Live it! Spring 2014 by Iowa Chapter of the American Parkinson Disease Association

CONFERENCE DETAILS - PAGE 7

A Resource for Iowans with Parkinson’s Disease and those who care for them.

volume 5 w issue 1 spring 2014

Live it! is a publication of the Iowa Parkinson Disease Information and Referral Center

Beyond the Diagnosis

Deb Wityk

Andrew Duarte

Terry Hertges

Coping with Challenges and Living Well with Young Onset Parkinson’s

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table of

contents 3 3 4 5-6

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From the Staff

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Annual Conference

From Our Medical Director Connect with the Chapter

Connect with Us, Membership Drive, APDA, Information and Referral Center, Upcoming Events

7 8 9 10

Tools You Can Use LSVT Program - On With Life Cover Story

Beyond the Diagnosis

Deb Wityk, husband Mike and grandkids Keegan, Hailey, Laura, Jacqueline, Jesse, Leah, McKenna and Stephen

Feature Article

Youthing Instead of Aging, by Colleen Taylor

14 15 16 17 18 19

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Past Events, Exercise Groups Brain Games, Artability Donors, Donations Upcoming Events Links, Resources and Sign Language Support Groups, Membership Application Scan the QR code at left to go directly to apdaiowa.org

Live it!

ONLINE

Live it! is also available online! Visit www.apdaiowa.com for an electronic copy. Also, follow us on Facebook (www.facebook.com/IowaIandR) and Twitter @IowaParkinson (twitter.com/IowaParkinson)

Table of Contents

15 Reader Submissions

Live it! magazine is intended to be a voice for the Parkinson’s disease community, and we are pleased to consider article, art and photo submissions for future issues from our readers. Please send your submission requests to Iowa Parkinson’s Disease Information and Referral at UnityPoint Health – Des Moines, 1200 Pleasant St. E-524, Des Moines, Iowa 50309, with Live it! on the attention line, or email them to informreferral@apdaiowa.org. Please note: The decision to include reader submissions is at the discretion of the editorial staff. The editorial staff reserves the right to edit or otherwise alter any material submitted. If you would like submission material returned to you, please include a stamped, self-addressed envelope.

Dear Live it! Readers,

letter from the

Live it! staff

Live it! Staff

Medical Director: Lynn Struck, M.D. Managing Editor: Crissanka Christadoss Editors: Linda Jordening and Vicki Ingham Contributing Writers: Gary Johnson and Colleen Taylor Art Director: Patrick Vaassen

Live it! Editorial Board

Lynn Struck, M.D., Medical Director Crissanka Christadoss, Coordinator, Iowa Parkinson Disease Information and Referral Bruce Carr Vicki Ingham Linda Jordening Patrick Vaassen

Request for Submissions:

The staff would like to invite words and photographs from you. Share with us photographs of you, your artwork, your words – anything that shows how you Live it! Please see submission guidelines on the bottom of page 2.

It has been a busy Spring! As a chapter we’ve visited support groups, produced a public service announcement, held our first bicycle ride for Parkinson’s, and held our 2nd annual silent auction. Also in the month of April we held the Eastern Iowa Parkinson’s Symposium in Waterloo – over 150 attendees! We are now gearing up for the annual statewide conference in West Des Moines on Friday, June 20, 2014! You don’t want to miss it. See details on page 7 on how to sign up. For our cover story this issue Deb Wityk of Redfield, Andrew Duarte of Ft. Dodge and Terry Hertges of Elk Run Heights share their story. They were diagnosed at a younger age than most people with Parkinson’s – hence the diagnosis Young-Onset Parkinson’s. More important than the diagnosis is the journey. They were diagnosed with Parkinson’s at a time in their lives that caused much uncertainty – they were raising their children and working. As Parkinson’s still has the perception as an older person’s disease, being diagnosed “younger” presents other challenges. Other articles in this issue include using an iPhone to make certain tasks easier by Gary Johnson of the University of Iowa Assistive Technology Program (page 8) and “youthing” instead of “aging”, an article by Colleen Taylor of Mason City. Interested in supporting the Iowa Chapter of the American Parkinson Disease Association? Think about becoming a member if you haven’t already (page 5 and 6). Don’t forget to sign up for the June conference, continue sharing your stories/journey with us and be well! Till next time,

The Live it! Staff contact us:

Disclaimer:

All material related to Parkinson’s disease contained in this magazine is solely for the information of the reader. It should not be used for treatment purposes, but rather for discussion with the patient’s physician. Specific articles reflect the opinion of the writer and are not necessarily the opinion of the editorial staff, the Information and Referral Center, the medical director of the Center, The Iowa Chapter of APDA or the APDA.

Iowa Parkinson Disease Information and Referral Center UnityPoint Health – Des Moines 1200 Pleasant Street E-524 , Des Moines, Iowa 50309 (877) 872-6386 | www.apdaiowa.org

Live it!

Spring 2014

Lynn K. Struck, M.D. Neurologist Physician Specialty Clinic UnityPoint Health – Des Moines

from our

medical director The Iowa Parkinson’s Disease Information and Referral Center and Live it! magazine are privileged to have board certified clinical neurologist Lynn Struck, MD, as our advisory Medical Director. Dr. Struck is on staff with UnityPoint Health Physicians, Des Moines, and is a leading expert in movement disorders in Iowa. She has focused her career on advances in treatment of her many patients with Parkinson’s disease and ongoing research to find better treatments and, ultimately, a cure.

“Wearing Off” in Parkinson’s Disease Over time, Parkinson patients will experience loss of symptomatic control. When the levodopa wears off before the next dosage, this is referred to as “wearing off.” With advancement of PD, the levodopa dose will often control symptoms for a shorter period of time. Early identification of the symptoms of wearing off is important for optimal patient medication management. Patients should discuss with their physician if they notice their medications are wearing off early. The motor symptoms noted with wearing off can include tremor, slowness, weakness, balance difficulties, stiffness and reduced dexterity. There are also several non-motor signs and symptoms that can be quite bothersome for the patient. These include abdominal discomfort, motor restlessness, anxiety, dullness of thinking, drenching sweats, facial flushing, irritability/mood changes, pain and tingling sensations. Management of wearing off is individualized for each patient. First, is the patient taking their medication on time? If not, consistently taking medication on time will often be very beneficial. If the patient is taking their medication on time then there are several options. These options include: increasing the levodopa dosing frequency/dose, adding a catechol-o-methyltransferase (COMT) inhibitor/dopamine agonist or a monoamine oxidase type B inhibitor. Your physician will discuss which of these options is most appropriate for your situation.

Statement of Copyright The entire contents of this magazine are copyrighted under United States copyright laws by the Iowa Parkinson’s Disease Information and Referral Center. All rights reserved. Written permission from the Iowa Parkinson’s Disease Information and Referral Center is required for reposting, republishing or retransmitting any material in this publication. What You Can Do Without Written Permission Articles may be reproduced only if the text of the article is reproduced in its entirety and attributed to the Iowa Parkinson’s Disease Information and Referral Center. What You Cannot Do Without Written Permission Reproduce any Iowa Parkinson’s Disease Information and Referral Center materials within any commercial publication or for any commercial purpose. Print more than a single copy for your personal use.

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chapter information

Membership Drive Become an Iowa Chapter Member, go to apdaiowa.org/become-a-member

About the r Iowa Chapte of the APDA is to ease rganization o r u o f o n o The missi r Iowans nd a cure fo fi d n a n e rd the bu se in inson’s disea rk a P y b d te c e to do impa wa. We striv Io ss ro c a s ie communit ys: llowings wa this in the fo e state groups in th rt o p p su g in • Establish ercise ’s-specific ex n so in rk a P • Funding programs ucational e annual ed re th g in id City v • Pro oines, Sioux M s e D in s m symposiu Iowa and Eastern Referral rmation and fo In n a g in • Fund e state Center for th me to for e Iowans co c la p t rs fi e n’s • Being th on Parkinso n o ti a rm fo in support and disease

MORE MEMBERSHIP INFORMATION See page 19 (the inside back cover) for more details on becoming a Chapter Member!

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Us! Follow us on F acebook, Twitte r and online: • Facebook.c om/IowaIandR • @IowaParkin son • Apdaiowa.o rg

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Become an Iowa r! e b m e M r e t Chap nual s on your an d n e p e d r te ap help Our Iowa Ch donations to d n a s e u d membership s. pter activitie wa support cha coming an Io e b f o ts fi e n e be What are th mber? Chapter me azine l Live it! mag a u n n -a ri T • wsletter l member ne • Bi-annua ersion only) (electronic v inson’s Annual Park d n e tt a to t • Discoun Conference

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chapter information

What is the APDA

sroots untry’s largest gras The APDA is the co its zation that focuses Parkinson’s organi , ch, patient services energies on resear s es ing public awaren education and rais ght APDA supports ei about the disease. a ced Research, and Centers for Advan gional Information re of k or tw ne l na natio d enters, chapters, an &R) C and Referral (IIowa Chapter of the . ort groups supp American Parkinson Disease Association 1200 Pleasant Street, E524, Des Moines, IA 50309

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(515) 241-6379 | Fax: (515) 241-6393 informreferral@apdaiowa.org Themail: e

Informatio

and Refer The Iowa P www.apdaiowa.org ral Center arkinson D isease Infor Referral Cfacebook.com/IowaIandR mation and enter is a re source for impacted bTwitter: @IowaParkinson a ll Iowans y Parkinso n’s disease. Informatio C ontact the n & Referra l Center for th e following • Request F : REE inform ational mate on Parkins rials on’s. • Get referr als to Parkin son’s specia in the state lists .

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American Parkinson Disease Association Ease the Burden

• Get referr als to supp ort groups your area. in

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While we a re unable to provide me we are able dical advic to help you e, get the info need. Medic r mation you al decision -making sh involve you ould alway r neurologis s t.

Call us at ( 877) 872-6 386 Email info rmreferral@ apdaiowa.o rg 6

Find the Cure

Annual Parkinson’s Disease Conference

Ya Gotta Move it!

Friday, June 20, 2014 – 8 a.m. to 3:45 p.m. Lutheran Church of Hope, 925 Jordan Creek Parkway , West Des Moines, Iowa 50266

Keynote Speakers

David Zid, BA, ACE, APG Co-Founder of Delay the Disease™

Kari Berit Aging and Caregiving Expert

Tami Briggs Therapeutic Harpist

Stephanie Pothoven, DO Urologist, The Iowa Clinic

Also Featuring Included in the conference are two breakout sessions that will cover a number of topics including caregiving, deep brain stimulation, nutrition, LSVT Big and Loud, Zumba Gold, Aquatic exercise, Parkinson’s Q&A, Delay the Disease, and brain exercise.

Elizabeth Stegemoller, PhD, MT-BC Neuroscientist and Music Therapist, Iowa State University

Lynn K. Struck, M.D. Neurologist Physician Specialty Clinic UnityPoint Health – Des Moines

Details Registration: Brochure will be sent in the mail and

online registration will be available at apdaiowa.org

Fees: $25 for attendee and guest; $15 for an individual. CEUs: $12 for 5.6 contact hours/.56 CEUs

Overnight Accommodations: Visit apdaiowa.org for more information or call (877) 872-6386

Interest in Volunteering?: Please call Deb Wityk, Volunteer Coordinator at (515) 577-2990.

Iowa Parkinson Disease INFORMATION AND REFERRAL

American Parkinson Disease Association

the right tools for the job

Tools

You Can Use!

By Gary Johnson, ATP - Iowa Program for Assistive Technology

Technology has finally caught up with you! Here are some ways to use Apple products, like the iPhone and the iPad, so you can look for information and connect with friends and family. SIRI is an application on Apple products that helps you perform several tasks on Apple devices from calling a loved one to searching the Internet and updating your Facebook status! Make a phone call with SIRI (phone numbers must be preprogrammed into your device): • Hold down the Home key • You will hear a beep and SIRI will ask “What can I help you with?” • You respond “Call [insert name of person you are calling]” • SIRI will respond with “Calling [person’s name]” • SIRI will ask when there are multiple #’s for the same person. Voice text with SIRI • Hold down the Home key • You will get a beep and SIRI will ask “What can I do for you?” • You will say “Text [insert name of person you are texting]” • SIRI will respond “What would you like it to say?” • Verbalize your text • SIRI will print your text and ask if you are ready to send • Check message, then you verbally respond ‘send’ or ‘cancel’.

“Home” key

Facebook post with SIRI • Hold down the Home key • SIRI will ask “What can I help you with?” • You will say “Facebook post” • SIRI will ask “What would you like to say?” • Verbalize your post • SIRI will print and tell you she updated your facebook status. Facetime with SIRI • Hold down the Home key • SIRI will ask “What can I help you with?” • You will say “Facetime [insert name of person you would like to Facetime]” • SIRI will say “Making a Facetime call to [inset person’s name]”. What else can SIRI help with? • Directions to certain addresses • Information searches on the Internet • Trivia • Set a timer Tip: Using your iPhone, iPad or other SmartPhone device – set pill or medication reminders or any other reminders using the calendar/clock application

On With Life

LSVT Program On With Life

Lee Silverman Voice Treatment (LSVT®) is an effective treatment program for those living with Parkinson’s Disease. On With Life in Ankeny, Iowa, began offering the LSVT BIG program in October, 2013, and LSVT LOUD in early 2014. What is LSVT BIG? LSVT BIG is an intensive therapy exercise program for people living with Parkinson’s disease. The program focuses on strength, movement, balance, coordination and function with carry over to everyday life activities. Each treatment focuses on the production of large amplitude (BIGGER) whole body movements. These treatments have been shown to provide the following benefits: • Improved walking (bigger steps, faster speed, decreased fall risk and improved balance) • Improved movement quality with bigger and more controlled movements to increase independence with dressing, self care, cooking and mobility. • Overall increase in quality of life What is LSVT LOUD? LSVT LOUD improves vocal loudness by stimulating the muscles of the voice box (larynx) and speech mechanism through a series of exercises. Focused on a single goal “speak in a LOUD voice” - the treatment does not train people for shouting or yelling; rather, LSVT LOUD uses loudness training to bring the voice to an improved, healthy vocal loudness with no strain. The treatment not

only simulates the motor system but also incorporates sensory awareness training to help individuals with PD recognize that their voice is too soft, convincing them that the louder voice is within normal limits, and making them comfortable with their new louder voice. These treatments have been shown to provide the following benefits: • Improved respiratory, laryngeal and articulatory function to maximize speech intelligibility. • Improvement in the common problems of disordered articulation, diminished facial expression and impaired swallowing. How is the program delivered? On With Life’s LSVT BIG is directed by LSVT certified physical and occupational therapists - Gail McGaughy, MPT, and Jess Borysiewicz, OTR/L. Our LSVT LOUD is directed by our LSVT certified speech therapist - Courtney Huber, SLP. Both BIG and LOUD are intense exercise programs and require a commitment of 16, 60-minute sessions administered over four weeks. BIG and LOUD can be administered separately or if appropriate for the person served, can be administered within the same four weeks. How do I learn more? On With Life holds quarterly educational sessions regarding our LSVT Program. Join us to learn more about the program and to see if it might be right for you or your loved one. Contact us for more information: Phone: (515) 289-9662 Fax: (515) 289-9649 Email: tmiller@onwithlife.org For more information on LSVT BIG and LOUD – visit the LSVT website at www.lsvtglobal.com

cover story

Beyond the Diagnosis

Coping with challenges and living well with young onset Parkinson’s

When Terry Hertges was diagnosed with Parkinson’s disease in 2008 at the age of 51, she was overcome by uncertainty—about her family, her job, her future. The feeling is often experienced by those who have young onset Parkinson’s (YOPD), defined medically as a diagnosis under the age of 40. However, like Terry, many people who are diagnosed over the age of 40 but are still active and healthy, with the careers, families, and future plans of a younger person, consider themselves young onset. Although the challenges that come with being diagnosed at a young age can be similar to those faced by older people, there are major differences. Many struggle to get a diagnosis in the first place due to the perception that Parkinson’s is an “older person’s” disease. According to the American Parkinson Disease Association National Young Onset Center, however, about 10 – 20 percent of those diagnosed are under the age of 50, and about half of those are diagnosed before age 40.

Terry’s daughter Mary (left) and Melissa (right) and Terry & Bob Hertges.

LiVE Terry Hertges

Deb’s five children and two nephews: (left to right) Michael, Monica, Matthew, Miranda, Joshua (nephew), Michelle and Daniel (nephew)

Deb Wityk

Deb Wityk, for instance, who was raising five children at the time of her diagnosis at age 42, struggled for four years to get an answer. She went to several neurologists and underwent testing only to be told that the tremors, stiffness, and rigidity she was experiencing were all in her head. When a doctor finally prescribed her Sinemet, the relief was so instant that it felt like a miracle, and she cried. Now almost 43, Andrew Duarte was also diagnosed after a long and involved process at the “ripe old age of 31.” He’d had a persistent twitch in his hand at varied times and frequencies since high school and a doctor could offer no solution other than to quit drinking so much—though Andrew wasn’t drinking at all. Because he was so young, Parkinson’s wasn’t even considered. More tests from a different doctor all came back negative. Finally a doctor decided to try him on Sinemet, and Andrew remembers the doctor’s face going white when Andrew told him how well it worked on his symptoms. It meant he had Parkinson’s, with two boys under five years old and his wife pregnant with a third. After being diagnosed, those with young onset Parkinson’s may not know where to turn. Often local Parkinson’s support groups are composed of older patients, and those with young onset feel like they don’t belong. Turning to research, in books and on the internet, can be a double-edged sword. Deb researched the disease on her own and came across a pamphlet written by a person with young onset Parkinson’s who recom-

Andrew with his family: wife Betsy, and sons Jake (back), Cooper (right) and Ian (front)

mended martial arts. This led her to tai chi, which she has found very therapeutic. Terry, on the other hand, opened a book on Parkinson’s and landed on the chapter about picking out a nursing home, leading her to abandon it immediately. “I wasn’t in denial, but I was confused and scared,” says Terry. “I cried a lot.” To cope, she wrote a poem called “Parkie Blues,” which includes the lines: It’s Parkinson’s, the dr said. Could be worse, could be a tumor in your head. It’s a manageable condition, just take these pills, Now head out to the desk and pay your bill. … I got the parkie blues, the parkie blues. My arm is a shakin, my leg starts to quakin Gonna put taps on my shoes. Later, Terry picked up Michael J. Fox’s book Lucky Man and felt like he was speaking to her. An online chatroom turned out to be another lifesaver. She would log on at night, often when her life seemed the darkest, and talk to people who were in her situation. This fueled her determination to start a support group for others so they wouldn’t feel as lost as she had. Crucial differences in the symptoms of those with old and young onset Parkinson’s are also apparent. Often young onset people are in the peak of health, so they don’t have other health issues to contend with. The progression of the disease is often slower, according to the National Young Onset Center, but involuntary movement is more common as a side effect of levodopa, the most commonly prescribed PD medication. Because of this, patients are frequently treated with other medications, as well as non-drug treatments such as exercise, speech therapy, occupational therapy, and counseling. The best therapy for Andrew has turned out to be returning to an old passion—cycling. Dr. Jay Alberts, a researcher at the Cleveland Clinic, has found that a person with Parkinson’s who rides a bike at a pace that is faster than his or her normal speed will experience alleviated symptoms. Mostly inactive since his diagnosis, Andrew began relearning to cycle using a TerraTrike, a reclining bicycle. He joined his boys as they were first learning to ride. “For me, it reversed the progression of the disease. In 2008, five or six years after my diagnosis, I was able to stop using my cane.” Andrew subsequently rode in RAGBRAI and plans to do so again. He is even back on a two-wheel bike. “When I’m riding consistently, it is difficult to tell that I have Parkinson’s.”

For Deb, keeping physically active through tai chi is crucial. “I just keep pushing myself further, working through the fatigue,” says Deb. She also does voice exercises to counteract the effects Parkinson’s can have on speech, such as fading volume, vocal clarity issues, and reduced or increased pace of speaking. Equally important is mental health. Depression or anxiety and Parkinson’s can go hand in hand, and Terry cautions those with young onset to be aware of the possibility. “If you do notice Andrew Duarte dipping his bike in the river at RAGRAI dramatic changes in mood, tell your doctor,” she urges. She sees a therapist, who has helped her understand that she needs to avoid depressed friends, focusing on her own mental health rather than trying to fix others. One of the most pressing questions when people are first diagnosed with young onset is whether they will be able to continue to work. Most people do, though for how long can vary widely. Deb had finished a nursing program prior to her diagnosis, but afterwards she went to massage school and worked as a massage therapist for 15 years. “It was part of my own therapy and kept me strong,” she says. Though she no longer works as a therapist, she does other, equally important and fulfilling work—leading a support group that meets at the Healthy Living Y in Clive every month. Terry had finished college and started as a nurse’s aide at a hospital. After finishing college she moved up through the ranks during her 34 years there until she was supervisor of three departments. She quit her job about two years after her diagnosis because she was having trouble with her memory. After attending one work meeting, she reviewed her notes. She could not remember what the notes related to – the only Live it!

Spring 2014

part of the notes that made sense was a reminder to herself to “Stay awake!” She decided the stress was too much, and after ending her career she felt temporarily adrift. Her job as a caretaker of others had been her identity. “It turned out to be the best thing I could have done,” said Terry. “I wanted to enjoy life while I could.” She used her connections at the hospital to convince the public relations department to help her spread the word about Parkinson’s. Terry was interviewed in the newspaper and on TV, helping change people’s perception about the face of Parkinson’s. She also started a support group, which has since grown from about 6 people to 50. It started as group specifically targeted towards YOPD, but they dropped the label when a 90-year-old kept attending. Andrew continues to work as a quality manager at Josephson Manufacturing Company in Fort Dodge. “Parkinson’s affects everything I do, but it doesn’t stop me,” he says. Also an artist, Andrew has drawn cartoons and doodles since he was a little boy, and has had a camera in his hand since he was five. Since the diagnosis, he has continued doing photography and drawing, and he finds PD can have unexpected benefits. He does his drawing at night after his medication wears off, using his shaking to help shade the drawings. It isn’t a quick process. It took him a year to do a portrait of his wife’s grandfather, who was diagnosed with cancer shortly before the picture Andrew used as a reference was taken. Yet the result was moving—his wife’s great aunt remarked that his drawing captured more emotion than the photograph itself. People say Parkinson’s doesn’t have to define you, but Andrew disagrees. “It does define you, but you have a choice to make that a positive or negative thing. I think I am better for having it. Is it easy? No way. But it is not a curse.” Nevertheless, Andrew acknowledges that when a person has Parkinson’s, he or she is not the only one who has it— friends and family have it too. Deb’s youngest son, who was six when she was diagnosed, has never known her as anything but “Shakey Mom.” Though she has tried to protect all her children from what it means to have the disease, she believes having a mother with Parkinson’s has made them more aware of the uncertainty in life and that things can go wrong at any time. It has also made her children, especially her youngest son, more empathetic. This is also the case with Terry’s two daughters, who were 27 and 24 when she was diagnosed. Her elder daughter has noticed that her mother’s diagnosis has made her more aware of people with disabilities, and has learned to live in the moment and appreciate her own good health. She has 12

felt a shift in their relationship, to the point where she almost feels like the mother. Terry’s husband has also stuck by her, and she credits her whole family with being wonderful. It can be difficult for family and friends to know how to react to a young onset diagnosis, so Terry sent out a letter with their regular Christmas card explaining Parkinson’s and her situation. Many let her know how grateful they were for that. Without the support of his family, Andrew acknowledges, he would never have made it this far. His wife and sons, now 15, 12, and 10, “are my rock, my support and my life. They are the reason I get up in the morning and fight as hard as I do. My wife inspires me to do the very best I can all the time.” His family lives by the principles of humor, humility, and honesty. The first of these—humor—can often be the most effective medicine. Terry says keeping a sense of humor is key, and has even tried stand-up comedy, something she never could have imagined herself trying before. One of her jokes: “What do two people with Parkinson’s do when they meet? Shake.” She has dressed as a martini—shaken, not stirred—for Halloween, and proudly wears shirts declaring “Parkinson’s sucks” and “Will work for dopamine.” Humor, family, art, exercise, support from others who know what they are going through … the ways people live their lives well with young onset Parkinson’s are many. “Keep on doing what you always wanted to do,” says Deb. “As long as you can do it, do it!”

Young Onset

Info

rmation The American Parkinson Disea se Association’s Onset Center in Young Winfield, Illino is is one of a kin the United Stat d in es. The Center p rimarily focuse information an s on d issues that are important to th diagnosed at a ose younger age (m edian age for bei diagnosed with ng Parkinson’s is 62 ). The Center has great informatio n, stories and ev Person to Perso en a n connect progr am! Call the APDA Young Onset C enter at (877) 22 or email them at 3-3801 apda@youngpar kinsons.org. Se at: www.youngp e more arkinsons.org

UPDATE erwent Since this article was written, Terry und doing Deep Brain Stimulation surgery and is ures of well. Visit our Facebook page to see pict Terry through her DBS journey.

feature article

“Youthing”

Colleen Taylor Mason City, Iowa

Parkinsons “Warrior” and Advocate

instead of Aging

By Colleen Taylor Which way are you headed? You have a choice, you know! Your attitudes and actions lead the way, creating the results you desire. Here are two of the many paths to choose from: “Youthing” or Aging, regardless of your age. Which direction feels like your life today? Do you know yourself well enough to realize the truth? Please, think only of yourself for the next few minutes. It’s okay and safe to do so. Signs of Aging • Believing you do not have choices, you’re dumb and not creative. You’re “stuck” in the past. You have to be like other people were or are. • You have stopped cleaning and organizing your belongings, your personal grooming and nutritious eating, going to the doctors, therapists and socializing, daily exercise, walking inside and out just for fun, sleeping through the nights and are tired and “grumpy” when awake. • Sitting around in your recliner; expecting others to wait on you. Watching lots of negative/“crazy” television programming. Thinking and talking mostly about your past. Finding fault with yourself and others and imagining living in a nursing home. • Wearing yourself out giving to others. Thinking you never have enough time. Feeling you can’t do anything about your circumstances. Waiting for a “magic pill” to cure everything. • You keep telling yourself and others, “I can’t do it.” Surrounding yourself with unhappy people. Worrying about your health and money (by the way, worry is the biggest waste of time there is). The results are PAIN, UNHAPPINESS and LONELINESS.

Ideas for Youthing • Create quality, uplifting time just for you. Create a support group for your most worrisome illness. Shake more hands and give more hugs. Smile more (it is God’s gift to you to give away). Listen to your creative ideas and act upon them. “Play” at daily exercise, breathe in deeply when outdoors and believe “the more you exercise, the more you are ENERGIZED.” (It’s true!) • See some good in everything and everyone. Learn something new every day. Practice standing on your own two feet. Know it’s safe to try. Plan and throw a party. Expect wonderful surprises and more friends. Give your joy and wisdom away to the world and start more sentences with “I”. • Get your health questions answered for more peace of mind. Make a list of what you appreciate about yourself. Practice printing, writing, reading and talking. Address your most fearful concerns with professionals. • Write “love notes” to people you love. Follow your heart. “Go with the flow.” Develop an attitude of gratitude. Practice patience and the “gift” of generosity. Live in your now. Be kind and gentle to yourself so you can pass it on to others. • Sit alone in silence. Listen to your “higher power” (some call God). Begin to believe you are a magnificent human being; you can “grow” on the inside and today is another great day to be alive!! The results are more PLEASURE, SAFETY and ENERGY! So, what do you think? Are you capable and willing to choose “youthing”? When you change there is a greater chance others will also. Make a difference, dear heart. The world needs your gifts, talents and presence. Why not youthing instead of aging or living instead of dying? Living is easier and a lot more fun. I double dare you to write (or print) to me so I can learn from you and pass it on…For we are all the research. 13

Past Events

Shaky Tracks bicycle ride for Parkinson’s held on April 26 in Des Moines.

City of Des Moines Mayor proclaims April as Parkinson’s Awareness Month. Group exercise at the Eastern Iowa Symposium held April 11.

Parkinson’s Awareness Night at the Iowa Wild hockey game.

Newspaper clipping from Atlantic, Iowa, proclaiming April as Parkinson’s Awareness Month.

Attendees at “Shaken, Not Stirred” charity auction on April 25.

Exercise groups

Delay the Disease Classes

Atlantic - Heritage House, free. Contact Jon Jordan at

(712) 243-1850 or JJordan@wesleylife.org for information.

Carroll - Every Thursday at 11 a.m. at St. Anthony’s Hospital

in Carroll. Contact Tabetha Ernster at (712) 792-3581 or Melissa Schultes at (712) 794-5815.

Iowa City - 28 South Linn Street, for more information or questions please contact instructor Kris Cameron (319) 361-7673 or email renuyourlife@yahoo.com

Muscatine - Muscatine Community YMCA, contact Anthony Krumbholz at (319)981-3321.

South Sioux City, Nebraska - Norm Waitt Sr. YMCA in

Cedar Rapids - Stonebridge Church, for more information

South Sioux City, payment required, contact Jacque Perez, Wellness Programs Coordinator, at jperez@nwsymca.org or (402) 404-8439.

Clive - YMCA Healthy Living Center, payment required, call

Waterloo - Covenant Wellness Center. Registration is required. Contact Timi Brown, Med-Fit Facilitator, Wheaton Franciscan Healthcare- Iowa, at (319) 272-1755 for more information.

or questions please contact instructor Kris Cameron (319) 361-7673 or email renuyourlife@yahoo.com (515) 226-9622 for more information.

Des Moines - Wesley Acres, free, every Wednesday at

1 p.m., pre-registration is required, call (515) 271-6500 for more information.

Dike - Contact Agape Therapy for more information at (319) 277-3166 or www.agapetherapy.com

West Burlington - Great River Medical Center, Hawkeye

Room, 12:30 p.m. every Thursday, instructor Matt Kelle. Call the Great River Medical Center High Performance Center (319) 768-4112 for more information.

games

art

Deb Wityk (right) and Carol Wise

Brain

ArtAbility

games

Concentration: Lay out a deck of playing cards facedown on a table. Turning over two cards at a time, try to find matching pairs. If the two you turn over don’t match, return them to the table facedown. If you make a match, remove the cards. Obviously, at first you won’t make many pairs, but trying to remember where cards are located will help you clear the table. (If you want to start out by making the game easier, use only half the deck, leaving one pair of each number and face card.) Use a stopwatch and see how long it takes to find all of the pairs.

After Terry Hertges attended an open mic night at a local bar one night with a girlfriend, she was hooked to the idea of developing her own stand-up act.

Name it: Using scrap paper, write down as many types of animals as you can think of in 1 minute. How did you do? Did you remember albatross and zebra? Now try this exercise again, only this time with types of fruit. When you’re done, try the exercise one more time, choosing your own category—car models, perhaps, or dog breeds.

Terry makes it a point to introduce herself as someone who has Parkinson’s, which is a good segue into her Parkinson’s material:

Triangles: How many triangles you can find in the picture at left?

Color: Recapture the joy of pure creativity. When was the last time you had some fun with crayons—with or without a coloring book? Get a few sheets of blank paper and start coloring. You may be surprised by what you come up with.

“I never thought I was that funny,” says Terry. “But I knew that I could be up there.” She never consciously thought about performing stand-up comedy. To date she’s performed stand-up three times at the Jameson’s Bar in Waterloo Open Mic Night on Wednesday nights. But it’s more like a sit down stand-up routine – Terry feels more comfortable sitting down when she performs. “A sit-down, stand-up comedy act –like a Catholic wedding!” says Terry Terry felt great after her first time performing. “I was proud of myself. While I do a lot of work with the support group in Waterloo [as support group leader], doing stand-up was a different kind of support group. It’s a different type of validation. Also it’s a way to educate people on Parkinson’s and what it’s all about.”

“What do two people with Parkinson’s do when the meet? They shake.” “There are some advantages to Parkinson’s – you get good parking spots. You can blame everything on it!” She also includes jokes from her previous job as a sleep lab technician, which tend to provide some colorful stories for her act. “The sleep tech jokes are more sexual in nature, but they’re all true!” Being on stage for Terry means she can poke fun at herself and make people laugh. She said humor is always a great way to make people more comfortable, especially when it comes to people who may not be familiar with Parkinson’s disease. She’s performed as a martini glass in her second time at stand-up (it was Halloween). Once she forgot a joke in the middle of her act. After she finished her act, she went the bathroom and then remembered what she was going to say. Luckily, she was the last act and the Open mic attendees were still there. She came out of the bathroom and declared “I remembered!” and proceeded to go on stage and tell the joke. She also read a song she wrote called the Parkie Blues. “I definitely have a lot of life experiences that lend to my stand-up act,” says Terry. She encourages anyone who is interested in standup to try it out. “And if you feel more comfortable sitting down – that’s fine, too.” Live it!

Spring 2014

Triangles answer: 13 (combine smaller triangles to make larger ones)

donors/acknowledgements

donors

In Memory:

December 2013 – February 2014

Many companies and corporations will match your taxdeductible gift and double or triple the amount contributed to continue the APDA mission “To ease the burden and find a cure.” Gifts can be in the memory of a loved one, friend or to celebrate a special occasion. A card is sent to the designated person telling them of your generosity and thoughtfulness. Please send your donations to: • Iowa Chapter of the American Parkinson Disease Association, Inc. PO Box 507, Waukee, IA 50263 www.apdaiowa.org Iowa Chapter of the APDA Co-Presidents: Gina Chaves and John Krumbholz Directors: Rolando Chaves, Ervin Fopma, Denise Harlan, Becky Holmes, Rich Mills, David McNeill, LaDona Molander and Jen Voorhees Past Co-Presidents: Jeff Molander and Sabrina Moe Treasurer: Gayle Fopma • American Parkinson Disease Association, Inc. - National Office, 135 Parkinson Avenue, Staten Island, NY 10305, (800) 223-2732, www.apdaparkinson.org

acknowledgements

In Memory of Carol Arnold Donor Name: Mark and Pearl Neil Fred and Davie Hutton Michael and Lorna Miller Raymond and Margaret Vittetoe Charles and Mary Wasko Larry and Sherrill Kleinman Loretta Brcka Jack and Sue Kirk David and Susan Delaney William and Marcia Venables Catherine Breed William and Karen Reece James and Lyn Williams Jeanne Grim Thomas and Shirley Curray Mrs. Albert E. Burgason Robert and Bonnie Prose In Memory of Bob Barry Donor Name: Ken and Charlotte Neeld In Memory of Velma Baughman Donor Name: Veryl and Kate Wickett In Memory of Alma A Carlson Donor Name: Kurtis L Carlson In Memory of Elam Fullmer Donor Name: Raymond and Jill Hyson

The Iowa Parkinson Disease Information and Referral Center is grant funded by American Parkinson Disease Association.

In Memory of Ralph Gaede Donor Name: Rosanne Altenhofen In Memory of Russ Guthart Donor Name: Alliance Health Care First Security Dirk and Nanette Winkel In Memory of Marie Hammond Donor Name: Beverly Norager

Corporate Donations: Nationwide United Way Campaign United Way of Central Iowa Wellmark Foundation 16

In Memory of Robert L. Hammond Donor Name: Bruce and Bonnie Ankeny Wells Fargo Bank Employee Fund John R Keister Michael and Mary Ann Jakobe Roger and LaDonna Dutton Neil and Susan Eckles Katherine Doll Family Burnell and Patricia Haven George and Nancy Perry John and Linda Sullivan William and Bonnie Ambrose Robert L Hammond, Jr Lois Powers Donald Charlson Mrs. Robert l Hammond, Sr Bruce and Barbara Halgren Lavonne Crim Kathleen Rose Todd and Mary O’Brien Robert and Mary Jo Pomerantz Stephen and Kim Stroud G. Thomas and Molly Sullivan In Memory of Mary Jane Haverly Donor Name: Paul Haverly In Memory of Darrell Keith Klaver Donor Name: John and Mary Tabor Lockheed Martin Communications Lockheed Martin Missile and Fire Control

In Memory of Thomas Dale Krumboltz Donor Name: Mark Swanson Donna Wheeler Jerry and Ann Sirdoreus Karen Krumboltz Richard and Jan Reever Roger and Terri Channel LeRoy and Phyllis Robinson In Memory of Mike Murrane Donor Name: Jeff and LaDona Molander In Memory of Glen Osbourne Donor Name: Wayne and Leah Wagner Lyle and Janice Gibson Richard and Arlet Anderson John and Rosalind Lohmann Patricia A. Weld John and Joyce Miltenberger William G. Osbourne Memorial Donald and Virginia Beck Timothy and Leigh Dawson Nola Nealey In Memory of Dave Pingel Donor Name: Jeff and LaDona Molander In Memory of Bert Pruin Donor Name: Edwin and Inez McCarville

Upcoming Events

In Memory of Shirley Schamerhorn Donor Name: Richard Schamerhorn In Memory of Leona Sorenson Donor Name: Patty Tucker In Memory of Michael Trimble Donor Name: Clifford and Carolyn Gibson Linda Gayle Trimble Norma J Vanderpool Katheryn Waser In Memory of Daniel Welsh Donor Name: Arnold and Kay Gunderson In Memory of Bob White Donor Name: Richard and Sharon Montgomery

Donations:

John and Mary Crowley Constance Greig Russell and Nola Guthart Maurice Combined Appeal-Maurice Women’s Club Francis and Audrey Murphy Anzonetta Nichols Gordan and Virginia Piper Mary A Ritchie Robert and Mary Ross Leonard and Carleen Tipping Richard Schamerhorn Brooklyn Bear Creek Community Fund

For more information, visit apdaiowa.org

June 3 – Clear Lake, Parkinson’s Educational Event. Presented by Dr. Alireza Yeramadi and sponsored by Teva Pharmaceuticals. To register call (877) 872-6386 or email informreferral@apdaiowa.org June 20 – Annual Parkinson’s Disease Conference “Ya Gotta Move It!” June 28 – Dubuque, Shaky Tracks Bicycle Ride for Parkinson’s July 20 to 26 – The Iowa Chapter will be on RAGBRAI this year. We have support groups in Mason City, Waverly and Independence, we look forward to seeing you! August 23 – Amana Colonies, Eastern Iowa Golf Classic August 23 – Story City, Shake Rattle & Roll Motorcycle Ride for Parkinson’s October 25 – NW Iowa Symposium at the Hilton Garden in Sioux City, IA. Live it!

Spring 2014

17 15 20

resources

links

and other resources

8 Web Links

Here are a few helpful websites. See a more complete list, including information on clinical trials, prescription assistance, catalogs for adaptive equipment and clothing, and more at www.apdaiowa.org.

Parkinson’s Disease - Iowa Statewide Resources

Caregiving Information ......................................................................................www.iowafamilycaregiver.org Assistive Technology and possible funding sources........................................www.iowacompass.org Iowa Prescription Drug Corporation (prescription aid)................................. www.iowapdc.org Easter Seals Iowa Assistive Technology Center................................................ www.eastersealsia.org

Parkinson’s Disease - General

American Parkinson’s Disease Association ......................................................www.apdaparkinson.org American Parkinson’s Disease Assn, Iowa Chapter ........................................www.apdaiowa.org American Parkinson Disease Young Onset Center ........................................www.youngparkinsons.org Parkinson’s Action Network ...............................................................................www.parkinsonsaction.org American Academy of Neurology .....................................................................www.aan.com The Movement Disorder Society .......................................................................www.movementdisorders.org Living Well with Parkinson’s Disease ................................................................www.pdplan4life.com National Institutes of Health: Parkinson’s Disease ..........................................nihseniorhealth.gov

Caregivers

National Family Caregivers Association...........................................................www.nfcacares.org Iowa State University Extension Family Caregiving .......................................www.extension.org/family+caregiving Coping with Caregiving ......................www.extension.purdue.edu/cfs/topics/hd/resources/CopingCaregiving.pdf

Listserves (online discussion groups)

Parkinson’s Disease Blog Network ....................................................................www.parkinsonsblognetwork.com Parkinson’s Information Exchange Network Online ........................................... www.parkinsons-information-exchange-network-online.com

Coat The sign for “coat” is made by forming both hands into the letter “A.” (Not an “S.”) Place both hands near your shoulders. Then move both hands downward and inward as if putting on a coat.

support groups A special Thank You to all support group facilitators and members for all they do in spreading awareness across Iowa. Thank you for all you do!

support groups Algona/Kossuth County Donna Mae Walker (515) 341-3440 Ames/Story County Sue Trevillyan, setrevill@hotmail.com (515) 233-2089 Atlantic/Cass County Jon Jordan, JJordan@wesleylife.org (712) 243-1850 Carroll/Carroll County Melissa Schultes mschultes@stanthonyhospital.org (712) 794-5815 Cedar Rapids/Linn County St. Luke’s Hospital Resource Center Jen Jenatscheck Jennifer.Jenatscheck@unitypoint.org (319)369-7331 Cedar Rapids/Linn County John Krumbholz krummy68@gmail.com (319) 350-7482 Centerville/Appanose County Katy Paxton kpaxton@mercydesmoines.org (641) 437-3432 Charles City/Floyd County Carol Quade, carol@fiai.net (641) 228-5053 Council Bluffs/Pottawattamie County Joyce Adams jadams@foxrunassisted.com Creston/Union County Myra & Chuck chuck.spindlerii@gmail.com (641) 344-6629

Davenport/Scott County Eileen Benson jbenson979@aol.com (563) 332-6497 Decorah/Winneshiek County Linda Klimesh klimeshl@winmedical.org (563) 387-3146 Des Moines/Polk County Valerie Stickel-Diehl vstickel-diehl@mercydesmoines.org (515) 358-0002 Dubuque/Dubuque County Gerry Osterhaus gerryosty@mchsi.com (563) 582-7313 Dyersville/Dubuque County Catherine Tegeler spikesina123@yahoo.com (563) 875-7029 Estherville/Emmet County Eric Erikson erice@seasonscenter.org (712) 580-4363 Fontanelle/Adair County Carol Lundy (641) 743-2971 Fort Dodge/Webster County Andrew Duarte aduarte@jmcmfg.net (515) 570-0360 Independence/Buchanan County Betty Orr jorrb@indytel.com (319) 938-2825

Membership Application/Renewel or visit www.apdaiowa.org Complete this form, detach and mail with a check to: Iowa Chapter of the APDA PO Box 507 Waukee, IA 50263

o Mr. o Mrs. o Ms.

Indianola/Warren County Jan Pack jpack@good-sam.com (515) 962-2540 Iowa City/Johnson County Judi Gust RobertMcCown@msn.com (319) 351-5248 Lenox/Adam & Taylor County Melissa Kennan Life@vintageparkapts.com (641) 333-2233 Marshalltown/Marshall County Dennis Eige (641) 753-8463 Mason City/Cerro Gordo County Janelle Nevermann (641) 424-4277 Muscatine/Muscatine County Wayne & Pat Corriell pat.corriell@gmail.com (563) 649-2285 John & Karen Schaub jschaub@machlink.com (563) 263-1866 Newton/Jasper County Eloise Prater jeprater@iowatelecom.net (641) 791-1018 Parkersburg/Butler County Jennifer Wolff jdwot01@hotmail.com (319) 290-9402 Pella/Marion County Natasha Nikkel nnikkel@wesleylife.org (641) 621-0316 Sioux Center/Sioux County Glenda Vanlaren Glenda.VanLaren@schospital.org (712) 722-8256

Sioux City/Woodbury County Jack Sherrman, jespas@juno.com (712) 277-9337 Spencer/Clay County Betty Groen kbgroen@smunet.net (712) 262-3653 Storm Lake/Buena Vista County Bonnie Hunter bjhunter6@mediacombb.net (712) 732-3383 Vinton/Benton County Stacey Hodges (319) 472-6372 Washington/Washington County Amy Kleese Amy_Kleese3@hotmail.com (319) 653-5473 Waterloo/Black Hawk County Terry Hertges Beno08@aol.com (319) 235-7118 Waverly/Bremer County Jennifer Wolff jdwot01@hotmail.com (319) 290-9402 West Burlington/Des Moines Co. Tim Zimmerman tzimmerman@lisco.com (319) 753-05550 West Des Moines/Polk County Mary Adkins, bjamla@aol.com (515) 480-4090 Trenton, MO Gloria Koon, (660) 485-6558

A membership includes tri-annual Live it! magazine, bi-annual member newsletter (electronic version only) and discount to attend Annual Parkinson’s Conference. (Please print)

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Please check one of the following: o Diagnosed o Professional o Family Member q Check here if this is a change of address

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American Parkinson Disease Association Iowa Parkinson Disease Information and Referral Center UnityPoint Health â&#x20AC;&#x201C; Des Moines 1200 Pleasant Street, E524 Des Moines, IA 50309

Thank you

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