, Second Edition By: William J. Weiner, M.D., Anthony E. Lang, M.D., F.R.C.P. and Lisa M. Shulman, M.D. Publisher: John Hopkins University Press, 2006, 296 pages This book, written by PD specialists, offers information on the early, moderate and advanced stages of Parkinson’s, behavior and psychiatric changes, making a PD diagnosis and Parkinsonisms.

Learning About Parkinson’s

Parkinson's Disease for Dummies By: Michele Tagliati, M.D., Gary N. Guten, M.D., M.A. and Jo Horne, M.A. Publisher: Wiley Publishing, 2007, 364 pages This book, also available in a two-volume large print edition, is written by PD specialists in the familiar "Dummies" format and offers information on finding the right doctor, understanding treatment options, coping with advanced PD, preparing for the future and more. Parkinson's Disease Handbook By: Lawrence I. Golbe, M.D., Margery H. Mark, M.D. and Jacob I. Sage, M.D. Publisher: American Parkinson Disease Association, 2008, 40 pages To order: (800) 223-2732 or www.apdaparkinson.org/usernd/publicationorder.asp This handbook, written by PD specialists, offers information on the disease, its signs and symptoms, and treatment options, as well as a glossary of PD terms. Also offered in Italian and German. Parkinson's Disease Q & A, Sixth Edition By: Blair Ford, M.D. and W. Lawrence Severt, M.D., Ph.D. Publisher: Parkinson's Disease Foundation, 2010, 68 pages To order: (800) 457-6676 or www.pdf.org/en/brochures This booklet answers the most frequently-asked questions about Parkinson's disease symptoms, treatments, common problems and current research. The Parkinson's Disease Treatment Book: Partnering with Your Doctor to Get the Most from Your Medications By: J. Eric Ahlskog, M.D., Ph.D. Publisher: Oxford University Press, 2005, 544 pages This book, written by a PD specialist, offers a thorough and easy-to-understand reference guide for people with Parkinson’s and their families.

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

Parkinson's Disease: What You And Your Family Should Know, Third Edition Edited by: Gale Kittle, R.N., M.P.H. Publisher: National Parkinson Foundation, 2006, 45 pages To order: (800) 327-4545 or www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This booklet offers a basic overview of Parkinson's symptoms, related conditions and medications. It also includes tips for maintaining good health through exercise, nutrition, sleep, mental wellness and adaptation. Also offered in Spanish. Parkinson's: Everything You Need to Know By: David A. Grimes, M.D., F.R.C.P.C. Publisher: Firefly Books, 2004, 206 pages This book, written by a PD specialist, offers information about Parkinson's diagnosis, look-alike conditions, treatments, home modification tips, day-to-day management of PD, and how to balance symptom relief with treatment side effects. Parkinson's FAQ Publisher: Parkinson's Disease Foundation, 2010 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet provides answers to the most common questions about Parkinson's disease. Topics include the incidence rate of the disease, possible causes and treatment options. Also offered in Spanish. PD Index www.pdindex.org This portal provides a central resource for information about Parkinson's disease on the Internet. PDWebcast: Parkinson's Science: Innovations and New Perspectives Publisher: Parkinson's Disease Foundation, 2008/2009 www.pdf.org/en/webcast This online seminar series, presented by experts in the field, includes discussions on genetics and PD, nonmotor symptoms, potential treatments in the Parkinsonâ&#x20AC;&#x2122;s pipeline and the role of diet, exercise and creativity in PD.

Learning About Parkinson’s

PD Secrets, Myths and Misconceptions By: Melissa J. Nirenberg, M.D., Ph.D. Publisher: Parkinson's Disease Foundation, 2010 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet, written by a PD specialist, discusses the myths and misconceptions about Parkinson’s and shares some lesser-known secrets about the disease and its treatment. Shaking Up Parkinson's: Fighting Like a Tiger, Thinking Like a Fox By: Abraham Lieberman, M.D. Publisher: Jones and Barlett Publishers, 2002, 200 pages This book, written by a PD specialist, offers information about the possible causes of Parkinson’s, treatments and the less discussed and understood effects of PD on cognitive functioning. Understanding Parkinson's Disease: A Self-Help Guide, Second Edition By: David L. Cram, M.D., Steven Schechter, M.D. and Xiao-Ke Gao, M.D. Publisher: Addicus Books, 2009, 170 pages This book, written by a physician living with PD along with two additional physician authors, offers a first-hand guide for managing with the emotional effects of the disease, utilizing a full circle of good health care professionals and more. We Move: Movement Disorder Glossary of Terms wemove@wemove.org www.wemove.org/glossary This website’s list of definitions and terminology is used by health care professionals to describe features of PD and other movement disorders. We Move: Unified Parkinson's Disease Rating Scale wemove@wemove.org www.mdvu.org/library/ratingscales/pd/default.asp This rating scale is used by physicians to determine the stages of PD progression.

Parkinson’s Disease Resource List

Practical Advice:

Finding Reliable Health Information Online Turning to the Internet on a daily basis is a common practice; so what questions should we ask ourselves as we navigate health information online? What Type of Website is It? • Blogs are usually written by one person about his/her personal experiences. Entries are not usually reviewed by a health professional. • Commercial sites can be informative about a particular company or product, but will likely present information about only the products of the sponsoring company. • Nonprofit sites can be good sources of health information, but make sure the site is a true nonprofit by check the bottom of the webpage, where, often, you can find out who owns and operates it. It is a good idea to start by contacting nationally and regionally known groups, such as PDF (www.pdf.org). • Listservs are systems of email that allow you to communicate with all members of that list at one time. As with blogs, listservs are typically not written or reviewed by health professionals. Is the Source Transparent? • Who is the author? • Does the site have ‘About Us’ and ‘Financial Information’ accessible? • Does the site have a privacy policy? • Does the site allow you to provide feedback or participate? • How does the site present advertisements? How Accurate is the Information? • When was it last updated? • Is the information in context? • Does the website reference their sources? Online health information can better prepare us for visits to the doctor and keep us all informed, but this information should never replace your doctor’s advice. The Internet is a great resource, but remember that information we find there is no better than the credentials of those who contribute.

Learning About Parkinson’s

For Those Newly Diagnosed Choosing the Right Doctor By: Sheryl Jedlinski Publisher: Parkinson's Disease Foundation, 2006 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet offers information and guidance on finding the right medical care when diagnosed with PD. Subjects include questions to consider when selecting a medical professional and how to find a doctor in your area. Also offered in Spanish. Diagnosis Parkinson's Disease: You are not alone By: Claire Berman Publisher: Parkinson's Disease Foundation, 2006, 30 pages To order: (800) 457-6676 or www.pdf.org/en/publications This booklet, designed for the individual newly diagnosed with PD, addresses questions that may arise upon diagnosis. It shares resources, medical expert testimony, and the experiences of people who have dealt with a diagnosis of Parkinson's disease. This booklet has a companion DVD/video. Making the Most of Your Medical Appointment By: Struthers Parkinson Center Parkinson’s FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This checklist offers information to help people with Parkinson's maximize their doctors’ time and expertise during medical appointments. Managing Parkinson's: Straight Talk and Honest Hope, Second Edition Publisher: The Washington State Chapter of the American Parkinson Disease Association, 2008 To order: (800) 223-2732 or www.waparkinsons.org/edu_research/sthh_dvd_request.php This DVD, created for individuals newly diagnosed with Parkinson's, contains more than an hour of interviews with doctors, people with PD and other Parkinson's experts, along with an extensive resource section and related website links.

Parkinson’s Disease Resource List

Parkinson's Disease: A Guide for Patients and Families Publisher: American Academy of Neurology, 2009 To order: http://patients.aan.com/go/videos The booklet and companion DVD, hosted by Holly Robinson Peete and featuring PDF Scientific Director, Stanley Fahn, M.D., is a guide for the newly diagnosed and their families, helping to explain PD symptoms and treatments while also focusing on ways to make informed decisions about Parkinson’s care.

Motor Symptoms General Enhancing Hand Coordination By: Struthers Parkinson Center Parkinson’s FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist offers multiple suggestions to assist in the enhancement of hand coordination in those living with PD. Mobility and Parkinson's: Simple Compensations By: Struthers Parkinson Center Parkinson's FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist offers information and tips to improve mobility and movement when living with Parkinson’s. Posture and Parkinson's By: Struthers Parkinson Center Parkinson’s FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist details why it is important to maintain good posture when living with PD and offers suggestions on how to do it.

Learning About Parkinson’s

Suggestions for Handwriting Changes By: Struthers Parkinson Center Parkinson’s FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist offers suggestions for managing micrographia, an issue sometimes seen in PD when handwriting becomes small, cramped and more difficult to control.

Balance and Falls Balance Checklist By: Marjorie W. Johnston Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist reviews important elements to consider for promoting good balance while living with Parkinson’s. Falls Prevention By: Sheree Loftus, Ph.D Publisher: Parkinson's Disease Foundation, 2010 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet offers practical advice for decreasing the risk of falling for those living with Parkinson's. Falls Prevention Workbook Publisher: National Parkinson Foundation, 141 pages www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This manual offers extensive information about fall prevention, including relevant facts, education for prevention, and fall and post-fall suggestions.

Parkinson’s Disease Resource List

Nonmotor Symptoms and Complications General Freezing in Parkinson's Disease By: Terry Ellis, Ph.D., P.T. and Tami DeAngelis, P.T. Publisher: Boston University and APDA National Rehab Resource Center To order: (888) 606-1688 or www.apdaparkinson.org/userND/index.asp This informational sheet, authored by physical therapists specializing in care for those with PD, offers ten helpful tips to address freezing problems in Parkinson’s. Making the Connection Between Brain and Behavior: Coping with Parkinson's Disease By: Joseph H. Friedman, M.D. Publisher: Demos Health, 2007, 250 pages This book, also available in a large print edition, offers information and guidance to help cope with the behavioral and cognitive issues that can occur with PD. Non-Motor Problems in PD By: John Morgan, M.D. Publisher: Medical College of Georgia, HealthTecDL & Statewide AHEC Program Office https://admin.na5.acrobat.com/_a775397023/p62581229/?launcher=false&fcsContent =true&pbMode=normal This webcast, presented by a PD specialist, offers information on multiple nonmotor complications of Parkinson’s including visual changes, fatigue, sensory changes, sleep disturbances and autonomic nervous system dysfunction. PD: More than a Movement Disorder By: J. William Langston, M.D. Publisher: Parkinson's Disease Foundation, 2007 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet offers information about the nonmotor symptoms and pathological elements that are sometimes overlooked in some definitions of Parkinson’s. Subjects include the current scientific understanding of PD, as well as the syndromes and symptoms that can lead to its diagnosis. Also offered in Spanish.

Learning About Parkinson’s

Pain Pain and Parkinson's: Are They Related? By: Struthers Parkinson Center Parkinson’s FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist offers explanations and suggestions for coping with pain due to Parkinson's disease. Pain in Parkinson's Disease By: Blair Ford, M.D. Publisher: Parkinson's Disease Foundation, 2005 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet addresses the often overlooked painful symptoms of PD and describes an approach to diagnosing and treating the various pain syndromes that may occur. Also offered in Spanish.

Sleep and Fatigue Building a Better Night's Sleep By: Susan C. Imke, R.N., M.S. Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist offers multiple tips and ideas to help improve nighttime sleep. Fatigue and Parkinson's Disease By: Joseph H. Friedman, M.D. Publisher: American Parkinson Disease Association, 2008, 4 pages To order: (800) 223-2732 or www.apdaparkinson.org/usernd/publicationorder.asp This article explains how fatigue may sometimes go unnoticed or unrecognized as a symptom or complication of Parkinson’s and offers suggestions to help treat fatigue in PD.

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

Fatigue, Sleep Disorders and Parkinson's Disease By: Joseph H. Friedman, M.D. Publisher: Parkinson's Disease Foundation, 2010, 60 Minutes www.pdf.org/en/parkinsononline This online seminar, a PDF PD ExpertBriefing, addresses fatigue, sleep disorders and related issues, while also offering tips for coping with these common symptoms when living with PD. Fighting Fatigue: Enhancing Energy and Endurance By: Struthers Parkinson Center Parkinsonâ&#x20AC;&#x2122;s FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist offers a list of considerations for coping with or minimizing the effects of fatigue in daily activities when living with PD. National Sleep Foundation: Parkinson's Disease (202) 347-3471 nsf@sleepfoundation.org www.sleepfoundation.org/article/sleep-topics/parkinsons-disease-and-sleep This organization offers information on the factors that can affect the quality of sleep. To find information on PD-related sleep problems, treatments and coping strategies, visit the 'Sleep Topics' section. Also offered in Spanish, German and French.

Gastrointestinal and Urinary Function Constipation & Parkinson's Disease By: Robert S. Jenco, Pharm.D. and Mary L. Wagner, Pharm.D., M.S. Publisher: American Parkinson Disease Association, 2010 To order: (800) 223-2732 or www.apdaparkinson.org/usernd/publicationorder.asp This article provides valuable information about causes and treatments or solutions for the common problem of constipation in PD. Continence Care for People Living with Parkinson's Disease By: Clare Fowler, M.B., M.S., M.Sc., F.R.C.P. Publisher: National Association for Continence in collaboration with National Parkinson Foundation, 48 pages To order: (800) 252-3337 or www.nafc.org/uploads///PPT/PDbookletppt.pdf This booklet offers specific information on PD incontinence issues including treatments and management strategies for bladder dysfunction.

Learning About Parkinsonâ&#x20AC;&#x2122;s

Gastrointestinal and Urinary Dysfunction in PD By: Ron Pfeiffer, M.D. Publisher: Parkinson's Disease Foundation, 2008 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet offers information on the gastrointestinal and urinary dysfunction problems sometimes associated with PD. Subjects covered include stomach problems, bowel dysfunction, bladder and urinary problems and suggestions on how to address these issues. Also offered in Spanish. Incontinence & Parkinson's Disease By: Debbie Guyer, M.A., CCC-SLP Publisher: American Parkinson Disease Association, 2009 To order: (800) 223-2732 or www.apdaparkinson.org/userND/PublicationOrder.asp This article explains the issue of bladder control in PD and offers suggestions for coping with this problem. National Association For Continence (NAFC) (800) 252-3337 memberservices@nafc.org www.nafc.org This incontinence-specific consumer and advocacy organization offers information on PD-related incontinence, as well as information on incontinence care and management, urinary catheterization and more. Also available in Spanish. The Simon Foundation for Continence (800) 237-4666 www.simonfoundation.org This organization addresses the multiple issues related to incontinence, including possible causes and effects. Also, information is offered about treatment, management techniques and adaptation products that may help offset incontinence issues.

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

Cognition and Mood Combating Depression in Parkinson's Disease By: Matthew Menza, M.D. Publisher: Parkinson's Disease Foundation, 2009 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet offers strategies for dealing with depression, one of the major and most common challenges for people living with Parkinson's. Also offered in Spanish. Depression and Parkinson's Disease By: Brian D. Bell, Ph.D. Publisher: American Parkinson Disease Association, 2008 To order: (800) 223-2732 or www.apdaparkinson.org/usernd/publicationorder.asp This article discusses the connection between depression and Parkinson's disease, including possible causes and treatment approaches. Learning to Relax and Reduce Stress By: Struthers Parkinson Center Parkinsonâ&#x20AC;&#x2122;s FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist offers relaxation techniques to help improve PD symptoms made worse by stress. Mind, Mood & Memory By: Rebecca Martine, A.P.R.N., C.S., B.C. and John Duda, M.D. Publisher: National Parkinson Foundation, 2007, 95 pages To order: (800) 327-4545 or www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This booklet addresses the mental and emotional health issues, cognitive changes, sleep disturbances, dementia and psychosis sometimes experienced by people with PD. A chapter on mental health issues for caregivers is also included. Not Just a Movement Disorder: Cognitive Changes in PD By: Laura Marsh, M.D. Publisher: Parkinson's Disease Foundation, 2008 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet offers information and guidance on the cognitive changes sometimes associated with PD. Subjects covered include prevalence and forms of cognitive changes in PD, types of cognitive difficulties and some of the causes and treatments of cognitive changes. Also offered in Spanish.

Learning About Parkinson’s

Sorting Out Your Feelings By: Struthers Parkinson Center Parkinson’s FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist discusses the symptoms of PD that affect mood such as depression and anxiety. Techniques for Managing Stress By: Gilbert A. Gallego Publisher: National Parkinson Foundation, six pages www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist offers help to cope and redress the problem of stress, sometimes present in those living with PD.

Impulse Control Disorders The Ups and Downs of Dopamine: Impulse Control and Parkinson’s By: Daniel Weintraub, M.D. Publisher: Parkinson's Disease Foundation, 2011 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet offers information about the impulse control disorders (ICDs) that can occur in people with Parkinson's disease. An overview of these disorders, which can include pathological gambling, shopping, eating and hypersexuality, are discussed and possible treatment options are outlined.

Vision Neuro-ophthalmology and Parkinson's Disease By: Andrew A. Berman, M.D. Publisher: American Parkinson Disease Association, 2008 To order: (800) 223-2732 or www.apdaparkinson.org/usernd/publicationorder.asp This article explains how neuro-ophthalmologists — medical specialists who study the impact of neurological diseases on vision — diagnose and treat the visual manifestations of Parkinson's.

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

Oral Dental Health and Parkinson's Disease By: James M. Noble, M.D., M.S., C.P.H. Publisher: Parkinson's Disease Foundation, 2009 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet discusses the barriers to good dental health for people with Parkinson's disease and offers strategies for improving dental care. Also offered in Spanish. Parkinson's Disease and Oral Healthcare By: Mitchell A. Huber, D.D.S. Publisher: American Parkinson Disease Association, 2007 To order: (800) 223-2732 or www.apdaparkinson.org/usernd/publicationorder.asp This article offers recommendations for managing common complaints concerning oral health, including oral cavity problems specific to Parkinson's disease, oral motor and sensorimotor impairment, dysphagia, burning mouth, taste and smell.

Orthostatic Hypotension (Low Blood Pressure) How to Measure Your Blood Pressure By: Paula Viscomi, R.N., M.ScN. Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This checklist offers information on how to record blood pressure at home and report data to the healthcare team. Low Blood Pressure in Parkinson's Disease By: Linda P. Miller, R.N., M.Ed. Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This checklist offers information and tips on how to manage the problem of low blood pressure when living with Parkinsonâ&#x20AC;&#x2122;s.

Parkinsonisms and Alternative Diagnoses Cure PSP-Foundation for PSP, CBD and Related Brain Diseases (800) 457-4777 info@curepsp.org www.psp.org This organization provides information and resources on Progressive Supranuclear Palsy (PSP), Corticobasal Degeneration (CBD), Multiple System Atrophy, and related brain diseases, conditions sometimes mistaken for PD and Alzheimer's disease.

Learning About Parkinsonâ&#x20AC;&#x2122;s

International Essential Tremor Foundation (IETF) (888) 387-3667 info@essentialtremor.org www.essentialtremor.org This organization offers a free information packet and a monthly electronic newsletter, raises funds for essential tremor research and provides referrals to physicians and support groups. Some information offered in French and Spanish. Lewy Body Dementia Association (LBDA) (800) 539-9767 www.lbda.org This organization is dedicated to providing education and raising awareness about Lewy body dementias (LBD). It offers a care partner helpline, support groups and online support forums. National Hydrocephalus Foundation (NHF) (888) 857-3434 nhf@earthlink.net www.nhfonline.org This organization offers educational support and a communication network for individuals and families coping with hydrocephalus. Shy-Drager Syndrome/Multiple System Atrophy Support Group (866) 737-5999 vjames@shy-drager.org www.shy-drager.org This organization operates a helpline and online support forum and maintains a directory of support groups, doctors and clinics. It also hosts webinars, holds a national conference, offers news and information about related clinical trials and raises research funds.

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

Tardive Dyskinesia Center (800) 584-6601 information@tardivedyskinesia.com www.tardivedyskinesia.com This organization offers information on Tardive Dyskinesia. This condition can lead to a permanent movement disorder and is generally caused by prolonged use of antipsychotic medication, as well as from some medications prescribed for acid reflux. Understanding Parkinson's Plus Syndromes and Atypical Parkinsonism Publisher: Parkinson's Disease Foundation, 2008 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet offers an overview of the Parkinson's Plus Syndromes (PPS), which include Corticobasal Degeneration, Lewy Body Dementia, Multiple System Atrophy and Progressive Supranuclear Palsy. This resource helps to clarify some of the differentiating symptoms that distinguish these diseases from classic PD. Also offered in Spanish. We Move Discussion Forum: Corticobasal Degeneration wemove@wemove.org www.wemove.org/ubb/ultimatebb.php?/forum/3.html This online forum, also known as a listserv, allows for the sharing of experiences, information, friendship and feedback on Corticobasal Degeneration. We Move Discussion Forum: Multiple System Atrophy wemove@wemove.org www.wemove.org/ubb/ultimatebb.php?/forum/15.html This online forum, also known as a listserv, allows for the sharing of experiences, information and friendship on Multiple System Atrophy. We Move Discussion Forum: Progressive Supranuclear Palsy wemove@wemove.org www.wemove.org/ubb/ultimatebb.php?/forum/1.html This online forum, also known as a listserv, allows for the sharing of experiences, information and friendship on Progressive Supranuclear Palsy.

Learning About Parkinson’s

Clinical Studies Key Resource: PDtrials (800) 457-6676 info@PDtrials.org www.PDtrials.org

This collaborative initiative of Parkinson's organizations is dedicated to increasing education and awareness about clinical research. The PDtrials website lists Parkinson's clinical studies that are currently seeking participants, offers educational information and materials and allows visitors to subscribe to a free monthly email newsletter.

Building Patient Trust: A New Era in Parkinson's Clinical Research Rights & Responsibilities Publisher: Parkinson's Disease Foundation, 2008, 28 pages To order: (800) 457-6676 or www.pdf.org/en/publications This report summarizes the proceedings and findings of a 2007 roundtable discussion that explored barriers to clinical research — specifically, how the Parkinson's community can improve patient trust in the process. Participants included people with Parkinson's, researchers, industry representatives and members of government. Center for Information and Study of Clinical Research Participation (CISCRP) (877) 633-4376 info@ciscrp.org www.ciscrp.org This organization educates, informs and empowers patients, the public, medical and research professionals, the media and policymakers about clinical research participation and what it means to be an active participant in the clinical research process.

Parkinson’s Disease Resource List

Practical Advice:

Learning About PD Clinical Studies Clinical studies (also known as clinical trials or clinical research) are conducted with human participants and are designed to answer specific scientific questions. The aim of clinical studies is to find better ways to prevent, detect or treat disease or to improve care. It is only through clinical studies and the participation of people in these studies that new Parkinson’s treatments are made available. Types of Clinical Studies There are different types of clinical studies. Some test the safety and effectiveness of a potential new Parkinson’s treatment or a different way of using an existing therapy (known as interventional studies). Others aim to identify the potential causes of PD, such as genetics or external environmental factors that may trigger the development of the disease, or how PD affects different people and changes over time (known as observational studies). Phases of Clinical Trials There are four phases of a clinical trial. Phase I tests a potential treatment for the first time in a small group of people to evaluate safety, determine the safe dosage and identify side effects. Phase II trials, conducted in a larger group of people, determines efficacy and further evaluates safety. Phase III, conducted among large groups of people, confirms effectiveness, monitors side effects, compares the experimental treatment to commonly-used treatments and collects information that will allow it to be used safely. Phase IV are post-marketing studies to determine additional information about a treatment, including risks, benefits and optimal use. Should You Participate in a Clinical Study? Deciding to participate in a clinical study can be rewarding and challenging. The key to making it a positive experience is to get all of the information necessary to make the best decision prior to enrolling in a study. If you have Internet access, a great place to start is www.PDtrials.org. This website offers a number of resources that can help you learn more about PD clinical research, identify clinical studies in your area and know what questions to ask of the research professionals running the study that you are considering. If you do not have access to the Internet, you may order PDtrials print resources by calling (800) 457-6676.

Practical Advice 20

Learning About Parkinson’s

Centerwatch (866) 219-3440 customerservice@centerwatch.com www.centerwatch.com This company provides an extensive list of clinical trials that are being conducted around the world and publishes a wide range of clinical research newsletters, books and directories. Clinical Research Learning Institute Parkinson's Disease Foundation (800) 457-6676 www.pdf.org/en/crli This annual, multi-day educational training prepares people with Parkinson's to become advocates within the clinical research process. The coursework presented focuses on the science of Parkinson’s and strategies for influencing research decision-making. ClinicalTrials.gov www.clinicaltrials.gov This website offers a registry of federally and privately supported clinical trials conducted in the US and around the world. This service of the National Institutes of Health provides patients, family members and the general public with current information about specific clinical studies as well as information about clinical trials. Getting Involved in Clinical Research Publisher: Parkinson’s Disease Foundation, 2011 To order: (800) 457-6676 or www.pdf.org/en/publications This publication can help one to stay educated and informed about clinical study participation.

Parkinson’s Disease Resource List

The Gift of Participation: A Guide to Making Informed Decision About Volunteering for a Clinical Trial By: Kenneth Getz, M.B.A. Publisher: Jerian Publishing, 2007, 358 pages To order: (800) 252-3337 or http://nafc.org/uploads///PPT/PDbookletppt.pdf This book recognizes the gift that clinical trial participants give and provides comprehensive information and insights to help the reader make informed decisions about volunteering for a clinical trial. Inside Parkinson's Clinical Trials: What You Need to Know By: Danna Jennings, M.D. and Steve DeWitte Publisher: PDtrials, 2010, 60 Minutes www.pdtrials.org/en/educ_webinars This online seminar discusses how a clinical trial works and how Parkinson's researchers and study volunteers work together to make the most of the clinical study participation partnership. Lessons Learned: How Completed Parkinson's Clinical Studies Help Shape the Future By: Bernard Ravina, M.D., M.S.C.E. Publisher: PDtrials, 2010, 60 Minutes www.pdtrials.org/en/educ_webinars This online seminar discusses how lessons learned from completed trials of Parkinson’s therapies can raise and solve new questions, helping to shape future research — and to ultimately target new therapies for Parkinson’s disease. Parkinson Pipeline Project comments_suggestions@pdpipeline.org www.pdpipeline.org This volunteer group of people with Parkinson's is committed to providing the patient perspective in the treatment development process.

Learning About Parkinson’s

Parkinson's Advocates in Research (PAIR) Parkinson’s Disease Foundation (800) 457-6676 www.pdf.org/pair This network of more than 100 research advocates from 36 states are working to bring educated consumer voices to important issues in Parkinson’s therapy development. Advocates are actively collaborating with scientists, government agencies and private industry, to change the role that people with Parkinson’s play in the design and implementation of Parkinson’s research programs. Participating in Parkinson's Clinical Research: The Key to Becoming an Informed Study Volunteer By: Kenneth Getz, M.B.A. Publisher: PDtrials, 2009, 60 Minutes www.pdtrials.org/en/educ_webinars This online seminar offers information and insight for those considering participation in a clinical study. PD Online Research Michael J. Fox Foundation for Parkinson’s Research www.pdonlineresearch.org This website offers the scientific community an online forum to participate in technical discussion and problem-solving in Parkinson’s disease research. PubMed (National Center for Biotechnology Information) US National Library of Medicine - National Institutes of Health custserv@nlm.nih.gov www.ncbi.nlm.nih.gov/PubMed This website includes citations for biomedical literature from MEDLINE, life science journals and online books. Citations may include links to full-text content from PubMed Central and publisher web sites. To find PD-related citations, use the search option to type in your keyword, such as “Parkinson's disease.”

Parkinson’s Disease Resource List

What's in the Parkinson's Pipeline? By: David G. Standaert, M.D., Ph.D. Publisher: Parkinson's Disease Foundation, 2010, 60 Minutes www.pdf.org/en/parkinsononline This online seminar, a PDF PD ExpertBriefing, discusses new therapies in the “pipeline" for Parkinson's and the process through which they are developed and tested in clinical trials.

Treating Parkinson’s Medications Ask the Pharmacist National Parkinson Foundation http://forum.parkinson.org/ This online forum, moderated by a pharmacist, answers questions on PD medication management. Mayo Clinic: Drugs and Supplements www.mayoclinic.com/health/drug-information/DR602175 The “Drugs and Supplements” portion of this website offers a comprehensive search option to learn about any FDA-approved drugs, including those for PD as well as some supplements. Evidence-based information about the dosing and safety of certain supplements are included. Medical Management of Parkinson's Disease By: Marilyn R. Semenchuk, Pharm.D., B.C.P.P. Publisher: American Parkinson Disease Association, 2008 To order: (800) 223-2732 or www.apdaparkinson.org/usernd/publicationorder.asp This article explores medications that control the symptoms of Parkinson's and explains the six categories of drugs used in the pharmacological management of PD. Medications, Fourth Edition By: David Houghton, M.D., Howard Hurtig, M.D. and Melanie Brandabur, M.D. Publisher: National Parkinson Foundation, 2008, 60 pages To order: (800) 327-4545 or www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This booklet discusses the medications used to treat Parkinson disease, including non-motor symptoms, mood and sleep disorders. The role of clinical trials and complementary medicine are addressed. Also offered in Spanish.

Learning About Parkinson’s

Medications Approved for the Treatment of Parkinson's Disease in the USA Publisher: American Parkinson Disease Association, 2010 To order: (800) 223-2732 or www.apdaparkinson.org/usernd/publicationorder.asp This article lists the generic name, trade name, mode of action and common side effects of medications approved for the treatment of PD in the US as of May 2010. Medications and You: When to Begin Medications By: Struthers Parkinson Center Parkinson’s FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist offers practical advice about initiating medications for the treatment of Parkinson’s. Medication Schedule Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online tool offers a way to help track and organize medication regimens by date, time, medication name and strength. RxList: Drugs A-Z List www.rxlist.com/drugs/alpha_a.htm This online list features an index of all FDA-approved drugs. In addition, a detailed description of each drug, its interactions and side effects are available. Understanding PD Medications Publisher: Parkinson's Disease Foundation, 2010 www.pdf.org/en/meds_treatments This online chart offers an up-to-date overview of the current medications approved to treat PD. The chart also includes information on dosing and the more common side effects.

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

US Food and Drug Administration (FDA) (888) 463-6332 www.fda.gov This government agency is responsible for overseeing the approval of new drugs, offering and approving drug-specific information, acting as an overseeing body of product problems, reviewing and relaying safety alerts and monitoring and sharing post-market study drug safety information.

Surgical Treatments A Guide to Deep Brain Stimulation Therapy, Second Edition By: Jill Marjama-Lyons, M.D. and Michael S. Okun, M.D. Publisher: National Parkinson Foundation, 2007, 56 pages To order: (800) 327-4545 or www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This booklet offers a detailed description of deep brain stimulation (DBS), including pre- and post-surgical care, the pros and cons of surgery and the ideal candidate for the procedure. Ask The Surgical Team National Parkinson Foundation http://forum.parkinson.org/index.php?/forum This online forum, moderated by physicians trained in movement disorders, allows individuals to anonymously ask questions about surgical matters and PD. DBS-STN.org (800) 579-8440 www.dbs-stn.org This website, an affiliate of The Parkinson Alliance, offers news and research updates on DBS. Deep Brain Stimulation for Parkinson's Disease, Third Edition By: Blair Ford, M.D. Publisher: Parkinson's Disease Foundation, 2008, 39 pages To order: (800) 457-6676 or www.pdf.org/en/brochures This booklet reviews the history of DBS, discusses the procedures currently available, explains who is a good candidate for this treatment, and advises people with Parkinson's both how to prepare for surgery and how to maintain their health post-surgery.

Learning About Parkinsonâ&#x20AC;&#x2122;s

Should You Consider Deep Brain Stimulation? By: Blair Ford, M.D. Publisher: Parkinson's Disease Foundation, 2006 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet discusses the eligibility requirements for DBS, when the procedure is most effective and possible surgical outcomes. Also offered in Spanish.

Physical, Occupational and Speech Therapy Activities of Daily Living: Practical Pointers for Parkinson Disease By: Heather Cianci, P.T., M.S., G.C.S., Lizette Cloete, O.T.R./L., Joan Gardner, R.N., B.S.N., Marilyn Trail, M.O.T., O.T.R., B.C.N. and Rose Wichmann, P.T. Publisher: National Parkinson Foundation, 2006, 40 pages To order: (800) 327-4545 or www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This booklet offers suggestions for maintaining independence in and use of adaptive aides for bathing, dressing, sleeping, eating, toileting and mobility. This resource includes tips for care partners. Also offered in Spanish. American Speech-Language-Hearing Association (ASHA) (800) 638-8255 actioncenter@asha.org www.asha.org This health professional membership and consumer organization offers a directory of speech-language pathologists. In addition, information on diagnosing and treating such issues as dysphagia and dysarthria, which may be present in PD, are available on the website. Be Independent: A Guide for People with Parkinson's Disease By: Nancy A. Flinn, Ph.D., O.T.R./L., Gwen Mensen, P.T., Scott Krohn and Paulette J. Olsen, B.S., P.T. Publisher: American Parkinson Disease Association, 2009, 34 pages To order: (800) 223-2732 or www.apdaparkinson.org/usernd/publicationorder.asp This booklet addresses daily activities including bathing, grooming, dressing, preparing food and eating, caring for the home, as well as walking and general mobility. There is also information on adaptive devices and other useful aids. Also offered in Spanish, German and Italian.

Parkinson’s Disease Resource List

Practical Advice:

Building Your Health Care Team Taking advantage of the expertise of a team of professionals in a comprehensive approach to health care can be very beneficial for a person living with Parkinson’s disease. Who should be part of your team? Movement Disorder Specialist (MDS): A movement disorder specialist — a neurologist trained in assessing and treating movement disorders, including Parkinson’s — is the cornerstone of the PD health care team. If there is no MDS in your area, it may be worth it to travel once or twice a year to see one. He or she may then be able to work with your local neurologist to provide the best care possible. See the list of movement disorder centers starting on page 127 or contact PDF at (800) 457-6676 to locate an MDS near you. Speech-Language Pathologist: While people with PD may not perceive themselves as talking too quietly or unclearly, many may find themselves being told to “speak up.” A speech-language pathologist can help strengthen voice function using the Lee Silverman Voice Treatment® (LSVT® LOUD), a method clinically proven to improve PD speech problems, and may also provide strategies for coping with swallowing difficulties. Physical Therapist: People with PD may have problems with walking, balance, posture, flexibility and strength at some point in the disease. A physical therapist works to help you regain and maintain mobility, and can also develop customized exercise programs. Occupational Therapist: An occupational therapist can help you to meet the challenges that PD presents at home and in the workplace by showing you ways to modify your environment, your approach to tasks and even the tasks themselves. Social Worker: A social worker usually offers counseling services to individuals, couples and families, and many are also trained in techniques to reduce stress, depression and anxiety. They can link you to federal, state and local services and other resources. All these professionals can help a person with PD live better with the disease. In addition, some people with Parkinson’s disease may also seek the assistance of nutritionists, psychologists or psychiatrists.

Learning About Parkinson’s

Do I Have a Speech or Voice Problem? By: C.A. Rosen, A.S. Lee, J. Osborne, T. Zullo and T. Murry Publisher: National Parkinson Foundation, 2004 www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist offers a self-assessment regarding speech and voice issues. Based on the user’s score, he or she can determine if a referral for a speech pathologist should be requested. Directory of Certified Clinical Specialists in Physical Therapy American Physical Therapy Association (800) 999-2782 sitefeedback@apta.org www.apta.org/AM/Template.cfm?Section=ABPTS&Template=/aptaapps/spec certdirectory/selectccsform.cfm This directory of physical therapists includes neurologic specialists who may focus their practice on a specific specialty, such as balance and gait disorders, that may be needed by those with PD. Exercising Your Speech and Voice System By: Struthers Parkinson Center Parkinson’s FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist offers exercise suggestions to strengthen the speech and voice system which can be affected by PD. Keeping Thinking and Verbal Skills Sharp By: Struthers Parkinson Center Parkinson’s FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist offers information and tips regarding the management of thinking and language issues in PD.

Parkinson’s Disease Resource List

Lee Silverman Voice Treatment® (LSVT®) (888) 438-5788 info@lsvtglobal.com www.lsvtglobal.com This organization developed and now trains speech-language therapists in the "LSVT Loud" method, and physical or occupational therapists in the "LSVT Big" method for PD. This non-pharmacological and non-surgical intervention may improve oral and other communications in individuals with PD. The toll-free number and website offer a state-by-state listing of therapists who are trained in these methods. Parkinson's Rehab Resource Center (888) 606-1688 Publisher: American Parkinson Disease Association This helpline connects those living with PD with a physical therapist who can answer questions about exercise, provide information about local programs and offer free educational materials about the benefits of exercise for people with Parkinson’s. Physical Therapy & PD: What You Need to Know By: Heather J. Cianci, P.T., M.S., G.C.S. Publisher: Parkinson’s Disease Foundation, 2011, 60 minutes www.pdf.org/en/parkinsononline This online seminar, a PDF PD ExpertBriefing, details the importance of physical therapy and provides practical tips for dealing with changes in functional abilities, the role of exercise and finding the right physical activity to fit the needs of people with PD. Physical Therapy in PD By: David Lehman, Ph.D., P.T. and Mark A. Hirsch, Ph.D. Publisher: Parkinson's Disease Foundation, 2010 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet offers information about the benefits of exercise and physical therapy that may improve some of the motor symptoms associated with PD. Subjects include an overview of research, as well as the implication of these studies for people with PD. Also offered in Spanish.

Learning About Parkinsonâ&#x20AC;&#x2122;s

Seeking Help from a Speech Pathologist By: Celia Bassich, Ph.D., CCC-SLP Publisher: National Parkinson Foundation, 2009 www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist offers understanding on how a speech pathologist can help a person with PD and how to seek their services. Speaking Effectively: A Strategic Guide for Speaking and Swallowing By: Bari Hoffman Ruddy, Ph.D., CCC-SLP and Christine Sapienza, Ph.D., CCC-SLP Publisher: American Parkinson Disease Association, 2008, 34 pages To order: (800) 223-2732 or www.apdaparkinson.org/usernd/publicationorder.asp This booklet provides information on speech, voice and swallowing functions related to PD. Information about the signs, symptoms, evaluations and treatment procedures are discussed. Strategies and tools to effectively communicate in daily activities are also included. Speech and Swallowing, Second Edition By: Marjorie L. Johnson, M.A., CCC-SLP Publisher: National Parkinson Foundation, 2006, 24 pages To order: (800) 327-4545 or www.parkinson.org/Parkinson-s-Disease/PD-Libra ry/NPF-Publications This booklet offers self-assessment tools for speech and swallowing, as well as tips for addressing problem areas. It also describes the role of a speech-language pathologist in Parkinson's care. Also offered in Spanish and Greek (online only). Speech Therapy in PD By: Lorraine Ramig, Ph.D., CCC-SLP and Cynthia Fox, Ph.D., CCC-SLP Publisher: Parkinson's Disease Foundation, 2010 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet offers information on speech and voice disorders sometimes experienced by people with PD. Subjects include causes of speech and voice impairment in Parkinson's and helpful speech and voice therapy treatments. Also offered in Spanish.

Parkinson’s Disease Resource List

Speech Training for Parkinson's By: Judy Clark Publisher: Jingles & Jangles Publishing, 2008, 30 pages with one audio CD This book and accompanying CD offers instruction and demonstrations on exercises in breathing, resonance, projection and overall voice production. Can be used by both practitioners and people with PD. Take Care of Your Voice By: Struthers Parkinson Center Parkinson’s FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This checklist offers suggestions on how to keep the throat and voice healthy when living with Parkinson’s. Talk To A Speech Clinician National Parkinson Foundation (800) 327-4545 http://forum.parkinson.org/index.php?/forum This online forum, moderated by a team of speech-language experts, answers questions regarding speech-related problems in people with PD.

Nutrition American Dietetic Association (ADA) (800) 877-1600 sales@eatright.org www.eatright.org This organization maintains a national directory of registered dietitians that a person living with PD may find helpful. Ask About Nutrition National Parkinson Foundation http://forum.parkinson.org/index.php?/forum This online forum, moderated by a registered dietitian, allows individuals to anonymously ask questions about dietary matters and Parkinson's.

Learning About Parkinson’s

Cook Well, Stay Well with Parkinson's Disease: Super Foods for Super People By: Kathrynne Holden, M.S., R.D. Publisher: Five Star Living, Inc., 2003, 211 pages To order: (877) 565-2665 or https://secure.clarkecomputer.com/nutritionucanlivewith.com/order.htm This book, written by a registered dietitian and PD professional, features popular recipes that are rich in the nutrients most needed by those living with PD. The Dysphagia Cookbook By: Elayne Achilles, Ed.D. Publisher: Cumberland House, 2003, 202 pages This offers recipes which focus on flavor, presentation, texture, aroma and color and may be especially helpful to those whose eating options are limited by chewing and swallowing difficulties. Easy-to-Swallow, Easy-to-Chew Cookbook: Over 150 Tasty and Nutritious Recipes for People Who Have Difficulty Swallowing By: Donna L. Weihofen, R.D., M.S., JoAnn Robbins, Ph.D., CCC-SLP and Paula A. Sullivan, M.S., CCC-SLP Publisher: Wiley Publishing, 2002, 256 pages This book offers recipes intended to be both tasteful and nutritious for those people who experience swallowing difficulties. Eat Well, Stay Well with Parkinson's Disease: A Nutrition Handbook for People with Parkinson's By: Kathrynne Holden, M.S., R.D. Publisher: American Book Company, 1998, 156 pages To order: (877) 565-2665 or https://secure.clarkecomputer.com/nutritionucanlivewith.com/order.htm This book, written by a registered dietitian and PD professional, includes recipes and menus specific to the needs of those with PD — especially those who may be working to coordinate meals with medication timing, nausea, constipation, weight loss, protein timing and more.

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

Good Nutrition in Parkinson's Disease By: Jenny E. Loew, M.S., R.D., C.S.N., L.D.N. and Carol Pratt, L.D.N. Publisher: American Parkinson Disease Association, 2007, 20 pages To order: (800) 223-2732 or www.apdaparkinson.org/usernd/publicationorder.asp This booklet addresses the critical role of nutrition in PD and explains how a healthy diet can increase energy, maximize the potential of medications, and promote overall well-being. Recipes for meals that extend protein in the diet and limit drug-nutrient interactions are included in this booklet. Also available in Italian. I-Can't-Chew Cookbook, Second Edition By: J. Randy Wilson Publisher: Hunter House, 2003, 240 pages This book contains recipes for meals that are soft and nutritious, compiled here with the intention of helping those with chewing and swallowing difficulties. Nutrition and Parkinson's Disease By: Christine C. Tangney, Ph.D., F.A.C.N., C.N.S. Publisher: Parkinson's Disease Foundation, 2010, 60 Minutes www.pdf.org/en/parkinsononline This online seminar, a PDF PD ExpertBriefing, discusses the nutritional issues that people with Parkinsonâ&#x20AC;&#x2122;s often face, including: weight issues; adequate intake of water, fiber, vitamin B12 and vitamin D; and the relationship between protein intake and the effectiveness of levodopa. Nutrition and Parkinson's Disease: What Matters Most? By: Karol Traviss, M.Sc., R.D. Publisher: Parkinson's Disease Foundation, 2010 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet discusses the complex nutritional issues faced by people with PD. Topics include tips on how to maintain a balanced diet, bone health and bowel regularity, while managing medications and nutritional priorities. Also offered in Spanish.

Learning About Parkinson’s

Nutrition Matters By: Kathrynne Holden, M.S., R.D. Publisher: National Parkinson Foundation, 2007, 59 pages To order: (800) 327-4545 or www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This booklet, witten by a registered dietitian and PD professional, highlights the importance of good nutrition in managing the effects of PD. Some of the topics covered include bone health, constipation, adequate hydration and unintended weight loss. Menus and suggested recipes are included. Also offered in Spanish and Greek (online only). Parkinson's Disease and Constipation: A Nutrition Audiotape and Guidebook for People with Parkinson's By: Kathrynne Holden, M.S., R.D. Publisher: Five Star Living, Inc. To order: (877) 565-2665 or www.nutritionucanlivewith.com/tape.htm This CD (also available as an audio cassette) and booklet, written and designed by a registered dietitian and PD professional, offers information on why constipation is common in Parkinson’s, what the effects of chronic constipation may be, how to control it, and more. Soft Foods for Easier Eating Cookbook By: Sandra Woodruff, R.D. and Leah Gilbert-Henderson, Ph.D. Publisher: Square One Publishers, 2007, 309 pages This book, written by a nutritionist, offers recipes that can be adapted to address certain health needs such as less or more calories, fiber, salt and more — a flexibility that may be helpful to people with PD. Steps for a Healthy Diet By: Struthers Parkinson Center Parkinson’s FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist offers tips on making good dietary choices to positively impact good health and well-being when living with Parkinson's.

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

Exercise Aquatic Exercise for Parkinson's Disease By: Julie See, B.S., Laurie Denomme, B.S., Kathi Sims, R.N., Helen Tilden, R.N. and Mary O. Wykle, Ph.D. Publisher: American Parkinson Disease Association, 2008, 25 pages To order: (800) 223-2732 or www.apdaparkinson.org/usernd/publicationorder.asp This booklet is intended to assist people with Parkinson's, their family members and care partners and fitness professionals better understand the role of aquatic exercise on physical and mental wellness. Recommended exercises address joint flexibility, muscular strength, endurance and aerobic ability. Be Active: An Exercise Program for People with Parkinson's Disease By:Terry Ellis, P.T., Ph.D., N.C.S.,Tami Rork, P.T., M.S.P.T. and Diane Dalton, P.T., D.P.T., O.C.S. Publisher: American Parkinson Disease Association, 2008, 45 pages To order: (800) 223-2732 or www.apdaparkinson.org/usernd/publicationorder.asp The booklet offers information on exercises designed specifically for people with Parkinson's including those that target motion, stretching and strengthening as well as hints to improve mobility. Also offered in German and Italian. Dance for PDÂŽ Program Brooklyn Parkinson Group/ Mark Morris Dance Group (718) 522-0553 info@brooklynparkinsongroup.org www.brooklynparkinsongroup.org This nonprofit organization and nationally recognized New York-based dance center have developed dance classes specifically for people with Parkinson's disease. MMDG/BPG offer training workshops, master demonstration classes and ongoing teacher training for individuals interested in starting a dance class in their community. Delay the Disease: Exercise and PD By: David Zid, B.A., A.C.E., A.P.G. and Jackie Russell, R.N., B.S.N., C.N.O.R. Publisher: David Zid, 2007, 70 pages To order: www.delaythedisease.com This Parkinson's fitness program, available in book or DVD format, is intended to help minimize tremors and improve flexibility, stability, balance and strength.

Learning About Parkinson’s

Easy Tai Chi-Qigong: For People of All Ages and Especially for Seniors and People with Parkinson's By: Don and Victoria Fiore To order: (480) 759-0048 or www.taichihealthproducts.com/videos.php This DVD program, designed by certified Tai Chi and Qigong instructors, demonstrates this ancient form of movement often thought to help improve balance, strength and even mood and memory. Also offered in Spanish. Fitness and Flexibility: The Role of Exercise in PD Management By: Struthers Parkinson Center Parkinson’s FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist reviews the importance of exercise, what kinds of exercise to do, and other considerations to make when embarking on an exercise plan. Fitness Counts, Third Edition By: Heather Cianci, P.T., M.S., G.C.S. Publisher: National Parkinson Foundation, 2006, 35 pages To order: (800) 327-4545 or www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This booklet contains descriptions and explanations of specific exercises that can help to maintain flexibility, strength, and aerobic conditioning. Photographs and drawings of these exercises are included. Also offered in Spanish and Greek (online only). Fitness Plan I — Out of Bed By: David Zid, B.A., A.C.E., A.P.G. Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This checklist offers six exercises designed to help improve mobility for the task of getting in and out of bed.

Parkinson’s Disease Resource List

Fitness Plan II — Posture By: David Zid, B.A., A.C.E., A.P.G. Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This checklist offers five standing exercises to help improve and reduce issues related to posture in PD. Fitness Plan III — Getting off of the Floor By: David Zid, B.A., A.C.E., A.P.G. Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist offers exercise activities and strategies to help avoid and prepare oneself in the event of a fall. Functional Aquatic Fitness Training for Parkinson's Disease Publisher: Sprint Aquatics To order: (800) 235-2156 or www.sprintaquatics.com/prodinfo.asp?number=871 This DVD offers aquatic fitness training for people living with PD. The exercises are designed to help improve balance, coordination, posture, flexibility and mobility, and can increase cardiovascular and muscular endurance. Motivating Moves for People with Parkinson's By: Janet Hamburg, 2004 To order: (913) 341-8828 or www.parkinsonheartland.org This DVD/video, originally co-produced with PDF, includes seated exercises specifically designed to address Parkinson's movement challenges such as balance, flexibility, walking, posture, vocal range and facial expression. Move It! An Exercise and Movement Guide for Parkinson's Disease By: Kevin Lockette, P.T. Publisher: Langdon Street Press, 2009, 132 pages This program, available in book or DVD format, is a movement and exercise program for people with Parkinson’s disease and was created by a physical therapist. A medications overview and information on adaptive devices are included.

Learning About Parkinson’s

Parkinson's Disease and the Art of Moving By: John Argue Publisher: New Harbinger Publications, 2000, 220 pages To order: (510) 985-2645 or www.parkinsonsexercise.com This book and DVD offer a comprehensive exercise program for people living with PD that includes helpful suggestions for dealing with specific problems like falling, freezing or turning. Parkinson's Disease & Activities of Daily Living By: John Argue and Jeanne Csuy, P.T. To order: (510) 985-2645 or www.parkinsonsexercise.com This DVD offers strategies for coping with daily mobility issues that people with PD may face, such as getting out of a car or getting up after a fall. Sit and Be Fit (509) 448-9438 By: Mary Ann Wilson, R.N. To order: sitandbefit@sitandbefit.org or www.sitandbefit.org The DVD offers a seated exercise program, and was created by a registered nurse in conjunction with a team of physical therapists, doctors and exercise specialists. It is designed for older adults and people with chronic conditions such as PD. Tai Chi and Yoga: Improving the Mind-Body Connection By: Struthers Parkinson Center Parkinson’s FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist provides an educational overview of the benefits and meditational forms of Tai Chi and Yoga. Tai Chi Parkinson's Exercises www.parkinsonsexercises.com This DVD, developed by a certified Tai Chi instructor living with Parkinson's disease, is intended to improve balance, coordination and mood for people living with Parkinson's.

Parkinson’s Disease Resource List

Yoga for Movement Disorders: Rebuilding Strength, Balance and Flexibility for Parkinson's Disease and Dystonia By: Renée Le Verrier Publisher: Merit Publishing, 2008, 128 pages This book, authored by a certified yoga instructor and person living with PD, offers techniques intended to help rebuild strength, flexibility, physical and emotional balance for those living with PD and other movement disorders.

Art and Music Art and Aging www.artandaging.com This website aims to improve the quality of life for older adults with Parkinson’s and other diseases, by providing art therapy tools, education and training. The Center for Touch Drawing (800) 989-6334 (orders only) center@touchdrawing.com www.touchdrawing.com This website offers information on touch drawing, a form of artwork that involves placing a piece of paper over a painted/wet surface and using the hands and fingers to "paint" a picture on the opposite side of the paper. Although this resource is not specifically for a person with PD, individuals living with the disease may find it helpful. Creativity and Parkinson's Project Parkinson's Disease Foundation (800) 457-6676 creativity@pdf.org www.pdf.org/en/creativity This initiative seeks to explore, support and encourage the possible therapeutic value of creativity in Parkinson's. The online gallery features artistic creations by people living with Parkinson's, along with their personal stories on how creativity helps them cope with the effects of the disease.

Learning About Parkinson’s

Musicophilia: Tales of Music and the Brain, Revised and Expanded Edition By: Oliver Sacks, M.D., F.R.C.P. Publisher: Vintage, 2008, 448 pages www.musicophilia.com This book, written by the author of Awakenings, utilizes scientific studies as well as patient profiles to suggest that individuals with neurological diseases like Parkinson's may receive symptom modification benefits through the use of music. Parkinson's Quilt Project Parkinson’s Disease Foundation quilt@pdf.org www.pdf.org/en/quilt This project includes over 600 quilt panels created by members of the PD community that highlight the global impact of the disease. Sections of the quilt are available for rental and display to the general public.

Complementary and Alternative Therapies Massage Therapy: Is It for You? By: Struthers Parkinson Center Parkinson’s FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist discusses the benefits of massage as well as other considerations such as types and what to expect during a massage. National Center for Complementary and Alternative Medicine (NCCAM) http://nccam.nih.gov/ This federal arm of the National Institutes of Health conducts and supports research, trains researchers and disseminates authoritative information to the public and professionals in the field of Complementary and Alternative Medicine (CAM). Those with PD may find the website useful when evaluating CAM treatments.

Parkinson’s Disease Resource List

What Your Doctor May Not Tell You About Parkinson's Disease: A Holistic Program For Optimal Wellness By: Jill Marjama-Lyons, M.D. and Mary J. Shomon Publisher: Grand Central Publishing, 2003, 400 pages This book addresses the holistic approaches to treating Parkinson's that can include traditional as well as complementary and alternative therapies.

Living with a Parkinson’s Diagnosis Key Resource: PINS: Parkinson's Information Service HelpLine Parkinson's Disease Foundation (800) 457-6676 info@pdf.org www.pdf.org/en/ask_expert

Coping with Parkinson’s Agency for Health Care Research and Quality (AHRQ) Office of Communications and Knowledge Transfer (301) 427-1364 www.ahrq.gov This federal agency is under the Department of Health and Human Services and its research offers information on how to choose health plans, doctors or hospitals based on their performance. It also creates and distributes personal health guides to help individuals keep track of their health care, and improve communication with their providers. The website offers a section in Spanish.

Learning About Parkinsonâ&#x20AC;&#x2122;s

Ask The Doctor Online Forum National Parkinson Foundation http://forum.parkinson.org/index.php?/forum This online forum, moderated by PD specialists, offers registered visitors the chance to ask and obtain answers to PD-related medical questions. Dr. Andrew Weil's Recommendations for Healthy Aging By: Cynthia A. Holmes, Ph.D. Publisher: American Parkinson Disease Association, 2008 To order: (800) 223-2732 or www.apdaparkinson.org/usernd/publicationorder.asp This article provides recommendations for people with Parkinson's on how to live and age well with PD. Eldercare Locator Service Area Agency on Aging (800) 677-1116 www.eldercare.gov This government-supported program can refer and link seniors to supportive community resources including caregiver programs, home health services, nutrition services, personal care services, emergency response systems for the home-bound, telephone reassurance programs and socialization events. Every Victory Counts By: Monique Giroux, M.D. and Sierra Farris, P.A.-C., M.P.A.S. Publisher: The Davis Phinney Foundation, 2010, Seven Sections To order: (866) 358-0285 or www.everyvictorycounts.org This program (and accompanying manual), offers resources for living well with PD. Users can register and receive downloadable updates to add to their manual. Materials offered include diagnosis, exercise, emotional health, intimacy, and more.

Parkinson’s Disease Resource List

A Meditation To Help With Parkinson's Disease By: Belleruth Naparstek Publisher: Health Journeys, 2006, 51 minutes This CD offers guided imagery to promote relaxation, regulate mood, encourage balance and good posture, increase symptom control over freezing, cramping and/or tremors, support energy, and help with self-esteem and motivation. My Family Health Portrait (888) 478-4423 ncicb@pop.nci.nih.gov https://familyhistory.hhs.gov/fhh-web/home.action The website helps to compile and organize one’s family health history. The information remains private; but if one chooses, it can be shared with family members, who can add their own information. It can also be sent to one’s health care practitioner. The site has a glossary of medical terms that is easy to search and is also available in Spanish. NPF Helpline National Parkinson Foundation (800) 4PD-INFO/ (800) 473-4636 www.parkinson.org/helpline This helpline offers information (in English and Spanish) about PD, emotional support and referrals to health professionals and community resources. Sexuality & Intimacy By: Struthers Parkinson Center Parkinson’s FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist offers perspective and suggestions to promote and renew sexuality and intimacy, which is sometimes affected by those living with PD.

Learning About Parkinson’s

Sharing the Diagnosis: Telling Others You Have Parkinson's By: Struthers Parkinson Center Parkinson’s FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist offers suggestions for sharing information about a PD diagnosis with friends and family. Stages of Adjustment to Parkinson's By: Struthers Parkinson Center Parkinson’s FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist addresses the reactions, feelings and adaptations typically experienced by those recently diagnosed with Parkinson’s.

Young Onset Parkinson’s Disease APDA National Young Onset Center (877) 223-3801 apda@youngparkinsons.org www.youngparkinsons.org This organization provides information and supportive resources specific to the experiences faced by those diagnosed with PD before age 50. Issues covered include relationships, normal psychological and/or emotional struggles, career and financial planning for the long term, and updates current medical research. Clognition indigogo44@yahoo.com www.clognition.org This website, developed by a woman living with young onset Parkinson’s disease, provides information, helpful coping tips and links to other PD-related websites.

Parkinson’s Disease Resource List

Practical Advice:

Building a Support Network A diagnosis of Parkinson’s disease can bring with it a wide range of emotions that may include shock, fear, denial, sadness and anger. Although time may lessen the intensity of such feelings, they may not go away completely. A strong support network from a variety of formal and informal sources can help address the longterm emotional impact of a PD diagnosis. Support Groups: These groups can be a good source of social and emotional support and information on living well with Parkinson’s. While some groups are facilitated by professionals such as social workers or nurses, other groups are led by people with Parkinson’s or their care partners. Each support group has its own personality and it may take several visits to find the best fit. To find a group, contact PDF at (800) 457-6676. If one is not available in your community, there are several Internet-based groups and listservs that may be helpful. Professional Counseling Services: A mental health professional specializing in chronic disease can offer coping skills, stress management techniques, therapies to reduce depression and anxiety and local resources. To locate a licensed professional, contact the American Psychological Association at www.apahelpcenter.org, the National Association of Social Workers at www.helpstartshere.org or the American Association for Marriage and Family Therapy at www.therapistlocator.net. Case Management Services: For individuals 60 years of age or older, several federal, state and local programs may be available. The US Administration on Aging Eldercare Locator at www.eldercare.gov lists local providers for these programs and services. Another resource may be Professional Geriatric Care Managers (PGCM), who can offer a range of services that include managing a move, arranging for in-home care and assisting with financial, legal and medical matters. Their services are primarily on a private pay basis. To locate a PGCM, contact the National Association of Professional Geriatric Care Managers at www.caremanager.org. Community Health Networks: Hospitals, health centers/clinics and senior centers can offer programs such as exercise classes, nutritional counseling, caregiving support and more. Other sources of valuable help include nutritionists, creativity therapists, gerontological and home care nurses, and physical, occupational and speech-language therapists.

Learning About Parkinson’s

Movers & Shakers pdadvocates@aol.com www.pdoutreach.org This support and advocacy organization for those dealing with young onset Parkinson's disease and other movement disorders provides support, education, and awareness to people living with the disease and their families. Young Onset Online Forum National Parkinson Foundation http://forum.parkinson.org/index.php?/forum This online forum offers those with young onset Parkinson’s disease a place to connect with others with the same diagnosis. Young Onset Parkinson Conferences American Parkinson's Disease Association (APDA) and National Parkinson Foundation (NPF) www.youngparkinsons.org This annual series of conferences is for people living with young onset Parkinson’s disease and offers information, support resources and more. Webcasts of past events are available. Young Parkinson's Handbook: A Guide for Patients and their Families By: Michael Rezak, M.D., Ph.D., Susan Reese, R.N., L.C.S.W. and Julie Sacks, L.C.S.W. Publisher: American Parkinson Disease Association, 2008, 99 pages To order: (800) 223-2732 or www.apdaparkinson.org/usernd/publicationorder.asp This booklet addresses the unique aspects of living with young onset PD and offers guidance on managing some of the medical, psychological and financial issues sometimes experienced.

Finding Support American Association for Marriage and Family Therapy (AAMFT) (703) 838-9808 central@aamft.org www.therapistlocator.net This organization and its website offer a directory of marriage and family therapists who have been trained to help individuals, couples and families with specific problems, including depression and coping with a disease.

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

American Psychological Association (APA) (800) 374-2721 helping@apa.org www.apa.org/helpcenter/index.aspx This organization of professional psychologists, who are trained to help people cope with life's problems, offers a psychologist locator service accessible by their phone and website. Additionally, information is offered on a multitude of issues affecting physical and emotional well-being. Brain Talk Communities braintalk@gmail.com http://braintalkcommunities.org/forums This online forum offers several Parkinson's disease specific communities where users can find support and discuss issues of daily living. Catholic Charities: Agency Directory (703) 549-1390 info@catholiccharitiesusa.org www.catholiccharitiesusa.org/NetCommunity/Page.aspx?pid=292 This organization offers a broad range of services spanning all age groups and all religious affiliations. Sliding-fee counseling services are offered. How to Start a Parkinson's Disease Support Group Publisher: American Parkinson Disease Association, 2008 To order: (800) 223-2732 or www.apdaparkinson.org/usernd/publicationorder.asp This booklet provides tips for starting a Parkinson's disease support group. Looking Forward, Moving Ahead!: Support Group Leaders Manual Publisher: National Parkinson Foundation, 39 pages To order: (800) 327-4545 or www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This booklet provides information on starting and facilitating a Parkinson's disease support group.

Learning About Parkinson’s

Maintaining Healthy Relationships By: Struthers Parkinson Center Parkinson’s FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This checklist offers perspective and ideas for sustaining meaningful relationships. National Private Duty Association (317) 663-3637 info@privatedutyhomecare.org www.privatedutyhomecare.org This organization maintains a directory of home care providers that offer companion care and homemaker services. All employees have undergone specific training and agencies are fully responsible for payroll and taxes. NeuroTalk http://neurotalk.psychcentral.com/forum34.html This online forum offers Parkinson's specific community support and discussion on issues related to daily living. Nurturing a Hopeful Spirit By: Struthers Parkinson Center Parkinson’s FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This checklist stresses the importance of creating and receiving support from a variety of sources when living with PD, and offers suggestions for finding support. Open Online PD Discussion Forum National Parkinson Foundation http://forum.parkinson.org/index.php?/forum This online forum offers open, unmoderated discussion among people living with PD and/or their care partners. Posts in this forum are not anonymous.

Parkinson’s Disease Resource List

Parkinson Information Exchange Network Online www.parkinsons-information-exchange-network-online.com This email discussion group, is one of the largest online Parkinson’s communities. The Toronto-based group shares information, advice, friendship and news on PD. Patients Like Me support@patientslikeme.com www.patientslikeme.com This for-profit online community enables people living with PD to share detailed information about their symptoms, treatments and medications with other patients, health care professionals and industry organizations that are trying to treat the disease. Social Worker Locator National Association of Social Workers www.helpstartshere.org/find-a-social-worker This website offers a searchable directory of credentialed social workers. Starting a Support Group Publisher: Parkinson’s Disease Foundation, 2010 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet offers suggestions for starting a PD support group.

Staying Independent 34 Helpful Hints to Improve the Quality of Life of People with Parkinson's Publisher: American Parkinson Disease Association, 2008 To order: (800) 223-2732 or www.apdaparkinson.org/usernd/publicationorder.asp This brochure offers 34 tips on managing the day-to-day challenges of PD and achieving the greatest degree of independence. Assistance Dogs International, Inc info@assistancedogsinternational.org www.assistancedogsinternational.org This organization offers a website-only membership directory of Service dog providers in the US. Dogs trained in “Service” work can help address some of the challenges associated with PD, such as lending balance support, picking up dropped or requested objects, assisting in medical crises and more. To find local accredited Service dog providers, click on “Membership Programs List & Link” and then “Accredited Members.”

Learning About Parkinson’s

Parkinson's Disease: 300 Tips for Making Life Easier, Second Edition By: Shelley Peterman Schwarz Publisher: Demos Health, 2006, 140 pages This book offers practical ideas on managing PD through the use of assistive technologies, helpful aids and community resources. The subjects covered include everything from home modification tips to travel information. Pine Mountain Danes Association of Driver Rehabilitation Specialists (609) 593-8804 www.pinemountaindanes.org This nonprofit organization, founded by a person living with Parkinson's, trains and promotes the use of Great Danes as mobility assistance dogs. Staying Active: Hobbies and Leisure Pursuits By: Struthers Parkinson Center Parkinson’s FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This checklist offers suggestions for how to stay active through physical, mental and social stimulation as well as by engaging in activities that promote relaxation. Visiting Nurse Associations of America (VNAA) (202) 384-1420 vnaa@vnaa.org www.vnaa.org This organization maintains a national directory of Visiting Nurse Associations (VNAs), which offer skilled nursing, home health aide services, case management, counseling and rehabilitation services. Walk Around the House, Don't Fall: Keep Up Your Independence and Stay Safe at Home By: Jyl Batterman www.walkaroundthehouse.com This audio CD and accompanying handbook are based on the author's 23 years of experience in the occupational therapy field. They provide many easy-to-follow recommendations for fall prevention and safety in the home.

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

Driving AAA Foundation for Traffic Safety (202) 638-5944 www.seniordrivers.org This organization offers seniors a safe driving self-assessment tool which can be ordered or downloaded for free from the website. Additionally, information is available on safe driving tips, supplemental transportation options, travel tips and more. AARP Driver Safety Online Course Publisher: AARP (800) 350-7025 customerservice@aarpdriversafety.org www.aarpdriversafety.org This online course enables participants to refresh their understanding of the rules of the road while also providing information on age-related changes that can affect driving skills. Additionally, this program offers tips intended to help decrease accidents and violations. Certified Driver Rehabilitation Specialists Directory Association of Driver Rehabilitation Specialists (866) 672-9466 info@driver-ed.org www.driver-ed.org/custom/directory-cdrs This organization offers referrals to Driver Rehabilitation Specialists who can provide on- and off-road tests to see if and how PD is affecting driving skills. Training is available for those who can continue to drive safely. Driving and Parkinson's Disease: The Crossroads of Independence & Safety By: Beth Israel Deaconess Medical Center, Boston, MA, 2008 http://link.brightcove.com/services/player/bcpid1541042976?bctid=7415795001 This online video offers education, guidance and perspective on the effects of PD on driving skills. It explores the specific symptoms that could affect driving ability and shares information on the DriveWise assessment program available at Boston's Beth Israel Deaconess Medical Center.

Learning About Parkinson’s

Driving and Parkinson's Disease - When is it Time to Give Up the Keys? Publisher: Parkinson's Disease Foundation, 2005 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet offers information on how Parkinson's disease can affect driving. Subjects covered include assessment options to determine driving fitness and tips for what family and friends can do to help. Also offered in Spanish. Driving When You Have Parkinson's Disease Publisher: The National Highway Traffic Safety Administration (NHTSA) in partnership with the American Parkinson Disease Association and the National Parkinson Foundation, 2003 To order: (888) 327-4236 or www.nhtsa.gov/people/injury/olddrive/Parkinsons%20Web/index.html This brochure offers information on driving and Parkinson’s and covers such topics as how PD can affect driving, what to do when PD affects driving skills, seeking alternate transportation resources and more. On the Road: Keeping Driving Skills Sharp By: Struthers Parkinson Center Parkinson’s FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist offers suggestions to help ensure and maintain optimal driving skills when living with PD.

Traveling Advice for Patients Going to the Emergency Room or Traveling Publisher: American Parkinson Disease Association, 2008 To order: (800) 223-2732 or www.apdaparkinson.org/usernd/publication Order.asp This card includes tips to remember when going to a hospital and space for patient and doctor contact information. It also includes translations in German, French, Italian and Spanish, which say, "I have Parkinson's disease. Please allow me time for communication."

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

Barrier-Free Travel: A Nuts and Bolts Guide for Wheelers and Slow Walkers, Third Edition By: Candy B. Harrington Publisher: Demos Health, 2009, 200 pages This book provides current travel rules and regulations affecting access to places outside of the US. For those with PD, the useful tips, tools and resources included may offer helpful ideas to prepare for more successful travel. I Can Travel! (908) 754-2007 www.i-can-travel.com This website offers a range of handicapped-friendly travel options including special cruises, tours and discounts. Well-researched advice is offered on how to plan a trip properly and what questions to ask before traveling with a disability. Making a Move with Parkinson's By: Bruce Talbot Publisher: Parkinson's Disease Foundation, 2007 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet offers practical steps for people with Parkinson's to take before moving to a new residence. Subjects include how to find a new doctor and support resources. Notification Card Publisher: Transportation Security Administration (TSA), 2010 www.apdaparkinson.org/userND/TSA_notificationcards.pdf This card can be used by people who have a disability, medical condition or medical device that may affect their security screening. While it will not exempt anyone from screening, the card will make the screener aware why movements and other behaviors are being caused. Traveling with PD By: Peggy Willocks Publisher: Parkinson's Disease Foundation, 2006 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet offers information and guidance about traveling with PD. Subjects covered include practical tips on preparations to make the journey easier and how to manage medications when traveling.

Learning About Parkinson’s

Hospitalization Advice for Patients Going to the Emergency Room or Traveling Publisher: American Parkinson Disease Association, 2008 To order: (800) 223-2732 or www.apdaparkinson.org/usernd/publicationOrder.asp This card includes tips to remember when going to a hospital and space for patient and doctor contact information. It also includes translations in German, French, Italian and Spanish, which say, "I have Parkinson's disease. Please allow me time for communication." Five Frequently Asked Questions about Hospitalization for Parkinson's Patients By: Kelvin L. Chou, M.D., Michael S. Okun, M.D., Hubert H. Fernandez, M.D., Diane Breslow, M.S.W., L.C.S.W. and Joseph H. Friedman, M.D. Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This article offers those living with PD suggestions to better prepare for future hospitalizations, even when they are not Parkinson’s-related events. Information for Your Nurse and Doctor for Hospitalization Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist offers suggestions on what can be done to make a hospitalization run smoothly for someone living with PD. Medical Alert Card Publisher: National Parkinson Foundation To order: (800) 327-4545 or www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This card can be carried by a person with PD so that in the event of unplanned hospitalization, medical information will be available for the hospital staff, along with a list of medications that people with PD should not take. When Should Parkinson's Disease Patients Go to the Emergency Room? By: Joseph H. Friedman, M.D. Publisher: American Parkinson Disease Association, 2007 To order: (800) 223-2732 or www.apdaparkinson.org/usernd/publicationorder.asp This article examines the role of the person with PD, family and Parkinson's disease physician when visiting the emergency room.

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

Accessing Adaptive Equipment and Supplies Abledata (800) 227-0216 abledata@macrointernational.com www.abledata.com This organization provides objective comparisons for assistive technology/ rehabilitation equipment. The website also offers information on a variety of other disability resources for travel, housing and more. Home Modification Resources (213) 740-1364 homemods@usc.edu www.homemods.org This website offers an extensive directory of home modification resources that can aid in the limiting of household falling episodes and other accidents. Some resources listed are for a particular state, but most are available nationwide. This resource includes nonprofit, private and commercial sites. Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) (703) 524-6686 resnaTA@resna.org www.resna.org This organization offers a state-by-state directory of assistive technology offices, which can help people with PD tap into resources to affordable equipment, such as walkers, wheelchairs and more.

Sources for Buying Equipment and Supplies Adaptations by Adrian

The Parkinson Shop

Sammons Preston

(888) 214-8372 www.adaptationsbyadrian.com

(877) 390-9454 info@parkinsonshop.com www.parkinsonshop.com

(800) 323-5547 www.sammonspreston.com

Briggs

(800) 247-2343 www.briggscorp.com

Personal Touch Health Care Apparel, Inc.

Buck & Buck

(888) 626-1703 www.nursinghomeapparel.com

(800) 458-0600 info@buckandbuck.com www.buckandbuck.com

Professional Fit (800) 422-2348 www.professionalfit.com

Sears Health &Wellness (800) 326-1750 www.sears.com/shc/s/v_10153_12 605_Health+%26+Wellness

Youcantoocan, Inc. (888) 663-9396 www.youcantoocan.com

Learning About Parkinson’s

Personal Stories Always Looking Up: The Adventures of An Incurable Optimist By: Michael J. Fox Publisher: Hyperion, 2009, 288 pages This book chronicles the past decade for actor and PD activist Michael J. Fox, revealing the roles that work, faith and family have played in helping him live with the challenges of PD. Carolyn's Journey: From Parkinson's Disease to a Nearly Normal Life After Deep Brain Stimulation By: Victor Anderson Publisher: DeForest Press, 2006, 105 pages This book shares the journey of Carolyn Anderson and her diagnosis with PD through the eyes of her husband and primary care partner. The author talks openly about the challenges of diagnosing PD, dealing with doctors and insurance companies, and available treatments for PD. The Challenge of a Lifetime: Backpacking with Parkinson's By: Pete Ferrari Publisher: Pete Ferrari, 2010, 224 pages This book offers the author’s inspirational story about taking several wilderness backpacking trips while living with PD. He shares his experiences about confronting strenuous conditions and discusses challenging oneself to overcome obstacles and lead an active life with PD. Deep Brain Diary: My Life as a Guy with Parkinson's Disease and Brain Surgery Volunteer By: Bill Schmalfeldt Publisher: CreateSpace, 2010, 226 pages This book chronicles one man's personal story of being diagnosed with Parkinson's disease, volunteering for experimental deep brain stimulation surgery, and his experiences post-surgery. The author utilizes a gallows kind of humor while sharing his first-hand perspective of living with PD.

Parkinson’s Disease Resource List

Practical Advice:

Getting Involved with the PD Community Tell Your Story. Each of us is unique and each of our stories is unique. For that reason, it is important to let others know that you have Parkinson's and you need their help to find a cure. Find a Good Support Group. If there isn't one, start one. Learning from your peers and helping each other cope can be the difference between having PD and “living with PD.” Contact PDF at (800) 457-6676 or info@pdf.org to find support groups in your community. Join the Parkinson’s Action Network (PAN). By working with PAN, you'll meet others committed to making sure Congress addresses the needs of the Parkinson’s community. Contact PAN at (800) 850-4726 or www.parkinsonsaction.org. Join a Clinical Trial. The only way new medications, treatments and most importantly, a cure, will become available is if people get involved in clinical trials. Visit the PDtrials website (www.PDtrials.org) to find out what trials are currently recruiting new participants. Become a Parkinson’s Advocate in Research. Join research advocates working in communities throughout the US to bring educated consumer voices to important issues in Parkinson’s therapy development. Visit www.pdf.org/pair to learn more. Attend a Conference, Retreat or Educational Symposium. Take advantage of opportunities to learn more about the disease. The better educated you are, the better you are able to educate others about PD. Participate in or Start an Awareness Event or Fundraiser. Host a round of “Parkinson’s Trivia” at a local restaurant, set up an information booth at a craft show, participate in a walk or run to raise funds for PD research or hold a bake sale or other event. Remember, April is Parkinson’s Awareness Month, so hosting an event or fundraiser at this time can be particularly powerful. For more ideas and practical suggestions about how to hold an event and spread the word about it in your local press, order PDF’s Parkinson’s Awareness Month Toolkit by calling (800) 457-6676. Most important, tell your story. Make your voice heard. — James Trussell, Parkinson’s Advocate

Learning About Parkinson’s

Deep Brain Stimulation: A New Treatment Shows Promise in the Most Difficult Cases By: Jamie Talan Publisher: Dana Press, 2009, 158 pages To order: (212) 223-4040 or www.dana.org/news/danapressbooks This book discusses how DBS is being used to help improve quality of life for many, including those diagnosed with PD. Defying Despair: Feed the Mind, Train the Body, Nourish the Soul By: Anthony Scelta Jr. Publisher: Myson Publishing, Inc., 2004, 176 pages This book, written by a person newly diagnosed with PD, shares the author’s first-year battle with young onset Parkinson’s disease. The author hopes to provide an inspirational story for others while sharing his own mind-body strategy that he found to be so helpful early on. The Dizzy Disease: When Your World Starts to Spin By: A.E.P. (Ed) Wall Publisher: AuthorHouse, 2006, 124 pages This book offers a personal account of life with Olivopontocerebellar Atrophy — a disease that can be confused with Parkinson’s. The writer describes his experiences before and after the diagnosis of this rare disease and how he uses his network of support to help him manage his life. Dumb Bells & Dopamine: A Parkinson's Success Story By: Arthur W. Curren Publisher: AuthorHouse, 2005, 160 pages This book, whose author was diagnosed with PD in 1981, offers a rigorous exercise approach that has helped him control the disease and allowed him to lessen his levodopa therapy. He explains the theory of why exercise may help in the management of Parkinson’s.

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

Finding Meaning with Charles: Caregiving with Love Through a Degenerative Disease By: Janet Edmunson Publisher: JME Insights, 2006, 308 pages This book offers practical advice and a philosophical perspective on caregiving, based on the author's personal experience while caring for her husband, who lived with a Parkinson's Plus Syndrome. Flying High Without Wings: Living with Parkinson Disease: A Caregiver's Story By: Selma Holme Publisher: GSelms Books, 2008, 80 pages This book offers information on the social, emotional, and cognitive changes that can take place when living with PD and offers some strategies to cope with these changes. The author also sets out to underscore how a positive attitude, determination and perseverance can contribute to living a meaningful and productive life. The First Year â&#x20AC;&#x201D; Parkinson's Disease: An Essential Guide for the Newly Diagnosed By: Jackie Hunt Christensen Publisher: De Capo Press, 2005, 360 pages This book, written by a person living with Parkinson's, offers information about the disease, treatment options, diet, exercise, social concerns, emotional issues and the importance of networking with others. A Funny Thing Happened on the Way to the Future: Twists and Turns and Lessons Learned By: Michael J. Fox Publisher: Hyperion, 2010, 112 pages This book, filled with Michael J. Fox's personal stories, is written in a warm, optimistic and humorous form and makes the case that real learning happens when "life goes skidding sideways."

Learning About Parkinson’s

Growing Up With Bob By: Darrell Bright Publisher: Llumina Press, 2008, 292 pages This book offers a biographical account of the bond shared between two cousins, their lives, and the admiration the author had for his "brother," particularly as his elder cousin battled Parkinson's disease. h.o.p.e.: Four Keys to a Better Quality of Life for Parkinson's People, Second Edition By: Hal Newsom Publisher: Northwest Parkinson Foundation, 2006, 102 pages This book shares a philosophical and practical guide intended to help others with PD cope and manage the challenges of the disease. The author presents four basic concepts that inspire hope and guidance and have helped him to live better with Parkinson’s. How to Tame Parkinson's by Keeping Fit: My Total Commitment + The Right Personal Trainer By: David H. Anderson Publisher: AuthorHouse, 2005, 104 pages This book, written by a person with PD, shares how the author gained symptomatic relief — thereby enabling him to better cope with the effects of the disease — by utilizing a skilled personal trainer and tailored exercise routine. I Do It the S.A.F.E. Way: How I stay ahead of Parkinson's disease By: Tom S. Gatses Publisher: iUniverse, 2007, 72 pages This book describes the “S.A.F.E. Way” of living with PD, including such factors as “Support” from families and doctors, a positive “Attitude” about living with the disease, “Faith,” and “Exercising” the body and mind.

Parkinson’s Disease Resource List

I Will Go On Living: Living with a Movement Disorder By: Daniel Brooks, Ed.D. Publisher: BookSurge Publishing, 2009, 230 pages This book, written by a professional diagnosed with a Parkinson’s Plus Syndrome at a young age, offers information, coping strategies and a spiritual perspective. Life in the Balance: A Physician's Memoir of Life, Love, and Loss with Parkinson's Disease and Dementia By: Thomas Graboys, M.D. with Peter Zheutlin Publisher: Union Square Press, 2009, 224 pages This book is an autobiography of a physician living with Lewy Body Dementia, one of the Parkinson’s look-alike diseases. A Life Shaken: My Encounter with Parkinson's Disease By: Joel Havemann with Foreward by Stephen Reich, M.D. Publisher: Johns Hopkins University Press, 2004, 200 pages This book offers a career journalist’s personal story about life before and after the onset of PD while also sharing some PD history, symptomatology and treatment challenges. This personal life history is written with humor, honesty and engaging anecdotes. Life with a Battery-Operated Brain: A Patient's Guide to Deep Brain Stimulation Surgery for Parkinson's Disease By: Jackie Hunt Christensen Publisher: Langdon Street Press, 2009, 162 pages This book details the author’s experience with deep brain stimulation and offers information on the evaluation process and actual procedure. Life Lines: A Patient's Perspective in Humorous Verse on Life with Parkinson's Disease and Cancer By: Anthony Edey Publisher: Iris Enterprises Inc., 2000, 116 pages This book offers an interesting and poignant narrative, written in poetic verse, about living with PD — while simultaneously fighting skin cancer. Accompanying the writings are illustrations by the author's wife, Iris Edey.

Learning About Parkinsonâ&#x20AC;&#x2122;s

Living Well, Running Hard: Lessons Learned from Living with Parkinson's Disease By: John Ball Publisher: AuthorHouse, 2005, 212 pages This book, written by a passionate Parkinson's activist and avid runner, offers an intimate and inspiring portrait about his personal strategies for coping with Parkinson's disease. Living Well with Parkinson's: An Inspirational, Informative Guide for Parkinsonians and Their Loved Ones - Second Edition By: Glenna Wotton Atwood with Lila Green Hunnewell and Roxanne Moore Saucier Publisher: John Wiley Publishing, 2005, 240 pages This book offers the author's personal account of how she copes with Parkinson's disease. Useful insights, disease information and the process of disease acceptance are shared along with disease management tips. Living Well with Parkinson's Disease: What Your Doctor Doesn't Tell You....That You Need to Know By: Gretchen Garie and Michael J. Church with Winifred Conkling Publisher: Harper Paperbacks, 2007, 272 pages This book is written from the perspective of a husband and wife who both have Parkinson's and live daily with the effects of the disease. Subjects covered include a thorough discussion of diagnosis, treatment options and the emotional consequences of this disease. Lucky Man: A Memoir By: Michael J. Fox Publisher: Hyperion, 2002, 288 pages This book, a memoir by Michael J. Fox, chronicles his life before and after receiving his diagnosis of Parkinson's disease. A person with PD may find the humor, honesty and perspective contained in this book inspiring.

Parkinson’s Disease Resource List

My Moments Of Hope: Life is a Series of Moments By: Joseph J. Amodeo Publisher: AuthorHouse, 2007, 96 pages This book written in poetry and prose chronicles the author's experience of living with Parkinson's disease for 30 years. My Walk on the Parkinson's Path By: Kenneth R. Delabre Publisher: Tate Publishing & Enterprises, 2007, 144 pages This book shares the personal experiences — accomplishments and setbacks — of a person living with PD. Next to Me: Luck, Leadership and Living with Parkinson's By: David Jones Publisher: Nicholas Brealey Publishing, 2006, 288 pages This book is the story of one man's journey from having next to nothing to becoming chairman of NEXT and transforming it into one of Britain's most successful retailers, while secretly living with Parkinson's disease. Parkin-son's Spaces: How One Man, Facing Parkinson's, Views Everyday Life By: Timothy L. Reeves Publisher: BookSurge Publishing, 2009, 72 pages This book depicts the personal journey of the author and the strength he gains from his strong religious beliefs while living with PD. PDPlan4Life www.pdplan4life.com This website, created by two people who live with Parkinson's, offers tips on coping, living with the disease and a community event calendar.

Learning About Parkinson’s

Saving Milly: Love, Politics, and Parkinson's Disease By: Morton Kondracke Publisher: Ballantine Books, 2002, 272 pages This is a love story about a couple immersed in the process of coping with the effects of a Parkinson’s diagnosis. The author offers an engaging and heartfelt account of the metamorphosis that occurred from a career-oriented couple to impassioned care partner and receiver, disease-fighter and politically-minded disease activist. Sensible Self-Help for Parkinson's Problems, Updated Edition By: Edgar M. Nash Publisher: Edgar M. Nash, 2007, 147 pages This book, authored by a person living with PD, offers encouragement by drawing together positive elements of faith, hope, attitude, determination, goals and achievement. The author offers his own methods to stop or ease symptoms, discovered through personal experiences of trial-and-error. Shaken Publisher: Lila Films, Inc. (303) 442-1966 info@lilafilms.com www.lilafilms.com/shaken.htm This documentary chronicles the deep brain stimulation experience of a person with PD. Silence of the Bunnies By: Dan Stark Publisher: Tewsbury Tales Press, 2007, 188 pages This book, authored by a person living with PD, offers a whimsical journey of self-discovery post-diagnosis, chronicling struggles and foibles as well as his inspirations to face life and PD with determination and zest.

Parkinson’s Disease Resource List

Surviving Adversity: Living with Parkinson's Disease – 28 Stories That Will Inspire You By: Gord Carley Publisher: Surviving Adversity, 2007, 84 pages This book offers stories of people with diverse backgrounds living with Parkinson’s and how they view and cope with the disease. Take Charge of Parkinson's Disease: Dynamic Lifestyle Changes to Put You in the Driver's Seat By: Anne Cutter Mikkelsen and Carolyn Stinson Publisher: DiaMedica Publishing, 2011, 192 pages This book intersperses healthy lifestyle recommendations and an extensive recipe section with the author’s memoir of her husband’s experiences with Parkinson’s disease. Taming of the Fork By: Philip Golding Publisher: AuthorHouse, 2008, 140 pages This book, authored by a person with Parkinson’s, is rich with personal perspective and offers an inspirational first-hand look at life with PD. Understanding Parkinson's Disease: A Personal and Professional View By: Richard B. Rosenbaum, M.D. Publisher: Praeger, 2006, 264 pages This book, authored by a patient-physician, covers the history, etiology, clinical manifestations, treatment options, and nonpharmacologic management of PD for anyone interested in learning about the disease. Voices from the Parking Lot: Parkinson's Insights and Perspectives By: Dennis Green, Joan Blessington Snyder and Craig L. Kendall Publisher: The Parkinson Alliance, 2000, 134 pages To order: (800) 579-8440 or www.parkinsonalliance.org/book/voices.asp This book offers a collection of creative and impressive poems, narratives and artwork by people living with PD.

Learning About Parkinson’s

What is it Like to Have Parkinson's? By: John B. King Publisher: The Troy Book Makers, 2010, 27 pages http://shop.thetroybookmakers.com This book, written by a person living with Parkinson's, expresses the author’s life with the disease through poetry and paintings. When Parkinson's Strikes Early: Voices, Choices, Resources, and Treatment By: Barbara Blake-Krebs, M.A. and Linda Herman, M.L.S. Publisher: Hunter House, 2001, 288 pages This book addresses the personal and social impact of Parkinson’s on those with active lives and careers. Through personal stories, quotes, poems and political activism, the authors offer empowering perspectives on living with PD.

Parkinson’s Treatment Centers

Caring In Parkinson’s

Employment, Insurance, Financial Assistance and Legal Matters

Understanding Parkinson’s Managing Advanced Parkinson’s

Learning About Parkinson’s Parkinson’s Organizations • • • •

Employment Issues Insurance Financial Assistance Legal Matters

Employment, Insurance, Financial Assistance and Legal Matters

Employment Issues

Employment, Insurance, Financial & Legal Matters

Key Resource: Job Accommodation Network (JAN) (800) 526-7234 jan@askjan.org www.askjan.org

This free consulting service of the US Department of Labor's Office of Disability and Employment Policy provides individualized worksite accommodation solutions, including Parkinsonâ&#x20AC;&#x2122;s specific resources. Other services include technical assistance regarding the Americans with Disability Act (ADA) and other disability-related legislation, as well as information about self-employment options. A section of the website is available in Spanish. Ability Links (630) 909-7445 info@abilitylinks.org www.abilitylinks.org This website includes a network of businesses, government agencies and nonprofits that help to employ persons with disabilities by sharing information about job opportunities. Employment & Parkinson's By: Julie Sacks, M.S.W., L.C.S.W. Publisher: American Parkinson Disease Association, 2009 To order: (800) 223-2732 or www.apdaparkinson.org/userND/PublicationOrder.asp This article offers helpful information and insights about working when living with Parkinson's disease. Topics covered include staying in the workforce, knowing the law, disclosing one's diagnosis, understanding disability status and more.

Phone

Parkinson’s Disease Resource List

Employment with PD:Working it Out By: Linda Herman, R.N., L.C.S.W. Publisher: Parkinson's Disease Foundation, 2007 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet offers information and guidance about employment options and concerns following a PD diagnosis. Subjects include how to share your diagnosis with an employer, workplace accommodations and how to make the decision to stop working. Also available in Spanish. Parkinson's Disease Work-Related Disability Assessment Publisher: Parkinson's Action Network (PAN) To order: (800) 850-4726 or www.parkinsonsaction.org/PDForm This form was primarily designed for the working person living with PD as a way to track a more detailed and relevant history of Parkinson’s symptoms and progression for future reference. This form can help document symptom history and the impact on one’s ability to work when applying for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI). Parkinson's in the Workplace By: Struthers Parkinson Center Parkinson’s FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This online checklist offers general tips and guidance for on-the-job quality of life strategies to help decrease work-related stress, fatigue and safety issues. It also addresses the dilemma of sharing a PD diagnosis with co-workers. Senior Job Bank (888) 501-0804 www.seniorjobbank.org This website offers employment resources and job postings for people over age 50.

Employment, Insurance, Financial Assistance and Legal Matters

Employment, Insurance, Financial & Legal Matters

US Equal Employment Opportunity Commission (EEOC) (800) 669-4000 info@eeoc.gov www.eeoc.gov This federal agency investigates discrimination complaints and allegations of retaliation for reporting and/or opposing a discriminatory practice. The EEOC also files suits on behalf of alleged victim(s) of discrimination against employers and serves as an adjudicatory for claims of discrimination brought against federal agencies. Website is available in Spanish.

Insurance General Information American Physical Therapy Association (APTA) (800) 999-2782 sitefeedback@apta.org www.apta.org The website of this professional association offers helpful consumer information on obtaining insurance coverage for physical therapy services. To view these articles, go to the 'Reimbursement' option on the side panel of the homepage and then click on 'Info for Consumers.' BenefitsCheckup comments@benefitscheckup.org www.benefitscheckup.org This website service searches and matches benefits for seniors with limited income and resources. The database includes public and private benefits programs within the US, such as energy assistance programs, tax aid, prescription assistance programs and more.

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

Health Insurance Resources: A Guide for People With Chronic Disease and Disability, Second Edition By: Dorothy E. Northrop, M.S.W., A.C.S.W., Stephen E. Cooper and Kimberly Calder, M.P.S. Publisher: Demos Health, 2006, 232 pages This book addresses insurance benefits for those with a chronic and progressive disease such as PD. Subjects covered include tips for understanding different health insurance plans, eligibility requirements for Social Security, Medicaid/Medicare and COBRA, state insurance program directories and a directory of state pharmaceutical assistance programs. Insurance Solutions-Plan Well, Live Better: A Workbook for People with a Chronic Disease or Disability By: Laura D. Cooper, Esq. Publisher: Demos Health, 2002, 192 pages This book offers information and resources on life and disability insurance options and long-term care for those who have a chronic disease or disability. National Association of Free Clinics (NAFC) (703) 647-7427 www.freeclinics.us This organization offers a searchable database of free medical clinics within the US. Individuals who are currently uninsured may find these clinics to be an option for receiving medical care from general practitioners even though it may take several weeks to obtain the first appointment. National Committee for Quality Assurance (NCQA) (888) 275-7585 customersupport@ncqa.org www.ncqa.org/tabid/60/Default.aspx This organization is a consumer insurance rating agency that surveys and collects information on available US healthcare plans and generates a report card on these plans. Managed care plans, including HMOs, are rated on multiple factors including physician credentials, promotion of disease prevention and more.

Employment, Insurance, Financial Assistance and Legal Matters

Medicare

Employment, Insurance, Financial & Legal Matters

Centers for Medicare and Medicaid Services (CMS) (800) 633-4227 www.cms.gov This government agency runs the Medicare and Medicaid programs and provides medical and prescription coverage to eligible individuals. To learn more about eligibility criteria, medical and prescription coverage and how to apply for these benefits, visit the website or call to find the nearest office. Medicare Rights Center (800) 333-4114 info@medicarerights.org www.medicarerights.org This organization answers Medicare-related questions, addressing rights and how to obtain coverage. Hotline counselors are available Monday through Friday from 9 AM to 6 PM ET, and a section of the website is available in Spanish. MyMedicareMatters www.mymedicarematters.org This website, provided by the National Council on Aging and the Access to Benefits Coalition, offers extensive up-to-date information on issues associated with the Medicare Part D benefits program. Also is available in Spanish.

Social Security Benefits Disability.gov www.disability.gov This website, run by the federal government, offers comprehensive disabilityrelated information and resources on benefits, civil rights, education, employment, health, housing, transportation and more. Disability Secrets www.disabilitysecrets.com This website provides extensive information on Social Security disability benefits, including how to apply for benefits, understanding the disability hearing, the role of an advocate and much more.

Parkinson’s Disease Resource List

Frequently Asked Questions about Social Security Disability Insurance National Organization of Social Security Claimants' Representatives (201) 567-4228/(800) 431-2804 (lawyer referral service) nosscr@att.net www.nosscr.org/faq.html This website offers extensive articles for consumers addressing common questions about Social Security disability insurance including, "How does Social Security define disability?" and "Am I eligible for disability for the disease with which I am diagnosed?" Nolo's Guide to Social Security Disability: Getting & Keeping Your Benefits, Fifth Edition By: David A. Morton III, M.D. Publisher: Nolo, 2010, 475 pages This book, written by a physician, author, and former chief medical consultant for the Social Security Administration, outlines need-to-know information about applying for and keeping Social Security benefits. Helpful and extensive guidance is offered about filing an application, proving disability, appealing denials and much more. Social Security Administration (SSA) (800) 772-1213/(800) 325-0778 (TTY) www.ssa.gov This federally-funded benefits agency offers certain financial and medical benefits to qualifying individuals. Social Security Administration: Office Locator (800) 772-1213 www.ssa.gov/regions/regional.html This website offers information on finding the closest Social Security office in a specified location. To find information about local resources and offices, visit the Social Security Regional Home Page and then follow “Regional Links” or click on your state on the map.

Employment, Insurance, Financial Assistance and Legal Matters

Employment, Insurance, Financial & Legal Matters

Social Security Administration: Retirement Estimator (800) 772-1213 www.socialsecurity.gov/estimator This website, sponsored by the federal government, can estimate future Social Security retirement and disability income. This program is useful for those seeking information about the Social Security income they can receive once reaching set retirement age or upon eligibility for disability.

Resources for Veterans Parkinson's Disease Research, Education and Clinical Centers (PADRECC) Department of Veterans Affairs www.parkinsons.va.gov PADRECC's network of six PD Centers of Excellence (Portland/Seattle, San Francisco, Los Angeles, Houston, Richmond and Philadelphia) was established by the Department of Veterans' Affairs to deliver clinical care, research, outreach programs and educational materials to its surrounding region. To contact a PADRECC branch, see page 136. Veterans of Foreign Wars USA (VFW) (800) 839-1899 info@vfw.org www.vfw.org This organization serves as an advocate for veterans and provides pro-bono representation for veterans and their families when benefits or entitlements are needed or denied. The VFW has a 24-hour helpline, a free monthly magazine and their state posts provide additional information and services to veterans at the local level.

Parkinson’s Disease Resource List

Practical Advice:

Saving on Medications The substantial cost of Parkinson's medications is often a burden for many people. Here are a few options to explore when trying to save on medication costs: Pharmaceutical Patient Assistance Programs Several pharmaceutical companies feature programs to help eligible applicants reduce their medication costs. These programs are usually limited to the company's brand-name medications, and will most likely have specific requirements including age and income. For a listing of programs currently available for Parkinson’s medications, visit www.pdf.org/en/saving_meds. Other Public and Private Programs Researching the various drug assistance programs can be time consuming. The Partnership for Prescription Assistance (PPA) may be able to help navigate these systems. PPA brings together pharmaceutical companies, doctors, other healthcare providers, patient advocacy organizations and community groups to help qualifying individuals who lack prescription coverage obtain the medicines they need through more than 475 public or private programs. Contact PPA at (888) 477-2669 or www.pparx.org. Additional Cost Saving Strategies • Compare medication prices at different pharmacies. Prices can vary and you may find a more affordable option. • Compare prices to those at a mail-order pharmacy. • Find out if an equivalent medication from the same family (class) of medications may be cheaper than the one you are currently taking. • Ask your doctor if any of your medications can be doubled in strength and then split in half. Medications are usually priced based on the pill and not the dose strength so a 10 mg pill can cost nearly the same as 20 mg. Please note some medications should not be sliced in half especially if they are a controlled or extended release formulation. • Visit www.needymeds.org for additional information on medication cost savings ideas and resources.

Employment, Insurance, Financial Assistance and Legal Matters

Financial Assistance Key Resources: Melvin Weinstein Parkinson's Foundation (MWPF) Employment, Insurance, Financial & Legal Matters

(757) 313-9729 help@mwpf.org www.mwpf.org

This nonprofit organization offers tailored assistance to individuals with PD that are struggling with financial issues. Through the Helen M. Lynch Direct Aid Fund of the Parkinson's Disease Foundation and the Melvin Weinstein Parkinson's Foundation, funds are available for individuals who meet certain eligibility requirements to assist with paying for a home health aide or visiting nurse and to purchase such medical equipment as wheelchairs, walkers and canes. National Foundation for Credit Counseling (NFCC) (800) 388-2227 (English)/(800) 682-9832 (Spanish) www.nfcc.org This organization has 900 offices in the US that mostly offer free guidance on working with creditors, including mortgage lenders, credit card companies and more. Also offered in Spanish.

Benefits.gov (800) 333-4636 www.benefits.gov The website of this government agency shares information on over a thousand Federal and State benefit programs. Inquirers can either call the toll-free number or go to the website and perform a search by state. BenefitsCheckUp: Senior Housing Locator National Council on Aging www.seniorhousinglocator.org/default.aspx?AffiliateId=103829 This website offers an online senior housing search that lists housing options currently available only for seniors.

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

Directory of Shared Housing Resource Center: State Directory www.nationalsharedhousing.org/directory.html This organization operates a home sharing program for those in need of alternative housing options. The program operates on the premise that two or more unrelated people can share a dwelling while each retaining a private space within the dwelling. Such a formalized agreement may alleviate certain housing challenges. An extensive directory of offices is located on the website. Drugs For Less: The Complete Guide to Free and Discounted Prescription Drugs By: Michael Cecil, M.D. Publisher: Hatherleigh Press, 2005, 320 pages This book, written by a physician, covers seven practical strategies to help those individuals who are uninsured or underinsured decrease their medication costs. Eldercare Locator Service Area Agencies on Aging (800) 677-1116 www.eldercare.gov This government-supported program can refer and link seniors to financial aid and related resources including nutrition support, obtaining food stamps, prescription assistance, energy assistance, employment, home repairs and modification assistance, resources on senior housing options, tax preparation, Social Security benefits and more. Healthcare for Less: Getting the Care You Need Without Breaking the Bank By: Michelle Katz, M.S.N. Publisher: Hatherleigh Press, 2006, 224 pages This book provides practical suggestions on how to find needed health care services and treatments at a lower cost. These strategies are intended to help those who are uninsured and underinsured obtain and better afford their needed healthcare.

Employment, Insurance, Financial Assistance and Legal Matters

Employment, Insurance, Financial & Legal Matters

Low Income Home Energy Assistance Program (LIHEAP) and National Energy Assistance and Referral (NEAR) Project (866) 674-6327 energyassistance@ncat.org www.liheap.ncat.org/profiles/energyhelp.htm This organization and its website offer information and referrals to where low-income applicants can apply for help to cover home energy costs during cold temperature months and during unique emergency conditions. This federally funded program is available to applicants who meet certain eligibility requirements. NeedyMeds.org www.needymeds.org This website shares information on medication cost-saving ideas and resources. Among the resources included are patient assistance programs, drug coupon programs, disease-based assistance programs, a free/low cost clinic database and information about discount drug cards. Partnership for Prescription Assistance (PPA) (888) 477-2669 www.pparx.org This consortium of pharmaceutical companies, doctors, other health care providers, patient advocacy organizations and community groups offers information on over 475 public and private patient assistance programs that may be able to help with medication costs. To find a program, those calling will be asked to specify the drugs being sought and to complete a brief questionnaire about demographics, including state of residency, income and more. Website also offered in Spanish.

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

Patient Advocate Foundation (PAF) (800) 532-5274 help@patientadvocate.org www.patientadvocate.org This organization offers a state-by-state resource guide, "The National Financial Resources Guidebook for Patients," and a directory of resources for the underinsured. These resources offer information for patients seeking financial relief for a broad range of needs including housing, utilities, food, transportation to medical treatment and resources for children. Rebuilding Together (800) 473-4229 www.rebuildingtogether.org This organization offers a network of 200 affiliates throughout the country that provide free needed home repairs and modifications to low-income seniors and disabled individuals who have young children. Types of repair work include necessary home modifications as well as roofing, plumbing, electrical work and more. TogetherRx (800) 444-4106 www.togetherrxAccess.com This website, sponsored by pharmaceutical companies, offers a 40 to 60 percent discount on certain brand name and generic medications for those who do not have prescription insurance coverage. Not all PD medications are on their list. Website also offered in Spanish.

Employment, Insurance, Financial Assistance and Legal Matters

Legal Matters Key Resources: Disability.gov www.disability.gov

Employment, Insurance, Financial & Legal Matters

This website offers information on many different topics including disability programs, services, laws and benefits. To find local disability resources, choose your state from the â&#x20AC;&#x153;Information by stateâ&#x20AC;? drop-down menu and then select the type of resource. Legal Services Corporation (LSC) (202) 295-1500 info@lsc.gov www.lsc.gov This government organization maintains a directory of legal offices which offer free and low-cost legal services within the US to qualifying individuals.

Advance Directives Caring Connections (800) 658-8898 (English)/(877) 658-8896 (Multilingual) caringinfo@nhpco.org www.caringinfo.org/stateaddownload This program of the National Hospice and Palliative Care Organization (NHPCO) offers advance directive forms specific to each state. These forms can be obtained via the website or by contacting the helpline. Americans With Disabilities Act (ADA) US Department of Justice (800) 514-0301 (voice)/(800) 514-0383 (TTY) www.ada.gov This website and helpline, sponsored by the federal government, offer technical assistance and information about the ADA statute. Publications available in Spanish.

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

Estate Planning for People With A Chronic Condition or Disability By: Martin M. Shenkman, C.P.A., M.B.A., J.D. Publisher: Demos Health, 2009, 200 pages This book provides information on estate planning to help avoid legal and financial problems for those living with a disease and their loved ones. Family and Medical Leave Act (FMLA) US Department of Labor www.dol.gov/whd/fmla/ This government website offers information on FMLA, the law that provides certain employees with up to 12 weeks of unpaid, job-protected leave per year for health or family needs. The website also provides a list of Spanish resources. Five Wishes Aging With Dignity (888) 594-7437 fivewishes@agingwithdignity.org www.agingwithdignity.org/five-wishes.php This advance planning tool helps the user to clarify in writing personal wishes of how to be treated in the event of a serious illness or becoming incapacitated. Not every state accepts this tool as a legal document and therefore, it may be limited to a personal endof-life workbook instead of a legal document. Available in over 25 different languages. Legal Issues for Lesbian/Gay/Bisexual/Transgendered (LGBT) Caregivers Family Caregiver Alliance (800) 445-8106 info@caregiver.org www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=436 This article addresses the legal rights of LGBT care partners and care recipients including understanding who has the responsibility to provide care, the power to make medical decisions and the legal authority to utilize financial resources on someone's behalf if he or she is incapacitated. Legal Issues: Planning Ahead When You Are Living with Parkinson's By: Janna Dutton, J.D. Publisher: Parkinson's Disease Foundation, 2010 www.pdf.org/en/parkinsononline This online seminar, a PDF PD ExpertBriefing, provides tips on legal issues facing people with Parkinson's, including care plans, advance directives and wills.

Employment, Insurance, Financial Assistance and Legal Matters

Employment, Insurance, Financial & Legal Matters

The Living Will and the Durable Power of Attorney for Health Care By: Christine Gentges, R.N., J.D. Publisher: American Parkinson Disease Association, 2007 To Order: (800) 223-2732 or www.apdaparkinson.org/usernd/publicationorder.asp This article discusses how planning health care decisions through written documents offers the ability to make treatment choices even when one is no longer able to communicate and make these types of decisions. National Academy of Elder Law Attorneys (NAELA) (703) 942-5711 www.naela.org This nonprofit professional association offers a state-by-state directory of lawyers who specialize in Elder Law. These professionals are often well-versed in disability and senior laws and can help create a forward-thinking plan to benefit a person with PD. Nolo (800) 728-3555 cs@nolo.com www.nolo.com This company offers legal resources as well as software kits on a wide range of legal issues, including wills, estate planning, health care directives, retirement, elder care and more. Planning For the Future By: Struthers Parkinson Center Parkinsonâ&#x20AC;&#x2122;s FOCUS: Finding Options for Care, Understanding, and Support Publisher: National Parkinson Foundation www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This checklist offers information and suggestions on making future plans for financial, health and other related needs.

Parkinson’s Treatment Centers

Caring In Parkinson’s

Employment, Insurance, Financial Assistance and Legal Matters

Understanding Parkinson’s Managing Advanced Parkinson’s

Learning About Parkinson’s Parkinson’s Organizations • Support for Care Partners, Family and Friends • Providing Daily Care • Young Children Learning About Parkinson's Disease

Caring in Parkinsonâ&#x20AC;&#x2122;s

Support for Care Partners, Family and Friends Key Resources: Family Caregiver Alliance (FCA) (800) 445-8106 info@caregiver.org www.caregiver.org

This organization provides information, research, education, services and advocacy for caregivers. It offers a state-by-state directory of support groups and community resources, sponsors online forums such as list servs, telecasts of old and new workshops, and offers fact sheets available free of charge on its website. Caring in Parkinsonâ&#x20AC;&#x2122;s

National Family Caregiver Association (NFCA) (800) 896-3650 info@thefamilycaregiver.org www.thefamilycaregiver.org This organization offers resources and support for caregivers including The Caregiver Story Project, online caregiver forums, the Caregiver Community Action Network (CCAN), numerous free downloadable publications, print materials and more.

Agingcare.com Aging Care (239) 594-3202 www.agingcare.com This website offers information on various caregiving topics including housing, finances, legal issues, daily care, work and family.

Phone

Parkinson’s Disease Resource List

Practical Advice:

Caring for the Care Partner As a primary care partner to someone living with Parkinson’s disease (PD), it is important to focus on your own mental and physical health as well as that of your loved one. Ensuring that you take care of yourself also ensures that you are able to care for your spouse, child, parent or friend with PD. What can you do to ensure that you take care of yourself? Stay Healthy Though being a care partner may keep you busy, it is important to pay attention to your own basic health care appointments. Lack of sleep can be a common problem, so try to maintain a consistent bedtime routine or discuss the use of a sleep aid with your doctor. Find a Support Group Talking to your peers and sharing experiences can help you with some of the emotional stress that may accompany being a care partner. Many support groups have care partners meet separately, while others combine people with Parkinson’s and their care partners. Contact PDF at (800) 457-6676 or info@pdf.org to locate a support group in your area. Use Your Friends and Family It is common to feel uncomfortable asking for help outright or to think that no one else cares about your responsibilities as a care partner. Yet, often, your friends and family want to help, but they don’t know how to offer. It may be helpful to talk to them and ask who may be willing to take on certain responsibilities. This way, no one person feels that he or she has to “do it all.” Taking these steps to keep yourself healthy, find support and ask for help when you need it will allow you to be in charge of your own life so you can better advocate both for yourself and your loved one.

Caring in Parkinson’s

And Thou Shalt Honor: The Caregiver's Companion By: Beth Witrogen McLeod with Foreword by Rosalynn Carter Publisher: Rodale Publishing, 2002, 445 pages This book addresses the myriad of caregiving needs commonly faced by care partners, family and friends. Among some of the help offered is expert advice on accessing public and private caregiving resources, navigating legal and financial matters, planning day-to-day caregiving tasks and much more. Caregivers Are Really Essential (CARE) listserv@listserv.muohio.edu This listserv, dedicated to care partners, offers information, resources and support. To learn more or to subscribe, email the address above.

Caring in Parkinson’s

Caregivers Forum National Parkinson Foundation http://forum.parkinson.org/index.php?/forum This online forum offers a place where care partners of people with PD can converse and address their unique concerns. Posts are not anonymous. Caregiving: The Spiritual Journey of Love, Loss, and Renewal By: Beth Witrogen McLeod Publisher: Wiley, 2000, 272 pages This book, authored by an experienced care partners, shares information on many aspects of caregiving including medical and financial problems, aspects of spirituality, depression, stress, housing, home care and end-of-life concerns. Caring for the PD Care Partner By: Barbara Habermann, Ph.D., R.N. Publisher: Parkinson's Disease Foundation, 2010 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet addresses the needs of the Parkinson’s care partner, including maintaining health, asking for help and looking for local resources.

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

Caring for Yourself While Caring for Your Aging Parents: How to Help, How to Survive, Third Edition By: Claire Berman Publisher: Holt Paperbacks, 2005, 272 pages This book offers an empathetic guide to caring for elderly parents. The author addresses the potential emotional and physical problems faced while also emphasizing the importance of caring for oneself. Specific topics covered include financing, longdistance parent caregiving, sharing the care among siblings and coping with loss. Caring From a Distance (CFAD) (202) 895-9465 www.cfad.org This website, founded by siblings who cared for a far-away ailing father, offers information and tools to help caregivers whose family members live far away. CFAD can help connect caregivers with local service providers and facilitate communication between caregiving families, friends and providers. Caring and Coping By: Susan Imke, R.N., M.S., Tudy Hutton, J.D. and Sheree Loftus, R.N., M.S.N. Publisher: National Parkinson Foundation, 2007, 72 pages To order: (800) 327-4545 or www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This booklet, written especially for family care partners, offers an assessment of the feasibility of home care, how to organize financial and legal matters, and how to create support networks. Also offered in Spanish. Caring with Courage and Compassion: Notes of Inspiration, Loneliness, Connection and Love from a Parkinson's Caregiver By: Susan Hamburger Publisher: Parkinson Foundation of the National Capital Area, 2010, 98 pages To order: (703) 287-8729 or www.parkinsonfoundation.org/about-us/merchandise/index.html This book is a compilation of the author's popular "Caregiver Corner" newsletter articles. This author writes as an experienced PD care partner and chronicles her and her husband's long-term journey with PD. Readers may find the honesty, humor, empathy and inspirational advice to be an encouragement in their own journey with PD.

Caring in Parkinsonâ&#x20AC;&#x2122;s

CaringBridge (651) 452-7940 www.caringbridge.org This organization enables individuals to create a free, personalized and private website that connects family and friends during a serious health event, care or recovery. These websites are easy to create and may help to ease the burden of keeping family and friends informed. Website also available in Spanish. Children of Aging Parents (CAPS) (800) 227-7294 info@caps4caregivers.org www.caps4caregivers.org This organization offers information, support and experiential advice to caregivers through their helpline, website and support groups.

Caring in Parkinsonâ&#x20AC;&#x2122;s

eCareDiary.com www.ecarediary.com This website, run by the son of someone living with PD, offers tools and resources for caregivers including a "Care Diary," a mechanism to search for Care Facilities, and videos of other caregivers sharing their own personal caregiving experiences. Eldercare Locator Service Area Agencies on Aging (800) 677-1116 www.eldercare.gov This government-supported program can refer and link seniors to financial aid and related resources including nutrition support, obtaining food stamps, prescription assistance, energy assistance, employment, home repairs and modification assistance, resources on senior housing options, tax preparation, Social Security benefits and more. ElderCarelink www.eldercarelink.com This website offers a referral service free for consumers and specializes in eldercare case-matching for elders and their families in all 50 states. This resource can assist families in finding a multitude of services, including assisted living, nursing homes, adult day care, private duty nursing, care management and home care.

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

Faith In Action National Network (877) 575-4932 www.fianationalnetwork.org This organization of over 650 local programs brings together people of many faiths to help their neighbors in need by providing volunteers to shop, cook, drive or just check in on those with long-term health needs. The website offers a state-by-state directory of programs. The Family Unit & Parkinson's Disease By: R. Malcolm Stewart, M.D. Publisher: American Parkinson Disease Association, 2008 To order: (800) 223-2732 or www.apdaparkinson.org/usernd/publicationorder.asp This article explores how a diagnosis of Parkinson's may affect their family unit. In addition, the author discusses the importance of a well-planned, active approach with good communication and cooperation of everyone in the family unit. The Fearless Caregiver: How to Get the Best Care for Your Loved One and Still Have a Life of Your Own By: Gary Barg Publisher: Capital Books, 2003, 264 pages This book, written by the editor of Today's Caregiver magazine, provides information and suggestions for successful care planning and coping. Practical tips to develop long-term plans and maximize available services and resources are offered. How to Take Care of the Caregiver By: Barbara Habermann, Ph.D., R.N. Publisher: Parkinson's Disease Foundation, 2009, 60 Minutes www.pdf.org/en/parkinsononline This online seminar, a PDF PD ExpertBriefing, focuses specifically on the needs of care partners to people with Parkinsonâ&#x20AC;&#x2122;s, providing tips and resources. Keys for Caregiving By: Caryn Crenshaw, R.N. Publisher: American Parkinson Disease Association, 2007 To order: (800) 223-2732 or www.apdaparkinson.org/usernd/publicationorder.asp This publication offers supportive advice on managing the role of care partners, especially as it changes over time.

Caring in Parkinson’s

National Alliance For Caregiving (NAC) info@caregiving.org www.caregiving.org This coalition of national organizations conducts research, develops policy papers and helps care partners by offering a caregiving listserv, a caregiving resource webpage called "Family Care Resource Connection," publications and podcasts. National Center on Elder Abuse Administration on Aging www.ncea.aoa.gov This federal agency serves as a national resource center dedicated to the prevention of elder mistreatment by collaborating on research, identifying and providing information about promising practices and interventions, operating a listserv forum for professionals, and much more.

Caring in Parkinson’s

ParentYourParents info@parentyourparents.org www.parentyourparents.com This website is for adult children who are assisting parents as they age. Extensive eldercare information and resources are provided, including listings of service organizations, senior resources, and topical articles. Well Spouse Association (WSA) (800) 838-0879 info@wellspouse.org www.wellspouse.org This organization focuses exclusively on the needs of those caring for a chronically ill spouse or partner. Online forums, respite weekends, mentoring online, support groups in multiple states and a quarterly newsletter are offered. What’s Missing? Communication and the PD Partnership By: Teresa Deshefy-Longhi, DN.Sc., R.N. Publisher: Parkinson’s Disease Foundation, 2010, 60 Minutes www.pdf.org/en/parkinsononline This online seminar, a PDF PD ExpertBriefing, offers tips for addressing the communication issues that may arise between a person with Parkinson’s and his or her care partner.

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

Providing Daily Care ARCH National Respite Network www.archrespite.org This organization provides the National Respite Locator Service, a service to help care partners and professionals locate respite services in their community, and the National Respite Coalition, a service that advocates for preserving and promoting respite in policy and programs at the national, state, and local levels. Respite is temporary relief for care partners and families who are caring for those with disabilities, chronic or terminal illnesses, and the elderly. Caring for the Parkinson Patient: A Practical Guide By: J. Thomas Hutton, M.D., Ph.D. and Raye Lynne Dippel, Ph.D. Publisher: Prometheus Books, 1999, 251 pages This book offers practical information on many aspects of caregiving for those living with PD, including advice on emotional support, exercise and activities of daily living. The Comfort of Home, Parkinson's Disease Edition: An Illustrated Step-by-Step Guide for Caregivers, Second Edition By: Maria M. Meyer, Paula Derr, R.N. and Susan C. Imke, R.N. Publisher: CareTrust Publications, 2007, 298 pages This book offers a comprehensive and unique guide on caring for the person with Parkinson's. Suggestions and tips are outlined to adapt optimal caregiving strategies to specific Parkinson's stages and struggles. Coping with Dementia: Advice for Caregivers By: Claire Henchcliffe, M.D., D.Phil. and Jeanne Rosner Publisher: Parkinson's Disease Foundation, 2003 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet offers information and guidance to people with Parkinson's and their care partners about the challenges of memory loss and the decline of cognitive abilities sometimes associated with PD. Practical suggestions for dealing with dementia are explained. Also available in Spanish. Family Caregiving 101 www.familycaregiving101.org This website offers comprehensive information on caregiving including finding resource assistance, helpful advice on providing daily care and the latest ideas in improving caregiving.

Caring in Parkinsonâ&#x20AC;&#x2122;s

Lotsa Helping Hands information@lotsahelpinghands.com www.lotsahelpinghands.com This website can help to organize support from family, friends and neighbors in time of medical need with its care-coordination program. Bulletins and needs can be posted. Those who register for the site can sign up for different tasks: for example, driving to doctor appointments and cooking meals. National Association of Professional Geriatric Care Managers (NAPGCM) (520) 881-8008 www.caremanager.org This organization offers a directory of those certified as Geriatric Care Managers (GCM) as well as information on credentials, fees and what to ask when seeking the services of a GCM. These specialists can provide short or longterm eldercare assistance for those engaged in local or long distance caregiving.

Caring in Parkinsonâ&#x20AC;&#x2122;s

National Quality Caregiving Network (NQCN) Caregiving Podcasts Rosalynn Carter Institute for Caregiving (RCI) (229) 928-1234 www.rosalynncarter.org/nqcn_podcasts This organization offers caregiving podcasts (online presentations) conducted by national experts on multiple timely caregiving topics. Next Step In Care (212) 494-0700 nextstepincare@uhfnyc.org www.nextstepincare.org This organization provides information and advice to help family caregivers and health care providers plan safe and smooth transitions for patients from one setting (such as a home or hospital) to another.

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

Parkinson's Disease and the Family: A New Guide By: Nutan Sharma, M.D. and Elaine Richman, Ph.D. Publisher: Harvard University Press, 2005, 232 pages This book offers PD information and insights into the impact of the disease on partner intimacy, family relationships and other family dynamics. Helpful guidance, information and practical tips are offered to support the patient and family in managing life with PD. The PD Partnership By: Rhona Johnson Publisher: Parkinson's Disease Foundation, 2008 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet offers suggestions for navigating the complex experiences faced by a person with PD and their care partner. Subjects covered include practical tips on communication, finding support and addressing life-planning decisions. Also available in Spanish.

Young Children Learning About Parkinsonâ&#x20AC;&#x2122;s Helping Your Children Cope with Your PD By: Michelle Lane Publisher: Parkinson's Disease Foundation, 2007 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet offers information and guidance about sharing your PD diagnosis with children. Subjects include helping your family understand PD and practical tips for talking to kids. Also available in Spanish. I'll Hold Your Hand So You Won't Fall: A Child's Guide to Parkinson's Disease By: Rasheda Ali with Foreword by Muhammad Ali Publisher: Merit Publishing International, 2005, 40 Pages This book, authored by Muhammad Ali's adult daughter, was written for children ages four through eight to help them cope with and better understand PD. This book offers age-appropriate information about PD and perspectives to help young children better understand PD.

Caring in Parkinson’s

My Grandpa Has Parkinson's By: Margot Grant Evans Publisher: Vantage Press, 2006, 24 pages This book helps to explain Parkinson's disease to kids ages nine through 12. My Mommy has PD...But It's Okay! By: Jan Quist, Katherine McNeill and Susan Reese, M.A., R.N., L.C.S.W. Publisher: American Parkinson Disease Association, 2001, 20 pages To order: (800) 223-2732 or www.apdaparkinson.org/usernd/publicationorder.asp This booklet offers suggestions for parents when talking with their children about Parkinson's disease and in answering some of the more common questions children ask.

Caring in Parkinson’s

The Tale of A Parkie Princess: A Chronic Illness Described in a Fairy Tale By: Annie Konopka Publisher: Ann Marie Konopka, 2008, 24 pages This book describes Parkinson’s in a fairy tale to help children ages nine through 12 better understand the disease. Who Is Pee Dee? Explaining Parkinson's Disease to a Child By: Kay Mixson Jenkins with illustrations by Richard Morgan Publisher: UCB, Inc., 2008, 32 pages This book can be used as a tool to discuss Parkinson’s with children. It is intended to console and inform children about the disease as they follow along in the adventures of a little boy.

Parkinson’s Treatment Centers

Caring In Parkinson’s

Employment, Insurance, Financial Assistance and Legal Matters

Understanding Parkinson’s Managing Advanced Parkinson’s

Learning About Parkinson’s Parkinson’s Organizations • Living at Home • Alternatives to the Home Setting • End of Life

Managing Advanced Parkinsonâ&#x20AC;&#x2122;s

4 Living at Home

Key Resource: Visiting Nurse Associations of America (VNAA) (202) 384-1420 vnaa@vnaa.org www.vnaa.org

This organization maintains a national directory of Visiting Nurse Associations (VNAs). VNAs can offer skilled nursing, home health aide services, case management, counseling and rehabilitation services.

Aging in the Know: Pressure Ulcers (Bed Sores) Publisher: AGS Foundation for Health in Aging (800) 563-4916 www.healthinaging.org/agingintheknow/chapters_ch_trial.asp?ch=30 This organization provides information on pressure ulcers, which may be particularly useful to those people providing in-home care to their loved one. Available in Spanish.

Managing Advanced Parkinsonâ&#x20AC;&#x2122;s

American Association of Homes and Services for the Aging (AAHSA) (202) 783-2242 info@aahsa.org www.aahsa.org This organization offers a directory of not-for-profit organizations dedicated to providing high quality health care, housing and services to the elderly including nursing care, home and community based services and adult day services. Eldercare Locator Service Area Agency on Aging (800) 677-1116 www.eldercare.gov This government-supported program can refer and link seniors to adult day services, caregiver programs, home health services, respite services, elder abuse prevention, nutrition services, personal care services, emergency response systems for those who are home-bound, telephone reassurance programs and social events.

Phone

Parkinson’s Disease Resource List

Managing Advanced Parkinson Disease By: Joan Gardner, R.N., B.S.N. and Rose Wichmann, P.T. Publisher: National Parkinson Foundation, 25 pages To order: (800) 327-4545 or www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications This guide provides practical suggestions for coping with the complex problems associated with advanced PD. Topics covered in this booklet include deciding where to live, hygiene care, tips on organizing the home and approaching the end of life. National Association for Home Care and Hospice (NAHC) (202) 547-7424 www.nahc.org This organization offers information on finding, selecting, and paying for in-home care, how to choose a home care provider, and guidance to help in the process of using in-home care services under the “Consumer Info” tab on their website. This information can also be obtained by calling their offices. National Silver Alert Program (866) 840-3639 www.nationalsilveralert.org This service offers a free online registration program to all senior citizens and individuals who may have cognitive disorders and are at risk of experiencing confusion or wandering. It offers a public domain for sharing necessary information about those who may go missing. The site also offers valuable information on personal and financial safety, frauds, scams and identity theft. Understanding Advanced Parkinson's: Benefits of Palliative Care Publisher: Parkinson's Disease Foundation, 2011 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet discusses how palliative care can help people with advanced PD live well, and — with their caregivers — manage what may seem like a very difficult situation. Understanding Advanced Parkinson's: Cognitive Changes Publisher: Parkinson's Disease Foundation, 2011 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet discusses common cognitive changes in advanced PD and how to address them.

Managing Advanced Parkinson’s

Understanding Advanced Parkinson’s: Managing the Movement Symptoms Publisher: Parkinson's Disease Foundation, 2011 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet focuses on managing the symptoms of advanced Parkinson’s as they fluctuate during the day. Understanding Advanced Parkinson's: New Symptoms — PD or an Emergency? Publisher: Parkinson's Disease Foundation, 2011 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet discusses how to tell the difference between new PD symptoms and other problems experienced with advanced PD, and what to do.

Alternatives to the Home Setting Assisted Living Directory www.assisted-living-directory.com This resource lists numerous facilities and other senior care options, organized by state and then by city.

Managing Advanced Parkinson’s

National Ombudsman Resource Center Directory of State Offices (202) 332-2275 ombudcenter@theconsumervoice.org www.ltcombudsman.org/ombudsman This resource offers a directory of state-by-state ombudsman offices. Ombudsmen act as advocates for residents of assisted living, long-term care programs, skilled nursing facilities and those in hospitals or rehabilitation programs. The website also offers a section on FAQs. Nursing Home Compare Department of Health and Human Services (800) 633-4227 www.medicare.gov/Nursing/Overview.asp This interactive tool offers comparison information about Medicare and Medicaid certified nursing homes throughout the US and offers a guide to choosing a nursing home.

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

End of Life Key Resource: National Hospice & Palliative Care Organization (NHPCO) (800) 658-8898 nhpco_info@nhpco.org www.nhpco.org This organization offers information to improve and maximize support and comfort at the end of life.

Caring Connections (800) 658-8898 English/(877) 658-8896 Multilingual caringinfo@nhpco.org www.caringinfo.org This program of the National Hospice and Palliative Care Organization (NHPCO) offers information and resources for end-of-life care. Offered in multiple languages. Compassion & Choices (800) 247-7421 info@compassionandchoices.org www.compassionandchoices.org This organization utilizes grassroots efforts of local groups to provide information on advance directives, local service referrals, pain and symptom management, and legal aid in dying if suffering is unbearable. They also offer a direct line to talk to a counselor about end-of-life issues and a FAQ section of their website. Dying To Know: Straight Talk About Death and Dying By: Tani Bahti, R.N. Publisher: Pathways, 2006, 112 pages This book, written for the person facing the end of life, compassionately but frankly describes the physical, psychosocial and spiritual changes that may be encountered and offers suggestions for how to best understand and manage them.

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Managing Advanced Parkinsonâ&#x20AC;&#x2122;s

Family Caregiver Alliance (FCA) (800) 445-8106 info@caregiver.org www.caregiver.org/caregiver/jsp/publications.jsp?nodeid=345 This organization offers a series of fact sheets that address end-of-life issues including, "End of Life Choices: CPR & DNR," "End of Life Choices: Feeding Tubes and Ventilators," "End of Life Choices: Holding On and Letting Go" and "End of Life Decision Making." Also available in Spanish and Chinese. GriefNet cendra@griefnet.org www.griefnet.org This website offers users an internet support community of persons dealing with grief, death and major loss. Among the support resources offered are 50 email support groups and a companion site for children (KIDSAID.com).

Managing Advanced Parkinsonâ&#x20AC;&#x2122;s

Growthhouse.org info@growthhouse.org www.growthhouse.org This website offers resources for end-of-life care including hospice care, palliative care, pain management and more. This resource is part of a "content syndication network" (information sharing between different websites) that offers free access to over 4,000 pages of reviewed educational materials from more than forty major health care organizations. Handbook for Mortals: Guidance for People Facing Serious Illness By: Joanne Lynn, M.D. and Joan Harrold, M.D. Publisher: Oxford University Press, 1999, 256 pages This book, written by two physicians who have experience and training in hospice care and issues related to death and dying, offers compassionate and practical advice for both individuals and care partners coping with a serious illness.

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Hospice Association of America (HAA) (202) 546-4759 www.nahc.org/haa This organization represents hospices, health care professionals and volunteers who serve terminally ill individuals and their families. The website offers consumers fact sheets, statistics, the Hospice Patientâ&#x20AC;&#x2122;s Bill of Rights and more. Hospice Foundation of America (HFA) (800) 854-3402 info@hospicefoundation.org www.hospicefoundation.org This organization offers information and support on choosing hospice care and finding end-of-life resources to assist those who are coping with issues of caregiving, terminal illness and grief. Hospice Net info@hospicenet.org www.hospicenet.org This website offers information on a range of topics including how to evaluate and find a hospice, address issues of pain control and how to talk to children about death. National Association for Home Care & Hospice: Consumer Information (202) 547-7424 www.nahc.org/consumer/home.html This organization offers hospice services information including understanding service options, knowing what and how certain health professionals can be helpful, the cost of hospice care and how it can be afforded, how to find services, a consumer checklist and a hospice patient's bill of rights. On Death and Dying By: Elisabeth Kubler-Ross, M.D. Publisher: Scribner, 1997, 288 pages This book includes sample interviews to provide a better understanding of death, the five stages of death (denial and isolation, anger, bargaining, depression and acceptance), family reactions and therapy.

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Managing Advanced Parkinson’s

Planning for End-of-Life: The Role of Hospice in Parkinson's Disease Care By: Eileen Hummel, R.N., B.S.N. and Heidi Watson, R.N., B.S.N. Publisher: Parkinson's Disease Foundation, 2009 To order: (800) 457-6676 or www.pdf.org/en/factsheets This fact sheet discusses the role and benefits of hospice for a person and family living with advanced PD. Suggestions on how to discuss hospice with a family member and tips for applying for hospice are addressed. United States Living Will Registry (800) 548-9455 admin@uslivingwillregistry.com www.uslivingwillregistry.com The US Living Will Registry® electronically stores advance directives, and makes them available to health care providers 24 hours a day by secure Internet or telephone/fax, retrieved either by a registration number or the person’s social security number. There is a one-time fee for registering with the service, but some health care providers may offer it at a free or discounted rate.

Managing Advanced Parkinson’s

Webhealing.com (301) 670-1027 golden@webhealing.com www.webhealing.com This website offers resources to help those dealing with grief. Discussion boards where visitors can share their grief with others, articles on grief, excerpts from books, an Honor Page, and links to other sites or organizations are available. WidowNet www.widownet.org This message board and chat room is run by widows and widowers and addresses topics including grief, bereavement, recovery, and other information helpful to people who have suffered the death of a spouse or life partner.

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Caring In Parkinson’s

Employment, Insurance, Financial Assistance and Legal Matters

Understanding Parkinson’s Managing Advanced Parkinson’s

Learning About Parkinson’s Parkinson’s Organizations • • • •

National Parkinson's Organizations Local/Independent Parkinson's Organizations State Chapters and Networks International Parkinson's Organizations

Parkinson’s Organizations

National Parkinson’s Organizations Parkinson's Disease Foundation (PDF) New York, NY (212) 923-4700 HelpLine: (800) 457-6676 info@pdf.org www.pdf.org PDF funds research and leads innovative national educational and advocacy initiatives that seek to improve the lives and futures of people touched by Parkinson’s disease. American Parkinson Disease Association (APDA) Staten Island, NY (800) 223-2732 apda@apdaparkinson.org www.apdaparkinson.org APDA funds research and offers support and education through chapters and Information and Referral (I&R) Centers. Davis Phinney Foundation (DPF) Boulder, CO (866) 358-0285 info@davisphinneyfoundation.org www.davisphinneyfoundation.org DPF is focused on promoting and funding research into quality of life therapies and works to communicate the importance of integrating these therapies into everyday treatment plans.

Parkinson's Action Network (PAN) Washington, DC (800) 850-4726 info@parkinsonsaction.org www.parkinsonsaction.org PAN serves as the unified advocacy voice of the Parkinson's community in Washington, DC, working with grassroots advocates to bring awareness to the public and lawmakers about PD. The Parkinson Alliance Kingston, NJ (800) 579-8440 info@parkinsonalliance.org www.parkinsonalliance.org The Parkinson Alliance raises funds to support the scientific research programs of other PD organizations through local events, including the Parkinson's Unity Walk in New York City and Team Parkinson. We Move Bronx, NY wemove@wemove.org www.wemove.org We Move is an accredited provider of continuing medical education (CME) and offers training programs and teaching materials to assist professionals in deepening their understanding of movement disorders. We Move also offers web-based educational programs for people living with PD.

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Parkinson’s Organizations

Michael J. Fox Foundation for Parkinson's Research (MJFF) New York, NY (800) 708-7644 info@michaeljfox.org www.michaeljfox.org MJFF is dedicated to funding research to help guarantee that new and innovative avenues are thoroughly explored.

National Parkinson Foundation (NPF) Miami, FL (800) 327-4545 Helpline: (800) 473-4636 contact@parkinson.org www.parkinson.org NPF works to increase the quality of care for people with PD through research, education and outreach.

Parkinson’s Disease Resource List

Local/Independent Parkinson’s Organizations The organizations listed below are not affiliated with any national Parkinson’s group. These organizations have their own staff and Board of Directors and offer a variety of regional services that can range from support groups to podcasts to educational symposia. The Bachmann-Strauss Dystonia & Parkinson Foundation, Inc. New York, NY (212) 682-9900 www.dystonia-parkinsons.org This foundation provides "seed money" to help fund research for dystonia and Parkinson's disease and provides medical and patient information. Brian Grant Foundation Portland, OR http://shakeittillwemakeit.com This organization funds research and works to raise awareness of the disease in order to increase earlier diagnosis. Capital Area Parkinson's Society (CAPS) Austin, TX (512) 371-3373 info@capitalareaparkinsons.org www.capitalareaparkinsons.org CAPS provides information and support group services to people with Parkinson's disease, their families, friends, caregivers and health care providers in the greater Houston and Central Texas community. Central Ohio Parkinson Society (COPS) Columbus, OH (866) 920-6673/(614) 890-1901 comments@centralohioparkinson.org www.centralohioparkinson.org COPS offers support groups and educational programs for individuals and families in Central and Southeastern Ohio affected by Parkinson's disease.

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Connecticut Parkinson's Working Group (CPWG) Guilford, CT (203) 453-2655 questions@cpwg.org www.cpwg.org CPWG provides support, holds regular meetings, organizes educational forums and publishes a newsletter several times a year with the goal of informing the entire PD community about all aspects of the disease. Dallas Area Parkinsonism Society (DAPS) Dallas, TX (972) 620-7600 www.daps.us DAPS offers support group services that include exercise, speech therapy, water therapy and care partner sessions for individuals in the Dallas community. The HollyRod Foundation Beverly Hills, CA (866) 465-5976/(310) 385-1590 hollyrod@hollyrod.com www.hollyrod.org This organization provides low-to-no cost care and services to people with Parkinson's in Los Angeles through the HollyRod Compassionate Care program. Houston Area Parkinson Society (HAPS) Houston, TX (713) 626-7114 info@hapsonline.org www.hapsonline.org HAPS offers free support groups, physical, occupational, speech, and water therapy, Tai Chi, respite, social services and other educational programs for those affected by Parkinson's disease in the eight-county Houston Metropolitan Area.

Parkinson’s Organizations

The Michael Stern Parkinson's Research Foundation New York, NY (800) 470-0499 info@parkinsoninfo.org www.parkinsoninfo.org This foundation sponsors research at leading academic centers in the US. Michigan Parkinson Foundation (MPF) Bingham Farms, MI (800) 852-9781/(248) 433-1011 info@parkinsonsmi.org www.parkinsonsmi.org MPF provides information and support for people with Parkinson's and related disorders and their care partners throughout Michigan. Northwest Parkinson's Foundation (NWPF) Seattle, WA (877) 980-7500 info@nwpf.org www.nwpf.org NWPF offers educational resources and support to people with PD and caregivers in the Northwest (Alaska, Idaho, Montana, Oregon and Washington) and partners with the Kirkland, Washingtonbased Booth Gardner Parkinson's Care Center, a center that was designed based on a multidisciplinary model of care.

Parkinson Association of Alabama (PAA) (877) 977-7275/(205) 871-9941 Birmingham, AL info@parkinsonalabama.org www.parkinsonalabama.org PAA assists support groups in Alabama through referrals, funding, organization and education, and funds promising research at several facilities in Alabama. Parkinson Association of the Carolinas (PAC) Charlotte, NC (866) 903-7275/(704) 248-3722 pac@parkinsonassociation.org www.parkinsonassociation.org PAC provides support services for people living with Parkinson's and their families. They offer support groups, educational symposiums, a resource library, an equipment lending program, prescription assistance information and a respite care program. Parkinson Association of the Rockies (PAR) Denver, CO (866) 718-2996/(303) 830-1839 info@parkinsonrockies.org www.parkinsonrockies.org PAR provides direct care services, including support groups, case management services and exercise programs, to people with Parkinson's living in Colorado, Wyoming and Western Nebraska.

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Ohio Parkinson Foundation Northeast Region Tallmadge, OH (800) 630-3193 www.ohparkinson.org This organization offers support groups and an annual symposium for individuals affected by Parkinson's disease in 16 counties in the northeast region of Ohio.

Ohio Parkinson Foundation Southwest Region Fairborn, OH (800) 877-4577/(937) 878-8608 www.ohioparkinson-southwest.org This organization provides information, support groups and exercise groups for people living with Parkinson’s in 18 counties in the southwest region of Ohio.

Parkinson’s Disease Resource List

Parkinson Foundation of Northwest Ohio (PFNWO) Oak Harbor, OH rpswbailey@hotmail.com www.nwoparkinson.org PFNWO offers support groups and an annual symposium for individuals affected by Parkinson's disease in Northwest Ohio.

Parkinson's Resource Center of Spokane Spokane, WA (509) 473-2490 center@spokaneparkinsons.org www.spokaneparkinsons.com PRC of Spokane provides free support services to people with Parkinson’s, care partners, and medical providers in Washington.

Parkinson Foundation of Oklahoma Oklahoma City, OK (405) 810-0695 www.parkinsonoklahoma.com This organization offers educational conferences, support groups and exercise classes for people with Parkinson’s and care partners throughout Oklahoma.

Parkinson's Resource Organization (PRO) Palm Desert, CA (877) 775-4111/(760) 773-5628 info@parkinsonsresource.org www.parkinsonsresource.org PRO provides education and support groups for people with Parkinson's and care partners throughout Southern California.

Parkinson Support Center of Kentuckiana Louisville, KY (502) 426-0888 info@pscky.org www.pscky.org This organization provides information to the Parkinson's community of Kentucky. Their website includes news of local support group activities, an interactive calendar on which you can post your own events, and updates on legislative issues.

Thomas Hartman Foundation for Parkinson's Research East Islip, NY (631) 277-9655 aa@hartmanfoundation.org www.hartmanfoundation.org This foundation raises money for research and offers educational information. In addition to an "Ask the Doctor" service, they maintain a prayer list whereby one can submit a prayer request or can be a prayer partner.

Parkinson's Awareness Association of Central Indiana (PAACI) Indianapolis, IN (317) 255-1993 sheripaaci@sbcglobal.net www.paaci.org PAACI provides support for those with Parkinson's through education, exercise programs, advocacy and research.

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Parkinsonâ&#x20AC;&#x2122;s Organizations

State Chapters and Networks The following list includes chapters and networks of either the National Parkinson Foundation (NPF) or the American Parkinson Disease Association (APDA) as well as Independent Organizations. The resources and services offered by these groups vary and may include support groups, educational symposia and direct assistance. ALABAMA Parkinson Association of Alabama, Inc. (PAA) Birmingham, AL (877) 977-7275/(205) 871-9941 info@parkinsonalabama.org www.parkinsonalabama.org University of Alabama at Birmingham, Department of Neurology (APDA I&R Center and Chapter) Birmingham, AL (205) 934-9100 apda@uab.edu ALASKA Northwest Parkinson's Foundation (NWPF) Seattle, WA (877) 980-7500 info@nwpf.org www.nwpf.org ARIZONA Parkinson Network of Arizona (NPF) Phoenix, AZ (602) 406-4208 info@parkinsonaz.org www.parkinsonaz.org

University of Arizona, Department of Neurology (APDA I&R Center) Tucson, AZ (866) 897-1261/(520) 626-5055 www.azapda.org ARKANSAS St. Joseph's Regional Health Center (APDA I&R Center and Chapter) Hot Springs, AR (501) 622-3990 CALIFORNIA The HollyRod Foundation Beverly Hills, CA (866) 465-5976/(310) 385-1590 hollyrod@hollyrod.com www.hollyrod.org Orange Coast Memorial Medical Center (APDA I&R Center) Fountain Valley, CA (877) 610-2732/(714) 378-5022 www.apdaoc.org APDA San Gabriel Valley Chapter La Verne, CA (909) 593-0427

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Parkinsonâ&#x20AC;&#x2122;s Organizations

Banner Good Samaritan Medical Center (APDA I&R Center) Phoenix, AZ (602) 839-3542 www.azapda.org

APDA Arizona Chapter Tucson, AZ (800) 541-4960/(520) 326-5400 info@azapda.org www.azapda.org

Parkinson’s Disease Resource List

Saddleback Memorial Medical Center (APDA I&R Center) Laguna Hills, CA (877) 610-2732/(714) 378-5022 www.apdaoc.org Long Beach Memorial Medical Center (APDA I&R Center) Long Beach, CA (877) 610-2732/(714) 378-5022 www.apdaoc.org APDA Greater Los Angeles Chapter Los Angeles, CA (866) 708-7745 www.parkinsonla.org Cedars-Sinai Medical Center (APDA I&R Center) Los Angeles, CA (877) 223-3277/(310) 423-7933 UCLA (APDA I&R Center) Los Angeles, CA (310) 206-9799 NPF Orange County Chapter Newport Beach, CA (949) 764-6998 info@npfocc.org www.npfocc.org Center for Aging, Research and Education (APDA I&R Center) Northridge, CA (866) 499-2732/(818) 885-8623 Parkinson's Resource Organization (PRO) Palm Desert, CA (877) 775-4111/(760) 773-5628 info@parkinsonsresource.org www.parkinsonsresource.org

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Parkinson Association of Northern California (NPF) Sacramento, CA (866) 979-7262/(916) 489-0226 parkanc@sbcglobal.net www.parkinsonsacramento.org Parkinson's Disease Association of San Diego (APDA I&R Center and Chapter) San Diego, CA (858) 273-6763 www.pdasd.org Stanford University Medical Center, Department of Neurology (APDA I&R Center) Stanford, CA (866) 250-2414/(650) 724-6090 http://parkinsons.stanford.edu Parkinson’s Network of Mount Diablo (NPF) Walnut Creek, CA (925) 284-2189 www.pnmd.net COLORADO Colorado Parkinson Foundation, Inc. (NPF) Colorado Springs, CO (719) 884-0103 info@co-parkinson.org www.co-parkinson.org Parkinson Association of the Rockies (PAR) Denver, CO (866) 718-2996/(303) 830-1839 info@parkinsonrockies.org www.parkinsonrockies.org CONNECTICUT Connecticut Parkinson's Working Group (CPWG) Guilford, CT (203) 453-2655 questions@cpwg.org www.cpwg.org

Parkinson’s Organizations

Hospital of St. Raphael (APDA I&R Center) New Haven, CT (877) 282-7328 (CT only)/(203) 789-3936 www.ctapda.org

Parkinson Association of Greater Daytona Beach (NPF) Ormond Beach, FL (386) 252-8959 yovinny57@aol.com

APDA Connecticut Chapter North Haven, CT (203) 288-0546 www.ctapda.org

St. Augustine Parkinson's Disease Support Group (NPF) St. Augustine, FL (904) 824-7776 kcoshow@comcast.net

FLORIDA The Herbert Kay Parkinson Chapter (NPF) Aventura, FL (305) 932-1870 South Palm Beach County Chapter (NPF) Boca Raton, FL (561) 482-2867 llayton1@bellsouth.net The ParkOptimists (NPF) Coral Gables, FL (305) 476-8782 Gold1935@bellsouth.net APDA South Florida Chapter and I&R Center Deerfield Beach, FL (800) 825-2732/(954) 786-2305 apdasflorida@netzero.net www.apdaflorida.org

Southeast Parkinson Disease Association Orlando, FL (407) 489-4124 info@sepda.org www.sepda.org

North Florida Parkinson Awareness Group (NPF) Tallahassee, FL (850) 219-4470 phunt044@comcast.net Alzheimer & Parkinson Association of Indian River County, Inc. (NPF) Vero Beach, FL (772) 563-0505 info@alzpark.org www.alzpark.org GEORGIA APDA Georgia Chapter Atlanta, GA (404) 325-2020 info@apdageorgia.org www.apdageorgia.org Emory University School of Medicine (APDA I&R Center) Atlanta, GA (404) 728-6552 www.apdaatlanta.org Central Savannah River Area (CSRA) Parkinson Support Group - Augusta Chapter (NPF) Augusta, GA (706) 364-1662 parkinsoncsra@comcast.net

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Parkinson’s Organizations

Parkinson Association of Southwest Florida (NPF) Naples, FL (239) 417-3465 pasfi@aol.com www.pasfi.org

Edward White Hospital (APDA I&R Center) St. Petersburg, FL (727) 328-6246

Parkinson’s Disease Resource List

Northwest Georgia Parkinson Disease Association (NPF) Rome, GA (706) 413-3264 admin@gapparkinsons.org www.gaparkinsons.org Parkinson’s In The Park (NPF) Springfield, GA (912) 655-5293 www.parkinsonsinthepark.org HAWAII Hawaii Parkinson Association (NPF) Honolulu, HI (800) 570-1101/(808) 528-0935 info.hpa@gmail.com www.parkinsonhawaii.org

IOWA Iowa Health - Des Moines (APDA I&R Center) Des Moines, IA (877) 872-6386/(515) 241-6379 www.apdaiowa.org APDA Iowa Chapter Waukee, IA (515) 241-6379 www.apdaiowa.org

IDAHO Northwest Parkinson's Foundation (NWPF) Seattle, WA (877) 980-7500 info@nwpf.org www.nwpf.org

KANSAS Parkinson Foundation of the Heartland (NPF) Leawood, KS (913) 341-8828 info@parkinsonheartland.org www.parkinsonheartland.org

ILLINOIS Parkinson Association of Illinois (NPF) Chicago, IL (312) 330-1493 www.parkinsonil.org

Northeast Kansas Parkinson Association (NPF) Topeka, KS (785) 478-9045 www.nekpa.com

APDA Midwest Chapter Wheaton, IL (630) 933-4392 apdamidwest@apdamidwest.org www.apdamidwest.org Central DuPage Hospital (APDA I&R Center) Winfield, IL (800) 223-9776/(630) 933-4383 parkinsonscenter@cdh.org www.apdamidwest.org

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INDIANA Parkinson's Awareness Association of Central Indiana (PAACI) Indianapolis, IN (317) 255-1993 sheripaaci@sbcglobal.net www.paaci.org

KENTUCKY University of Kentucky (APDA I&R Center) Lexington, KY (866) 554-2732/(859) 257-2732 www.ukhealthcare.uky.edu/apda Parkinson Support Center of Kentuckiana Louisville, KY (502) 426-0888 info@pscky.org www.pscky.org

Parkinson’s Organizations

LOUISIANA Eljay Foundation for Parkinson Syndrome Awareness (NPF) Lake Charles, LA (337) 310-0083 info@eljayfd.org www.eljayfd.org

MICHIGAN Michigan Parkinson Foundation (MPF) Bingham Farms, MI (800) 852-9781/(248) 433-1011 info@parkinsonsmi.org www.parkinsonsmi.org

Ochsner Foundation Clinic (APDA I&R Center) New Orleans, LA (504) 842-4272

Parkinson’s Association of West Michigan (NPF) Grand Rapids, MI (800) 617-8711/(616) 954-8077 www.parkinsonsassociationwmi.org

MAINE MaineHealth Learning Resource Center (APDA I&R Center) Falmouth, ME (800) 862-4116/(207) 781-1735 www.mainehealth.org/parkinsonsmaine

MINNESOTA Parkinson Association of Minnesota (NPF) Golden Valley, MN (763) 545-1272 info@parkinsonmn.org www.parkinsonmn.org

APDA Maine State Chapter Portland, ME (207) 781-1738 info@meapda.org www.meapda.org

Abbott Northwestern Hospital (APDA I&R Center) Minneapolis, MN (888) 302-7762/(612) 863-5850

MARYLAND University of Maryland Hospital (APDA I&R Center) Baltimore, MD (800) 862-5457/(410) 328-0916 APDA Anne Arundel County Chapter Severna Park, MD (410) 729-3461 blmislan@comcast.net

MISSISSIPPI APDA Mississippi Chapter Brandon, MS (601) 506-2729 info@msapda.org www.msapda.org Gulfport Memorial Hospital (APDA I&R Center) Gulfport, MS (288) 575-1330

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Parkinson’s Organizations

MASSACHUSETTS Boston University School of Medicine (APDA I&R Center and Chapter) Boston, MA (800) 651-8466/(617) 638-8466 information@apdama.org www.apdama.org

APDA Minnesota Chapter Vadnais Hts, MN (651) 442-4842

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

MISSOURI Parkinson's Group of the Ozarks (NPF) Springfield, MO (417) 885-9595 info@parkinsonsgroup.org www.parkinsonsgroup.org Washington University School of Medicine (APDA I&R Center and Chapter) St. Louis, MO (314) 362-3299 www.stlapda.org MONTANA Benefis Health Care West Campus (APDA I&R Center and Chapter) Great Falls, MT (800) 233-9040/(406) 455-2964 Northwest Parkinson's Foundation (NWPF) Seattle, WA (877) 980-7500 info@nwpf.org www.nwpf.org NEBRASKA Parkinson Association of the Rockies (PAR) Denver, CO (866) 718-2996/(303) 830-1839 info@parkinsonrockies.org www.parkinsonrockies.org APDA Nebraska Chapter Omaha, NE (402) 392-2732 www.parkinsonsne.org Creighton University (APDA I&R Center) Omaha, NE (866) 626-7347/(402) 449-4535 www.parkinsonsne.org

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NEVADA Southern Nevada (APDA I&R Center and Chapter) Las Vegas, NV (702) 464-3132

V.A. Hospital (APDA I&R Center) Reno, NV (775) 328-1715 NEW HAMPSHIRE The Hitchcock Foundation, Section of Neurology (APDA I&R Center) Lebanon, NH (603) 650-5280 APDA New Hampshire Chapter Londonderry, NH (603) 434-6252 NEW JERSEY APDA New Jersey Chapter Edison, NJ (908) 303-0090 www.njapda.org Robert Wood Johnson University Hospital (APDA I&R Center) New Brunswick, NJ (732) 745-7520 www.njapda.org NEW MEXICO University of New Mexico HSC (APDA I&R Center and Chapter) Albuquerque, NM (877) 515-4560 www.nmapda.org NEW YORK Brooklyn Parkinson Group (NPF) Brooklyn, NY (718) 522-0553 info@brooklynparkinsongroup.org www.brooklynparkinsongroup.org Parkinson Support Group of Syracuse New York (NPF) Clay, NY (315) 652-6857 Peninsula Hospital (APDA I&R Center) Far Rockaway, NY (718) 734-2876

Parkinsonâ&#x20AC;&#x2122;s Organizations

APDA Southern Tier Chapter Lisle, NY (607) 743-5743 New York University Medical Center (APDA I&R Center) New York, NY (212) 983-1379 New York College of Osteopathic Medicine, NYIT (APDA I&R Center) Old Westbury, NY (516) 626-6114 chapter@liapda.org www.liapda.org Parkinson's Support Group of Upstate New York, Inc. (NPF) Rochester, NY (585) 234-5355 info@psguny.org www.psguny.org St. Catherines of Siena Hospital (APDA I&R Center) Smithtown, NY (631) 862-3560 www.liapda.org APDA Salvatore & Elena Esposito Chapter Staten Island, NY (718) 727-2713 Staten Island University Hospital (APDA I&R Center) Staten Island, NY (718) 226-6129

Parkinson's Association of Western New York, Inc. (NPF) Williamsville, NY (716) 859-7528 www.parkinsonswny.com

Parkinson Association of the Carolinas (PAC) Charlotte, NC (866) 903-7275/(704) 248-3722 pac@parkinsonassociation.org www.parkinsonassociation.org OHIO APDA Cincinnati Tri-State Chapter Cincinnati, OH (877) 489-1110/(513) 948-1100 info@parkinsonswellness.org www.parkinsonswellness.org University Neurology, Inc. (APDA I&R Center) Cincinnati, OH (877) 489-1100/(513) 558-0113 Central Ohio Parkinson Society (COPS) Columbus, OH (866) 920-6673/(614) 890-1901 comments@centralohioparkinson.org www.centralohioparkinson.org Ohio Parkinson Foundation Southwest Region Fairborn, OH (800) 877-4577/(937) 878-8608 www.ohioparkinson-southwest.org Ohio Parkinson Foundation Northeast Region Tallmadge, OH (800) 630-3193 Parkinson Foundation Northwest Ohio (PFNWO) Oak Harbor, OH www.nwoparkinson.org

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Westfield Memorial Hospital (APDA I&R Center) Westfield, NY (716) 793-2112

NORTH CAROLINA APDA Asheville Chapter Asheville, NC (828) 255-8451

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

OKLAHOMA APDA Oklahoma Parkinson Disease Chapter (OPDA) Tulsa, OK (918) 747-3747 Hillcrest Medical Center System (APDA I&R Center) Tulsa, OK (918) 747-3747 jdjohns@hillcrest.com

Parkinson Foundation of Western Pennsylvania (NPF) Pittsburgh, PA (412) 365-2086 info@pfwpa.org www.pfwpa.org

OREGON Brian Grant Foundation Portland, OR http://shakeittillwemakeit.com

Crozer Keystone Health Access Network (APDA I&R Center and Chapter) Upland, PA (610) 447-2911

Parkinson's Resources of Oregon (NPF) Lake Oswego, OR (800) 426-6806/(503) 594-0901 info@parkinsonsresources.org www.parkinsonsresources.org

RHODE ISLAND APDA Rhode Island Chapter Providence, RI (401) 823-5700 www.riapda.org

Northwest Parkinson's Foundation (NWPF) Seattle, WA (877) 980-7500 info@nwpf.org www.nwpf.org

Kent Hospital (APDA I&R Center) Warwick, RI (401) 736-1046 nthibodeau@kentri.org www.parkinsonsdisease-rhodaiscand.org

PENNSYLVANIA The Parkinson Council (NPF) Bala Cynwyd, PA (610) 668-4292 info@theparkinsoncouncil.org www.theparkinsoncouncil.org

SOUTH CAROLINA Parkinson Association of the Carolinas (PAC) Charlotte, NC (866) 903-7275/(704) 248-3722 info@parkinsonassociation.org www.parkinsonassociation.org

Lehigh Valley Parkinson Support Group (NPF) Bethlehem, PA (610) 435-1852

SOUTH DAKOTA Parkinson Association of South Dakota (NPF) Sioux Falls, SD (605) 271-6113 info@parkinsonsd.org www.parkinsonsd.org

APDA Central Susquehanna Valley Chapter Danville, PA (570) 271-6707

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HealthSouth Rehabilitation Hospital (APDA I&R Center) Erie, PA (800) 234-4574/(814) 456-4210

Parkinson’s Organizations

TENNESSEE APDA Middle Tennessee Chapter Nashville, TN (615) 269-5312 apda@mtparkinsons.org www.mtparkinsons.org Centennial Medical Center (APDA I&R Center) Nashville, TN (800) 493-2842 (615) 342-4635 apdaintn@aol.com www.mtparkinsons.org

Houston Area Parkinson Society (HAPS) Houston, TX (713) 626-7114 info@hapsonline.org www.hapsonline.org APDA West Texas Parkinsonism Society Chapter Lubbock, TX (806) 725-0941 wtps@covhs.org www.westtexasparkinsondisease.org

Middle Tennessee Chapter of the NPF Nashville, TN (615) 342-4635

Covenant Hospital (APDA I&R Center) Lubbock, TX (806) 785-2732 jbidwell@covhs.org www.westtexasparkinsondisease.org

TEXAS Capital Area Parkinson's Society (CAPS) Austin, TX (512) 371-3373 info@capitalareaparkinsons.org www.capitalareaparkinsons.org

University of TX HSC at San Antonio, Department of Neurology (APDA I&R Center and Chapter) San Antonio, TX (210) 450-0551 www.aapsg.org

APDA North Texas Chapter Dallas, TX (214) 378-2732 northtexasapda@gmail.com www.northtexasapda.org

APDA East Texas Chapter Tyler, TX (866) 491-2732 www.etapda.org

Baylor Neuroscience Center (APDA I&R Center) Dallas, TX (214) 820-3800

APDA El Paso Chapter El Paso, TX (915) 566-5515

UTAH APDA Utah Chapter Salt Lake City, UT (801) 585-2354 www.utahapda.org

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Parkinson’s Organizations

Dallas Area Parkinsonism Society (DAPS) Dallas, TX (972) 620-7600 daps125@sbcglobal.net www.daps.us

East Texas Medical Center, Neurological Institute Movement Disorders Center (APDA I&R Center and Chapter) Tyler, TX (903) 596-3648/(903) 596-3618 info@etapda.org www.etapda.org www.etmc.org/parkinsonprogram

Parkinson’s Disease Resource List

University of Utah HSC, Department of Neurology (APDA I&R Center) Salt Lake City, UT (801) 585-2354 www.utahapda.org VERMONT University of Vermont FAHC-UHC Campus, Neurology Department (APDA I&R Center and Chapter) Burlington, VT (888) 763-3366/(802) 847-3366 www.parkinsonsvt.org VIRGINIA University of Virginia Health System, Fontaine Research Park (APDA I&R Center) Charlottesville, VA (434) 982-4482 Parkinson Foundation of the National Capital Area (NPF) McLean, VA (703) 287-8729 pfnca@parkinsonfoundation.org www.parkinsonfoundation.org APDA Southwest Virginia Chapter Roanoke, VA (504) 206-2363 APDA Richmond Metro Chapter Richmond, VA (804) 730-1336 www.parkinsonrichmond.com APDA Hampton Roads Chapter Virginia Beach, VA (757) 495-3062 www.hrparkinsons.org

WASHINGTON APDA Washington State Chapter Seattle, WA (425) 243-2732 info@waparkinsons.org www.waparkinsons.org Northwest Parkinson's Foundation (NWPF) Seattle, WA (877) 980-7500 info@nwpf.org www.nwpf.org University of Washington, Department of Neurology (APDA I&R Center) Seattle, WA (206) 277-5516 www.waparkinsons.org Parkinson's Resource Center of Spokane Spokane, WA (509) 473-2490 center@spokaneparkinsons.org www.spokaneparkinsons.com WEST VIRGINIA APDA North Central West Virginia Chapter Fairmont, WV (304) 363-1028 WISCONSIN St. Mary’s Hospital (APDA I&R Center and Chapter) Madison, WI (608) 229-7628 chapter@wichapterapda.org www.wichapterapda.org Wisconsin Parkinson Association (NPF) Milwaukee, WI (800) 972-5455 www.wiparkinson.org

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Parkinson’s Organizations

WYOMING APDA Bighorn Basin Parkinson Chapter Cody, WY (307) 587-5412 Parkinson Association of the Rockies (PAR) Denver, CO (866) 718-2996/(303) 830-1839 info@parkinsonrockies.org www.parkinsonrockies.org PUERTO RICO Asociacion Puertorriquena De Parkinson (NPF) Carolina, PR (787) 768-5565 Fundacion Puertorriquena De Parkinson (NPF) San Juan, PR (787) 764-4898 BAHAMAS Kingdor National Parkinson Foundation (NPF) Nassau, Bahamas (242) 322-7477 mavisdarling@hotmail.com

Parkinson’s Organizations

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Parkinson’s Disease Resource List

International Parkinson’s Organizations The following organizations offer a variety of resources and services to people living with Parkinson’s around the world. Please note that an asterisk (*) marked after an organization’s name indicates that their website is available in English. European Parkinson's Disease Association (EPDA)*

Brussels, Belgium: +32 0 2 791 7747 or London, England: +44 0 207 8725510 info@epida.eu.com or www.epda.eu.com This membership organization is committed to promoting an international understanding of PD through conferences, awareness campaigns, surveys and publications. World Parkinson Coalition, Inc.* New York, NY: (800) 457-6676/(212) 923-4700 info@worldpdcongress.org or www.worldpdcongress.org This organization runs an international meeting for physicians, scientists, allied health professionals, caregivers and people with Parkinson's disease that offers the latest scientific discoveries, medical practices and caregiver initiatives related to Parkinson's. The next World Parkinson Congress is scheduled to be held in Montréal, Canada in 2013. World Parkinson Disease Association* Milan, Italy: +39 02 66 713 111 info@wpda.org or www.wpda.org This membership organization was created to encourage a greater exchange of information among international PD organizations.

AFRICA Parkinson Association of South Africa* Bryanston, South Africa +27 011 787 8792 info@parkinsons.co.za www.parkinsons.co.za ARGENTINA Grupo de Autoayuda Parkinson Argentina Buenos Aires, Argentina fundacion.thomson@speedy.com.ar www.fund-thomson.com.ar/grupos.html Asociación Civil Enfermedad de Parkinson Buenos Aires, Argentina +54 11 4393 9422 info@parkinsonargentina.org.ar www.parkinsonargentina.org.ar

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AUSTRALIA Parkinson's Society of the Gold Coast Bundall, Australia +61 7 5593 7928 parkie@fan.net.au Parkinson's Victoria* Cheltenham, Australia +61 3 9551 1122 info@parkinsons-vic.org.au www.parkinsons-vic.org.au Parkinson's Association of Tasmania Inc. Lindisfarne, Australia +61 3 6243 6510 hconnor-kendray@netspace.net.au

Parkinson’s Organizations

Parkinson's Western Australia* Nedlands, Australia +61 8 9346 7373 pwaadmin@cnswa.com www.parkinsonswa.org.au

BRAZIL Parkinson's Society - Rio de Janeiro Rio de Janeiro, Brazil +55 21 2989 0289 wbossnev_ams@yahoo.com

Parkinson's New South Wales* North Ryde, Australia +61 2 8875 8900 pnsw@parkinsonsnsw.org.au www.parkinsonsnsw.org.au

Associação Brasil Parkinson Sao Paulo, Brazil +55 011 578 8177 asparkin@netway.com.br www.parkinson.org.br

Parkinson's Australia* Scullin, Australia +61 2 6278 8916 norman.marshall@parkinsonsaustralia.org.au www.parkinsons.org.au

CANADA Parkinson Society Canada* Toronto, ON, Canada +1 416 227 9700 communications@parkinson.ca www.parkinson.ca

Parkinson's Queensland* Stones Corner, Australia +61 7 3209 1588 pqi@parkinsons-qld.org.au www.parkinsons-qld.org.au

CROATIA Croatian Parkinson's Disease and Movement Disorders Association Zagreb, Croatia +385 1 2388 628 mrelja@mef.hr www.hubpp.mef.hr

Parkinson's South Australia Inc.* Unley, Australia +61 8 8357 8909 info@parkinsonssa.org.au www.parkinsonssa.wordpress.com

BELGIUM Association Parkinson Namur, Belgium +32 081 56 88 56 info@parkinsonasbl.be www.parkinsonasbl.be

CZECH REPUBLIC Czech Parkinson's Disease Society Prague, Czech Republic +420 272 73 92 22 info@parkinson-cz.net www.parkinson-cz.net DENMARK Parkinson Foreningen Denmark Copenhagen, Denmark +45 3341 4770 dansk@parkinson.dk www.parkinson.dk

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Parkinson’s Organizations

AUSTRIA Austrian Parkinson's Self-Help Group (Parkinson Selbsthilfe Oesterreich) Wien, Austria +43 664 78 222 03 sekretariat@parkinson-sh.at www.parkinson-sh.at

CYPRUS Cyprus Parkinson's Disease Association Nicosia, Cyprus +357 22 49 63 98 yioula@tehnisdromena.com

Parkinson’s Disease Resource List

ESTONIA Estonian Parkinson’s Association* Tartu, Estonia +372 53448050 parkliit@gmail.com www.parkinson.ee FAEROE ISLANDS Parkinsonfelagio Torshavn, Faeroe Island +29 8 504 350 kristiannamichelsen@hotmail.com www.parkinson.fo FINLAND The Finnish Parkinson Association* Turku, Finland +358 2 2740 400 (Finnish) +358 2 2740 444 (English) parkinson-liitto@parkinson.fi www.parkinson.fi FRANCE La Fédération Française des Groupements de Parkinsoniens Savigny en Sancerre, France +33 02 48 72 15 65 ffgp.asso@free.fr www.parkinson.monespace.net Association France Parkinson Paris, France +33 01 45 20 22 20 infos@franceparkinson.fr www.franceparkinson.fr GEORGIA Georgian International Charitable Union of Parkinson’s Disease Patients Tbilisi, Georgia pparkinsongeo@yahoo.com

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GERMANY Internationale Parkinson Fonds Deutschland gGmbH Berlin, Germany +49 30 700 140 110 info@parkinsonfonds.de www.parkinsonfonds.de Parkinson-Hilfe Deutschland e.V. Meseberg bei Magdeburg, Germany +49 39202 84940 info@parkinson-hilfe-deutschland.de www.parkinson-hilfe-deutschland.de GREECE EPIKOUROS - Kinisis (Movement) Branch Athens, Greece +30 210 213 587/+30 694 298 5777 p.zikos@gmail.com www.parkinsonportal.gr HONG KONG Hong Kong Parkinson’s Disease Association Hong Kong +852 2337 2292 info@hkpda.org www.hkpda.org Hong Kong Parkinson’s Disease Foundation* Hong Kong +852 8100 5223 info@hkpdf.org.hk www.hkpdf.org.hk HUNGARY Delta Parkinson Egyesulet Budapest, Hungary +36 1 282 9971 info@fogomakesed.hu ICELAND Parkinsonsamtökin á Íslandi (PSÍ) Reykjavik, Iceland +354 552 4440 parkinson@parkinson.is www.parkinson.is

Parkinson’s Organizations

INDIA Parkinson's Disease and Movement Disorder Society (PDMDS)* Mumbai, India mail@parkinsonssocietyindia.com www.parkinsonssocietyindia.com

LITHUANIA Lithuanian Parkinson's Disease Society Kaunas, Lithuania +370 687 94021 rasma@splius.lt www.parkinsonas.org

IRELAND Parkinson's Association of Ireland* Dublin, Ireland +353 1 872 2234 info@parkinsons.ie www.parkinsons.ie

LUXEMBOURG Parkinson Luxembourg (PL) a.s.b.l L-1013 Luxembourg +352 2369 8451 info@parkinsonlux.lu www.parkinsonlux.lu

ISRAEL Israel Parkinson Association Tel-Aviv, Israel +972 3 731 2611 arieli@agri.huji.ac.il www.parkinson.org.il

MALAYSIA Malaysian Parkinson’s Disease Association* Kuala Lumpur, Malaysia +60 3 7980 6685 mpda1@streamyx.com www.mpda.org.my

ITALY Associazione Italiana Parkinsoniani Milan, Italy +39 02 66710432 aip@fondazioneparkinson.com www.parkinson.it

MALTA Malta Parkinson’s Disease Association* Naxxar, Malta +356 2146 2196 maltaparkinsons@onvol.net www.maltaparkinsons.com

Azione Parkinson (Lazio) Rome, Italy +39 06 30207280 azioneparkinsonlazio@hotmail.it www.azioneparkinsonciociaria.org

NETHERLANDS Internationaal Parkinson Fonds Nederland Haarlemmermeer, Netherlands +31 23 5540754 info@parkinsonfonds.nl www.parkinsonfonds.nl

JAPAN Japanese Parkinson Disease Association Tokyo, Japan +81 03 5318 3075 jpda@jpda-net.org www.jpda-net.org

Parkinson Vereniging Bunnik, Netherlands +31 30 656 1369 info@parkinson-vereniging.nl www.parkinson-vereniging.nl

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Parkinson’s Organizations

Parkinson Italia Milan, Italy +39 02 36554377 parkinsonitalia@parkinson-italia.it www.parkinson-italia.it

Parkinson’s Disease Resource List

NEW ZEALAND Parkinsonism Society of New Zealand* Wellington, New Zealand +64 4 472 2796 info@parkinsons.org.nz www.parkinsons.org.nz Parkinson’s Auckland* Auckland, New Zealand +64 9 278 6918 aklparkinsons@xtra.co.nz www.parkinsonsauckland.org.nz NORWAY Norges Parkinsonforbund Oslo, Norway +47 22 00 83 00 post@parkinson.no www.parkinson.no

Kraków Parkinson’s Disease Association Krakow, Poland +48 12 422 19 55 ksodchp@parkinson.krakow.pl www.parkinson.krakow.pl ParkinsonPolska Warsaw, Poland +48 22 409 77 56 fundacja@parkinson.sos.pl (PL) www.parkinsonfundacja.pl (PL) www.parkinsonfound.com (EN) Stow. Choroby Parkinsona Warsaw, Poland +48 12 424 86 24 polityka@polityka.com.pl www.zdrowie.med.pl/parkinson

PAKISTAN Pakistan Parkinson's Society* Karachi, Pakistan +92 21 5846855 info@parkinsons.org.pk www.parkinsons.org.pk

PORTUGAL Associação Portuguesa de Doentes de Parkinson Lisboa, Portugal +351 21 385 0042 parkinsonsede@parkinson.org.pt www.parkinson.org.pt www.parkinson.pt

PERU Asociación Peruana Para La Enfermedad de Parkinson Lima, Peru +511 4361113 cosenti@terra.com.pe

ROMANIA Asociatia Antiparkinson Deva B-dul Dacia, Romania +40 745 231153 robotul2003@yahoo.com www.parkinson.devaonline.ro

POLAND Stowarzyszenie Osob Niepelnosprawnych AKSON Bydgoszcz, Poland +48 52 343 91 97 akson@parkinson.bydgoszcz.pl www.parkinson.bydgoszcz.pl

RUSSIA The Regional Non-Profit Organisation for the Advancement of Parkinsonian Patients Moscow, Russia +7 495 252 36 59 extrapyr@orc.ru SERBIA Serbian Association Against Parkinson's Disease Belgrade, Yugoslavia +381 11 684 771

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Parkinson’s Organizations

SINGAPORE Parkinson’s Disease Society Singapore* Singapore +65 63535 338 pdsspore@gmail.com www.parkinsonsingapore.com

SWITZERLAND Parkinson Schweiz Zurich, Switzerland +41 43 277 20 77 info@parkinson.ch www.parkinson.ch

SLOVENIA Drustvo TREPETLIKA (Parkinson's Disease Society of Slovenia) Ljubljana, Slovenia +386 1515 10 90 drustvo_trepetlika@t-2.net www.trepetlika.si

TAIWAN Taiwan Parkinson Association Taipei, Taiwan +886 2 23123456 ext. 5343

SPAIN Associació Catalana per al Parkinson Barcelona, Spain +34 93 932 454 396 info@catparkinson.org www.catparkinson.org Federación Española de Parkinson Madrid, Spain +34 914 345 371 info@fedesparkinson.org www.fedesparkinson.org Unidos contra el Parkinson portal.unidoscontraelparkinson.com

ParkinsonFörbundet (The Swedish Parkinson's Disease Association) Stockholm, Sweden +46 8 666 20 70 parkinsonforbundet@telia.com www.parkinsonforbundet.se

UKRAINE Ukrainian Parkinson Disease Society Kiev, Ukraine +380 44 432 99 56 ig@geront.kiev.ua UNITED KINGDOM The Cure Parkinson's Trust* London, England, United Kingdom +44 20 7929 7656 cptinfo@cureparkinsons.org.uk www.cureparkinsons.org.uk Parkinson's UK* London, England, United Kingdom +44 20 7931 8080 hello@parkinsons.org.uk www.parkinsons.org.uk Wobbly Williams* Glasgow, Scotland +44 141 416 1642 www.wobblywilliams.com

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Parkinson’s Organizations

SWEDEN Neurologiskt Handikappades Riksförbund Stockholm, Sweden +46 8 677 70 10 nhr@nhr.se www.nhr.se

TURKEY Parkinson Hastaliği Derneği (Turkish Parkinson's Disease Society) Ankara, Turkey +90 2 12 588 3770 elibol@hacettepe.edu.tr www.parkinsondernegi.org

Parkinson’s Treatment Centers

Caring In Parkinson’s

Employment, Insurance, Financial Assistance and Legal Matters

Understanding Parkinson’s Managing Advanced Parkinson’s

Learning About Parkinson’s Parkinson’s Organizations • Movement Disorder Centers • Veterans Affairs Parkinson's Disease Research, Education and Clinical Centers (PADRECCs)

Parkinson’s Treatment Centers

6 Movement Disorder Centers

Movement disorder specialists may be the most qualified doctors to treat Parkinson's because of their in-depth knowledge of the disease. PDF recommends that each person with PD see a movement disorder specialist. The Centers listed on the following pages have been identified as having at least one movement disorder specialist on staff as of February 2011. This list of Centers is largely limited to institutions, typically (though not always) linked to a major hospital and/or university medical center. Please note that a referral may be required in order to be seen at these Centers. This list does not include those community neurology and gerontology groups or solo and small practices that may have movement disorder specialists on staff who are equally qualified to provide Parkinson's care and available to provide consultation or services to people with Parkinson's. If there is not a movement disorder specialist listed in your area, you may still be able to receive good care by finding the right general neurologist, gerontologist, internist, or general practitioner — especially if they are willing to consult with a movement disorder specialist as needed. To find a doctor in your area, please contact PDF's national HelpLine at (800) 457-6676. University of Arizona College of Medicine University Physicians and University Health Care Movement Disorders Clinic Tucson, AZ (520) 694-8888

ARIZONA The Muhammad Ali Parkinson's Center The Barrow Neurological Institute of St. Joseph's Hospital and Medical Center Phoenix, AZ (602) 406-6262

ARKANSAS University of Arkansas for Medical Sciences Neurology Clinic Little Rock, AR (501) 646-5838

Mayo Clinic Scottsdale Department of Neurology Parkinson's and Movement Disorders Center Scottsdale, AZ (480) 301-1735

CALIFORNIA The Parkinson's and Movement Disorders Medical Group Fountain Valley, CA (714) 378-5062

Banner Sun Health Institute Christopher Center for Parkinson Research Sun City, AZ (623) 875-6530 St. Joseph’s Hospital Tucson, AZ (520) 881-8400

Kaiser-Hayward Medical Group Regional Movement Disorders Clinic Hayward, CA (510) 784-4607

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Parkinson’s Treatment Centers

ALABAMA University of Alabama at Birmingham Kirklin Clinic, Parkinson's Disease and Movement Disorders Program Birmingham, AL (205) 801-8986

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

Scripps Clinic Parkinsonâ&#x20AC;&#x2122;s Disease and Movement Disorder Center La Jolla, CA (858) 554-8864

Hoag Hospital Neuroscience Institute Parkinson's and Movement Disorders Program Newport Beach, CA (949) 764-6998

University of California at San Diego Neurology Clinic La Jolla, CA (858) 657-8540

University of California at Irvine Orange, CA (714) 456-7239

Loma Linda University School of Medicine Department of Neurology Loma Linda, CA (909) 558-2880

Kaiser Medical Center at Sacramento Department of Neurology Sacramento, CA (916) 973-5175

Cedars-Sinai Medical Center Department of Neurology Los Angeles, CA (800) 233-2771/(310) 423-6472

University of California at Davis Medical Group Neurology Clinic Movement Disorders Program Sacramento, CA (916) 734-3588

Keck School of Medicine of the University of Southern California Department of Neurology Parkinson's Disease and Other Movement Disorders Center Los Angeles, CA (323) 442-5728 University of California at Los Angeles - Westwood UCLA Neurological Services in Westwood Movement Disorders Program Los Angeles, CA (310) 794-1195

University of California at San Francisco UCSF Neurology Practice San Francisco, CA (415) 353-2273 Stanford University Medical Center Neuroscience Clinic Comprehensive Movement Disorders Center Stanford, CA (650) 723-6469 The Parkinson's Institute and Clinical Care Center Sunnyvale, CA (408) 734-2800

Kaiser Permanente Neurology Clinic Walnut Creek, CA (925) 295-6953 COLORADO University of Colorado Hospital Neurosciences Center Movement Disorder Practice Aurora, CO (720) 848-2080 Rocky Mountain Movement Disorder Center and The Colorado Neurological Institute (CNI) Movement Disorder Center Englewood, CO (303) 357-5455 CONNECTICUT University of Connecticut Health Center Neurology and Nephrology Clinic Farmington, CT (860) 679-4888 Yale University School of Medicine Yale Medical Group Department of Neurology New Haven, CT (203) 785-4085 DISTRICT OF COLUMBIA Georgetown University Hospital Department of Neurology Movement Disorder Clinic Washington, DC (202) 444-4249 Washington Hospital Center Department of Neurology Washington, DC (202) 877-3627

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Parkinsonâ&#x20AC;&#x2122;s Treatment Centers

FLORIDA University of Florida Department of Neurology Movement Disorders Center Gainesville, FL (352) 265-8408

Medical College of Georgia - MCG Health Neuroscience Center - Movement Disorders Center Augusta, GA (706) 721-4581

Mayo Clinic - Jacksonville Jacksonville, FL (904) 953-2272

St. Joseph's/Candler Institute for Neurosciences Movement Disorders Program Savannah, GA (912) 354-7676/(912) 819-2224

University of Miami - Miller School of Medicine Department of Neurology The Center for Parkinson's Disease and Movement Disorders Miami, FL (800) 243-6732, option 1 or (305) 243-6732

HAWAII Kaiser Permanente Neuroscience Clinic Honolulu, HI (808) 432-7450

Tallahassee Memorial Hospital Neuroscience Center Parkinson's Research Foundation Center of Excellence Tallahassee, FL (850) 431-5037 University of South Florida Health College of Medicine Parkinson's Research Foundation Center of Excellence Tampa, FL (888) 873-3627/(813) 974-2201

GEORGIA Emory University School of Medicine Department of Neurology Wesley Woods Health Center Movement Disorders Center Atlanta, GA (404) 778-3444

ILLINOIS Northwestern University Department of Neurology Parkinson's Disease and Movement Disorders Center Chicago, IL (312) 695-7950 Rush University Medical Center Department of Neurological Sciences Rush Movement Disorders Group Chicago, IL (312) 563-2030 University of Chicago Medical Center The Center for Parkinson's Disease and Movement Disorders Chicago, IL (888) 824-0200 Alexian Brothers Neurosciences Institute The Movement Disorders Center Elk Grove Village, IL (847) 981-3630

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Parkinsonâ&#x20AC;&#x2122;s Treatment Centers

Cleveland Clinic - Weston Department of Neurology Weston, FL (877) 463-2010/(954) 659-5671

IDAHO Idaho Elks Rehabilitation Hospital Movement Disorders Center at the Elks Boise, ID (208) 489-4599

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

Southern Illinois University School of Medicine Department of Neurology Springfield, IL (217) 545-8417

Ochsner Medical Center Department of Neurology New Orleans, LA (504) 842-3980

INDIANA Indiana University Medical Center Center of Excellence in Parkinson's Disease and Huntington's Indianapolis, IN (317) 278-5450

LSU Health Sciences Center Parkinson's Resource Center and Clinic Shreveport, LA (318) 675-4613

IOWA Iowa Health Physicians Methodist Specialty Des Moines, IA (515) 241-4200 University of Iowa Hospitals and Clinics Iowa City, IA (319) 384-8111 KANSAS University of Kansas Medical Center Department of Neurology - Landen Center on Aging Parkinson's Disease and Movement Disorder Center Kansas City, KS (913) 588-6820 Wichita Rehabilitation Hospital Wichita Parkinson's Center Wichita, KS (316) 729-1135 KENTUCKY University of Louisville Movement Disorder Clinic Louisville, KY (502) 589-0802 LOUISIANA The NeuroMedical Center Baton Rouge, LA (255) 768-2050

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MARYLAND University of Maryland School of Medicine Neurology and Ambulatory Care Center Maryland Parkinson's Disease and Related Movement Disorders Center Baltimore, MD (800) 492-5538/(410) 328-2999 The Johns Hopkins Parkinson's Disease and Movement Disorder Center Baltimore, MD (410) 955-9441 Parkinson's and Movement Disorders Center of Maryland Elkridge, MD (443) 755-0030 MASSACHUSETTS Beth Israel Deaconess Medical Center Parkinson's Disease and Movement Disorders Center Boston, MA (617) 667-0519 Boston University Medical Center Boston, MA (617) 638-8456 Brigham and Women's Hospital Movement Disorder Center Boston, MA (617) 525-5504

Parkinsonâ&#x20AC;&#x2122;s Treatment Centers

Massachusetts General Hospital Department of Neurology Movement Disorders Unit Boston, MA (617) 726-5532

MINNESOTA SMDC Medical Center Department of Neurology Duluth, MN (800) 626-0144/(218) 786-3925

Lahey Clinic Tufts University School of Medicine Movement Disorders Center Burlington, MA (718) 744-1270

Minneapolis Clinic of Neurology Edina, MN (952) 920-7200

UMass Memorial Medical Center Department of Neurology Worcester, MA (508) 856-2527 MICHIGAN University of Michigan East Ann Arbor Health and Geriatric Center Ann Arbor, MI (734) 764-6831

Struthers Parkinson's Center Golden Valley, MN (952) 993-5495 University of Minnesota Medical Center Department of Neurology Minneapolis, MN (612) 626-9658 Mayo Clinic - Rochester Department of Neurology Rochester, MN (507) 284-1588

Detroit Medical Center Department of Neurology Movement Disorders Clinic Detroit, MI (888) 362-2500/(313) 745-4275

Bethesda Hospital Capistrant Center for Parkinson's Disease and Movement Disorder Center St. Paul, MN (651) 326-2178

Michigan State University Department of Neurology East Lansing, MI (517) 353-8122

MISSOURI Parkinson's Clinic of The Ozarks Springfield, MO (417) 269-3616

Henry Ford West Bloomfield Hospital Movement Disorder Center West Bloomfield, MI (248) 325-2452/(800) 436-7936

Washington University School of Medicine Department of Neurology Movement Disorders Center St. Louis, MO (314) 362-6908

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Parkinsonâ&#x20AC;&#x2122;s Treatment Centers

Mid-Michigan Medical Center Movement Disorders Center Midland, MI (989) 839-3023

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

NEBRASKA University of Nebraska Neurological Sciences Center Omaha, NE (800) 922-0000/(402) 559-8600 NEVADA University of Nevada University Health System Las Vegas and Reno, NV (702) 671-5070 (Las Vegas)/ (775) 784-7500 (Reno) NEW HAMPSHIRE Dartmouth-Hitchcock Medical Center Movement Disorders Program Lebanon, NH (603) 650-5104 NEW JERSEY New Jersey Neuroscience Institute at JFK Medical Center Edison, NJ (732) 321-7010 Robert Wood Johnson University Hospital Parkinson's and Movement Disorders Center New Brunswick, NJ (732) 235-7733 Overlook Hospital Atlantic Neuroscience Institute Summit, NJ 07902 (908) 522-6144 NEW MEXICO HealthSouth Rehabilitation Parkinson's and Movement Disorder Center Albuquerque, NM (505) 797-3771 University of New Mexico Hospital Clinical Neuroscience Center Albuquerque, NM (505) 277-0760

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NEW YORK Albany Medical Center Movement Disorder and Neurosciences Institute Albany, NY (518) 262-6611 New York Methodist Hospital The Institute for Neuroscience Brooklyn, NY (718) 246-8614 SUNY Downstate Medical Center Parkinson's Disease and Related Disorders Brooklyn, NY (718) 270-2502 University of Buffalo Buffalo General Hospital Comprehensive Parkinson's Disease and Movement Disorder Center Buffalo, NY (716) 859-7565 Harvey Kushing Institute of Neuroscience at North Shore - Long Island Jewish Hospital Great Neck, NY (516) 570-4477 Beth Israel Medical Center Movement Disorder Group New York, NY (800) 420-4004 Columbia University Medical Center Center for Parkinson's Disease and Other Movement Disorders New York, NY (212) 305-5558 Mt. Sinai Medical Center Movement Disorder Program New York, NY (212) 241-5607

Parkinsonâ&#x20AC;&#x2122;s Treatment Centers

New York University (NYU) Parkinson's and Movement Disorders Center New York, NY (212) 263-4838 Weill Cornell Medical Center Parkinson's Disease and Movement Disorders Institute New York, NY (212) 746-2584 University of Rochester Department of Neurology Movement Disorders Program Rochester, NY (585) 341-7500 NORTH CAROLINA University of North Carolina at Chapel Hill Department of Neurology Movement Disorders Program Chapel Hill, NC (919) 966-5549 Carolinas Medical Center The Carolinas Center for Parkinson's Disease and Movement Disorders Charlotte, NC (800) 924-7620/(704) 446-1900 Duke University Medical Center Duke Neurosciences and Pain Clinic Movement Disorders Clinic Durham, NC (919) 668-7600

Cleveland Clinic Movement Disorders Center for Neurological Restoration Cleveland, OH (866) 588-2264/(216) 636-5860 University Hospitals Case Medical Center of Cleveland Department of Neurological Surgery and the Neurological Institute Cleveland, OH (866) 844-2273 Ohio State University Hospitals Madden Center for Parkinson's Disease & Related Disorders Columbus, OH (614) 293-4969 The University of Toledo Medical Center Parkinson's and Movement Disorders Program Toledo, OH (800) 321-8383 ext. 3760/(419) 383-3760 OKLAHOMA Oklahoma University Health Sciences Center OU Physicians Neurology Clinic Department of Neurology Oklahoma City, OK (405) 271-3635 OREGON Oregon Health & Sciences University Movement Disorders Program at Parkinson Center of Oregon Portland, OR (503) 494-7230

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Parkinsonâ&#x20AC;&#x2122;s Treatment Centers

Wake Forest University Baptist Medical Center Department of Neurology Movement Disorders Unit Winston-Salem, NC (336) 716-4101

OHIO University of Cincinnati UC Physicians Neurology The Gardner Center for Parkinson's Disease and Movement Disorders Center Cincinnati, OH (513) 475-8730

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

PENNSYLVANIA Milton S. Hershey College of Medicine Penn State University Neuroscience Center Hershey, PA (800) 292-3332/(717) 531-4191

SOUTH CAROLINA Medical University of South Carolina Charleston Memorial Hospital Movement Disorder Program Charleston, SC (843) 792-3223

Jefferson Hospital for the Neurosciences Parkinson's Disease and Movement Disorders Center Philadelphia, PA (800) 654-5984/(215) 503-2724

TENNESSEE University of Tennessee Health Sciences Center UT Medical Group Department of Neurology Memphis, TN (901) 448-7900

University of Pennsylvania Health System Pennsylvania Hospital Neurological Institute and Movement Disorder Center Philadelphia, PA (800) 789-7366/(215) 829-6500 University of Pittsburgh Medical Center UPP Physicians Practice Department of Neurology Pittsburgh, PA (412) 692-4920 Crozer-Chester Medical Center The Parkinson's Disease and Movement Disorder Center Upland, PA (610) 447-6380 PUERTO RICO University of Puerto Rico Medical Sciences Campus Department of Neurology San Juan, PR (787) 754-0101 RHODE ISLAND Butler Hospital Movement Disorders Program Providence, RI (401) 455-6669

Vanderbilt University Medical Center Parkinson's Disease Clinic Nashville, TN (615) 936-0060 TEXAS UT Southwestern Medical Center Neurology Clinic and Clinical Center for Multiple Sclerosis Dallas, TX (214) 645-8800 Baylor College of Medicine Parkinson's Disease Center and Movement Disorders Clinic Houston, TX (713) 798-7438 Methodist Neurological Institute Parkinson's and Movement Disorders Clinic Houston, TX (713) 441-3780 Scott & White - University Medical Campus Neuroscience Institute Plummer Movement Disorders Center Temple, TX (254) 724-4179 East Texas Medical Center Movement Disorder Center Tyler, TX (903) 535-6092

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Parkinsonâ&#x20AC;&#x2122;s Treatment Centers

UTAH University of Utah Health Sciences Imaging and Neuroscience Center Movement Disorder Clinic Salt Lake City, UT (801) 587-3899

WEST VIRGINIA Marshall University Medical Center Department of Neuroscience Movement Disorders Program Huntington, WV (304) 691-1787

VERMONT University of Vermont Fletcher Allen Neurology Health Care Service Movement Disorders Clinic Burlington, VT (802) 847-4589

West Virginia University School of Medicine Department of Neurology Morgantown, WV (304) 598-6127

VIRGINIA University of Virginia Movement Disorders Program Charlottesville, VA (800) 251-3627/(434) 924-3627 Virginia Commonwealth University Medical Center Division of Neurology Richmond, VA (804) 828-9350 WASHINGTON Booth Gardner Parkinson's Care Center Kirkland, WA (425) 899-3123

University of Washington Medical Center Neurology Clinic Seattle, WA (800) 852-8546

University of Wisconsin-Madison Department of Neurology Movement Disorder Program Madison, WI (608) 262-0550 Marshfield Clinic Department of Neurology Marshfield, WI (800) 699-3377/(715) 387-5350 Aurora Sinai Medical Center Parkinson's Care Milwaukee, WI (888) 863-5502/(414) 219-7450 Froedtert and Medical College of Wisconsin Neuroscience Clinic Parkinson's and Movement Disorders Program Milwaukee, WI (800) 272-3666/(414) 805-8710

Virginia Mason Medical Center Neuroscience Institute Seattle, WA (206) 341-0420

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Parkinsonâ&#x20AC;&#x2122;s Treatment Centers

Northwest Hospital and Medical Center Department of Neurology Seattle, WA (206) 364-0500

WISCONSIN Gundersen Lutheran Medical Center Neuroscience Clinic Movement Disorder Clinic LaCrosse, WI (608) 775-9000

Parkinson’s Disease Resource List

Veterans Affairs Parkinson’s Disease Research, Education & Clinical Centers (PADRECCs) The Department of Veterans' Affairs established the following Parkinson’s Centers of Excellence to deliver clinical care, research, outreach programs and educational materials to veterans living with PD. Houston PADRECC Houston, TX (713) 794-7841 www.parkinsons.va.gov/Houston/ index.asp Northwest PADRECC Portland, OR and Seattle, WA (503) 721-1091 nwpadrecc@va.gov www.portland.va.gov/padrecc.asp The Northwest PADRECC serves veterans in Alaska, Washington, Oregon, Idaho, Montana, Wyoming, North Dakota, South Dakota, Nebraska and Iowa. Philadelphia PADRECC Philadelphia, PA (800) 949-2323/(215) 823-5934 www.parkinsons.va.gov/Philadelphia/ index.asp San Francisco PADRECC San Francisco, CA (415) 379-5530 www.parkinsons.va.gov/SanFrancisco /index.asp

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Southwest PADRECC Los Angeles, CA 310-478-3711 ext. 48001 www.parkinsons.va.gov/SouthWest/ index.asp The Southwest PADRECC serves veterans in California, Nevada, Arizona and New Mexico. Southeast PADRECC Richmond, VA (800) 784-8381 ext. 5931/(804) 675-5931 www.parkinsons.va.gov/Richmond/ index.asp The Southeast PADRECC serves veterans living in Virginia, West Virginia, Maryland, District of Columbia, North Carolina, South Carolina, Tennessee, Georgia, Alabama, Kentucky, Florida and Puerto Rico.

Subject Index

Note: See also Location Index and Resource Index A accuracy of online information, 6 activities, daily living, 27, 92–94 See also living with a Parkinson's diagnosis adaptive devices, See adaptive equipment adaptive equipment and supplies financial assistance for, 56 sources for, 56 using, 27, 28 adult day-care services, 89 advance directives, 81 See also legal advanced Parkinson's, managing advanced Parkinson's alternative diagnoses and Parkinsonisms, 16–18 alternative (holistic) therapy, 41–42 alternatives to the home setting, 56, 99 appointment checklist, 7 aquatic exercise, 36, 38 art, 40–41 Parkinson’s Quilt, 41 touch drawing, 40 assistance dogs, 50, 51 atypical Parkinson's (Parkinsonisms), 16–18

B balance and falls, 9, 40, 51 bed sores, 97 behavioral function, 10 benefits of exercise, 30 bereavement and grief, 101, 102, 103 bladder control, 12, 13 blogs for reliable health information, 6 bone health, 34, 35 building a support network, 46 building your health care team, 28 buying equipment and supplies, 56

C care partners support for, 85–91 tips on maintaining independence, 94 See also depression; end of life; legal and financial issues caregiving and family and friends, 85 by adult children, 88, 91 creating an online support network, 93 from a distance, 88

online forums and listservs, 87 providing daily care, 92-95 career issues, 69–71 caring in Parkinson's, 84–95 See also diagnosis; disabilities; family and friends; finding the right resource; insurance; learning about Parkinson's; living with a Parkinson's diagnosis; managing advanced Parkinson's; medications; nonmotor symptoms and complications; organizations; Parkinson's disease (PD); support; treating Parkinson's; treatment centers caring for the care partner, 86 children learning about Parkinson's, 89, 94–95 daily care, providing, 27, 92–94 family and friends, 4, 46, 47, 82, 85–91, 92, 94 fatigue and sleep, 11–12, 14, 24, 27, 86 finding support, 47–50, 58, 86 health of care partner, 86 providing daily care, 27, 92–94 sleep and fatigue, 11–12, 14, 24, 27, 86 support for care partners, 85–91 support groups, 46, 48, 58, 86 young children learning about Parkinson's, 89, 94–95 case management services, 46 CBD (Corticobasal Degeneration), 16, 18 See also Parkinsonisms chewing and swallowing difficulty, 31, 33, 34 children and Parkinson's learning about Parkinson's, 89, 94–95 young onset Parkinson's disease, 45, 47, 59 choosing a health plan, 42 choosing doctors, 7, 28, 42 choosing hospitals, 42 See also hospitalization choosing the right resource. See finding the right resource clinical studies (trials, research), 19–24, 58 questions to ask, 21-23 rights and responsibilities, 21 volunteering for, 19-23 cognitive issues, 10, 14–15, 98 commercial sites for reliable health information, 6 community (PD), getting involved, 58 community health networks, 46 complementary and alternative therapies, 41–42

137

Parkinson’s Disease Resource List

conferences, attending, 58 constipation, 12, 33, 35 recipes for, 33, 35 See also nutrition continence (incontinence), 12, 13 cooking and nutrition, 32–35 coping with Parkinson's, 42–45 Corticobasal Degeneration (CBD), 16, 18 See also Parkinsonisms counseling services (professional), 46 creativity, 40

D daily care, providing, 27, 92–94 See also living with a Parkinson's diagnosis dance, 36 See also exercise Data Safety Monitoring Boards (DSMBs), DBS, See deep brain stimulation death, 100-103 deep brain stimulation (DBS), 26, 27 personal stories 57, 59, 62 dementia, 14, 62 and caregivers, 92 See also cognitive changes dental health, 16 Department of Justice, 81 Department of Labor, 82 depression, 14 diagnosis See also caring in Parkinson's; disabilities; family and friends; finding the right resource; insurance; learning about Parkinson's; living with a Parkinson's diagnosis; managing advanced Parkinson's; medications; nonmotor symptoms and complications; organizations; Parkinson's disease (PD); Resource List Index; support; treating Parkinson's; treatment centers adjustment to, 45 alternative diagnoses and Parkinsonisms, 16–18 and the family, 90, 94–95 newly diagnosed, 7–8, 60 sharing the, 45 diet (nutrition), 32–35 dietitians, 32 disabilities See also caring in Parkinson's; diagnosis; family and friends; finding the right resource; insurance; learning about Parkinson's; living with a Parkinson's diagnosis; managing advanced Parkinson's; medications; nonmotor symptoms and complications; organizations; Parkinson's

138

disease (PD); support; treating Parkinson's; treatment centers benefits, 71–74 estate planning, 82 insurance, 72 job opportunities, law and, 69, 81 secrets, 73 Social Security, 70, 72, 73–75, 78, 89 work-related assessment, 69, 70 doctor, finding the right, 7, 28 dogs (assistance), 50, 51 dopamine, 15, 59 driving, 52–53 when to stop, 53 drug assistance programs, 76, 78, 79, 80 drugs. See medications durable power of attorney, 83 dysarthria, See dysphagia dysphagia, 33

E eating and nutrition, 32–35 eating disorder, 15 educational symposiums, 58 EEOC (Equal Employment Opportunity Commission), 71 elder abuse, 91 Eldercare Locator Service, 43, 46, 78, 89, 97 elder law, 83 email discussion and list serv groups, 6, 18, 43, 47, 49, 50, 85, 87, 101 emergency room and PD, 53, 55, 99 See also hospitalization emergency response systems, 43, 97 emotional effects, 5, 14, 43, 45, 46, 48, 60, 63, 86, 92 employment issues, 69 –71 See also Social Security Disability Insurance, Supplemental Security Income (SSI); US Department of Labor, Office of Disabilities, end of life, 100–103 See also hospice, palliative care Equal Employment Opportunity Commission (EEOC), 71 equipment and supplies, 56 essential tremor, 17 See also Parkinsonisms exercise (fitness), 36– 40, 61 and flexibility, 36–38 benefits of, 37 getting in and out of bed, 39 and posture, 28, 38, 44 seated, 38, 39 See also falls, Qigong, Tai Chi, yoga

Subject Index

falls and balance, 9, 40, 51 prevention, 9, 51 family and friends See also caring in Parkinson's; diagnosis; disabilities; finding the right resource; insurance; learning about Parkinson's; living with a Parkinson's diagnosis; managing advanced Parkinson's; medications; nonmotor symptoms and complications; organizations; Parkinson's disease (PD); support; treating Parkinson's; treatment centers learning about Parkinson's, 4 living with a Parkinson's diagnosis, 46, 47, 49 support for, 82, 85–91, 92, 94 FAQs (frequently asked questions), 4, 74, 99, 100 fatigue and sleep, 10, 11–12, 14, 24, 27, 86 FDA (Food and Drug Administration) approved drugs, 24, 25, 26 financial assistance, 76, 77–80 See also adaptive equipment; medications; senior housing finding the right resource See also caring in Parkinson's; diagnosis; disabilities; family and friends; insurance; learning about Parkinson's; living with a Parkinson's diagnosis; managing advanced Parkinson's; medications; nonmotor symptoms and complications; organizations; Parkinson's disease (PD); support; treating Parkinson's; treatment centers care, 46 doctor, 7, 28, 42 hospital, 43, 55 insurance, 71–75 nursing home, 89, 99 reliable health information online, 6 support, 46–50, 58, 86 team, 28 fitness (exercise), 36–40, 61 flexibility, 37, 40 Food and Drug Administration (FDA) approved drugs, 24, 25, 26 food and nutrition, 32, 33, 34, 35 freezing, 10 frequently asked questions (FAQs), 4, 74, 99, 100 French resources, 12, 17, 53, 55 fundraisers, 58 future, planning for, 83

gambling, 15 gastrointestinal and urinary function, 12–13 gay caregivers, 82 GCM (Geriatric Care Manager), 46, 93 general information about Parkinson's disease, 1–5 genetics, 1, 4, 20 geriatric care managers (GCM), 46, 93 German resources, 3, 12, 27, 36, 53, 55 getting involved with the PD community, 58 glossary of terms, 3, 5 Greek resources, 31, 35, 37 grief and bereavement, 101, 102, 103 group leader's manual, 48

Subject Index

H handwriting changes, 9 health care plans. See insurance health care team building a team, 28 health networks (community), 46 health of care partner, 86 Helpline, 1, 30, 42, 44 holistic therapy, 41–42 home, living at, 97–99 home care, 46, 49, 87, 88, 89, 97, 98, 102 home health services finding, 43, 51, 97 paying for, 77 home modification, 56, 99 See also adaptive equipment; financial assistance home setting, alternatives to, 99 hospice, 81, 98, 102, 103 hospitalization, 55 checklist for, 55 medical alert card, 55 hydrocephalus, 17 See also Parkinsonisms hypersexuality, 15

I impulse control disorder (ICD), 15 See also Parkinsonisms incontinence, 12, 13 management strategies for, 12, 13 independent, staying, 27, 50–51 independent Parkinson's organizations, 106–108 insurance, 71–75 See also caring in Parkinson's; diagnosis; disabilities; family and friends; finding

139

Parkinson’s Disease Resource List

the right resource; learning about Parkinson's; living with a Parkinson's diagnosis; managing advanced Parkinson's; medications; nonmotor symptoms and complications; organizations; Parkinson's disease (PD); support; treating Parkinson's; treatment centers free medical clinics, 72 general information, 71–72 long-term care insurance, 72 Medicare, 72, 73, 99 rating health care plans, 72 Social Security, 70, 72, 73–75, 78, 89 understanding health plans, 42 veterans resources, 75 international Parkinson's organizations, 120–125 Internet as source for reliable health information, 6 See also online forums interventional studies, 20 intimacy and sexuality, 15, 44, 45 Italian resources, 3, 27, 34, 36, 53, 55

J job issues, 69–71

L LBD (Lewy body dementias), 17, 18, 62 See also Parkinsonisms learning about Parkinson's, 1–24 See also caring in Parkinson's; diagnosis; disabilities; family and friends; finding the right resource; insurance; living with a Parkinson's diagnosis; managing advanced Parkinson's; medications; nonmotor symptoms and complications; organizations; Parkinson's disease (PD); support; treating Parkinson's; treatment centers accuracy of online information, 6 balance and falls, 9, 40, 51 clinical studies (trials, research), 19–24, 58 commercial sites for reliable health information, 6 falls and balance, 9, 40, 51 general information about Parkinson's Disease, 1–5 interventional studies, 20 motor symptoms, 8–9 newly diagnosed, 7–8, 60 nonprofit sites for reliable health information, 6 observational studies, 20 online forums, 6, 18, 42, 47, 49, 50, 85, 87, 101 participating in a clinical study, 20 source transparency of online information, 6

140

Lee Silverman Voice Treatment® (LSVT®) LSVT Loud, 28, 30 LSVT Big, 30 legal matters, 81–83 and care partners, 82 for LGBT care partners, 82 living wills, 83 power of attorney, 83 See also advance directives lesbian caregivers, 82 Lewy body dementias (LBD), 17, 18, 62 See also Parkinsonisms LIHEAP (Low Income Home Energy Assistance Program), 79 list serv groups, 6, 18, 42, 47, 49, 50, 85, 87, 101 living at home, 97–99 living will, 83, 103 See also legal matters living with a Parkinson's diagnosis, 42–67 See also caring in Parkinson's; diagnosis; disabilities; family and friends; finding the right resource; insurance; learning about Parkinson's; managing advanced Parkinson's; medications; nonmotor symptoms and complications; organizations; Parkinson's disease (PD); support; treating Parkinson's; treatment centers accessing adaptive equipment and supplies, 56 activities, daily living, 27, 92–94 building a support network, 46 buying equipment and supplies, 56 case management services, 46 community (PD), getting involved, 58 community health networks, 46 conferences, attending, 58 coping with Parkinson's, 42–45 counseling services (professional), 46 daily care, providing, 27, 92–94 driving, 52–53 educational symposiums, attending, 58 equipment and supplies, 56 finding support, 47–50, 58, 86 fundraisers, 58 home, living at, 97–99 hospitalization, 42, 43, 55 independent, staying, 27, 50–51 personal stories, 57–67 professional counseling services, 46 retreats, attending, 58 start an awareness event, 58 staying independent, 27, 50–51 stories (personal), 57–67

Subject Index

M maintaining independence, 27, 50–51 managing advanced Parkinson's, 96–103 See also caring in Parkinson's; diagnosis; disabilities; family and friends; finding the right resource; insurance; learning about Parkinson's; living with a Parkinson's diagnosis; medications; nonmotor symptoms and complications; organizations; Parkinson's disease (PD); support; treating Parkinson's; treatment centers alternative to the home setting, 56, 99 end of life, 100–103 living at home, 97–99 massage therapy, 41 MDS (movement disorder specialist), 28, 127 medical alert card, 55 medical appointments appointment checklist, 7 Medicaid, 72, 73, 99 Medicare, 72, 73, 99 medications cost, 76, 78, 79 financial assistance for, 76, 78, 79, 80 managing, 3, 34 saving on, 76, 78, 79, 80 schedule, 25, 33 supplements, 24 treating Parkinson's, 24–26 when to begin, 25 meditation, 39, 44 memory. See cognition and mood misconceptions and myths, 5 mobility assistance dogs, 50, 51 mood and cognition, 10, 14–15, 98

Subject Index

supplies and equipment, 56 support, finding, 47–50, 58, 86 support groups, 46, 48, 58, 86 support network, building, 46 telling your story, 57–67 traveling, 53–54 unplanned hospitalization, 55 young onset Parkinson's disease, 45, 47, 59 local/independent Parkinson's organizations, 106–108 low blood pressure (orthostatic hypotension), 16 Low Income Home Energy Assistance Program (LIHEAP), 79 LSVT®. See Lee Silverman VoiceTreatment®

motor symptoms, 8–9 See also physical therapy movement disorder centers, 127–135 movement disorders cognition and mood, 10, 14–15, 98 glossary of terms, 3, 5 movement disorder specialist (MDS), 28 Multiple System Atrophy, 16, 17, 18 See also Parkinsonisms music, 40–41 myths and misconceptions, 5

N National Energy Assistance and Referral (NEAR) Project, 79 national Parkinson's organizations, 105 NEAR (National Energy Assistance and Referral) Project, 79 neuro-ophthalmology, 15 newly diagnosed, 7–8, 60 See also diagnosis newspapers, writing articles for, 58 nonmotor symptoms, 10–18 See also caring in Parkinson's; diagnosis; disabilities; family and friends; finding the right resource; insurance; learning about Parkinson's; living with a Parkinson's diagnosis; medications; managing advanced Parkinson's; organizations; Parkinson's disease (PD); support; treating Parkinson's; treatment centers alternative diagnoses and Parkinsonisms, 16–18 cognition and mood, 10, 14–15, 98 fatigue and sleep, 11–12, 14, 24, 27, 86 gastrointestinal and urinary function, 12–13 general information, 10 impulse control disorder (ICD), 15 mood and cognition, 10, 14–15, 98 oral healthcare, 16 orthostatic hypotension (low blood pressure), 16 pain, 11, 100, 101, 102 Parkinsonisms and alternative diagnoses, 16–18 sleep and fatigue, 11–12, 14, 24, 27, 86 urinary and gastrointestinal function, 12–13 vision, 15 nonprofit sites for reliable health information, 6 notification card for traveling, 54 nursing homes, 89, 99 finding, 99

141

Parkinson’s Disease Resource List

nutrition and bone health, 34, 35 and constipation, 33, 35 and swallowing, 33, 35 online forum, 32 protein, 33, 34 recipes, 33, 34, 35

O observational studies, 20 occupational therapist, 28 occupational therapy, 27, 28–32 online forums, 6, 18, 42, 47, 49, 50, 85, 87, 101 online research, 19, 21, 23 oral healthcare, 16 organizations, 104–125 See also caring in Parkinson's; diagnosis; disabilities; family and friends; finding the right resource; insurance; learning about Parkinson's; living with a Parkinson's diagnosis; managing advanced Parkinson's; medications; nonmotor symptoms and complications; Parkinson's disease (PD); support; treating Parkinson's; treatment centers international Parkinson's organizations, 120–125 local/independent Parkinson's organizations, 106–108 national Parkinson's organizations, 105 state chapters and networks, 109–119 orthostatic hypotension (low blood pressure), 16

P PADRECCs (Veterans Affairs Parkinson's Disease Research, Education & Clinical Centers), 136 pain, 11, 100, 101, 102 See also end of life palliative care, 81, 98, 100 Parkinsonisms and alternative diagnoses, 16–18 Parkinson's disease (PD) See also caring in Parkinson's; diagnosis; disabilities; family and friends; finding the right resource; insurance; learning about Parkinson's; living with a Parkinson's diagnosis; managing advanced Parkinson's; medications; nonmotor symptoms and complications; organizations; support; treating Parkinson's; treatment centers drug assistance programs, 76, 78, 79, 80 employment issues, 69–71 financial assistance, 76, 77–80 legal matters, 81–83 medications, saving on, 76, 78, 79, 80

142

pharmaceutical patient assistance programs, 76, 78, 79, 80 saving on medications, 76, 78, 79, 80 Parkinson's Disease Research, Education & Clinical Centers (PADRECCs), 136 Parkinson's Pipeline Project, 22 Parkinson's Plus Syndromes (PSP), 18, 60, 62 See also Parkinsonisms participating in a clinical study, 20 PD. See Parkinson's disease PDtrials, 19, 20, 22, 23, 58 personal stories, 57–67 pesticides, 2 pharmaceutical patient assistance programs, 76, 78, 79, 80 phases of clinical trials, 20 physical therapists, 28 physical therapy, 27, 28–32 benefits of, 28 and insurance, 71 physician, finding the right, 7, 28 posture, 8 power of attorney, 83 prescription drugs. See medications pressure ulcers, 97 professional counseling services, 46 Progressive Supranuclear Palsy (PSP), 16, 18 See also Parkinsonisms protein, 33, 34 providing daily care, 27, 92–94 PSP (Parkinson's Plus Syndromes), 18, 60, 62 See also Parkinsonisms PSP (Progressive Supranuclear Palsy), 16, 18 See also Parkinsonisms psychiatric changes, 2, 28, 46, 48 psychologists, locator service, 48

Q Qigong, 37 quilt project, 41

R recipes and nutrition, 32, 33, 34, 35 referrals, 1, 17, 44, 100 relationships, managing healthy, 49 See also family and friends; living with a Parkinson's diagnosis; support relaxation techniques, 14, 44, 51 respite care, 92 See also caregiving retreats, attending, 58

Subject Index

saving on medications, 76, 78, 79, 80 seated exercise, 39 self-help, 5, 64, 88, 121 senior housing, 77, 78, 89 service dogs, 50, 51 sexuality and intimacy, 15, 44, 45 sharing a PD diagnosis, 45, 57, 59-67 shopping disorder, 15 Shy-Drager Syndrome/Multiple System Atrophy, 17 See also Parkinsonisms sleep, 4, 10–12, 14, 24, 27, 86 coping strategies, 10, 11, 12, 27 for care partners, 86 treatment, 12, 24 Social Security, 70, 72, 73–75, 78, 89 Social Security Disability (SSD) Insurance, 74 social workers, 28 source transparency of online information, 6 Spanish resources,1, 4, 7, 10, 11, 12, 13, 14, 16, 17, 18, 24, 27, 30, 31, 34, 35, 37, 42, 44, 53, 55, 69, 70, 71, 73, 77, 79, 80, 81, 82, 88, 89, 92, 94, 97, 101 speech and voice issues, 27, 28-32 speech-language pathologist, 28 online forum, 32 speech therapy, 27, 28–32 directory of speech-language pathologists, 27 SSD (Social Security Disability) Insurance, 70, 74 SSI (Supplemental Security Income), 70 starting an Awareness Event, 58 state chapters and networks, 109–119 staying independent, 27, 50–51 stories (personal), 57–67 story, telling your, 57-67 stress management, 14, 15, 28, 46, 70, 87 Supplemental Security Income (SSI), 70 supplements, 24 supplies and equipment, 56 support See also caring in Parkinson's; diagnosis; disabilities; family and friends; finding the right resource; insurance; learning about Parkinson's; living with a Parkinson's diagnosis; managing advanced Parkinson's; medications; nonmotor symptoms and complications; organizations; Parkinson's disease (PD); treating Parkinson's; treatment centers building a support network, 46

Subject Index

care partners, 85–91 finding support, 47–50, 58, 86 young children learning about, 94 support groups, 46, 48, 58, 86 finding a group, 44, 46 leaders manual, 48 starting a group, 48, 50 surgical treatments, 26–27 swallowing difficulty, 31, 33, 34 syndromes (Parkinsonisms), 16–18

T Tai Chi, 37, 39 Tardive Dyskinesia, 18 See also Parkinsonisms team, building your, 28 telling your story, 57–67 transgendered caregivers, 82 traveling, 53–54 medical alert card, 55 notification card, 54 treating Parkinson's, 24–42 See also caring in Parkinson's; diagnosis; disabilities; family and friends; finding the right resource; insurance; learning about Parkinson's; living with a Parkinson's diagnosis; managing advanced Parkinson's; medications; nonmotor symptoms and complications; organizations; Parkinson's disease (PD); support; treatment centers alternative (holistic) therapy, 41–42 art and music, 40–41 building your health care team, 28 complementary therapy, 41–42 exercise (fitness), 36–40, 61 holistic therapy, 41–42 medications, 24–26 music and art, 40–41 nutrition, 32–35 occupational therapy, 27, 28–32 physical therapy, 27, 28–32 speech therapy, 27, 28–32 surgical treatments, 26–27 team, building your, 28 treatment centers movement disorder centers, 127–135 Veterans Affairs Parkinson's Disease Research, Education & Clinical Centers (PADRECCs), 136 types of clinical studies, 20

143

Parkinson’s Disease Resource List

U understanding Parkinson's. See learning about Parkinson's Unified Parkinson's Disease Rating Scale (UPDRS), 5 unplanned hospitalization, 55 UPDRS (Unified Parkinson's Disease Rating Scale), 5 urinary and gastrointestinal function, 12–13 US Department of Justice, 81 US Department of Labor, 82 US Equal Employment Opportunity Commission (EEOC), 71 US Food and Drug Administration (FDA) approved drugs, 24, 25, 26

V Veterans Affairs Parkinson's Disease Research, Education & Clinical Centers (PADRECCs), 136 veterans resources, 75, 136 vision, 15 visiting nurses, 51, 77, 97 voice therapy, 27, 28–32

W websites for reliable health information, 6 work issues, 69–71 writing personal stories, 57, 58, 59–66

Y yoga, 39, 40 young children learning about Parkinson's, 89, 94–95 young onset Parkinson's disease and relationships, 45, 47 career and financial issues, 45, 47 personal stories, 59 psychological issues, 45, 47 supportive resources, 45, 47

144

Location Index

Note: See also Resource Index and Subject Index A Alabama (AL) Parkinson Association of Alabama (PAA), Birmingham, 107, 109 Southeast PADRECC (Richmond, VA), 136 University of Alabama at Birmingham, Department of Neurology (APDA I&R Center and Chapter), 109 University of Alabama at Birmingham Kirklin Clinic, Parkinson's Disease and Movement Disorders Program, 127 Alaska (AK) Northwest PADRECC (Portland, OR and Seattle, WA), 136 Northwest Parkinson's Foundation (NWPF), Seattle, WA, 107, 109 Argentina Asociación Civil Enfermedad de Parkinson (Buenos Aires), 120 Grupo de Autoayuda Parkinson Argentina (Buenos Aires), 120 Arizona (AZ) APDA Arizona Chapter (Tucson), 109 Banner Good Samaritan Medical Center (APDA I&R Center), Phoenix, 109 Banner Sun Health Institute Christopher Center for Parkinson Research (Sun City), 127 Mayo Clinic Scottsdale Department of Neurology Parkinson's and Movement Disorders Center, 127 Muhammad Ali Parkinson's Center The Barrow Neurological Institute of St. Joseph's Hospital and Medical Center (Phoenix), 127 Parkinson Network of Arizona (NPF), Phoenix, 109 Southwest PADRECC (Los Angeles, CA), 136 St. Joseph’s Hospital (Tucson), 127 University of Arizona College of Medicine University Physicians and University Health Care Movement Disorders Clinic (Tucson), 127 University of Arizona,Department of Neurology (APDA I&R Center), Tucson, 109 Arkansas (AR) St. Joseph's Regional Health Center (APDA I&R Center and Chapter), Hot Springs, 109 University of Arkansas for Medical Sciences Neurology Clinic (Little Rock), 127

Australia Parkinson's Association of Tasmania Inc. (Lindisfarne), 120 Parkinson's Australia (Scullin), 121 Parkinson's New South Wales (North Ryde), 121 Parkinson's Queensland (Stones Corner), 121 Parkinson's Society of the Gold Coast (Bundall), 120 Parkinson's South Australia Inc. (Unley), 121 Parkinson's Victoria (Cheltenham), 120 Parkinson's Western Australia (Nedlands), 121 Austria Austrian Parkinson's Self-Help Group (Parkinson Selbsthilfe Oesterreich), Wien, 121

B Bahamas Kingdor National Parkinson Foundation (NPF), Nassau, 119 Belgium Association Parkinson (Namur), 121 European Parkinson's Disease Association (EPDA), Brussels, 120 Brazil Associação Brasil Parkinson (Sao Paulo), 121 Parkinson's Society - Rio de Janeiro, 121

C California (CA) APDA Greater Los Angeles Chapter, 110 APDA San Gabriel Valley Chapter (La Verne), 109 Cedars-Sinai Medical Center (APDA I&R Center), Los Angeles, 110, 128 Center for Aging, Research and Education (APDA I&R Center), Northridge, 110 Hoag Hospital - Neuroscience Institute Parkinson's and Movement Disorders Program (Newport Beach), 128 HollyRod Foundation, The (Beverly Hills), 106, 109 Kaiser-Hayward Medical Group Regional Movement Disorders Clinic (Hayward), 127 Kaiser Medical Center at Sacramento, 128 Kaiser Permanente Neurology Clinic (Walnut Creek), 128 Keck School of Medicine of the University of Southern California Department of Neurology Parkinson's Disease and Other Movement Disorders Center (Los Angeles), 128

145

Parkinson’s Disease Resource List

Loma Linda University School of Medicine Loma Linda Neurology Group, 128 Long Beach Memorial Medical Center (APDA I&R Center), 110 NPF Orange County Chapter (Newport Beach), 110 Orange Coast Memorial Medical Center (APDA I&R Center), Fountain Valley, 109 Parkinson Association of Northern California (NPF), Sacramento, 110 Parkinson's and Movement Disorders Medical Group, The (Fountain Valley), 127 Parkinson's Disease Association of San Diego (APDA I&R Center and Chapter), 110 Parkinson's Institute and Clinical Care Center, The (Sunnyvale), 128 Parkinson’s Network of Mount Diablo (NPF), Walnut Creek, 110 Parkinson's Resource Organization (PRO), Palm Desert, 108, 110 Saddleback Memorial Medical Center (APDA I&R Center), Laguna Hills, 110 San Francisco PADRECC, 136 Scripps Clinic (La Jolla), 128 Southwest PADRECC (Los Angeles), 136 Stanford University Medical Center, Department of Neurology (APDA I&R Center), 110 Stanford University Medical Center Neuroscience Clinic Comprehensive Movement Disorders Center, 128 UCLA (APDA I&R Center), Los Angeles, 110 University of California at Davis Medical Group Neurology Clinic Movement Disorders Program (Sacramento), 128 University of California at Irvine (Orange), 128 University of California at Los Angeles - Westwood UCLA Neurological Services in Westwood Movement Disorders Program, 128 University of California at San Diego Neurology Clinic (La Jolla), 128 University of California at San Francisco UCSF Neurology Practice, 128 Canada Parkinson Society Canada (Toronto), 121 Colorado (CO) Colorado Parkinson Foundation, Inc. (NPF), Colorado Springs, 110 Davis Phinney Foundation (DPF), Boulder, 105 Parkinson Association of the Rockies (PAR), Denver, 107, 110 Rocky Mountain Movement Disorder Center and The Colorado Neurological Institute (CNI) Movement Disorder Center (Englewood), 128

146

University of Colorado Hospital Neurosciences Center Movement Disorder Practice (Aurora), 128 Connecticut (CT) APDA Connecticut Chapter (North Haven), 111 Connecticut Parkinson's Working Group (CPWG), Guilford, 106, 110 Hospital of St. Raphael (APDA I&R Center), New Haven, 111 University of Connecticut Health Center Neurology and Nephrology Clinic (Farmington), 128 Yale University School of Medicine Department of Neurology (New Haven), 128 Croatia Croatian Parkinson's Disease and Movement Disorders Association, Zagreb, 121 Cyprus Cyprus Parkinson's Disease Association (Nicosia), 121 Czech Republic Czech Parkinson's Disease Society (Prague), 121

D Denmark Parkinson Foreningen Denmark (Copenhagen K), 121 District of Columbia (DC) Georgetown University Hospital Movement Disorder Clinic, 128 Parkinson's Action Network (PAN), 105 Washington Hospital Center, 128 Southeast PADRECC (Richmond, VA), 136

E Estonia Estonian Parkinson’s Association (Tartu), 122

F Faeroe Islands Parkinsonfelagio (Torshavn), 122 Finland Finnish Parkinson Association, The (Turku), 122 Florida (FL) Alzheimer & Parkinson Association of Indian River County, Inc. (NPF), Vero Beach, 111 APDA South Florida Chapter and I&R Center (Deerfield Beach), 111 Cleveland Clinic - Weston, 129 Edward White Hospital (APDA I&R Center), St. Petersburg, 111 Herbert Kay Parkinson Chapter (NPF), The (Aventura), 111

Location Index

G Georgia Georgian International Charitable Union of Parkinson’s Disease Patients (Tbilisi), 122 Georgia (GA) APDA Georgia Chapter (Atlanta), 111 Central Savannah River Area (CSRA) Parkinson Support Group - Augusta Chapter (NPF), 111 Emory University School of Medicine (APDA I&R Center), Atlanta, 111

Location Index

Mayo Clinic - Jacksonville, 129 National Parkinson Foundation (NPF), Miami, 105 North Florida Parkinson Awareness Group (NPF), Tallahassee, 111 Parkinson Association of Greater Daytona Beach (NPF), Ormond Beach, 111 Parkinson Association of Southwest Florida (NPF), Naples, 111 ParkOptimists (NPF),The (Coral Gables), 111 Southeast PADRECC (Richmond, VA), 136 Southeast Parkinson Disease Association (Orlando), 111 South Palm Beach County Chapter (NPF), Boca Raton, 111 St. Augustine Parkinson's Disease Support Group (NPF), 111 Tallahassee Memorial Hospital Neuroscience Center Parkinson's Research Foundation Center of Excellence, 129 University of Florida Department of Neurology Movement Disorders Center (Gainesville), 129 University of Miami - Miller School of Medicine Department of Neurology The Center for Parkinson's Disease and Movement Disorders, 129 University of South Florida Health College of Medicine Parkinson's Research Foundation Center of Excellence (Tampa), 129 France Association France Parkinson (Paris), 122 Fédération Française des Groupements de Parkinsoniens,La (Savigny en Sancerre), 122

Emory University School of Medicine Department of Neurology Wesley Woods Health Center Movement Disorders Center (Atlanta), 129 Medical College of Georgia, HealthTecDL & Statewide AHEC Program Office, 10 Medical College of Georgia - MCG Health Neuroscience Center - Movement Disorders Center (Augusta), 129 Northwest Georgia Parkinson Disease Association (NPF), Rome, 112 Parkinson’s In The Park (NPF), Springfield, 112 Southeast PADRECC (Richmond, VA), 136 St. Joseph's/Candler Institute for Neurosciences Movement Disorders Program (Savannah), 129 Germany Internationale Parkinson Fonds Deutschland gGmbH (Berlin), 122 Parkinson-Hilfe Deutschland e.V. (Meseberg bei Magdeburg), 122 Greece EPIKOUROS - Kinisis (Movement) Branch (Athens), 122

H Hawaii (HI) Hawaii Parkinson Association (NPF), Honolulu, 112 Kaiser Permanente Neuroscience Clinic (Honolulu), 129 Hong Kong Hong Kong Parkinson’s Disease Association, 122 Hong Kong Parkinson’s Disease Foundation, 122 Hungary Delta Parkinson Egyesulet (Budapest), 122

I Iceland Parkinsonsamtökin á Íslandi (PSÍ), Reykjavik, 122 Idaho (ID) Idaho Elks Rehabilitation Hospital Movement Disorders Center at the Elks (Boise), 129 Northwest PADRECC (Portland, OR and Seattle, WA), 136

147

Parkinson’s Disease Resource List

Northwest Parkinson's Foundation (NWPF), Seattle, WA, 107, 109, 112 Illinois (IL) Alexian Brothers Neurosciences Institute (Elk Grove Village), 129 APDA Midwest Chapter (Wheaton), 112 Central DuPage Hospital (APDA I&R Center), Winfield, 112 Northwestern University Department of Neurology Parkinson's Disease and Movement Disorders Center (Chicago), 129 Parkinson Association of Illinois (NPF), Chicago, 112 Rush University Medical Center Department of Neurological Sciences Rush Movement Disorder Group (Chicago), 129 Southern Illinois University School of Medicine Department of Neurology (Springfield), 130 University of Chicago Medical Center Parkinson's Disease and Movement Disorders Center, 129 India Parkinson's Disease and Movement Disorder Society (PDMDS), Mumbai, 123 Indiana (IN) Indiana University Medical Center of Excellence in Parkinson's Disease and Huntington's (Indianapolis), 130 Parkinson's Awareness Association of Central Indiana (PAACI), Indianapolis, 108, 112 Iowa (IA) APDA Iowa Chapter (Waukee), 112 Iowa Health - Des Moines (APDA I&R Center), Des Moines, 112 Iowa Health Physicians Methodist Specialty (Des Moines), 130 Northwest PADRECC (Portland, OR and Seattle, WA), 136 University of Iowa Hospitals and Clinics (Iowa City), 130 Ireland Parkinson's Association of Ireland (Dublin), 123 Israel Israel Parkinson Association (Tel-Aviv), 123 Italy Associazione Italiana Parkinsoniani (Milan), 123 Azione Parkinson (Lazio), Rome, 123 Parkinson Italia (Milan), 123 World Parkinson Disease Association (Milano), 120

J Japan Japanese Parkinson Disease Association (Tokyo), 123

148

K Kansas (KS) Northeast Kansas Parkinson Association (NPF), Topeka, 112 Parkinson Foundation of the Heartland (NPF), Leawood, 112 University of Kansas Medical Center Department of Neurology - Landen Center on Aging Parkinson's Disease and Movement Disorder Clinic (Kansas City), 130 Wichita Rehabilitation Hospital Wichita Parkinson's Center, 130 Kentucky (KY) Parkinson Support Center of Kentuckiana (Louisville), 108, 112 Southeast PADRECC (Richmond, VA), 136 University of Kentucky (APDA I&R Center), Lexington, 112 University of Louisville Movement Disorder Clinic (Louisville), 130

L Lithuania Lithuanian Parkinson's Disease Society (Kaunas), 123 Louisiana (LA) Eljay Foundation for Parkinson Syndrome Awareness (NPF), Lake Charles, 113 LSU Health Sciences Center Parkinson's Resource Center and Clinic (Shreveport), 130 The NeuroMedical Center (Baton Rouge), 130 Ochsner Foundation Clinic (APDA I&R Center), New Orleans, 113 Ochsner Medical Center Department of Neurology (New Orleans), 130 Luxembourg Parkinson Luxembourg (PL) a.s.b.l, 123

M Maine (ME) APDA Maine State Chapter (Portland), 113 MaineHealth Learning Resource Center (APDA I&R Center), Falmouth, 113 Malaysia Malaysian Parkinson’s Disease Association (Kuala Lumpur), 123 Malta Malta Parkinson’s Disease Association (Naxxar), 123

Location Index

Maryland (MD) APDA Anne Arundel County Chapter (Severna Park), 113 Johns Hopkins Parkinson's Disease and Movement Disorder Center, The (Baltimore), 130 Parkinson's and Movement Disorders Center of Maryland (Elkridge), 130 Southeast PADRECC (Richmond, VA), 136 University of Maryland Hospital (APDA I&R Center), Baltimore, 113 University of Maryland School of Medicine Neurology and Ambulatory Care Center Maryland Parkinson's Disease and Related Movement Disorders Center (Baltimore), 130 Massachusetts (MA) Beth Israel Deaconness Medical Center (Boston), 52, 130 Boston University, 10 Boston University Medical Center, 130 Boston University School of Medicine (APDA I&R Center and Chapter), 113 Brigham and Women's Hospital Movement Disorder Center (Boston), 130 Lahey Clinic Movement Disorders Program (Burlington), 131 Massachusetts General Hospital Harvard Medical School Movement Disorders Unit (Boston), 131 UMass Memorial Medical Center (Worcester), 131 Michigan (MI) Detroit Medical Center Department of Neurology Movement Disorders Clinic, 131 Henry Ford West Bloomfield Hospital Movement Disorder Center (West Bloomfield), 131 Michigan Parkinson Foundation (MPF), Bingham Farms, 107, 113 Michigan State University Department of Neurology (East Lansing), 131 Mid-Michigan Medical Center Movement Disorders Center (Midland), 131 Parkinsonâ&#x20AC;&#x2122;s Association of West Michigan (NPF), Grand Rapids, 113 University of Michigan Geriatric Center Clinic East (Ann Arbor), 131 Minnesota (MN) Abbott Northwestern Hospital (APDA I&R Center), Minneapolis, 113

APDA Minnesota Chapter (Vadnais Hts), 113 Bethesda Hospital Capistrant Center for Parkinson's Disease and Movement Disorder Center (St. Paul), 131 Mayo Clinic - Rochester Department of Neurology, 131 Minneapolis Clinic of Neurology, 131 Parkinson Association of Minnesota (NPF), Golden Valley, 113 SMDC Medical Center Department of Neurology (Duluth), 131 Struthers Parkinson's Center (Golden Valley), 131 University of Minnesota Medical Center Department of Neurology (Minneapolis), 131 Mississippi (MS) APDA Mississippi Chapter (Brandon), 113 Gulfport Memorial Hospital (APDA I&R Center), Gulfport, 113 Missouri (MO) Parkinson's Clinic of The Ozarks (Springfield), 131 Parkinson's Group of the Ozarks (NPF), Springfield, 114 Washington University School of Medicine, Movement Disorders Center (St. Louis), 131 Washington University School of Medicine (APDA I&R Center and Chapter), St. Louis, 114 Montana (MT) Benefis Health Care West Campus (APDA I&R Center and Chapter), Great Falls, 114 Northwest PADRECC (Portland, OR and Seattle, WA), 136 Northwest Parkinson's Foundation (NWPF), Seattle, WA, 107, 114

N Nebraska (NE) APDA Nebraska Chapter (Omaha), 114 Creighton University (APDA I&R Center), Omaha, 114 Northwest PADRECC (Portland, OR and Seattle, WA), 136 Parkinsonâ&#x20AC;&#x2122;s Association of the Rockies (PAR), Denver, CO, 174 University of Nebraska Neurological Sciences Center (Omaha), 132

149

Parkinson’s Disease Resource List

Netherlands Internationaal Parkinson Fonds Nederland (Haarlemmermeer), 123 Parkinson Vereniging (Bunnik), 123 Nevada (NV) Southern Nevada (APDA I&R Center and Chapter), Las Vegas, 114 Southwest PADRECC (Los Angeles, CA), 136 University of Nevada University Health System (Las Vegas and Reno), 132 V.A. Hospital (APDA I&R Center), Reno, 114 New Hampshire (NH) APDA New Hampshire Chapter (Londonderry), 114 Dartmouth-Hitchcock Medical Center Movement Disorders Program (Lebanon), 132 Hitchcock Foundation, The, Section of Neurology (APDA I&R Center), Lebanon, 114 New Jersey (NJ) APDA New Jersey Chapter (Edison), 114 New Jersey Neuroscience Institute at JFK Medical Center (Edison), 132 Overlook Hospital Atlantic Neuroscience Institute (Summit), 132 Parkinson Alliance, The (Kingston), 105 Robert Wood Johnson University Hospital (APDA I&R Center), New Brunswick, 114 Robert Wood Johnson University Hospital Parkinson's and Movement Disorders Center (New Brunswick), 132 New Mexico (NM) HealthSouth Rehabilitation Parkinson's and Movement Disorder Center (Albuquerque), 132 Southwest PADRECC (Los Angeles, CA), 136 University of New Mexico HSC (APDA I&R Center and Chapter), Albuquerque, 114, 132 New York (NY) Albany Medical Center Movement Disorder and Neurosciences Institute, 132 American Parkinson Disease Association (APDA), Staten Island, 105 APDA Salvatore & Elena Esposito Chapter (Staten Island), 115 APDA Southern Tier Chapter (Lisle), 115 Bachmann-Strauss Dystonia & Parkinson Foundation, Inc. (New York), 106 Beth Israel Medical Center Movement Disorder Group (New York), 132 Brooklyn Parkinson Group (NPF), Brooklyn, 114 Columbia University Medical Center for Parkinson's Disease and Other Movement Disorders (New York), 132 Dance for PD® Program (Brooklyn Parkinson Group/Mark Morris Dance Group), 36

150

Harvey Kushing Institute of Neuroscience at North Shore - Long Island Jewish Hospital (Great Neck), 132 Michael J. Fox Foundation for Parkinson's Research (New York), 23, 105 Michael Stern Parkinson's Research Foundation, The (New York), 107 Mt. Sinai Medical Center Movement Disorder Program (New York), 132 New York College of Osteopathic Medicine, NYIT (APDA I&R Center), Old Westbury, 115 New York Methodist Hospital Neuroscience and Neurology Division (Brooklyn), 132 New York University Medical Center (APDA I&R Center), New York, 115 New York University (NYU) Parkinson's and Movement Disorders Center (New York), 133 Parkinson's Association of Western New York, Inc. (NPF), Williamsville, 115 Parkinson's Disease Foundation (PDF), New York, 105 Parkinson's Support Group of Upstate New York, Inc. (NPF), Rochester, 115 Parkinson Support Group of Syracuse New York (NPF), Clay, 114 Peninsula Hospital (APDA I&R Center), Far Rockaway, 114 St. Catherines of Siena Hospital (APDA I&R Center), Smithtown, 115 Staten Island University Hospital (APDA I&R Center), Staten Island, 115 SUNY Downstate Medical Center Parkinson's Disease and Related Disorders (Brooklyn), 132 Thomas Hartman Foundation for Parkinson's Research (East Islip), 108 University of Buffalo General Hospital Comprehensive Parkinson's Disease and Movement Disorder Center, 132 University of Rochester Department of Neurology Movement Disorders Program, 133 Weill Cornell Medical College, Neurology Clinic, Parkinson's Disease and Movement Disorders Center (New York), 133 We Move (New York), 105 Westfield Memorial Hospital (APDA I&R Center), 115 World Parkinson Coalition, Inc. (New York), 120 New Zealand Parkinsonism Society of New Zealand (Wellington), 124 Parkinson’s Auckland, 124

Location Index

O Ohio (OH) APDA Cincinnati Tri-State Chapter, 115 Central Ohio Parkinson Society (COPS), Columbus, 106, 115 Cleveland Clinic Center for Neurological Restoration, 133 Ohio Parkinson Foundation Northeast Region (Tallmadge), 107, 115 Ohio Parkinson Foundation Southwest Region (Fairborn), 107, 115 Ohio State University Hospitals Madden Center for Parkinson's Disease & Related Disorders (Columbus), 133 Parkinson Foundation Northwest Ohio (PFNWO), Oak Harbor, 108, 115 University Hospitals Case Medical Center of Cleveland Department of Neurological Surgery and the Neurological Institute, 133 University Neurology, Inc. (APDA I&R Center), Cincinnati, 115 University of Cincinnati UC Physicians Neurology The Gardner Center for Parkinson's Disease and Movement Disorders Center, 133 University of Toledo Medical Center Parkinson's and Movement Disorders Program, 133 Oklahoma (OK) APDA Oklahoma Parkinson Disease Chapter (OPDA), Tulsa, 116

Location Index

North Carolina (NC) APDA Asheville Chapter, 115 Carolinas Medical Center (Charlotte), 133 Duke University Medical Center Duke Neurosciences and Pain Clinic Movement Disorders Clinic (Durham), 133 Parkinson Association of the Carolinas (PAC), Charlotte, 107, 115 Southeast PADRECC (Richmond, VA), 136 University of North Carolina at Chapel Hill Department of Neurology Movement Disorders Program, 133 Wake Forest University Baptist Medical Center Department of Neurology Movement Disorders Unit (Winston-Salem), 133 North Dakota (ND) Northwest PADRECC (Portland, OR and Seattle, WA), 136 Norway Norges Parkinsonforbund (Oslo), 124

Hillcrest Medical Center System (APDA I&R Center), Tulsa, 116 Oklahoma University Health Sciences Center OU Physicians Neurology Clinic Department of Neurology (Oklahoma City), 133 Parkinson Foundation of Oklahoma (Oklahoma City), 108 Oregon (OR) Brian Grant Foundation (Portland), 106, 116 Northwest PADRECC (Portland), 136 Northwest Parkinson's Foundation (NWPF), Seattle, WA, 107, 116 Oregon Health & Sciences University Movement Disorders Program at Parkinson Center of Oregon (Portland), 133 Parkinson's Resources of Oregon (NPF), Lake Oswego, 116

P Pakistan Pakistan Parkinson's Society (Karachi), 124 Pennsylvania (PA) APDA Central Susquehanna Valley Chapter (Danville), 116 Crozer-Chester Medical Center The Parkinson's Disease and Movement Disorder Center (Upland), 134 Crozer Keystone Health Access Network (APDA I&R Center and Chapter), Upland, 116 HealthSouth Rehabilitation Hospital (APDA I&R Center), Erie, 116 Jefferson Hospital for the Neurosciences Parkinson's Disease and Movement Disorders Center (Philadelphia), 133 Lehigh Valley Parkinson Support Group (NPF), Bethlehem, 116 Milton S. Hershey College of Medicine Penn State University Neuroscience Center (Hershey), 134 Parkinson Council, The (NPF), Bala Cynwyd, 116 Parkinson Foundation of Western Pennsylvania (NPF), Pittsburgh, 116 Philadelphia PADRECC, 136 University of Pittsburgh Medical Center, 134 University of Pennsylvania Health System Pennsylvania Hospital Neurological Institute and Movement Disorder Center (Philadelphia), 134

151

Parkinson’s Disease Resource List

Peru Asociación Peruana Para La Enfermedad de Parkinson (Lima), 124 Poland Kraków Parkinson’s Disease Association, 124 ParkinsonPolska (Warsaw), 124 Stow. Choroby Parkinsona (Warsaw), 124 Stowarzyszenie Osob Niepelnosprawnych AKSON (Bydgoszcz), 124 Portugal Associação Portuguesa de Doentes de Parkinson (Lisboa), 124 Puerto Rico (PR) Asociacion Puertorriquena De Parkinson (NPF) (Carolina), 119 Fundacion Puertorriquena De Parkinson (NPF) (San Juan), 119 Southeast PADRECC (Richmond, VA), 136 University of Puerto Rico Medical Sciences Campus Department of Neurology (San Juan), 134

R Rhode Island (RI) APDA Rhode Island Chapter (Providence), 116 Butler Hospital Movement Disorders Program (Providence), 134 Kent Hospital (APDA I&R Center), Warwick, 116 Romania Asociatia Antiparkinson (Deva B-dul Dacia), 124 Russia Regional Non-Profit Organisation for the Advancement of Parkinsonian Patients, The (Moscow), 124

S Serbia Serbian Association Against Parkinson's Disease (Belgrade, Yugoslavia), 122 Singapore Parkinson’s Disease Society Singapore, 125 Slovenia Drustvo TREPETLIKA (Parkinson's Disease Society of Slovenia), Ljubljana, 125 South Africa Parkinson Association of South Africa (Bryanston), 120 South Carolina (SC) Medical University of South Carolina Charleston Memorial Hospital Movement Disorder Program (Charleston), 134

152

Parkinson Association of the Carolinas (PAC), Charlotte, NC, 107, 115, 116 Southeast PADRECC (Richmond, VA), 136 South Dakota (SD) Northwest PADRECC (Portland, OR and Seattle, WA), 136 Parkinson Association of South Dakota (NPF), Sioux Falls, 116 Spain Associació Catalana per al Parkinson (Barcelona), 125 Federación Española de Parkinson (Madrid), 125 Unidos contra el Parkinson, 125 Sweden Neurologiskt Handikappades Riksförbund (Stockholm), 125 ParkinsonFörbundet (The Swedish Parkinson's Disease Association), Stockholm, 125 Switzerland Parkinson Schweiz (Zurich), 125

T Taiwan Taiwan Parkinson Association (Taipei), 125 Tennessee (TN) APDA Middle Tennessee Chapter (Nashville), 117 Centennial Medical Center (APDA I&R Center), Nashville, 117 Middle Tennessee Chapter of the NPF (Nashville), 117 Southeast PADRECC (Richmond, VA), 136 University of Tennessee Health Sciences Center UT Medical Group Department of Neurology (Memphis), 134 Vanderbilt University Medical Center Parkinson's Disease Clinic (Nashville), 134 Texas (TX) APDA East Texas Chapter (Tyler), 117 APDA El Paso Chapter, 117 APDA North Texas Chapter (Dallas), 117 APDA West Texas Parkinsonism Society Chapter (Lubbock), 117 Baylor College of Medicine Parkinson's Disease Center and Movement Disorder Clinic (Houston), 134 Baylor Neuroscience Center (APDA I&R Center), Dallas, 117 Capital Area Parkinson's Society (CAPS), Austin, 106, 117 Covenant Hospital (APDA I&R Center), Lubbock, 117

Location Index

U Ukraine Ukrainian Parkinson Disease Society (Kiev), 125 United Kingdom Cure Parkinson's Trust, The (London), 125 European Parkinson's Disease Association (EPDA), London, 120 Parkinson's UK (London), 125 Wobbly Williams (Glasgow), 125 Utah (UT) APDA Utah Chapter (Salt Lake City), 117 University of Utah Health Sciences Imaging and Neuroscience Center Movement Disorder Clinic (Salt Lake City), 135 University of Utah HSC, Department of Neurology (APDA I&R Center), 118 Salt Lake City, 118

V Vermont (VT) University of Vermont FAHC-UHC Campus, Neurology Department (APDA I&R Center and Chapter), Burlington, 118

Location Index

Dallas Area Parkinsonism Society (DAPS), 106, 117 East Texas Medical Center, Neurological Institute Movement Disorders Center (APDA I&R Center and Chapter), Tyler, 117, 134 Houston Area Parkinson Society (HAPS), 106, 117 Houston PADRECC, 136 Methodist Neurological Institute Parkinson's and Movement Disorders Clinic (Houston), 134 Scott & White - University Medical Campus Neuroscience Institute Plummer Movement Disorders Center (Temple), 134 University of TX HSC at San Antonio, Department of Neurology (APDA I&R Center and Chapter), 117 UT Southwestern Medical Center Neurology Clinic and Clinical Center for Multiple Sclerosis (Dallas), 134 Turkey Parkinson HastaliÄ&#x;i DerneÄ&#x;i (Turkish Parkinson's Disease Society), Ankara, 125

University of Vermont Fletcher Allen Neurology Health Care Service Movement Disorders Clinic (Burlington), 134 Virginia (VA) APDA Hampton Roads Chapter (Virginia Beach), 118 APDA Richmond Metro Chapter, 118 APDA Southwest Virginia Chapter (Roanoke), 118 Parkinson Foundation of the National Capital Area (NPF), McLean, 88, 118 Southeast PADRECC (Richmond), 136 University of Virginia Health System, Fontaine Research Park (APDA I&R Center), Charlottesville, 118 University of Virginia Movement Disorders Program (Charlottesville), 135 Virginia Commonwealth University Medical Center Division of Neurology (Richmond), 135

W Washington (WA) APDA Washington State Chapter (Seattle), 7, 118 Booth Gardner Parkinson's Care Center (Kirkland), 107, 135 Northwest Hospital and Medical Center, 135 Northwest PADRECC (Seattle), 136 Northwest Parkinson's Foundation (NWPF), Seattle, 107, 118 Parkinson's Resource Center of Spokane, 108, 118 University of Washington, Department of Neurology (APDA I&R Center), Seattle, 118 University of Washington Medical Center Neurology Clinic (Seattle), 135 Virginia Mason Medical Center Neuroscience Institute (Seattle), 135 West Virginia (WV) APDA North Central West Virginia Chapter (Fairmont), 118 Marshall University Medical Center (Huntington), 135 Southeast PADRECC (Richmond, VA), 136 West Virginia University School of Medicine Department of Neurology (Morgantown), 135 Wisconsin (WI) Aurora Sinai Medical Center Regional Parkinson's Center (Milwaukee), 135

153

Parkinson’s Disease Resource List

Froedtert and Medical College of Wisconsin Department of Neurology Movement Disorders Center (Milwaukee), 135 Gundersen Lutheran Medical Center Neuroscience Clinic Movement Disorder Clinic (LaCrosse), 135 Marshfield Clinic Department of Neurology (Marshfield), 135 St. Mary’s Hospital (APDA I&R Center and Chapter), Madison, 118 University of Wisconsin-Madison Department of Neurology Movement Disorder Program (Madison), 135 Wisconsin Parkinson Association (NPF), Milwaukee, 118 Wyoming (WY) APDA Bighorn Basin Parkinson Chapter (Cody), 119 Northwest PADRECC (Portland, OR and Seattle, WA), 136 Parkinson’s Association of the Rockies (PAR), Denver, CO, 107, 119

154

Resource Index

This Resource Index lists the organizations, Internet services, books, brochures, fact sheets and other publications and resources listed in this Resource List. Please See also Location Index and Subject Index. A AAA Foundation for Traffic Safety, 52 AAHSA (American Association of Homes and Services for the Aging), 97 AAMFT (American Association for Marriage and Family Therapy), 46, 47 AAN. See American Academy of Neurology AARP Driver Safety Online Course, 52 Abbott Northwestern Hospital (APDA I&R Center), Minneapolis, MN, 113 AbilityLinks, 69 Abledata, 56 Achilles, Elayne, Ed.D., 33 Activities of Daily Living: Practical Pointers for Parkinson Disease (Cianci, Cloete, Gardner, Trail, and Wichmann), 27 ADA (American Dietetic Association), 32 ADA (Americans With Disabilities Act), 69, 81 Adaptations by Adrian, 56 Administration on Aging (National Center on Elder Abuse), 91 Advance Directives Caring Connections, 81 Advice for Patients Going to the Emergency Room or Traveling (APDA), 53, 55 Agency for Health Care Research and Quality (AHRQ) Office of Communications and Knowledge Transfer, 42 Agingcare.com, 85 Aging in the Know: Pressure Ulcers (Bed Sores) (AGS Foundation for Health in Aging), 97 Aging With Dignity Five Wishes, 82 AGS Foundation for Health in Aging, 97 Ahlskog, J. Eric, M.D., Ph.D., 3 AHRQ (Agency for Health Care Research and Quality) Office of Communications and Knowledge Transfer, 42 Albany Medical Center Movement Disorder and Neurosciences Institute (NY), 132 Alexian Brothers Neurosciences Institute (Elk Grove Village, IL), 129 Ali, Muhammad, 94 Ali, Rasheda, 94

Always Looking Up: The Adventures of An Incurable Optimist (Fox), 57 Alzheimer & Parkinson Association of Indian River County, Inc. (NPF), Vero Beach, FL, 111 American Academy of Neurology (AAN) Neurology Now, 2 Parkinson’s Disease: A Guide for Patients and Families, 8 American Association for Marriage and Family Therapy (AAMFT), 46, 47 American Association of Homes and Services for the Aging (AAHSA), 97 American Dietetic Association (ADA), 32 American Parkinson Disease Association (APDA) Advice for Patients Going to the Emergency Room or Traveling, 53, 55 Aquatic Exercise for Parkinson's Disease (See, Denomme, Sims, Tilden, and Wykle), 36 Be Active: An Exercise Program for People with Parkinson's Disease (Ellis, Rork, and Dalton), 36 Be Independent: A Guide for People with Parkinson’s Disease (Flinn, Mensen, Krohn and Olsen), 27 Constipation & Parkinson's Disease (Jenco and Wagner), 12 Depression and Parkinson's Disease (Bell), 14 Dr. Andrew Weil's Recommendations for Healthy Aging (Holmes), 43 Driving When You Have Parkinson Disease (NHTSA and APDA), 53 Employment & Parkinson’s (Sacks), 69 Family Unit & Parkinson's Disease, The (Stewart), 90 Fatigue and Parkinson's Disease (Friedman), 11 Freezing in Parkinson's Disease (Ellis and DeAngelis), 10 Good Nutrition in Parkinson's Disease (Loew and Pratt), 34 How to Start a Parkinson's Disease Support Group, 48 Incontinence & Parkinson's Disease (Guyer), 13

155

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

Keys for Caregiving (Crenshaw), 90 Living Will and the Durable Power of Attorney for Health Care, The (Gentges), 83 Medical Management of Parkinson's Disease (Semenchuk), 24 Medications Approved for the Treatment of Parkinson's Disease in the USA, 25 My Mommy has PD...But It's Okay! (Jan Quist, McNeill, and Reese), 95 Neuro-ophthalmology and Parkinson's Disease (Berman), 15 Parkinson's Disease and Oral Healthcare (Huber), 16 Parkinson's Disease Handbook (Golbe, Mark, Sage), 3 Parkinson's Rehab Resource Center, 30 Speaking Effectively: A Strategic Guide for Speaking and Swallowing (Ruddy and Sapienza), 31 34 Helpful Hints to Improve the Quality of Life of People with Parkinson's, 50 When Should Parkinson's Disease Patients Go to the Emergency Room? (Friedman), 55 Young Onset Parkinson Conferences, 47 Young Parkinson's Handbook: A Guide for Patients and their Families (Rezak, Reese, and Sacks), 47 American Parkinson Disease Association (APDA), Staten Island, NY, 105 American PhysicalTherapy Association (APTA), 29, 71 American Psychological Association (APA), 46, 48 American Speech-Language-Hearing Association (ASHA), 27 Americans With Disabilities Act (ADA), 69, 81 Amodeo, Joseph J., 64 Anderson, David H., 61 Anderson, Victor, 57 And Thou Shalt Honor: The Caregiver's Companion (McLeod), 87 APA (American Psychological Association), 46, 48 APDA. See American Parkinson Disease Association APDA Anne Arundel County Chapter (Severna Park, MD), 113 APDA Arizona Chapter (Tucson), 109 APDA Asheville Chapter (NC), 115 APDA Bighorn Basin Parkinson Chapter (Cody, WY), 119 APDA Central Susquehanna Valley Chapter (Danville, PA), 116 APDA Cincinnati Tri-State Chapter (OH), 115

156

APDA Connecticut Chapter (North Haven, CT), 111 APDA East Texas Chapter (Tyler), 117 APDA El Paso Chapter (TX), 117 APDA Georgia Chapter (Atlanta), 111 APDA Greater Los Angeles Chapter (CA), 110 APDA Hampton Roads Chapter (Virginia Beach, VA), 118 APDA Iowa Chapter (Waukee), 112 APDA Maine State Chapter (Portland), 113 APDA Middle Tennessee Chapter (Nashville), 117 APDA Midwest Chapter (Wheaton, IL), 112 APDA Minnesota Chapter (Vadnais Hts), 113 APDA Mississippi Chapter (Brandon), 113 APDA National Young Onset Center, 45 APDA Nebraska Chapter (Omaha, NE), 114 APDA New Hampshire Chapter (Londonderry), 114 APDA New Jersey Chapter (Edison), 114 APDA North Central West Virginia Chapter (Fairmont), 118 APDA North Texas Chapter (Dallas), 117 APDA Oklahoma Parkinson Disease Chapter (OPDA), Tulsa, 116 APDA Rhode Island Chapter (Providence), 116 APDA Richmond Metro Chapter (VA), 118 APDA Salvatore & Elena Esposito Chapter (Staten Island, NY), 115 APDA San Gabriel Valley Chapter (La Verne, CA), 109 APDA Southern Tier Chapter (Lisle, NY), 115 APDA South Florida Chapter and I&R Center (Deerfield Beach), 111 APDA Southwest Virginia Chapter (Roanoke), 118 APDA Utah Chapter (Salt Lake City), 117 APDA Washington State Chapter (Seattle), 7, 118 APDA West Texas Parkinsonism Society Chapter (Lubbock), 117 APTA (American PhysicalTherapy Association), 29, 71 Aquatic Exercise for Parkinson's Disease (See, Denomme, Sims, Tilden, and Wykle), 36 ARCH National Respite Network, 92 Area Agencies on Aging Eldercare Locator Service, 43, 46, 78, 89, 97 Argue, John, 39 Art and Aging (Bagan), 40 ASHA (American Speech-Language-Hearing Association), 27 Ask About Nutrition (NPF), 32 Ask The Doctor About Parkinson's Disease (Okun and Fernandez), 1 Ask The Doctor Online Forum (NPF), 43

Resource Index

B Bachmann-Strauss Dystonia & Parkinson Foundation, Inc. (New York, NY), 106 Bahti, Tani, R.N., 100 Balance Checklist (Johnston), 9 Ball, John, 63 Banner Good Samaritan Medical Center (APDA I&R Center), Phoenix, AZ, 109 Banner Sun Health Institute Christopher Center for Parkinson Research (Sun City, AZ), 127 Barg, Gary, 90 Barrier-Free Travel: A Nuts and Bolts Guide for Wheelers and Slow Walkers, Third Edition (Harrington), 54 Bassich, Celia Bassich, Ph.D., CCC-SLP, 31 Batterman, Jyl, 51 Baylor College of Medicine Parkinson's Disease Center and Movement Disorder Clinic (Houston, TX), 134

Resource Index

Ask the Pharmacist (NPF), 24 Ask The Surgical Team (NPF), 26 Asociación Civil Enfermedad de Parkinson (Buenos Aires, Argentina), 120 Asociación Peruana Para La Enfermedad de Parkinson (Lima, Peru), 124 Asociacion Puertorriquena De Parkinson (NPF) (Carolina, PR), 119 Asociatia Antiparkinson (Deva B-dul Dacia, Romania), 124 Assistance Dogs International, Inc, 50 Assisted Living Directory, 99 Associação Brasil Parkinson (Sao Paulo, Brazil), 121 Associação Portuguesa de Doentes de Parkinson (Lisboa, Portugal), 124 Associació Catalana per al Parkinson (Barcelona, Spain), 125 Association France Parkinson (Paris), 122 Association of Driver Rehabilitation Specialists, 51, 52 Association Parkinson (Namur, Belgium), 121 Associazione Italiana Parkinsoniani (Milan, Italy), 123 Atwood, Glenna Wotton, 63 Aurora Sinai Medical Center Regional Parkinson's Center (Milwaukee, WI), 135 Austrian Parkinson's Self-Help Group (Parkinson Selbsthilfe Oesterreich), Wien, 121 Azione Parkinson (Lazio), Rome, Italy, 123

Baylor Neuroscience Center (APDA I&R Center), Dallas, TX, 117 Be Active: An Exercise Program for People with Parkinson's Disease (Ellis, Rork, and Dalton), 36 Be Independent: A Guide for People with Parkinson’s Disease (Flinn, Mensen, Krohn and Olsen), 27 Bell, Brian D., Ph.D., 14 Benefis Health Care West Campus (APDA I&R Center and Chapter), Great Falls, MT, 114 BenefitsCheckup, 71 BenefitsCheckUp: Senior Housing Locator, 77 Benefits.gov, 77 Berman, Andrew A., M.D., 15 Berman, Claire, 7, 88 Bethesda Hospital Capistrant Center for Parkinson's Disease and Movement Disorder Center (St. Paul, MN), 131 Beth Israel Deaconess Medical Center (Boston, MA), 52, 130 Beth Israel Medical Center Movement Disorder Group (New York, NY), 132 Blake-Krebs, Barbara, M.A., 67 Booth Gardner Parkinson's Care Center (Kirkland, WA), 107, 135 Boston University (MA), 10 Boston University Medical Center (MA), 130 Boston University School of Medicine (APDA I&R Center and Chapter), MA, 113 Brain Talk Communities, 48 Brandabur, Melanie, M.D., 24 Breslow, Diane, M.S.W., L.C.S.W., 55 Brian Grant Foundation (Portland, OR), 106, 116 Briggs, 56 Brigham and Women's Hospital Movement Disorder Center (Boston, MA), 130 Bright, Darrell, 61 Brooklyn Parkinson Group (NPF), Brooklyn, NY, 36, 114 Brooks, Daniel, Ed.D., 62 Buck & Buck, 56 Building a Better Night's Sleep (Imke), 11 Building Patient Trust: A New Era in Parkinson's Clinical Research Rights & Responsibilities (PDF), 19 Butler Hospital Movement Disorders Program (Providence, RI), 134

157

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

C Calder, Kimberly, M.P.S., 72 Capital Area Parkinson's Society (CAPS), Austin, TX, 106, 117 CAPS (Children of Aging Parents), 89 Caregiver Community Action Network (CCAN), 85 Caregivers Are Really Essential (CARE), 87 Caregivers Forum (NPF), 87 Caregiver Story Project (NFCA), 85 Caregiving: The Spiritual Journey of Love, Loss, and Renewal (McLeod), 87 Caring and Coping (Imke, Hutton, and Loftus), 88 CaringBridge, 89 Caring Connections, 81, 100 Caring for the Parkinson Patient: A Practical Guide (Hutton and Dippel), 92 Caring for the PD Care Partner (Habermann), 87 Caring for Yourself While Caring for Your Aging Parents: How to Help, How to Survive, Third Edition (Berman), 88 Caring From a Distance (CFAD), 88 Caring with Courage and Compassion: Notes of Inspiration, Loneliness, Connection and Love from a Parkinson's Caregiver (Hamburger), 88 Carley, Gord, 66 Carolinas Medical Center The Carolinas Center for Parkinson's Disease and Movement Disorders (Charlotte, NC), 133 Carolyn's Journey: From Parkinson's Disease to a Nearly Normal Life After Deep Brain Stimulation (Anderson), 57 Catholic Charities: Agency Directory, 48 CCAN (Caregiver Community Action Network), 85 Cecil, Michael, M.D., 78 Cedars-Sinai Medical Center (APDA I&R Center), Los Angeles, CA, 110, 128 Centennial Medical Center (APDA I&R Center), Nashville, TN, 117 Center for Aging, Research and Education (APDA I&R Center), Northridge, CA, 110 Center for Information and Study of Clinical Research Participation (CISCRP), 19 Center for Touch Drawing, The, 40 Centers for Medicare and Medicaid Services (CMS), 73 Centerwatch, 21 Central DuPage Hospital (APDA I&R Center), Winfield, IL, 112 Central Ohio Parkinson Society (COPS), Columbus, 106, 115

158

Central Savannah River Area (CSRA) Parkinson Support Group - Augusta Chapter (NPF), GA, 111 Certified Driver Rehabilitation Specialists Directory (Association of Driver Rehabilitation Specialists), 52 CFAD (Caring From a Distance), 88 Challenge of a Lifetime, The: Backpacking with Parkinson's (Ferrari), 57 Children of Aging Parents (CAPS), 89 Chinese, resources in See also Location Index "End of Life Choices" (FCA), 101 Choosing the Right Doctor (Jedlinski), 7 Chou, Kelvin L., M.D., 55 Christensen, Jackie Hunt, 60, 62 Church, Michael J., 63 Cianci, Heather, P.T., M.S., G.C.S., 27, 30, 37 CISCRP (Center for Information and Study of Clinical Research Participation), 19 Clark, Judy, 32 Cleveland Clinic Foundation Movement Disorders Center for Neurological Restoration (OH), 133 Cleveland Clinic - Weston (FL), 129 Clinical Research Learning Institute (PDF), 21 ClinicalTrials.gov, 21 Cloete, Lizette, O.T.R./L., 27 Clognition, 45 CMS (Centers for Medicare and Medicaid Services), 73 Colorado Parkinson Foundation, Inc. (NPF), Colorado Springs, CO, 110 Columbia University Medical Center for Parkinson's Disease and Other Movement Disorders (New York, NY), 132 Combating Depression in Parkinson's Disease (Menza), 14 Comfort of Home, Parkinson's Disease Edition, The: An Illustrated Step-by-Step Guide for Caregivers, Second Edition (Meyer, Derr, and Imke), 92 Compassion & Choices, 100 Conkling, Winifred, 63 Connecticut Parkinson's Working Group (CPWG), Guilford, CT, 106, 110 Constipation & Parkinson's Disease (Jenco and Wagner), 12 Continence Care for People Living with Parkinson's Disease (Fowler), 12 Cook Well, Stay Well with Parkinson's Disease: Super Foods for Super People (Holden), 33

Resource Index

D Dallas Area Parkinsonism Society (DAPS), TX, 106, 117 Dalton, Diane, P.T., D.P.T., O.C.S., 36 Dance for PD速 Program (Brooklyn Parkinson Group/Mark Morris Dance Group), NY, 36 DAPS (Dallas Area Parkinsonism Society), TX, 106, 117

Resource Index

Cooper, Laura D., Esq., 72 Coping with Dementia: Advice for Caregivers (Henchcliffe and Rosner), 92 Copper, Stephen E., 72 COPS (Central Ohio Parkinson Society), Columbus, 106, 115 Covenant Hospital (APDA I&R Center), Lubbock, TX, 117 CPWG (Connecticut Parkinson's Working Group), Guilford, CT, 106, 110 Cram, David L., M.D., 5 Creativity and Parkinson's Project (PDF), 40 Creighton University (APDA I&R Center), Omaha, NE, 114 Crenshaw, Caryn, R.N., 90 Croatian Parkinson's Disease and Movement Disorders Association, Zagreb, 121 Crozer-Chester Medical Center The Parkinson's Disease and Movement Disorder Center (Upland, PA), 134 Crozer Keystone Health Access Network (APDA I&R Center and Chapter), Upland, PA, 116 CSRA (Central Savannah River Area) Parkinson Support Group - Augusta Chapter (NPF), GA, 111 Csuy, Jeanne, P.T., 39 Cure Parkinson'sTrust,The (London, UK), 125 Cure PSP-Foundation for PSP, CBD and Related Brain Diseases, 16 Curren, Arthur W., 59 Cyprus Parkinson's Disease Association (Nicosia), 121 Czech Parkinson's Disease Society (Prague), 121

Dartmouth-Hitchcock Medical Center Movement Disorders Program (Lebanon, NH), 132 Davis Phinney Foundation, The (DPF), Boulder, CO, 43, 105 DBS-STN.org, 26 DeAngelis, Tami, P.T., 10 Deep Brain Diary: My Life as a Guy with Parkinson's Disease and Brain Surgery Volunteer (Schmalfeldt), 57 Deep Brain Stimulation: A New Treatment Shows Promise in the Most Difficult Cases (Talan), 59 Deep Brain Stimulation for Parkinson's Disease, Third Edition (Ford), 26 Defying Despair: Feed the Mind, Train the Body, Nourish the Soul (Scelta), 59 Delabre, Kenneth R., 64 Delay the Disease: Exercise and PD (Zid and Russell), 36 Delta Parkinson Egyesulet (Budapest, Hungary), 122 Denomme, Laurie, B.S., 36 Dental Health and Parkinson's Disease (Noble), 16 Department of Health and Human Services, 99 Department of Justice, 81 Department of Labor, 69, 82 Department of Veterans Affairs, 75 Depression and Parkinson's Disease (Bell), 14 Derr, Paula, R.N., 92 Deshefy-Longhi, Teresa, DN.Sc., R.N., 91 Detroit Medical Center Department of Neurology Movement Disorders Clinic (MI), 131 DeWitte, Steve, 22 Diagnosis Parkinson's Disease: You are not alone (Berman), 7 Dippel, Raye Lynne, Ph.D., 92 Directory of Certified Clinical Specialists in Physical Therapy, 29 Directory of Shared Housing Resource Center: State Directory, 78 Disability.gov, 73, 81 Disability Secrets, 73 Dizzy Disease, The: When Your World Starts to Spin (Wall), 59

159

Parkinson’s Disease Resource List

Do I Have a Speech or Voice Problem? (Rosen, Lee, Osborne, Zullo, and Murry), 29 DPF (Davis Phinney Foundation), Boulder, CO, 105 Dr. Andrew Weil's Recommendations for Healthy Aging (Holmes), 43 Driving and Parkinson's Disease: The Crossroads of Independence & Safety (Beth Israel Deaconness Medical Center, Boston, MA), 52 Driving and Parkinson's Disease - When is it Time to Give Up the Keys? (PDF), 53 Driving When You Have Parkinson Disease (NHTSA and APDA), 53 Drugs For Less: The Complete Guide to Free and Discounted Prescription Drugs (Cecil), 78 Drustvo TREPETLIKA (Parkinson's Disease Society of Slovenia), Ljubljana, 125 Duda, John, M.D., 14 Duke University Medical Center Duke Neurosciences and Pain Clinic Movement Disorders Clinic (Durham, NC), 133 Dumb Bells & Dopamine: A Parkinson's Success Story (Curren), 59 Dutton, Janna, J.D., 82 Dying To Know: Straight Talk About Death and Dying (Bahti), 100 Dysphagia Cookbook, The (Achilles), 33

E East Texas Medical Center Movement Disorder Center (Tyler), 117, 134 Easy Tai Chi-Qigong: For People of All Ages and Especially for Seniors and People with Parkinson's (Fiore and Fiore), 37 Easy-to-Swallow, Easy-to-Chew Cookbook: Over 150 Tasty and Nutritious Recipes for People Who Have Difficulty Swallowing (Weihofen, Robbins, and Sullivan), 33 Eat Well, Stay Well with Parkinson's Disease: A Nutrition Handbook for People with Parkinson's (Holden), 33 eCareDiary.com, 89 Edey, Anthony, 62 Edmunson, Janet, 60 Edward White Hospital (APDA I&R Center), St. Petersburg, FL, 111 EEOC (Equal Employment Opportunity Commission), 71 ElderCarelink, 89

160

Eldercare Locator Service Area Agencies on Aging, 43, 46, 78, 89, 97 Eljay Foundation for Parkinson Syndrome Awareness (NPF), Lake Charles, LA, 113 Elliott, Robin Anthony, v Ellis, Terry, P.T., Ph.D., N.C.S., 10, 36 Emory University School of Medicine (APDA I&R Center), Atlanta, GA, 111 Emory University School of Medicine Department of Neurology Wesley Woods Health Center Movement Disorders Center (Atlanta, GA), 129 Employment & Parkinson’s (Sacks), 69 Employment with PD: Working it Out (Herman), 70 "End of Life Choices" (FCA), 101 Enhancing Hand Coordination (Struthers Parkinson Center), 8 EPDA (European Parkinson's Disease Association), Brussels, Belgium, 120 EPDA (European Parkinson's Disease Association), London, UK, 120 EPIKOUROS - Kinisis (Movement) Branch (Athens, Greece), 122 Equal Employment Opportunity Commission (EEOC), 71 Estate Planning for People With A Chronic Condition or Disability (Shenkman), 82 Estonian Parkinson’s Association (Tartu), 122 European Parkinson's Disease Association (EPDA), Brussels, Belgium, 120 European Parkinson's Disease Association (EPDA), London, UK, 120 Evans, Margot Grant, 95 Every Victory Counts (Giroux and Farris), 43 Exercising Your Speech and Voice System (Struthers Parkinson Center), 29

F Faith In Action National Network, 90 Falls Prevention (Loftus), 9 Falls Prevention Workbook (NPF), 9 Family and Medical Leave Act (FMLA), 82 Family Caregiver Alliance (FCA), 85 "End of Life Choices," 101 Legal Issues for Lesbian/Gay/Bisexual/ Transgendered (LGBT) Caregivers, 82 Family Caregiving 101, 92 Family Unit & Parkinson's Disease, The (Stewart), 90

Resource Index

Farris, Sierra, P.A.-C., M.P.A.S., 43 Fatigue, Sleep Disorders and Parkinson's Disease (Friedman), 12 Fatigue and Parkinson's Disease (Friedman), 11 FCA. See Family Caregiver Alliance FDA (Food and Drug Administration), 24, 25, 26 Fearless Caregiver, The: How to Get the Best Care for Your Loved One and Still Have a Life of Your Own (Barg), 90 Federación Española de Parkinson (Madrid, Spain), 125 Fédération Française des Groupements de Parkinsoniens, La (Savigny en Sancerre, France), 122 Fernandez, Hubert H., M.D., 1, 55 Ferrari, Pete, 57 Fighting Fatigue: Enhancing Energy and Endurance (Struthers Parkinson Center), 12 Finding Meaning with Charles: Caregiving with Love Through a Degenerative Disease (Edmunson), 60 Finnish Parkinson Association,The (Turku), 122 Fiore, Don, 37 Fiore, Victoria, 37 First Year, The — Parkinson's Disease: An Essential Guide for the Newly Diagnosed (Christensen), 60 Fitness Plan I — Out of Bed (Zid), 37 Fitness Plan II — Posture (Zid), 38 Fitness Plan III — Getting off of the Floor (Zid), 38 Fitness and Flexibility: The Role of Exercise in PD Management (Struthers Parkinson Center), 37 Fitness Counts, Third Edition (Cianci), 37 Five Frequently Asked Questions about Hospitalization for Parkinson's Patients (Chou, Okun, Fernandez, Breslow, and Friedman), 55 Five Wishes (Aging With Dignity), 82 Flinn, Nancy A., Ph.D., O.T.R./L., 27 Flying High Without Wings: Living with Parkinson Disease: A Caregiver's Story (Holme), 60 FMLA (Family and Medical Leave Act), 82 Food and Drug Administration (FDA), 24, 25, 26 Ford, Blair, M.D., 3, 11, 26, 27 Fowler, Clare, M.B., M.S., M.Sc., F.R.C.P., 12 Fox, Cynthia, Ph.D., CCC-SLP, 31

Fox, Michael J., 57, 60, 63 Freezing in Parkinson's Disease (Ellis and DeAngelis), 10 French, resources in See also Location Index Advice for Patients Going to the Emergency Room orTraveling (APDA), 53, 55 International Essential Tremor Foundation (IETF), 17 National Sleep Foundation: Parkinson's Disease, 12 Frequently Asked Questions about Social Security Disability Insurance (National Organization of Social Security Claimants' Representatives), 74 Friedman, Joseph H., M.D., 10, 11, 12, 55 Froedtert and Medical College of Wisconsin Department of Neurology Movement Disorders Center (Milwaukee, WI), 135 Functional Aquatic Fitness Training for Parkinson's Disease, 38 Fundacion Puertorriquena De Parkinson (NPF) (San Juan, PR), 119 Funny Thing Happened on the Way to the Future, A: Twists and Turns and Lessons Learned (Fox), 60

G Gallego, Gilbert A., 15 Gao, Xiao-Ke, M.D., 5 Gardner, Joan, R.N., B.S.N., 27, 98 Garie, Gretchen, 63 Gastrointestinal and Urinary Dysfunction in PD (Pfeiffer), 13 Gatses, Tom S., 61 Genetics and Parkinson's (Gwinn), 1 Gentges, Christine, R.N., J.D., 83 Georgetown University Hospital Movement Disorder Clinic (Washington, DC), 128 Georgian International Charitable Union of Parkinson’s Disease Patients (Tbilisi), 122 German, resources in See also Location Index Advice for Patients Going to the Emergency Room or Traveling (APDA), 53, 55 Be Active: An Exercise Program for People with Parkinson's Disease (Ellis, Rork, and Dalton), 36

161

Parkinson’s Disease Resource List

Be Independent: A Guide for People with Parkinson’s Disease (Flinn, Mensen, Krohn and Olsen), 27 National Sleep Foundation: Parkinson's Disease, 12 Parkinson's Disease Handbook (Golbe, Mark, Sage), 3 Getting Involved in Clinical Research (PDF), 21 Getz, Kenneth, M.B.A., 22, 23 Gift of Participation: A Guide to Making Informed Decision About Volunteering for a Clinical Trial, The (Getz), 22 Gilbert-Henderson, Leah, Ph.D., 35 Giroux, Monique, M.D, 43 Golbe, Lawrence I., M.D., 3 Golding, Philip, 66 Good Nutrition in Parkinson's Disease (Loew and Pratt), 34 Graboys, Thomas, M.D., 62 Greek, resources in See also Location Index Fitness Counts, Third Edition (Cianci), 37 Nutrition Matters (Holden), 35 Speech and Swallowing, Second Edition (Johnson), 31 Green, Dennis, 66 GriefNet, 101 Grimes, David A., M.D., F.R.C.P.C., 4 Growing Up With Bob (Bright), 61 Growthhouse.org, 101 Grupo de Autoayuda Parkinson Argentina (Buenos Aires), 120 Guide to Deep Brain Stimulation Therapy, A, Second Edition (Marjama-Lyons and Okun), 26 Gulfport Memorial Hospital (APDA I&R Center), Gulfport, MS, 113 Gundersen Lutheran Medical Center Neuroscience Clinic Movement Disorder Clinic (LaCrosse, WI), 135 Guten, Gary N., M.A., 3 Guyer, Debbie, M.A., CCC-SLP, 13 Gwinn, Katrina, M.D., 1

H HAA (Hospice Association of America), 102 Habermann, Barbara, Ph.D., R.N., 87, 90 Hamburg, Janet, 38 Hamburger, Susan, 88 Handbook for Mortals: Guidance for People Facing Serious Illness (Lynn and Harrold), 101

162

HAPS (Houston Area Parkinson Society),TX, 106, 117 Harrington, Candy B., 54 Harrold, Joan, M.D., 101 Harvey Kushing Institute of Neuroscience at North Shore - Long Island Jewish Hospital (Great Neck, NY), 132 Havemann, Joel, 62 Hawaii Parkinson Association (NPF), Honolulu, 112 Healthcare for Less: Getting the Care You Need Without Breaking the Bank (Katz), 78 Health Insurance Resources: A Guide for People With Chronic Disease and Disability, Second Edition (Northrop, Cooper, Calder), 72 HealthSouth Rehabilitation Hospital (APDA I&R Center), Erie, PA, 116 HealthSouth Rehabilitation Parkinson's and Movement Disorder Center (Albuquerque, NM), 132 Helen M. Lunch Direct Aid Fund of the Parkinson's Disease Foundation, 77 Helping Your Children Cope with Your PD (Lane), 94 Henchcliffe, Claire, M.D., D.Phil., 92 Henry Ford West Bloomfield Hospital Movement Disorder Center (West Bloomfield, MI), 131 Herbert Kay Parkinson Chapter (NPF), The (Aventura, FL), 111 Herman, Linda, M.L.S., 67, 70 HFA (Hospice Foundation of America), 102 Hillcrest Medical Center System (APDA I&R Center), Tulsa, OK, 116 Hirsch, Mark A., Ph.D., 30 Hitchcock Foundation, The, Section of Neurology (APDA I&R Center), Lebanon, NH, 114 Hoag Hospital - Neuroscience Institute Parkinson's and Movement Disorders Program (Newport Beach, CA), 128 Holden, Kathrynne, M.S., R.D., 33, 35 HollyRod Foundation,The (Beverly Hills, CA), 106, 109 Holme, Selma, 60 Holmes, Cynthia A., Ph.D., 43 Home Modification Resources, 56 Hong Kong Parkinson’s Disease Foundation, 122 h.o.p.e.: Four Keys to a Better Quality of Life for Parkinson's People, Second Edition (Newsom), 61 Horne, Jo, M.A., 3 Hospice Association of America (HAA), 102 Hospice Foundation of America (HFA), 102 Hospice Net, 102

Resource Index

I I-Can't-Chew Cookbook, Second Edition (Wilson), 34 I Can Travel!, 54 ICYou, 1 Idaho Elks Rehabilitation Hospital Movement Disorders Center at the Elks (Boise), 129 I Do It the S.A.F.E. Way: How I stay ahead of Parkinson's disease (Gatses), 61 I'll Hold Your Hand So You Won't Fall: A Child's Guide to Parkinson's Disease (Ali), 94 Imke, Susan C., R.N., M.S., 11, 88, 92 Incontinence & Parkinson's Disease (Guyer), 13 Indiana University Medical Center of Excellence in Parkinson's Disease and Huntington's (Indianapolis), 130 Information for Your Nurse and Doctor for Hospitalization (NPF), 55 Inside Parkinson's Clinical Trials: What You Need to Know (Jennings and DeWitte), 22 Insurance Solutions-Plan Well, Live Better: A Workbook for People with a Chronic Disease or Disability (Cooper), 72 Internationaal Parkinson Fonds Nederland (Haarlemmermeer, Netherlands), 123

Resource Index

Hospital of St. Raphael (APDA I&R Center), New Haven, CT, 111 Houghton, David, M.D., 24 Houston Area Parkinson Society (HAPS), TX, 106, 117 Houston PADRECC, TX, 136 How to Measure Your Blood Pressure (Viscomi), 16 How to Start a Parkinson's Disease Support Group (APDA), 48 How to Take Care of the Caregiver (Habermann), 90 How to Tame Parkinson's by Keeping Fit: My Total Commitment + The Right Personal Trainer (Anderson), 61 Huber, Mitchell A., D.D.S., 16 Hummel, Eileen, R.N., B.S.N., 103 Hunnewell, Lila Green, 63 Hurtig, Howard, M.D., 24 Hutton, J. Thomas, M.D., Ph.D., 92 Hutton, Tudy, J.D., 88

Internationale Parkinson Fonds Deutschland gGmbH (Berlin, Germany), 122 International Essential Tremor Foundation (IETF), 17 Iowa Health - Des Moines (APDA I&R Center), Des Moines, 112 Iowa Health Physicians Methodist Specialty (Des Moines), 130 Israel Parkinson Association (Tel-Aviv), 123 Italian, resources in See also Location Index Advice for Patients Going to the Emergency Room orTraveling (APDA), 53, 55 Be Active: An Exercise Program for People with Parkinson's Disease (Ellis, Rork, and Dalton), 36 Be Independent: A Guide for People with Parkinsonâ&#x20AC;&#x2122;s Disease (Flinn, Mensen, Krohn and Olsen), 27 Caring Connections, 100 Five Wishes (Aging With Dignity), 82 Good Nutrition in Parkinson's Disease (Loew and Pratt), 34 Parkinson's Disease Handbook (Golbe, Mark, Sage), 3 I Will Go On Living: Living with a Movement Disorder (Brooks), 62

J JAN (Job Accommodation Network), 69 Japanese Parkinson Disease Association (Tokyo), 123 Jedlinski, Sheryl, 7 Jefferson Hospital for the Neurosciences Parkinson's Disease and Movement Disorders Center (Philadelphia, PA), 134 Jenco, Robert S., Pharm.D., 12 Jenkins, Kay Mixson, 95 Jennings, Danna, M.D, 22 Job Accommodation Network (JAN), 69 Johns Hopkins Parkinson's Disease and Movement Disorder Center, The (Baltimore, MD), 130 Johnson, Marjorie L., M.A., CCC-SLP, 31 Johnson, Rhona, 94 Johnston, Marjorie W., 9 Jones, David, 64

163

Parkinson’s Disease Resource List

K Kaiser-Hayward Medical Group Regional Movement Disorders Clinic (Hayward, CA), 127 Kaiser Medical Center at Sacramento (CA), 128 Kaiser Permanente Neurology Clinic (Walnut Creek, CA), 128 Kaiser Permanente Neuroscience Clinic (Honolulu, HI), 129 Katz, Michelle, M.S.N., 78 Keck School of Medicine of the University of Southern California Department of Neurology Parkinson's Disease and Other Movement Disorders Center (Los Angeles), 128 Keeping Thinking and Verbal Skills Sharp (Struthers Parkinson Center), 29 Kendall, Craig L., 66 Kent Hospital (APDA I&R Center), Warwick, RI, 116 Keys for Caregiving (Crenshaw), 90 KIDSAID.com, 101 King, John B., 67 Kingdor National Parkinson Foundation (NPF), Nassau, Bahamas, 119 Kittle, Gale, R.N., M.P.H., 4 Kondracke, Morton, 65 Konopka, Annie, 95 Kraków Parkinson’s Disease Association (Poland), 124 Krohn, Scott, 27 Kubler-Ross, Elisabeth, M.D., 102

L La Fédération Française des Groupements de Parkinsoniens (Savigny en Sancerre, France), 122 Lahey Clinic Movement Disorders Program (Burlington, MA), 131 Lane, Michelle, 94 Lang, Anthony E., M.D., F.R.C.P., 2 Langston, J. William, M.D., 10 LBDA (Lewy Body Dementia Association), 17 Learning to Relax and Reduce Stress (Struthers Parkinson Center), 14 Lee, A.S., 29 Lee Silverman Voice Treatment (LSVT), 28, 30 Legal Issues: Planning Ahead When You Are Living with Parkinson's (Dutton), 82 Legal Issues for Lesbian/Gay/Bisexual/Transgendered (LGBT) Caregivers (Family Caregiver Alliance), 82 Legal Services Corporation (LSC), 81 Lehigh Valley Parkinson Support Group (NPF), Bethlehem, PA, 116

164

Lehman, David, Ph.D., P.T., 30 Lessons Learned: How Completed Parkinson's Clinical Studies Help Shape the Future (Ravina), 22 Le Verrier, Renée, 40 Lewy Body Dementia Association (LBDA), 17 LGBT (Legal Issues for Lesbian/Gay/Bisexual/ Transgendered) Caregivers (Family Caregiver Alliance), 82 Lieberman, Abraham, M.D., 2, 5 Life in the Balance: A Physician's Memoir of Life, Love, and Loss with Parkinson's Disease and Dementia (Graboys and Zheutlin), 62 Life Lines: A Patient's Perspective in Humorous Verse on Life with Parkinson's Disease and Cancer (Edey), 62 Life Shaken, A: My Encounter with Parkinson's Disease (Havemann), 62 Life with a Battery-Operated Brain: A Patient's Guide to Deep Brain Stimulation Surgery for Parkinson's Disease (Christensen), 62 LIHEAP (Low Income Home Energy Assistance Program) and NEAR (National Energy Assistance and Referral) Project, 79 Lila Films, Inc., 65 Lithuanian Parkinson's Disease Society (Kaunas), 123 Living Well, Running Hard: Lessons Learned from Living with Parkinson's Disease (Ball), 63 Living Well with Parkinson's: An Inspirational, Informative Guide for Parkinsonians and Their Loved Ones - Second Edition (Atwood, Hunnewell, and Saucier), 63 Living Well with Parkinson's Disease: What Your Doctor Doesn't Tell You....That You Need to Know (Garie, Church, and Conkling), 63 Living Will and the Durable Power of Attorney for Health Care,The (Gentges), 83 Living Will Registry, 103 Lockette, Kevin, P.T., 38 Loew, Jenny E., M.S., R.D., C.S.N., L.D.N., 34 Loftus, Sheree, Ph.D., 9, 88 Loma Linda University School of Medicine Loma Linda Neurology Group (CA), 128 Long Beach Memorial Medical Center (APDA I&R Center), CA, 110 Looking Forward, Moving Ahead!: Support Group Leaders Manual (NPF), 48 Lotsa Helping Hands, 93 Low Blood Pressure in Parkinson's Disease (Miller), 16

Resource Index

M MaineHealth Learning Resource Center (APDA I&R Center), Falmouth, 113 Maintaining Healthy Relationships (Struthers Parkinson Center), 49 Making a Move with Parkinson's (PDF), 54 Making the Connection Between Brain and Behavior: Coping with Parkinson's Disease (Friedman), 10 Making the Most of Your Medical Appointment (Struthers Parkinson Center), 7 Malaysian Parkinsonâ&#x20AC;&#x2122;s Disease Association (Kuala Lumpur), 123 Malta Parkinsonâ&#x20AC;&#x2122;s Disease Association (Naxxar), 123 Managing Advanced Parkinson Disease (Gardner and Wichmann), 98 Managing Parkinson's: Straight Talk and Honest Hope, Second Edition (Washington State Chapter of the American Parkinson Disease Association), 7 Marjama-Lyons, Jill, M.D., 26, 42 Mark, Margery H., M.D., 3 Mark Morris Dance Group, 36 Marsh, Laura, M.D., 14 Marshall University Medical Center (Huntington, WV), 135 Marshfield Clinic Department of Neurology (Marshfield, WI), 135 Martine, Rebecca, A.P.R.N., C.S., B.C., 14 Massachusetts General Hospital Harvard Medical School Movement Disorders Unit (Boston), 131 Massage Therapy: Is It for You? (Struthers Parkinson Center), 41 Mayo Clinic: Drugs and Supplements, 24

Resource Index

Low Income Home Energy Assistance Program (LIHEAP) and National Energy Assistance and Referral (NEAR) Project, 79 LSC (Legal Services Corporation), 81 LSU Health Sciences Center Parkinson's Resource Center and Clinic (Shreveport, LA), 130 LSVT (Lee Silverman VoiceTreatment), 28, 30 Lucky Man: A Memoir (Fox), 63 Lynn, Joanne, M.D., 101

Mayo Clinic - Jacksonville (FL), 129 Mayo Clinic - Rochester Department of Neurology (MN), 131 Mayo Clinic Scottsdale Department of Neurology Parkinson's and Movement Disorders Center (AZ), 127 McLeod, Beth Witrogen, 87 McNeill, Katherine, 95 Medical Alert Card (NPF), 55 Medical College of Georgia, HealthTecDL & Statewide AHEC Program Office, 10 Medical College of Georgia - MCG Health Neuroscience Center - Movement Disorders Center (Augusta), 129 Medical Management of Parkinson's Disease (Semenchuk), 24 Medical University of South Carolina Charleston Memorial Hospital Movement Disorder Program (Charleston), 134 Medicare Rights Center, 73 Medications, Fourth Edition (Houghton, Hurtig, and Brandabur), 24 Medications and You: When to Begin Medications (Struthers Parkinson Center), 25 Medications Approved for the Treatment of Parkinson's Disease in the USA (APDA), 25 Medication Schedule (NPF), 25 Meditation To Help With Parkinson's Disease, A (Naparstek), 44 Melvin Weinstein Parkinson's Foundation (MWPF), 77 Mensen, Gwen, P.T., 27 Menza, Matthew, M.D., 14 Methodist Neurological Institute Parkinson's and Movement Disorders Clinic (Houston, TX), 134 Meyer, Maria M., 92 Michael J. Fox Foundation for Parkinson's Research (New York, NY), 23, 105 Michael Stern Parkinson's Research Foundation, The (New York, NY), 107 Michigan Parkinson Foundation (MPF), Bingham Farms, 107, 113 Michigan State University Department of Neurology (East Lansing), 131 Middle Tennessee Chapter of the NPF (Nashville), 117

165

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

Mid-Michigan Medical Center Movement Disorders Center (Midland), 131 Mikkelsen, Anne Cutter, 66 Miller, Linda P., R.N., M.Ed., 16 Milton S. Hershey College of Medicine Penn State University Neuroscience Center (Hershey, PA), 134 Mind, Mood & Memory (Martine and Duda), 14 Minneapolis Clinic of Neurology (MN), 131 Mobility and Parkinson's: Simple Compensations (Struthers Parkinson Center), 8 Morgan, John, M.D., 10 Morton, David A., III, M.D., 74 Motivating Moves for People with Parkinson's (Hamburg), 38 Move It! An Exercise and Movement Guide for Parkinson's Disease (Lockette), 38 Movers & Shakers, 47 MPF (Michigan Parkinson Foundation), Bingham Farms, 107, 113 Mt. Sinai Medical Center Movement Disorder Program (New York, NY), 132 Muhammad Ali Parkinson Center 100 Questions & Answers About Parkinson's Disease, Second Edition (Lieberman), 2 Muhammad Ali Parkinson's Center The Barrow Neurological Institute of St. Joseph's Hospital and Medical Center (Phoenix, AZ), 127 Murry, T., 29 Musicophilia: Tales of Music and the Brain, Revised and Expanded Edition (Sacks), 41 MWPF (Melvin Weinstein Parkinson's Foundation), 77 My Family Health Portrait, 44 My Grandpa Has Parkinson's (Evans), 95 MyMedicareMatters, 73 My Moments Of Hope: Life is a Series of Moments (Amodeo), 64 My Mommy has PD...But It's Okay! (Jan Quist, McNeill, and Reese), 95 My Walk on the Parkinson's Path (Delabre), 64

N NAC (National Alliance For Caregiving), 91 NAELA (National Academy of Elder Law Attorneys), 83 NAFC (National Association For Continence), 12, 13 NAFC (National Association of Free Clinics), 72 NAHC (National Association for Home Care and Hospice), 98, 102 Naparstek, Belleruth, 44

166

NAPGCM (National Association of Professional Geriatric Care Managers), 46, 93 Nash, Edgar M., 65 National Academy of Elder Law Attorneys (NAELA), 83 National Alliance For Caregiving (NAC), 91 National Association For Continence (NAFC), 12, 13 National Association for Home Care and Hospice (NAHC), 98, 102 National Association of Free Clinics (NAFC), 72 National Association of Professional Geriatric Care Managers (NAPGCM), 46, 93 National Association of Social Workers, 46 National Center for Complementary and Alternative Medicine (NCCAM), 41 National Center on Elder Abuse (Administration on Aging), 91 National Committee for Quality Assurance (NCQA), 72 National Council on Aging, 77 National Energy Assistance and Referral Project (NEAR) and Low Income Home Energy Assistance Program (LIHEAP), 79 National Family Caregiver Association (NFCA), 85 National Financial Resources Guidebook for Patients (PAF), 80 National Foundation for Credit Counseling (NFCC), 77 National Highway Traffic Safety Administration, The (NHTSA), 53 National Hospice & Palliative Care Organization (NHPCO), 81, 100 National Hydrocephalus Foundation (NHF), 17 National Institutes of Health, 23 National Ombudsman Resource Center Directory of State Offices, 99 National Organization of Social Security Claimants' Representatives, 74 National Parkinson Foundation (NPF) See also Struthers Parkinson Center Parkinson's FOCUS: Finding Options for Care, Understanding, and Support Activities of Daily Living: Practical Pointers for Parkinson Disease (Cianci, Cloete, Gardner, Trail, and Wichmann), 27 Ask About Nutrition, 32 Ask The Doctor Online Forum, 43 Ask the Pharmacist, 24 Ask The Surgical Team, 26 Balance Checklist (Johnston), 9 Building a Better Night's Sleep (Imke), 11 Caregivers Forum, 87

Resource Index

Caring and Coping (Imke, Hutton, and Loftus), 88 Continence Care for People Living with Parkinson's Disease (Fowler), 12 Do I Have a Speech or Voice Problem? (Rosen, Lee, Osborne, Zullo, and Murry), 29 Driving When You Have Parkinson Disease (NHTSA and APDA), 53 Falls Prevention Workbook, 9 Fitness Plan I — Out of Bed (Zid), 37 Fitness Plan II — Posture (Zid), 38 Fitness Plan III — Getting off of the Floor (Zid), 38 Fitness Counts, Third Edition (Cianci), 37 Five Frequently Asked Questions about Hospitalization for Parkinson's Patients (Chou, Okun, Fernandez, Breslow, and Friedman), 55 Guide to Deep Brain Stimulation Therapy, A, Second Edition (Marjama-Lyons and Okun), 26 How to Measure Your Blood Pressure (Viscomi), 16 Information for Your Nurse and Doctor for Hospitalization, 55 Looking Forward, Moving Ahead!: Support Group Leaders Manual, 48 Low Blood Pressure in Parkinson's Disease (Miller), 16 Managing Advanced Parkinson Disease (Gardner and Wichmann), 98 Medical Alert Card, 55 Medications, Fourth Edition (Houghton, Hurtig, and Brandabur), 24 Medication Schedule, 25 Mind, Mood & Memory (Martine and Duda), 14 Nutrition Matters (Holden), 35 Open Online PD Discussion Forum, 49 Parkinson's Disease: What You And Your Family Should Know, Third Edition (Kittle), 4 Seeking Help from a Speech Pathologist (Bassich), 31 Speech and Swallowing, Second Edition (Johnson), 31 Talk To A Speech Clinician, 32 Techniques for Managing Stress (Gallego), 15

Young Onset Online Forum, 47 Young Onset Parkinson Conferences, 47 National Parkinson Foundation (NPF), Miami, FL, 105 National Private Duty Association, 49 National Quality Caregiving Network (NQCN) Caregiving Podcasts, 93 National Respite Coalition, 92 National Respite Network, 92 National Silver Alert Program, 98 National Sleep Foundation: Parkinson's Disease, 12 NCCAM (National Center for Complementary and Alternative Medicine), 41 NCQA (National Committee for Quality Assurance), 72 NEAR (National Energy Assistance and Referral) and LIHEAP (Low Income Home Energy Assistance Program) Project, 79 NeedyMeds.org, 76, 79 Neurologiskt Handikappades Riksförbund (Stockholm, Sweden), 125 Neurology Now, 2 Neuro-ophthalmology and Parkinson's Disease (Berman), 15 The NeuroMedical Center (Baton Rouge, LA), 130 NeuroTalk, 49 New Jersey Neuroscience Institute at JFK Medical Center (Edison), 132 Newsom, Hal, 61 New York College of Osteopathic Medicine, NYIT (APDA I&R Center), Old Westbury, 115 New York Methodist Hospital Neuroscience and Neurology Division (Brooklyn), 132 New York University Medical Center (APDA I&R Center), New York, 115 New York University (NYU) Parkinson's and Movement Disorders Center (New York), 133 Next Step In Care, 93 Next to Me: Luck, Leadership and Living with Parkinson's (Jones), 64 NFCA (National Family Caregiver Association), 85 NFCC (National Foundation for Credit Counseling), 77 NHF (National Hydrocephalus Foundation), 17

167

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

NHPCO (National Hospice & Palliative Care Organization), 81, 100 NHTSA (National Highway Traffic Safety Administration, The), 53 Nirenberg, Melissa J., M.D., Ph.D., 2, 5 Noble, James M., M.D., M.S., C.P.H., 16 Nolo, 83 Nolo's Guide to Social Security Disability: Getting & Keeping Your Benefits, Fifth Edition (Morton), 74 Non-Motor Problems in PD (Morgan), 10 Norges Parkinsonforbund (Oslo, Norway), 124 Northeast Kansas Parkinson Association (NPF), Topeka, 112 North Florida Parkinson Awareness Group (NPF), Tallahassee, FL, 111 Northrop, Dorothy E., M.S.W., A.C.S.W., 72 Northwestern University Department of Neurology Parkinson's Disease and Movement Disorders Center (Chicago, IL), 129 Northwest Georgia Parkinson Disease Association (NPF), Rome, GA, 112 Northwest Hospital Medical Center (Seattle, WA), 135 Northwest PADRECC (Portland, OR and Seattle, WA), 136 Northwest Parkinson's Foundation (NWPF), Seattle, WA, 61, 107, 109, 112, 114, 116, 118 Notification Card, Transportation Security Administration (TSA), 54 Not Just a Movement Disorder: Cognitive Changes in PD (Marsh), 14 NPF. See National Parkinson Foundation NPF Orange County Chapter (Newport Beach, CA), 110 NQCN (National Quality Caregiving Network) Caregiving Podcasts, 93 Nursing Home Compare (Department of Health and Human Services), 99 Nurturing a Hopeful Spirit (Struthers Parkinson Center), 49 Nutrition and Parkinson's Disease (Tangney), 34 Nutrition and Parkinson's Disease: What Matters Most? (Traviss), 34 Nutrition Matters (Holden), 35 NWPF (Northwest Parkinson's Foundation), Seattle, WA, 61, 107, 109, 112, 114, 116, 118

168

O Ochsner Foundation Clinic (APDA I&R Center), New Orleans, LA, 113 Ochsner Medical Center Department of Neurology (New Orleans, LA), 130 Ohio Parkinson Foundation Northeast Region (Tallmadge, OH), 107, 115 Ohio Parkinson Foundation Southwest Region (Fairborn, OH), 107, 115 Ohio State University Hospitals Madden Center for Parkinson's Disease & Related Disorders (Columbus), 133 Oklahoma University Health Sciences Center OU Physicians Neurology Clinic Department of Neurology (Oklahoma City), 133 Okun, Michael S., M.D., 55 Olsen, Paulette J., B.S., P.T., 27 On Death and Dying (Kubler-Ross), 102 On the Road: Keeping Driving Skills Sharp (Struthers Parkinson Center), 53 Open Online PD Discussion Forum (NPF), 49 Orange Coast Memorial Medical Center (APDA I&R Center), Fountain Valley, CA, 109 Oregon Health & Sciences University Movement Disorders Program at Parkinson Center of Oregon (Portland), 133 Osborne, J., 29 Overlook Hospital Atlantic Neuroscience Institute (Summit, NJ), 132

P PAA (Parkinson Association of Alabama), Birmingham, 107, 109 PAACI (Parkinson's Awareness Association of Central Indiana), Indianapolis, IN, 108, 112 PAC (Parkinson Association of the Carolinas), Charlotte, NC, 107, 115, 116 PADRECC (Parkinson's Disease Research, Education and Clinical Centers), 75, 136 PAF (Patient Advocate Foundation), 80 Pain and Parkinson's: Are They Related? (Struthers Parkinson Center), 11 Pain in Parkinson's Disease (Ford), 11 PAIR (Parkinsonâ&#x20AC;&#x2122;s Advocates in Research), 23 Pakistan Parkinson's Society (Karachi), 124 PAN (Parkinson's Action Network), Washington, DC, 58, 70, 105 PAR (Parkinson Association of the Rockies), Denver, CO, 107, 110

Resource Index

ParentYourParents, 91 Parkinson Alliance, The, 66 Parkinson Alliance, The (Kingston, NJ), 105 Parkinson Association of Alabama (PAA), Birmingham, 107, 109 Parkinson Association of Greater Daytona Beach (NPF), Ormond Beach, FL, 111 Parkinson Association of Illinois (NPF), Chicago, 112 Parkinson Association of Minnesota (NPF), Golden Valley, 113 Parkinson Association of Northern California (NPF), Sacramento, 110 Parkinson Association of South Africa (Bryanston), 120 Parkinson Association of South Dakota (NPF), Sioux Falls, 116 Parkinson Association of Southwest Florida (NPF), Naples, 111 Parkinson Association of the Carolinas (PAC), Charlotte, NC, 107, 115, 116 Parkinson Association of the Rockies (PAR), Denver, CO, 107, 110 Parkinson Council, The (NPF), Bala Cynwyd, PA, 116 Parkinsonfelagio (Torshavn, Faeroe Islands), 122 ParkinsonFörbundet (The Swedish Parkinson's Disease Association), Stockholm, 125 Parkinson Foreningen Denmark (Copenhagen K, Denmark), 121 Parkinson Foundation Northwest Ohio (PFNWO), Oak Harbor, 108, 115 Parkinson Foundation of Oklahoma (Oklahoma City), 108 Parkinson Foundation of the Heartland (NPF), Leawood, KS, 112 Parkinson Foundation of the National Capital Area (NPF), McLean, VA, 88, 118 Parkinson Foundation of Western Pennsylvania (NPF), Pittsburgh, 116 Parkinson Hastaliği Derneği (Turkish Parkinson's Disease Society), Ankara, Turkey, 125 Parkinson-Hilfe Deutschland e.V. (Meseberg bei Magdeburg, Germany), 122 Parkinson Information Exchange Network Online, 50

Parkinsonism Society of New Zealand (Wellington), 124 Parkinson Italia (Milan, Italy), 123 Parkinson Luxembourg (PL) a.s.b.l, 123 Parkinson Network of Arizona (NPF), Phoenix, AZ, 109 Parkinson Pipeline Project, 22 ParkinsonPolska (Warsaw, Poland), 124 Parkinson's: Everything You Need to Know (Grimes), 4 Parkinson's Action Network (PAN), 58, 70 Parkinson's Action Network (PAN), Washington, DC, 105 Parkinson’s Advocates in Research (PAIR), 23 Parkinson's and Movement Disorders Center of Maryland (Elkridge, MD), 130 Parkinson's and Movement Disorders Medical Group, The (Fountain Valley, CA), 127 Parkinson's Association of Ireland (Dublin, Ireland), 123 Parkinson's Association of Tasmania Inc. (Lindisfarne, Australia), 120 Parkinson's Association of Western New York, Inc. (NPF), Williamsville, 115 Parkinson’s Association of West Michigan (NPF), Grand Rapids, 113 Parkinson’s Auckland (New Zealand), 124 Parkinson's Australia (Scullin), 121 Parkinson's Awareness MonthToolkit (PDF), 58 Parkinson Schweiz (Zurich, Switzerland), 125 Parkinson's Clinic of The Ozarks (Springfield, MO), 131 Parkinson's Disease: A Complete Guide for Patients and Families, Second Edition (Weiner, Lang, and Shulman), 2 Parkinson’s Disease: A Guide for Patients and Families (ANA), 8 Parkinson's Disease: What You And Your Family Should Know,Third Edition (Kittle), 4 Parkinson’s Disease & Activities of Daily Living (Argue and Csuy), 39 Parkinson's Disease and Constipation: A Nutrition Audiotape and Guidebook for People with Parkinson's ( Holden), 35 Parkinson's Disease and itsTreatment: Secrets, Myths and Misconceptions (Nirenberg), 2 Parkinson's Disease and Movement Disorder Society (PDMDS), Mumbai, India, 123

169

Parkinson’s Disease Resource List

Parkinson's Disease and Oral Healthcare (Huber), 16 Parkinson’s Disease and the Art of Moving (Argue), 39 Parkinson's Disease and the Family: A New Guide (Sharma and Richman), 94 Parkinson's Disease Association of San Diego (APDA I&R Center and Chapter), CA, 110 Parkinson's Disease for Dummies (Tagliati, Guten, and Horne), 3 Parkinson's Disease Foundation (PDF), v See also Location Index; Subject Index Building Patient Trust: A New Era in Parkinson's Clinical Research Rights & Responsibilities, 19 Caring for the PD Care Partner (Habermann), 87 Choosing the Right Doctor (Jedlinski), 7 Clinical Research Learning Institute, 21 Combating Depression in Parkinson's Disease (Menza), 14 contact information, v, 6, 58, 86, 127 Coping with Dementia: Advice for Caregivers (Henchcliffe and Rosner), 92 Creativity and Parkinson's Project, 40 Deep Brain Stimulation for Parkinson's Disease, Third Edition (Ford), 26 Dental Health and Parkinson's Disease (Noble), 16 Diagnosis Parkinson's Disease: You are not alone (Berman), 7 Driving and Parkinson's Disease - When is it Time to Give Up the Keys?, 53 Employment with PD:Working it Out (Herman), 70 Falls Prevention (Loftus), 9 Fatigue, Sleep Disorders and Parkinson's Disease (Friedman), 12 Gastrointestinal and Urinary Dysfunction in PD (Pfeiffer), 13 Genetics and Parkinson's (Gwinn), 1 Getting Involved in Clinical Research, 21 Helping Your Children Cope with Your PD (Lane), 94 How toTake Care of the Caregiver (Habermann), 90 Legal Issues: Planning Ahead When You Are Living with Parkinson's (Dutton), 82 Making a Move with Parkinson's, 54 Not Just a Movement Disorder: Cognitive Changes in PD (Marsh), 14 Nutrition and Parkinson's Disease (Tangney), 34 Nutrition and Parkinson's Disease: What Matters Most? (Traviss), 34

170

Pain in Parkinson's Disease (Ford), 11 Parkinson’s Advocates in Research (PAIR), 23 Parkinson's Awareness Month Toolkit, 58 Parkinson's Disease and its Treatment: Secrets, Myths and Misconceptions (Nirenberg), 2 Parkinson's Disease Q & A, Sixth Edition (Ford and Severt), 3 Parkinson’s FAQ, 4 Parkinson’s Quilt Project, 41 PD: More than a Movement Disorder (Langston), 10 PD Partnership, The (Johnson), 94 PD Secrets, Myths and Misconceptions (Nirenberg), 5 PDWebcast: Parkinson's Science: Innovations and New Perspectives, 4 Physical Therapy in PD (Lehman and Hirsch), 30 Physical Therapy & PD: What You Need to Know (Cianci), 30 PINS: Parkinson's Information Service HelpLine, 1, 44 Planning for End-of-Life: The Role of Hospice in Parkinson's Disease Care (Hummel and Watson), 103 Should You Consider Deep Brain Stimulation? (Ford), 27 Speech Therapy in PD (Ramig and Fox), 31 Starting a Support Group, 50 Traveling with PD (Willocks), 54 Understanding Advanced Parkinson’s: Benefits of Palliative Care, 98 Understanding Advanced Parkinson’s: Cognitive Changes, 98 Understanding Advanced Parkinson’s: Managing the Movement Symptoms, 99 Understanding Advanced Parkinson’s: New Symptoms – PD or an Emergency?, 99 Understanding Parkinson's Plus Syndromes and Atypical Parkinsonism, 18 Understanding PD Medications, 25 Ups and Downs of Dopamine: Impulse Control and Parkinson’s, The (Weintraub), 15 web site for, v, 6, 58, 86 What's in the Parkinson's Pipeline? (Standaert), 24 What’s Missing? Communication and the PD Partnership (Deshefy-Longhi), 91 Parkinson's Disease Foundation (PDF), New York, NY, 105 Parkinson's Disease Handbook (Golbe, Mark, Sage), 3

Resource Index

Parkinson's Disease Q & A, Sixth Edition (Ford and Severt), 3 Parkinson's Disease Research, Education and Clinical Centers (PADRECC), 75, 136 Parkinson’s Disease Society Singapore, 125 Parkinson's Disease: 300 Tips for Making Life Easier, Second Edition (Schwarz), 51 Parkinson's Disease Treatment Book: Partnering with Your Doctor to Get the Most from Your Medications, The (Ahlskog), 3 Parkinson's Disease Work-Related Disability Assessment (PAN), 70 Parkinson’s FAQ (PDF), 4 Parkinson's Group of the Ozarks (NPF), Springfield, MO, 114 Parkinson Shop, The, 56 Parkinson's Institute and Clinical Care Center, The (Sunnyvale, CA), 128 Parkinson’s In The Park (NPF), Springfield, GA, 112 Parkinson's in the Workplace (Struthers Parkinson Center), 70 Parkinson’s Network of Mount Diablo (NPF), Walnut Creek, CA, 110 Parkinson's New South Wales (North Ryde, Australia), 121 Parkinson Society Canada (Toronto, Canada), 121 Parkinson's Queensland (Stones Corner, Australia), 121 Parkinson’s Quilt Project (PDF), 41 Parkinson's Rehab Resource Center (APDA), 30 Parkinson's Resource Center of Spokane (WA), 108, 118 Parkinson's Resource Organization (PRO), Palm Desert, CA, 108, 110 Parkinson's Resources of Oregon (NPF), Lake Oswego, 116 Parkinson's Society of the Gold Coast (Bundall, Australia), 120 Parkinson's Society - Rio de Janeiro (Brazil), 121 Parkinson's South Australia Inc. (Unley, Australia), 121 Parkin-son's Spaces: How One Man, Facing Parkinson’s, Views Everyday Life (Reeves), 64

Parkinson's Support Group of Upstate New York, Inc. (NPF), Rochester, 115 Parkinson's UK (London, UK), 125 Parkinson Support Center of Kentuckiana (Louisville), 108, 112 Parkinson Support Group of Syracuse New York (NPF), Clay, 114 Parkinson's Victoria (Cheltenham, Australia), 120 Parkinson's Western Australia (Nedlands, Australia), 121 Parkinson Vereniging (Bunnik, Netherlands), 123 ParkOptimists (NPF),The (Coral Gables, FL), 111 Participating in Parkinson's Clinical Research: The Key to Becoming an Informed Study Volunteer (Getz), 23 Partnership for Prescription Assistance (PPA), 76, 79 Patient Advocate Foundation (PAF), 80 Patients Like Me, 50 PD: More than a Movement Disorder (Langston), 10 PDF. See Parkinson's Disease Foundation PD Index, 4 PDMDS (Parkinson's Disease and Movement Disorder Society), Mumbai, India, 123 PD Online Research (Michael J. Fox Foundation for Parkinson’s Research), 23 PD Partnership, The (Johnson), 94 PDPlan4Life, 64 PD Secrets, Myths and Misconceptions (Nirenberg), 5 PDtrials, 19, 20, 58 Inside Parkinson's ClinicalTrials: What You Need to Know (Jennings and DeWitte), 22 Lessons Learned: How Completed Parkinson's Clinical Studies Help Shape the Future (Ravina), 22 Participating in Parkinson's Clinical Research: The Key to Becoming an Informed Study Volunteer (Getz), 23 PDWebcast: Parkinson's Science: Innovations and New Perspectives (PDF), 4 Peninsula Hospital (APDA I&R Center), Far Rockaway, NY, 114 Personal Touch Health Care Apparel, Inc., 56 Pfeiffer, Ron, M.D., 13 PFNWO (Parkinson Foundation Northwest Ohio), Oak Harbor, 108, 115

171

Parkinson’s Disease Resource List

Philadelphia PADRECC (PA), 136 Physical Therapy in PD (Lehman and Hirsch), 30 Physical Therapy & PD: What You Need to Know (Cianci), 30 Pine Mountain Danes (Association of Driver Rehabilitation Specialists), 51 PINS: Parkinson's Information Service HelpLine (PDF), 1, 42 Planning for End-of-Life: The Role of Hospice in Parkinson's Disease Care (Hummel and Watson), 103 Planning For the Future (Struthers Parkinson Center), 83 PL (Parkinson Luxembourg) a.s.b.l, 123 Posture and Parkinson's (Struthers Parkinson Center), 8 PPA (Partnership for Prescription Assistance), 76, 79 Pratt, Carol, L.D.N., 34 PRO (Parkinson's Resource Organization), Palm Desert, CA, 108, 110 Professional Fit, 56 Professional Geriatric Care Managers (PGCM), 46 PSÍ (Parkinsonsamtökin á Íslandi), Reykjavik, Iceland, 122 PubMed (National Center for Biotechnology Information), 23

Q Quist, Jan, 95

R Ramig, Lorraine Ramig, Ph.D., CCC-SLP, 31 Ravina, Bernard, M.D., M.S.C.E., 22 RCI (Rosalynn Carter Institute for Caregiving), 93 Rebuilding Together, 80 Reese, Susan, M.A., R.N., L.C.S.W., 47, 95 Reeves, Timothy L., 64 Regional Non-Profit Organisation for the Advancement of Parkinsonian Patients, The (Moscow, Russia), 124 Rehabilitation Engineering and AssistiveTechnology Society of North America (RESNA), 56 Rezak, Michael, M.D., Ph.D., 47 Richman, Elaine, Ph.D., 94 Robbins, JoAnn, Ph.D., CCC-SLP, 33 Robert Wood Johnson University Hospital (APDA I&R Center), New Brunswick, NJ, 114 Robert Wood Johnson University Hospital Parkinson's and Movement Disorders Center (New Brunswick, NJ), 132

172

Rocky Mountain Movement Disorder Center and The Colorado Neurological Institute (CNI) Movement Disorder Center (Englewood), 128 Rork, Tami, P.T., M.S.P.T., 36 Rosalynn Carter Institute for Caregiving (RCI), 93 Rosen, C.A., 29 Rosenbaum, Richard B., 66 Rosner, Jeanne, 92 Ruddy, Bari Hoffman, Ph.D., CCC-SLP, 31 Rush University Medical Center Department of Neurological Sciences Rush Movement Disorder Group (Chicago, IL), 129 Russell, Jackie, R.N., B.S.N., C.N.O.R., 36 RxList: Drugs A-Z List, 25

S Sacks, Julie, L.C.S.W., 47, 69 Sacks, Oliver, M.D., F.R.C.P., 41 Saddleback Memorial Medical Center (APDA I&R Center), Laguna Hills, CA, 110 Sage, Jacob I., M.D., 3 Sammons Preston, 56 San Francisco PADRECC (CA), 136 Sapienza, Christine, Ph.D., CCC-SLP, 31 Saucier, Roxanne Moore, 63 Saving Milly: Love, Politics, and Parkinson's Disease (Kondracke), 65 Scelta, Anthony, Jr., 59 Schechter, Steven, M.D., 5 Schmalfeldt, Bill, 57 Schwarz, Shelley Peterman, 51 Scott & White - University Medical Campus Neuroscience Institute Plummer Movement Disorders Center (Temple, TX), 134 Scripps Clinic (La Jolla, CA), 128 Sears Home Health Catalog, 56 See, Julie, B.S., 36 Seeking Help from a Speech Pathologist (Bassich), 31 Semenchuk, Marilyn R., Pharm.D., B.C.P.P., 24 Senior Job Bank, 70 Sensible Self-Help for Parkinson's Problems, Updated Edition (Nash), 65 Serbian Association Against Parkinson's Disease (Belgrade, Yugoslavia), 122 Severt, W. Lawrence, M.D., Ph.D., 3 Sexuality & Intimacy (Struthers Parkinson Center), 44, 45 Shaken (documentary), 65

Resource Index

Shaking Up Parkinson: Fighting Like a Tiger, Thinking Like a Fox ( Lieberman), 5 Sharing the Diagnosis: Telling Others You Have Parkinson's (Struthers Parkinson Center), 45 Sharma, Nutan, M.D., 94 Shenkman, Martin M., C.P.A., M.B.A., J.D., 82 Shomon, Mary J., 42 ShouldYou Consider Deep Brain Stimulation? (Ford), 27 Shulman, Lisa M., M.D., 2 Shy-Drager Syndrome/Multiple System Atrophy Support Group, 17 Silence of the Bunnies (Stark), 65 Simon Foundation for Continence, The, 13 Sims, Kathi, R.N., 36 Sit and Be Fit (Wilson), 39 SMDC Medical Center Department of Neurology (Duluth, MN), 131 Snyder, Joan Blessington, 66 Social Security Administration (SSA), 74 Social Security Administration: Office Locator, 74 Social Security Administration: Retirement Estimator, 75 Social Worker Locator, 50 Soft Foods for Easier Eating Cookbook (Woodruff and Gilbert-Henderson), 35 Sorting Out Your Feelings (Struthers Parkinson Center), 15 Southeast PADRECC (Richmond, VA), 136 Southeast Parkinson Disease Association (Orlando, FL), 111 Southern Illinois University School of Medicine Department of Neurology (Springfield), 130 Southern Nevada (APDA I&R Center and Chapter), Las Vegas, 114 South Palm Beach County Chapter (NPF), Boca Raton, FL, 111 Southwest PADRECC (Los Angeles, CA), 136 Spanish, resources in See also Location Index Activities of Daily Living: Practical Pointers for Parkinson Disease (Cianci, Cloete, Gardner,Trail, and Wichmann), 27 Advice for Patients Going to the Emergency Room orTraveling (APDA), 53, 55 Agency for Health Care Research and

Quality (AHRQ) Office of Communications and KnowledgeTransfer, 42 Aging in the Know: Pressure Ulcers (Bed Sores) (AGS Foundation for Health in Aging), 97 American Speech-Language-Hearing Association (ASHA), 27 Be Independent: A Guide for People with Parkinsonâ&#x20AC;&#x2122;s Disease (Flinn, Mensen, Krohn and Olsen), 27 CaringBridge, 89 Caring Connections, 100 Choosing the Right Doctor (Jedlinski), 7 Combating Depression in Parkinson's Disease (Menza), 14 Coping with Dementia: Advice for Caregivers (Henchcliffe and Rosner), 92 Dental Health and Parkinson's Disease (Noble), 16 Driving and Parkinson's Disease - When is it Time to Give Up the Keys? (PDF), 53 Easy Tai Chi-Qigong: For People of All Ages and Especially for Seniors and People with Parkinson's (Fiore and Fiore), 37 Employment with PD:Working it Out (Herman), 70 "End of Life Choices" (FCA), 101 Fitness Counts, Third Edition (Cianci), 37 Five Wishes (Aging With Dignity), 82 Gastrointestinal and Urinary Dysfunction in PD (Pfeiffer), 13 Genetics and Parkinson's (Gwuinn), 1 Helping Your Children Cope with Your PD (Lane), 94 International Essential Tremor Foundation (IETF), 17 Medicare Rights Center, 73 Medications, Fourth Edition (Houghton, Hurtig, and Brandabur), 24 My Family Health Portrait, 44 MyMedicareMatters, 73 National Association For Continence (NAFC), 13 National Foundation for Credit Counseling (NFCC), 77 National Sleep Foundation: Parkinson's Disease, 12

173

Parkinson’s Disease Resource List

Not Just a Movement Disorder: Cognitive Changes in PD (Marsh), 14 Nutrition and Parkinson's Disease: What Matters Most? (Traviss), 34 Nutrition Matters (Holden), 35 Pain in Parkinson's Disease (Ford), 11 Parkinson's Disease: What You And Your Family Should Know, Third Edition (Kittle), 4 Parkinson’s FAQ (PDF), 4 PD: More than a Movement Disorder (Langston), 10 Physical Therapy in PD (Lehman and Hirsch), 30 Should You Consider Deep Brain Stimulation? (Ford), 27 Speech and Swallowing, Second Edition (Johnson), 31 Speech Therapy in PD (Ramig and Fox), 31 TogetherRx, 80 Ups and Downs of Dopamine: Impulse Control and Parkinson’s, The (Weintraub), 15 US Equal Employment Opportunity Commission (EEOC), 71 Speaking Effectively: A Strategic Guide for Speaking and Swallowing (Ruddy and Sapienza), 31 Speech and Swallowing, Second Edition (Johnson), 31 Speech Therapy in PD (Ramig and Fox), 31 Speech Training for Parkinson’s (Clark), 32 SSA (Social Security Administration), 74, 75 St. Augustine Parkinson's Disease Support Group (NPF), FL, 111 St. Catherines of Siena Hospital (APDA I&R Center), Smithtown, NY, 115 St. Joseph's/Candler Institute for Neurosciences Movement Disorders Program (Savannah, GA), 129 St. Joseph's Regional Health Center (APDA I&R Center and Chapter), Hot Springs, AR, 109 St. Joseph’s Hospital (Tucson, AZ), 127 St. Mary’s Hospital (APDA I&R Center and Chapter), Madison, WI, 118 Stages of Adjustment to Parkinson's (Struthers Parkinson Center), 45 Standaert, David G., M.D., Ph.D., 24 Stanford University Medical Center, Department of Neurology (APDA I&R Center), CA, 110 Stanford University Medical Center Neuroscience Clinic Comprehensive Movement Disorders Center (CA), 128 Stark, Dan, 65 Starting a Support Group (PDF), 50

174

Staten Island University Hospital (APDA I&R Center), Staten Island, NY, 115 Staying Active: Hobbies and Leisure Pursuits (Struthers Parkinson Center), 51 Steps for a Healthy Diet (Struthers Parkinson Center), 35 Stewart, R. Malcolm, M.D., 90 Stinson, Carolyn, 66 Stow. Choroby Parkinsona (Warsaw, Poland), 124 Stowarzyszenie Osob Niepelnosprawnych AKSON (Bydgoszcz, Poland), 124 Struthers Parkinson Center Parkinson's FOCUS: Finding Options for Care, Understanding, and Support See also National Parkinson Foundation (NPF) Enhancing Hand Coordination, 8 Exercising Your Speech and Voice System, 29 Fighting Fatigue: Enhancing Energy and Endurance, 12 Fitness and Flexibility: The Role of Exercise in PD Management, 37 Keeping Thinking and Verbal Skills Sharp, 29 Learning to Relax and Reduce Stress, 14 Maintaining Healthy Relationships, 49 Making the Most of Your Medical Appointment, 7 Massage Therapy: Is It for You?, 41 Medications and You: When to Begin Medications, 25 Mobility and Parkinson's: Simple Compensations, 8 Nurturing a Hopeful Spirit, 49 Pain and Parkinson's: Are They Related?, 11 Parkinson's in the Workplace, 70 Planning For the Future, 83 Posture and Parkinson's, 8 On the Road: Keeping Driving Skills Sharp, 53 Sexuality & Intimacy, 44, 45 Sharing the Diagnosis: Telling Others You Have Parkinson's, 45 Sorting Out Your Feelings, 15 Stages of Adjustment to Parkinson's, 45 Staying Active: Hobbies and Leisure Pursuits, 51 Steps for a Healthy Diet, 35 Suggestions for Handwriting Changes, 9 Tai Chi and Yoga: Improving the Mind-Body Connection, 39 Take Care of Your Voice, 32 Struthers Parkinson's Center (Golden Valley, MN), 131

Resource Index

T Tagliata, Michele, M.D., 3 Tai Chi and Yoga: Improving the Mind-Body Connection (Struthers Parkinson Center), 39 Tai Chi Parkinson's Exercises, 39 Taiwan Parkinson Association (Taipei), 125 Take Care of Your Voice (Struthers Parkinson Center), 32 Take Charge of Parkinson's Disease: Dynamic Lifestyle Changes to Put You in the Driver's Seat (Mikkelsen and Stinson), 66 Talan, Jamie, 59 Tale of A Parkie Princess, The: A Chronic Illness Described in a Fairy Tale (Konopka), 95 Talk To A Speech Clinician (NPF), 32 Tallahassee Memorial Hospital Neuroscience Center Parkinson's Research Foundation Center of Excellence (FL), 129 Taming of the Fork (Golding), 66 Tangney, Christine C., Ph.D., F.A.C.N., C.N.S., 34 Tardive Dyskinesia Center, 18 Techniques for Managing Stress (Gallego), 15 34 Helpful Hints to Improve the Quality of Life of People with Parkinson's (APDA), 50 Thomas Hartman Foundation for Parkinson's Research (East Islip, NY), 108 Tilden, Helen, R.N., 36 TogetherRx, 80 Trail, Marilyn, M.O.T., O.T.R., B.C.N., 27 Transportation Security Administration (TSA), 54 Traveling with PD (Willocks), 54 Traviss, Karol, M.Sc., R.D., 34 Trussell, James, 58 TSA (Transportation Security Administration), 54

Resource Index

Suggestions for Handwriting Changes (Struthers Parkinson Center), 9 Sullivan, Paula A., M.S., CCC-SLP, 33 SUNY Downstate Medical Center Parkinson's Disease and Related Disorders (Brooklyn, NY), 132 Surviving Adversity: Living with Parkinson's Disease – 28 Stories That Will Inspire You (Carley), 66

U UCLA (APDA I&R Center), Los Angeles, CA, 110 Ukrainian Parkinson Disease Society (Kiev), 125 UMass Memorial Medical Center (Worcester, MA), 131 Understanding Advanced Parkinson’s: Benefits of Palliative Care (PDF), 98 Understanding Advanced Parkinson’s: Cognitive Changes (PDF), 98 Understanding Advanced Parkinson’s: Managing the Movement Symptoms (PDF), 99 Understanding Advanced Parkinson’s: New Symptoms – PD or an Emergency? (PDF), 99 Understanding Parkinson's Disease: A Personal and Professional View (Rosenbaum), 66 Understanding Parkinson's Disease: A Self-Help Guide, Second Edition (Cram, Schechter, and Gao), 5 Understanding Parkinson's Plus Syndromes and Atypical Parkinsonism (PDF), 18 Understanding PD Medications (PDF), 25 Unidos contra el Parkinson (Spain), 125 United States Living Will Registry, 103 University Hospitals Case Medical Center of Cleveland Department of Neurological Surgery and the Neurological Institute (OH), 133 University Neurology, Inc. (APDA I&R Center), Cincinnati, OH, 115 University of Alabama at Birmingham, Department of Neurology (APDA I&R Center and Chapter), 109 University of Alabama at Birmingham Kirklin Clinic, Parkinson's Disease and Movement Disorders Program, 127 University of Arizona College of Medicine University Physicians and University Health Care Movement Disorders Clinic (Tucson), 127 University of Arizona Department of Neurology (APDA I&R Center), Tucson, 109 University of Arkansas for Medical Sciences Neurology Clinic (Little Rock, AR), 127

175

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

University of Buffalo General Hospital Comprehensive Parkinson's Disease and Movement Disorder Center (NY), 132 University of California at Davis Medical Group Neurology Clinic Movement Disorders Program (Sacramento, CA), 128 University of California at Irvine (Orange, CA), 128 University of California at Los Angeles Westwood UCLA Neurological Services in Westwood Movement Disorders Program (CA), 128 University of California at San Diego Neurology Clinic (La Jolla), 128 University of California at San Francisco UCSF Neurology Practice, 128 University of Chicago Medical Center Parkinson's Disease and Movement Disorders Center (IL), 129 University of Cincinnati UC Physicians Neurology The Gardner Center for Parkinson's Disease and Movement Disorders Center (OH), 133 University of Colorado Hospital Neurosciences Center Movement Disorder Practice (Aurora), 128 University of Connecticut Health Center Neurology and Nephrology Clinic (Farmington, CT), 128 University of Florida Department of Neurology Movement Disorders Center (Gainesville), 129 University of Iowa Hospitals and Clinics (Iowa City), 130 University of Kansas Medical Center Department of Neurology - Landen Center on Aging Parkinson's Disease and Movement Disorder Clinic (Kansas City), 130 University of Kentucky (APDA I&R Center), Lexington, 112 University of Louisville Movement Disorder Clinic at Frazier Rehab (Louisville, KY), 130 University of Maryland Hospital (APDA I&R Center), Baltimore, 113 University of Maryland School of Medicine Neurology and Ambulatory Care Center Maryland Parkinson's Disease and Related Movement Disorders Center (Baltimore), 130 University of Miami - Miller School of Medicine Department of Neurology The Center for Parkinson's Disease and Movement Disorders (FL), 129 University of Michigan Geriatric Center Clinic (East Ann Arbor), 131

176

University of Minnesota Medical Center Department of Neurology (Minneapolis), 131 University of Nebraska Neurological Sciences Center (Omaha), 132 University of Nevada University Health System (Las Vegas and Reno), 132 University of New Mexico HSC (APDA I&R Center and Chapter), Albuquerque, 114, 132 University of North Carolina at Chapel Hill Department of Neurology Movement Disorders Program, 133 University of Pennsylvania Health System Pennsylvania Hospital Neurological Institute and Movement Disorder Center (Philadelphia), 134 University of Pittsburgh Medical Center (PA), 134 University of Puerto Rico Medical Sciences Campus Department of Neurology (San Juan), 134 University of Rochester Department of Neurology Movement Disorders Program (NY), 133 University of South Florida Health College of Medicine Parkinson's Research Foundation Center of Excellence (Tampa), 129 University of Tennessee Health Sciences Center UT Medical Group Department of Neurology (Memphis), 134 University of Toledo Medical Center Parkinson's and Movement Disorders Program (OH), 133 University of TX HSC at San Antonio, Department of Neurology (APDA I&R Center and Chapter), 117 University of Utah Health Sciences Imaging and Neuroscience Center Movement Disorder Clinic (Salt Lake City), 135 University of Utah HSC, Department of Neurology (APDA I&R Center), Salt Lake City, 118 University of Vermont FAHC-UHC Campus, Neurology Department (APDA I&R Center and Chapter), Burlington, 118 University of Vermont Fletcher Allen Neurology Health Care Service Movement Disorders Clinic (Burlington), 134 University of Virginia Health System, Fontaine Research Park (APDA I&R Center), Charlottesville, 118

Resource Index

V V.A. Hospital (APDA I&R Center), Reno, NV, 114 Vanderbilt University Medical Center Parkinson's Disease Clinic (Nashville, TN), 134 Veterans Affairs Parkinson's Disease Research, Education & Clinical Centers (PADRECCs), 136 Veterans of Foreign Wars USA (VFW), 75 Virginia Commonwealth University Medical Center Division of Neurology (Richmond), 135 Virginia Mason Medical Center Neuroscience Institute (Seattle, WA), 135 Viscomi, Paula, R.N., M.ScN., 16 Visiting Nurse Associations of America (VNAA), 51, 97 Voices from the Parking Lot: Parkinson's Insights and Perspectives (Green, Snyder, and Kendall), 66

Resource Index

University of Virginia Movement Disorders Program (Charlottesville), 135 University of Washington, Department of Neurology (APDA I&R Center), Seattle, 118 University of Washington Medical Center Neurology Clinic (Seattle), 135 University of Wisconsin-Madison Department of Neurology Movement Disorder Program (Madison), 135 Ups and Downs of Dopamine: Impulse Control and Parkinsonâ&#x20AC;&#x2122;s, The (Weintraub), 15 US Administration on Aging Eldercare Locator, 43, 46, 78, 89, 97 US Department of Justice, 81 US Department of Labor, 69, 82 US Equal Employment Opportunity Commission (EEOC), 71 US Food and Drug Administration (FDA), 24, 25, 26 US Living Will Registry, 103 US National Library of Medicine National Institutes of Health, 23 UT Southwestern Medical Center Neurology Clinic and Clinical Center for Multiple Sclerosis (Dallas, TX), 134

W Wagner, Mary L., Pharm.D., M.S., 12 Wake Forest University Baptist Medical Center Department of Neurology Movement Disorders Unit (Winston-Salem, NC), 133 Walk Around the House, Don't Fall: Keep Up Your Independence and Stay Safe at Home (Batterman), 51 Wall, A.E.P., 59 Washington Hospital Center (District of Columbia), 128 Washington State Chapter of the American Parkinson Disease Association, 7, 118 Washington University School of Medicine, Movement Disorders Center (St. Louis, MO), 131 Washington University School of Medicine (APDA I&R Center and Chapter), St. Louis, MO, 114 Watson, Heidi, R.N., B.S.N., 103 Webhealing.com, 103 Weihofen, Donna L., R.D., M.S., 33 Weill Cornell Medical College, Neurology Clinic, Parkinson's Disease and Movement Disorders Center (New York, NY), 133 Weiner, William J., M.D., 2 Weintraub, Daniel, M.D., 15 Well Spouse Association (WSA), 91 We Move (New York, NY), 105 We Move: Movement Disorder Glossary of Terms, 5 We Move: Unified Parkinson's Disease Rating Scale, 5 We Move Discussion Forum: Corticobasal Degeneration, 18 We Move Discussion Forum: Multiple System Atrophy, 18 We Move Discussion Forum: Progressive Supranuclear Palsy, 18 Westfield Memorial Hospital (APDA I&R Center), NY, 115 West Virginia University School of Medicine Department of Neurology (Morgantown), 135 What is it Like to Have Parkinson's? (King), 67

177

Parkinsonâ&#x20AC;&#x2122;s Disease Resource List

What's in the Parkinson's Pipeline? (Standaert), 24 Whatâ&#x20AC;&#x2122;s Missing? Communication and the PD Partnership (Deshefy-Longhi), 91 What Your Doctor May Not Tell You About Parkinson's Disease: A Holistic Program For Optimal Wellness (Marjama-Lyons and Shomon), 42 When Parkinson's Strikes Early: Voices, Choices, Resources, and Treatment (Blake-Krebs and Herman), 67 When Should Parkinson's Disease Patients Go to the Emergency Room? (Friedman), 55 Who Is Pee Dee? Explaining Parkinson's Disease to a Child (Jenkins), 95 Wichita Rehabilitation Hospital Wichita Parkinson's Center (KS), 130 Wichmann, Rose, P.T., 27, 98 WidowNet, 103 Willocks, Peggy, 54 Wilson, J. Randy, 34 Wilson, Mary Ann, R.N., 39 Wisconsin Parkinson Association (NPF), Milwaukee, 118 Wobbly Williams (Glasgow), 125 Woodruff, Sandra, R.D., 35 World Parkinson Coalition, Inc. (NewYork, NY), 120 World Parkinson Disease Association (Milano, Italy), 120 WSA (Well Spouse Association), 91 Wykle, Mary O., Ph.D., 36

Y Yale University School of Medicine Department of Neurology (New Haven, CT), 128 Yoga for Movement Disorders: Rebuilding Strength, Balance and Flexibility for Parkinson's Disease and Dystonia (Le Verrier), 40 Youcantoocan, Inc., 56 Young Onset Online Forum (NPF), 47 Young Onset Parkinson Conferences (APDA and NPF), 47 Young Parkinson's Handbook: A Guide for Patients and their Families (Rezak, Reese, and Sacks), 47

Z Zheutlin, Peter, 62 Zid, David, B.A., A.C.E., A.P.G., 36, 37, 38 Zullo, T., 29

178

Parkinson’s Treatment Centers

Caring In Parkinson’s

Employment, Insurance, Financial Assistance and Legal Matters

Understanding Parkinson’s Managing Advanced Parkinson’s Learning About Parkinson’s

Parkinson’s Organizations

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