Live It! Summer 2012 by Iowa Chapter of the American Parkinson Disease Association

volume 3 w issue 3 summer 2012

LiveIt! is a publication of the Iowa Parkinsonâ&#x20AC;&#x2122;s Disease Information and Referral Center

A Resource for Iowans with Parkinsonâ&#x20AC;&#x2122;s Disease and those who care for them.

The Adventurous Life

Jerry Kemperman

! 5

table of

contents

3 3 4 5

l l l l

From the Staff Contact Us

From Our Medical Director The Right Tools for the Job

Memory Aids for Medications

Ask the Experts

6 - Anxiety 7 - Milestones in the Fight Against PD 8 - Traveling with PD

10 l 11 l 12 l

Chapter Information In the Community/Past Events Cover Story

The Adventurous Life

14 15 16 17 18

l l l l l

20 22 23

Sudoku and Artability Support Groups Upcoming Events, Training and Education Kudos Kudos

O’Donnell and Friends Open

Donors/Acknowledgements l Links and Resources l Sign Language l

Live it!

online

Table of Contents

Live it! is also available online! Visit www.apdaiowa.com for an electronic copy.

18 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 Iowa Health – Des Moines, 1200 Pleasant St. E-524, Des Moines, Iowa 50309, with Live it! on the attention line, or email them to christcs2@ihs.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

As we move into fall, it is a great time to reminisce about the spring and summer. We hope you had a chance to experience all the sights and sounds of the warmer seasons before we are quickly ushered into winter. In this issue we celebrate journeys. Be sure to read our cover story about Jerry Kemperman of Boone, Iowa. He has been an avid fisherman, outdoorsman and globetrotter his whole life, finding adventure wherever he is. See page 12 for his story and pictures with his hunting companion, Rufus. For some tips on how to prepare for upcoming journeys and trips, see page 8. Spring was an exciting time with Parkinson’s Awareness Month and the June conference. Dr. Emily Drabant, a keynote speaker from the conference, writes an article about the Parkinson’s Research Project conducted by personal genetics company 23andMe (Page 7). Neuropsychologist Dr. Derek Campbell, who also spoke at the conference, writes a piece about anxiety (page 6). Additionally, a special thank you to the O’Donnell Family of Des Moines (see page 18). They raised $80,000 for the Iowa Chapter. We deeply appreciate their commitment to charity and giving so much of their time and effort toward our cause. You’ve probably heard that the point of a journey is not the destination, but the journey itself. Wherever you happen to go, be open to possibilities and enjoy each moment at a time.

Live it! Staff

Till next time!

Live it! Editorial Board

The Live it! Staff

Medical Director: Lynn Struck, M.D. Editors: Crissanka Christadoss Art Director: Patrick Vaassen

Lynn Struck, M.D., Medical Director Crissanka Christadoss, Coordinator, Iowa Parkinson Disease Information and Referral Lauren Asp 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.

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 Iowa Health – Des Moines 1200 Pleasant Street E-524 , Des Moines, Iowa 50309 (877) 872-6386 www.apdaiowa.org

Live it!

Summer 2012

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

from our

medical director The Iowa Parkinson’s Disease Information and Referral Center and LiveIt! magazine are privileged to have board certified clinical neurologist Lynn Struck, MD as our advisory Medical Director. Dr. Struck is on staff with Iowa 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.

Skin Cancer and Parkinson’s Disease I have received a number of questions from patients regarding skin cancer and Parkinson’s disease. Though I have addressed this in the past, I think it is important that we examine this issue again. In 1972, there was a concern raised about an increased risk of skin cancer in Parkinson’s patients. Since then, many other cases have been reported. There have been multiple studies looking at this issue. Unfortunately, much of the information was based on a limited number of anecdotal reports. Also, the data was limited in terms of patient characteristics such as correlation with sun exposure, family history, or fair complexion. If you try to summarize all the data available regarding whether there is an association between Parkinson’s disease and skin cancer, there does seem to be an increased risk of melanoma in Parkinson’s patients compared with the general population. Also, there may be increased risk of non-melanoma skin cancers in Parkinson’s patients.

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.

The theory linking levodopa and melanoma is based on the shared biochemical pathways between the synthesis of both dopamine and melanin. The association between levodopa and melanoma is therefore based on biological plausibility, but the data is too limited to determine causality. There is also insufficient data to conclude an association between rasagiline, selegiline, ropinirole, pramipexole, or other antiparkinsonian drugs and melanoma or other skin cancers. It is important in research that we try to understand any risk factors that are associated with melanoma and other non-melanoma cancers and Parkinson’s disease. Many Parkinson’s trials have patients evaluated by a dermatologist during the trial because of these concerns. I recommend an annual dermatology evaluation for all my Parkinson patients. If you have concerns, you should address them with your neurologist.

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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the right tools for the job

Memory Aids for

medications

Contributed by Jane Gay, Director of the Iowa Program for Assistive Technology Iowa Community Access Project, Center for Disabilities and Development Do you have trouble keeping track of all your medications? There are many types of devices to help you keep track, from a single dose up to a month’s worth of pills. The list below includes just a few examples you may not have seen before. • The Take and Slide has a blue tab that is moved when medicine is taken. • The MedCenter and Daily Organizer with Reminder attaches to your purse or belt loop. The daily pack is available with or without a 5-alarm watch that makes remembering meds an easier part of your routine. • The e-pill Dose-Alert Pill Reminder sticks to the top of a medicine bottle cap. The simple to use visible timer counts upward from the time it is activated until it reaches its alarm set point, when a timer will beep 20 times. After the medication is taken, simply press the Start/Reset button to start the e-pill timer again.

• The 7-Alarm Vibrating Pillbox & Daily Organizer can remind you to take up to seven meds each day with vibrating and sound alarms. • There are many devices and services like the e-pill MedSmart MD2 PLUS Monitored Automatic Pill Dispenser that have specialized reminders. This system (with no fees) will notify a remote caregiver if meds have been missed by phone, e-mail or text message. • Yes, “there’s an App for that.” Rxmind Me Prescription App reminds you when to take them and allows you to check off when you have. There are over a half dozen options for reminders, including hourly and weekly. Optimized for: iPod Touch, iPad (iOS4.o or later). Price: FREE. Learn more: www.rxmind.me

7-Alarm Vibrating Pillbox

e-pill MedSmart MD2 PLUS

For more information about the types of pill trackers that might help you specifically, call Iowa COMPASS at (800) 779-2001. Iowa COMPASS does not sell these devices; they will provide information about your options.

Rxmind Me Prescription App

The Iowa Program for Assistive Technology (IPAT) supports Iowa Compass, a free service for all Iowans, to provide information on types of available Assistive Technology devices and possible funding sources. Contact them by phone at (800) 779-2001 or log on to www.iowacompass.org Take and Slide

MedCenter and Daily Organizer

e-pill Dose-Alert Pill Reminder

Live it!

Summer 2012

ask the experts

anxiety By Derek Campbell, PhD, Clinical Neuropsychologist Campbell Neuropsychology Services, P.C.

Derek Campbell, PhD

Anxiety is a normal and useful emotional response. This reaction is designed to internally warn of potentially threatening circumstances and motivate us to take steps to protect ourselves. Common signs of anxiety include a sense of restlessness, nervousness, sleep difficulty, increased heartbeat, excessive sweating, and trouble breathing. Mild anxiety enhances performance in challenging circumstances by sharpening mental focus. However, high levels of this reaction reduce efficiency and quality of life.

Disorders related to excessive anxiety have been reported to occur in 30-40% of individuals suffering from Parkinson’s disease at some point over the course of the illness. These emotional struggles occur more often in patients with Parkinson’s compared to those suffering from other chronic diseases, such as multiple sclerosis, type I diabetes, and rheumatoid arthritis. This difference is theorized to reflect the psychosocial effects of Parkinson’s disease in combination with the impact of damaged brain pathways. In reference to social aspects, physical changes such as tremor and gait instability associated with Parkinson’s disease can lead to embarrassment and a lack of self-confidence. From a biological perspective, research suggests that anxiety is also a result of deterioration in brain regions that produce or use neurotransmitters such as dopamine and serotonin, which modulate emotional responses. In particular support of a direct biological effect of the disease, a subset of individuals with Parkinson’s report suffering from prominent anxiety preceding the onset of movement difficulties. There is evidence that suggests a link between random major fluctuations in movement symptoms and anxiety disorders, which raises suspicion that the unpredictability of movement difficulties also contributes to generalized uneasiness. Difficulties related to anxiety often respond to treatment and numerous approaches are available. These include counseling, medication, and relaxation techniques. A combination of these interventions often is the most beneficial. If anxiety or other mood difficulties are suspected, discuss symptoms with your primary care physician or neurologist to arrange for a comprehensive evaluation that will guide appropriate treatment.

ask the experts

milestones in the fight

against Parkinson’s Disease

By Emily Drabant, PhD Research Development Manager, 23andMe 2011 was an exciting year for research on Parkinson’s disease. In March, scientists from Stanford were able to re-create features of the disease in a petri dish using cells from a Parkinson’s patient. In June 2011, 23andMe published a paper in PLoS Genetics detailing our discovery of two novel genetic associations with Emily Drabant, PhD Parkinson’s. Now, we’ve also identified a genetic factor in a gene called SGK1 that may protect against the disease.

Research Institute to study the connection between SGK1 and LRRK2 further to see if the finding could lead to a potential new treatment for Parkinson’s disease. Said Todd Sherer, CEO of MJFF, “The SGK1 discovery, while still early-stage, is a promising outcome of this unique research platform… We are eager to see the results of the continued investigation of SGK1 by Scripps.”

This preliminary finding comes as a result of our innovative research and recruitment platform, which in just a few years has assembled the largest single genotyped group of Parkinson’s patients in the world. Of the 125,000 individuals in 23andMe’s database, there are more than 6,000 with Parkinson’s disease. Even more astonishing is the fact that we can collect large cohorts of people who share similar genetics, regardless of their health status. Most studies can only recruit individuals who have a disease, but our database allowed us to identify the world’s largest cohort of people carrying the G2019S variant in the LRRK2 gene. Roughly 1 in 10,000 people have this variant, which is associated with a 50% lifetime risk of Parkinson’s compared to about 1% in the general population. But within our database there are many people with this high risk variant who are at an age when they should have developed the disease but have not. By comparing these people to those with the variant who did develop Parkinson’s, we were able to discover the potentially protective nature of SGK1. With generous support from The Michael J. Fox Foundation (MJFF), we’ve partnered with The Scripps

Of course, none of this would be possible without our amazing research participants. Although we are well on our way to 10,000, we still need the support of thousands more to reach our goal. If you or someone you know has Parkinson’s disease, we encourage you to join the community. Participating is easy — just visit http://www.23andMe.com/pd to get involved! This most recent finding is just the tip of the iceberg of what is possible when individuals come together to contribute to research. We continue to be inspired, not just by the progress we’re making, but by people who are fighting every day with grace and courage and working towards making the world better for people with Parkinson’s.

23andMe is a personal genetics company based in Mountain View, California. They provide rapid DNA testing through their genome test kits in which consumers provide a saliva sample to be analyzed. The company also provides testing for research initiatives to find genetic associations in specific diseases. Live it!

Summer 2012

ask the experts

Traveling

with Parkinson’s Disease

By Joan Brandl, RN Coordinator for the APDA Information and Referral Center in Minnesota This article was originally published in the Spring 2012 issue of the Minnesota Messenger For many people, one of the great joys in life is traveling to new places. Travel can enrich your life by lifting your heart and inspiring your imagination. Meeting new people can create new memories and stories and increase your knowledge and understanding of the world and yourself.

Planning is Key

Many people wait to travel until the “retirement years,” which may coincide with the onset of Parkinson’s. If that is the case for you, I would encourage you not to give up your dreams. Having early-stage or mid-stage Parkinson’s disease or any other chronic condition does not eliminate the possibility and opportunity for travel. It may just make it a bit more challenging.

• Set realistic expectations with your traveling companion. Communicate your needs and expectations.

Travel does not necessarily have to be an extensive vacation in Europe. Adjust your travel to whatever degree of endurance and mobility that you have. Travel may consist of a short trip to a state park, an overnight visit in another city, or a flight to the destination of your choice. If you have severe mobility issues and you really don’t enjoy traveling, you can rent a good movie and enjoy the experience vicariously. If you do a computer search for “travel movies” you will find many suggestions to inspire and entertain you.

• If traveling by air, book a direct flight whenever possible. Select an aisle seat with a movable arm rest near the bathroom so you can get out of your seat easily. Use U.S. carriers when possible as they must comply with the Americans with Disabilities Act guidelines.

If you do enjoy experiencing new places, here are some tips that may make your travels easier. Many of these tips will apply to individuals with or without PD.

• Whenever possible, plan to travel with another person whom you enjoy being with. This of course increases enjoyment and safety. In addition, two minds are usually better than one.

• It may be worth your while to consult with a qualified travel agent who is experienced in arranging travel for people with mobility issues. Discuss your needs and limitations carefully with him or her.

• When you make hotel or apartment reservations, be aware that not all buildings have elevators and think about your ability to carry things up several flights of steps. Request a “handicapped accessible” room on the first floor if you think that would be most comfortable for you. • If you sometimes need a wheelchair, by all means bring it, or make arrangements to have one at the airport and at your destination. • Make sure your passport is current.

Visit Your Doctor Well Ahead of Time • Make an appointment 4-6 weeks prior to the vacation so that you have enough time to adjust medications and observe for side effects. • If you are having unexpected motor fluctuations, talk to your doctor about how best to manage that “off time.” Bring your diary with you so that patterns can be determined. In addition, ask your doctor how to manage your medication for significant time zone changes. 8

• If traveling abroad, discuss treatment of possible traveler’s diarrhea as you may need to take along a course of stand-by antibiotics. • Make sure your immunizations are up to date. • Find out if you qualify for a disabled parking permit. • If traveling outside of the country you may want to ask your doctor for a letter verifying the medications you take and the symptoms of Parkinson’s disease that you exhibit. This may save you delays at border crossings or with airport security. • Discuss possible neurology specialists in the city that you will be visiting.

Traveling by Car • If traveling by car on a day trip, consider bringing a portable folding stool or chair to use at a museum or shopping mall that lacks convenient seating. You may find one at a camping store or sporting goods store. • If your car has cloth seats, a vinyl tablecloth or plastic bag can help you slide in and out of the car seat more readily. • Bring any mobility assistance devices with you even though you may not always need to use them. A cane, walker or wheelchair can increase your safety in unfamiliar places and ease your mobility issues. • Pace yourself with needed stops. Have an agreement with your travel partner about how frequently you need to stop and move about.

The gate numbers of departing and arriving planes change and you may have a greater distance to walk than expected. • Have more than enough medication available. Keep your pills in the original containers. Carry your medication with you at all times. Some people prefer to use a backpack or “fanny pack” so hands can be free for balance. • Bring a water bottle that you can fill or empty as needed so you can take your medication with ease and keep well hydrated.

Traveling Abroad • If you are traveling abroad, have the telephone number of the American Embassy in the countries that you are visiting. • Carry with you a photo ID card, a Parkinson ID Card or a letter from your doctor stating that you have Parkinson’s disease. Have a list of medications and your insurance cards. Also carry names, addresses, and phone numbers, including fax numbers, for your doctor and your pharmacy. • Make several copies of your passport. Put one copy in your suitcase and leave the other copy with a friend so that you can retrieve information should your passport get lost or stolen. • Buy insurance that does not exclude pre-existing conditions. • Have some foreign currency available for your initial cab ride. • Bring an international cell phone if possible. (continued on next page)

Travel by Air • Travel lightly. Pack like-colored clothing and pack a small bottle of detergent for washing small items. • Pack medical equipment in a separate bag. Most airlines do not charge for a bag designated for medical needs. • Wear comfortable shoes and, if possible, something that you can take on and off with ease as you go through airport security. • Plan to wear pants with deep pockets for your cell phone, money, credit cards, etc., so they are easily accessible. • Make sure your luggage is well marked. Having a suitcase misplaced or lost can increase stress and alter your plans significantly. • Plan to bring your wheelchair and check it at the gate. If you do not choose to bring it, request an electric cart to assist you in getting to the gate, dealing with potential gate changes, and transporting you to the baggage claim area.

Live it!

Summer 2012

ask the experts – traveling

(continued)

At the Airport

Cruise Travel

• Pace yourself so that you do not become exhausted. Always arrive early at the airport to decrease stress and allow for unexpected surprises. Bring along something to entertain yourself, e.g., books, newspapers, Sudoku, crossword puzzles or travel scrabble.

Discuss mobility needs carefully when making your reservation. Find out how you will be expected to get off the boat at various ports and if you can count on having wheelchair accessible taxi cabs.

• When going through security, look for the “handicapped” or family express line to use if you need it. (Have your physician letter handy to verify your disability. Request a hand search if you have an implantable device, e.g., a deep-brain stimulator, pacemaker, etc.) Have your neurostimulator card handy. Take advantage of early boarding opportunities so that you can have extra time to enter the plane. • Like everyone else, get out of your airplane seat and walk up and down the aisle to maintain mobility and prevent complications. • Ask the flight attendant if you can use the first class bathroom if your coach bathroom is too small. Let him/her know your condition.

During Your Vacation • Relax and appreciate your adventure. • Conserve your energy and rest as needed. • Keep up your exercise program and eat well-balanced nutritious meals. Take your medication with 4-5 ounces of water for better absorption. • Preserve those memories with a well charged camera and an empty photo card. • Plan your next vacation and come back with your “batteries re-charged.”

chapter information - letter from the Iowa Chapter Co-President Hi! My name is John Krumbholz and I was recently elected as co-president of the Iowa Chapter of APDA along with LaDona Molander, who was the cover story of the Spring 2012 issue of Live It! I was honored to be considered for this position and I am anxious to serve fellow Iowans who either have the disease or are caretakers for those afflicted. I was diagnosed nearly seven years ago, and three years ago was forced to step down from my position as a middle school principal. Although my life as an educator has been cut short, my life of service has a lot of gas still left in the tank. I feel strongly that God has steered me toward this challenge for a purpose, and that purpose is to help ease the burden for my Parkinson family. I hit the ground running in April with a public service announcement that has been distributed throughout the state. Hopefully many of you have had a chance to see it and liked what you saw - you might even be one of the pictures passing by on the screen. That will be just the beginning! John Krumbholz

I am a native of Cedar Rapids and have been married for 36 years. Together we raised three wonderful children and have now been blessed with four grandchildren. I need to stay active to keep up with them and being active is a key for all of us to help manage this disease. My wife has been by my side for everything for the past 36 years and together we form a team. I hope that all of us will form a team as well - a Parkinson Team. Together we can find a cure and until we do, together we can work to improve the quality of life for everyone in Iowa impacted by this disease.

Thank you, John Krumbholz

in the community - past events

past events Conference Overview The Annual Parkinson Disease Conference of 2012, “Take Control: Moving Forward with Knowledge and Wellness” took place on Friday, June 15, 2012, at the Lutheran Church of Hope in West Des Moines. The focus this year, and every year, is to continually offer new and empowering information to help those impacted by Parkinson’s disease, including family members, caregivers, friends and health professionals. There were over 400 attendees at the conference this year, and 20 speakers presenting on a wide variety of topics. Many participated in an energetic morning session of Dance for PD, an exercise program. The session was led by one of the founding members of the program, Misty Owens, from Dallas, Texas. The first speaker was John Krumbholz, Co-President of the Iowa Chapter of the APDA. He welcomed the attendees with inspiring opening remarks and challenged them to be advocates for Parkinson’s awareness in Iowa: “We have to quit kidding ourselves – no knight on a white stallion is going to charge in here to save us. The simple truth, folks, is that no one is going to fight this fight for us, but there are a lot of people who are willing to fight with us.” Following John’s talk, Dr. Emily Drabant from the personal genetics company, 23andMe, presented information on how their company is involved with Parkinson’s research and what genetics has revealed about Parkinson’s onset. Throughout the day, Dr. Drabant signed up individuals for 23andMe’s Parkinson’s Research study. Please see page 7 for more details on the Parkinson’s Research Study by 23andMe. “In terms of medications, we know that people respond very differently to different drugs…often it’s a game of trial and error to find out which medications work best for you. Our

vision is to actually use genetic information to predict ahead of time which medications you might respond to best.”

Attendees listen to a keynote lecture.

Dr. Gary Leo, a neurologist and sleep disorders specialist from Milwaukee, addressed the topic of sleep – different types of sleep, why it is important for people with Parkinson’s and their partners and how to get a decent night’s rest: “I always tell people Parkinson’s is a team sport. There’s the person with Parkinson’s and also their support, their family, spouse. So it’s important for the spouse and family to get a good sleep at night as well as the person with Parkinson’s disease.” Throughout the day and during lunch, over 30 vendors displayed at the conference this year and offered information on a variety of beneficial local services. There were two breakout sessions this year that took place before and after lunch. The first concurrent session included topics on caregiving resources, dementia, deep-brain stimulation, physical therapy and a session for those newly diagnosed. The second breakout session included topics on Medicaid eligibility, depression, non-motor symptoms, incontinence and music therapy. Attendees also enjoyed another Dance for PD session and Tai Chi in the afternoon. To end the day, Dr. Lynn Struck spoke about recent advances in medications and treatment: “What we typically want to do is treat the symptoms that are most bothersome to the patient. This is tailored to the patient’s medical health, other medications that they are using, and what functional impairment that individual has.” Visit www.apdaiowa.org to hear audio files and download presentation notes of the key note presentations.

Conference speakers at the Q&A session.

Dance for PD session led by Misty Owens.

Live it!

Summer 2012

cover story

the adventurous life

Jerry Kemperman

Boone resident continues to hunt, fish, and travel with PD Jerry Kemperman grew up spending summers at his grandparents’ home, learning to love the great outdoors. Like many boys, he reveled in the mud and the water—digging up night crawlers and catching minnows from the stream to sell to the bait shop. Even more memorable were the trout-fishing trips up north with his grandfather. “I had a lot of good times with my grandfather,” said Jerry. “He gave me my confidence in the woods.” When Jerry was about 41 years old, his grandfather developed Parkinson’s disease. When Jerry was diagnosed with the disease himself, at age 56, what happened to his grandfather was foremost in his mind. “I knew he would want me to do as much as possible while I can,” said Jerry, who remains determined to continue doing what he loves.

LiVE

Before he was diagnosed, Jerry devoted his life to the outdoors. He attended forestry school at the University of Michigan, then joined the Peace Corps in the early 1970s and worked on agricultural diversification projects in Panama and Costa Rica. He finished his master’s degree in Michigan, and later moved to Alaska to do forest inventory work. In 1974, Jerry left Alaska to do forestry research in Ontario, then moved to northeast Iowa in 1977.

Jerry with a northern pike at Isle Royale, located in the northwest part of Lake Superior.

Jerry sends Christmas postcards to friends and family that are illustrated with the year’s exploits.

He has passed his love for the outdoors on to his three children. Nearly every year since 1990, he has taken a canoeing trip to the Boundary Waters with at least one of his kids. In 1997, Jerry accepted the position of Iowa Department of Natural Resources (DNR) Bureau Chief of Forest Lands and Nursery in Des Moines. It was during this time, the summer of 2003, while on a sea kayaking trip in Lake Superior, that he first noticed problems with his balance and coordination. Two months later, he received a diagnosis of Parkinson’s. The diagnosis made him take a close look at his life and how he wanted to spend the rest of it. The first thing he examined was his job—he was making a 100 mile roundtrip commute from home to work every day. This was time

he could be traveling to places he really wanted to see. So at the age of 57, he retired, and that same day he embarked on a trip to the Kamchatka Peninsula in Russia. There, he spent three weeks climbing volcanoes and salmon fishing. “It was like stepping into the Wild West,” said Jerry. When he and his friend sent in their down payments for the trip, they were told to bring the rest of the payment in new, crisp $100 bills. The group of fishermen took off down the river with guides, who Jerry described as Davy Crockett-type outdoorsmen, in two rickety boats and a raft that barely floated. In a Russian twist on the Wild West theme, they had a toast of vodka with every meal. The day they had planned to volcano climb was foggy and raining, due to a hurricane moving in—though they didn’t know it at the time. Though most of the group stayed back, Jerry, three guides, and an Englishwoman sprinter decided to brave the weather. First, they hiked for an hour before the guides admitted they were lost. When they found the trail, they trekked over a moonscape-like country in the fog. They reached an area with mounds three or four feet high, and Jerry was able to warm up his frozen hands in the sulfur gas they emitted. Suddenly, the sun came out, the fog dispersed, and they could see the peaks of the volcanoes all around them. Just as suddenly, the fog came back, and they were again surrounded by an eerie landscape. On this first trip after his retirement, he had no problems with PD. This is not always the case. During the third year after his diagnosis, Jerry was on a fly-in whitewater canoe trip through the Canadian wilderness to Hudson Bay. He had changed his medication that Spring, and on the second day of the trip the medication stopped working. He had to be paddled out.

By making changes in his approach to exercise and the outdoors, he plans to continue to do what he loves as long as possible. Jerry keeps his symptoms in check with a combination of exercises and healthy lifestyle choices. He lifts weights and does yoga. He also uses the thera-cycle, a piece of equipment recommended to reduce symptoms of PD. It is motorized so that the rider can pedal faster than normal, which is said to generate new pathways in the brain. Jerry, now 65, is planning for a time in the future when he might have to slow down his fast-paced lifestyle. He recently bought a log cabin near Salida, Colorado, with a world-class trout fishing stream nearby, where he will be able to indulge his real love—the “artistic dance” of fly-fishing. Jerry plans to split his time between Colorado and Iowa, where he still goes bird hunting with his dog and friends in the fall. He also participates in state PD conferences and a PD support group in Boone. The support group—more of an informal get-together, really—meets three to four times a year when the members can find the time. “There’s no sadness at these meetings,” said Jerry. “We compare notes and laugh with each other at our problems.” Jerry attributes this philosophical view of his life and his determination to continue to do what he loves to his grandfather. “I’ve been told that when some people get the PD diagnosis, they just give up.” Not Jerry. “If I make accommodations for the disease,” he said, “I know I have many more years of active fun and an adventurous lifestyle ahead.”

Whether related to Parkinson’s or not, near disasters that might cause another person to give up the outdoors always seem to happen to Jerry, especially when he’s with one of his frequent traveling companions. In South Africa, he almost drowned, was charged by an elephant, and was investigated by a lion, which came within six to ten feet to check him out. Some might question his sanity, but Jerry knows his limitations and tries to be as prudent as possible. He gave up two-wheel bike riding once his balance started to become questionable, and moved to a three-wheel bike. He also gave up whitewater kayaking in favor of sea kayaking, which is less dangerous but still enables him to visit beautiful places.

Jerry with his hunting companion, Rufus, the English setter.

Live it!

Summer 2012

humor - games

art

ArtAbility

sudoku

Pat Healy

7 3 4 9

6 3 5

Pat Healy of Cedar Rapids lives by the following quote by Albert Einstein: “Imagination is more important than knowledge.”

6 9 3 6 1 8 7 5 9 6 2 4 5 3 2 4 3 1 4 5 6 7 8 9 1 It’s easy to play Sudoku! Simply fill every column, row and 3x3 box so they contain every number between 1 and 9.

My love of nature inspires me to create a serene ambiance as I incorporate color and texture. My eclectic approach allows me freedom to exercise creativity. I’ve been an artist since I was 12 years old. My grandmother, who died young, painted watercolors. I didn’t know her, but she inspired me to make art. I experiment with different mediums and techniques in my personal art: pastels, watercolors, acrylics, paper and photography. Using different techniques and media gives me the freedom to express myself visually. I was raised in Cedar Rapids and met by husband in Waterloo. I taught art in the public school system for 23 years before retiring. My artwork is on the cover of the book “Living with Parkinson’s Disease,” which is a collection of writings by the Iowa City Parkinson Disease Writing Group (I have 2 stories and 1 poem in the book). My art has been included in several exhibits, craft shows and galleries around Iowa. I do not let my symptoms deter me from creating. I am an active community volunteer and enjoy riding a tandem bike with my husband. I regularly attend Delay the Disease classes and a dance class to help me manage my symptoms so I can remain active. When I am creating art, I feel inspired and passionate. Sometimes I even feel spiritually inspired. My creativity begins to flow and naturally leads to an orderly composition.

Don’t go too fast! The game is easy to play but difficult to master! Enjoy! Answers are upsidedown below.

7 4 1 6 8 2 9 3 5

5 9 8 3 7 4 6 1 2

3 6 2 9 1 5 7 4 8

2 8 6 4 9 7 1 5 3

4 7 9 1 5 3 2 8 6

1 3 5 2 6 8 4 9 7

6 5 7 8 4 1 3 2 9

8 1 3 7 2 9 5 6 4

9 2 4 5 3 6 8 7 1

Samples of Pat’s work

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 Paul and Mary Jane Haverly (515) 295-3656

Creston/Union County Myra Spindler (641) 344-9065

Ames/Story County Sue Trevillyan, setrevill@hotmail.com (515) 233-2089

Davenport/Scott County Eileen Benson (563) 332-6497

Ankeny/Polk County Crissanka Christadoss christcs2@ihs.org (515) 241-6379

Decorah/Winneshiek County Mary Marx marxm@winmedical.org (563) 387-3020

Atlantic/Cass County Jon Jordan, JJordan@wesleylife.org (712) 243-1850

Des Moines/Polk County Valerie Stickel-Diehl vstickel-diehl@mercydesmoines.org (515) 358-0002

Carroll/Carroll County Melissa Schultes mschultes@stanthonyhospital.org (712) 794-5815 Cedar Rapids/Linn County St. Luke’s Hospital Resource Center Samantha White, LMSW WhiteSJ2@ihs.org (319) 369-8044 Cedar Rapids/Linn County John Krumbholz Krummy68@yahoo.com (319) 350-7482 Charles City/Floyd County Carol Quade, carol@fiai.net (641) 228-5063

Dike/Grundy County Bill & Corrine Hinkle whinkle@mchsi.com (319) 989-2110 Dubuque/Dubuque County Gerry Osterhaus gerryosty@gmail.com (563) 582-7313 Fairfield/Jefferson County Melissa Shafer (641) 472-3649 Fontanelle/Adair County Lavon Lutz lutzsafarini@aol.com (641) 745-4044 Independence/Buchanan County Judy Hess (319) 334-2969

Iowa City/Johnson County Judi Gust RobertMcCown@msn.com (319) 351-5248 Marshalltown/Marshall County Joyce Hughes e-jhughes@hotmail.com (641) 752-0349 Mason City/Cerro Gordo County Janelle Nevermann (641) 424-4277 Newton/Jasper County Eloise Prater jeprater@iowatelecom.net (641) 791-1018 Sioux Center/Sioux County Rachael Bowman rachel.bowman@schospital.org (712) 722-8325 Sioux City/Woodbury County Jack Sherrman, jespas@juno.com (712) 277-9337 Spencer/Clay County Carolyn Kruger gck@smunet.net (712) 580-1219 Storm Lake/Buena Vista County Colleen Last, lastc@iw.net (712) 732-1925 Vinton/Benton County Bethany Clemenson (319) 472-2060

Washington/Washington County Amy Kleese Amy_Kleese3@hotmail.com (319) 653-5473 Waterloo/Blackhawk County Terry Hertges Beno08@aol.com (319) 235-7118 Waukon/Allamakee County Connie Metille (563) 538-4005 Waverly/Bremer County Jennifer Wolff jdwot01@hotmail.com (319) 290-9402 West Burlington/Des Moines County – Ruth Newton, newtfarm@frontiernet.net (217) 453-2481 West Des Moines/Polk County Mary Adkins, bjamla@aol.com (515) 480-4090 LaDona Molander ladonamolander1@msn.com (515) 953-8474 Trenton, MO Gloria Koon (660) 485-6558

Support Group News • During RAGBRAI this year, Dr. Jay Alberts, a Parkinson’s researcher at Cleveland Clinic in Ohio, and his Pedaling for Parkinson’s team passed through towns with Parkinson’s support groups and presented information on exercise research and Parkinson’s. This year he presented in Sioux Center, Cherokee and Cedar Rapids.

• The Vinton Support Group was featured in their local newspaper The Vinton Eagle in an article about mobility and flexibility, written by Stacey Hodges, Occupational Therapist and Director of Rehabilitation Services at Virginia Gay Hospital.

For additional information on support groups, forming a support group, or to have your support group listed, contact the Iowa Parkinson’s Disease Information and Referral Center (877) 8726386, or go to our website www.apdaiowa.org.

Live it!

Summer 2012

upcoming events, training, education

what’s coming up? 2012 Fall Events Tuesday, October 16 – Annual Caregiver’s Appreciation Brunch, “Giving Caregiver’s a Hand,” 9 to 11:30 a.m. at the Plymouth Congregational Church in Des Moines. Two presentations will made by local experts on caregiving topics. Event is Free, RSVP by October 12. Call the Information and Referral Center at (877) 872-6386 to reserve your spot and for more information Saturday, October 21 – PD Walkers team will participate in the Des Moines Marathon. Email pdwalkers@gmail.com for more information.

Area Conferences Saturday, October 27, 2012 – NW Iowa Parkinson’s Disease Symposium at the Hilton Garden Inn in Sioux City, Iowa. Call the Information and Referral Center at (877) 872-6386 for more information and to register.

Training Friday and Saturday, November 16-17 – Delay the Disease Certification Training at the YMCA Healthy Living Center in Clive; registration will be $250 ($295 after October 26). Call the YMCA to register at (515) 226-9622 and for more information. Deadline is November 1. Monday, November 19, 12-3 p.m. – Become an Exercise Cheerleader!,YMCA Healthy Living Center on University Avenue in Clive. Delay the Disease will lead an instructional seminar aiming to provide methods and fitness techniques

Past Event Spotlight April, areness Month Aw ’s Parkinson

Coordinator Crissanka Christadoss nie. with Des Moines Mayor Frank Cow nes The City of Des Moi declared April 2012 as Parkinson’s Awareness Month . during their monthly council meeting

for helping a loved one with Parkinson’s-specific exercises at home using the Delay the Disease Parkinson’s Fitness Program. This course is for caregiver’s and will address all levels of the disease so you can tailor an exercise program for your loved one. Cost is $15 (free for person with Parkinson’s). To register please call (515) 226-9622. If you have any questions, please contact Trina Radske-Suchan at (515) 645-3342.

Delay the Disease Exercise Classes “Delay the Disease” is a fitness program designed to empower people with Parkinson’s Disease by optimizing their physical function and helping to delay the progression of symptoms. It is also the foundation for exercise classes geared specifically to counteract the movement challenges experienced by people with Parkinson’s. Delay the Disease is taught in Iowa at the following locations: Atlantic – Heritage House, Free, Contact Jon Jordan at JJordan@wesleylife.org or (712) 243-1850. Cedar Rapids - Fresh Life Fitness studio, registration and payment required, call (319) 431-5332 for more information. Clive - YMCA Healthy Living Center, payment required, call (515) 226-9622 for dates and times. Des Moines - Wesley Acres, Free, call Wellness Director Mary McCarthy at (515) 271-6596 for more information. Iowa City - Iowa City/Johnson County Senior Center and the North Liberty Community Rec Center, registration and payment required, Contact Kris Cameron at (319) 361-7673 or renuyourlife@yahoo.com South Sioux City, NE - Norm Waitt Sr. YMCA in South Sioux City, registration and payment required. Contact Wellness Programs Coordinator Jacque Perez at jperez@nwsymca.org or (402) 404-8439. If you would like more information on this program or other types of physical activity, please call Iowa Parkinson Disease Information and Referral Center, (877) 872-6386.

kudos

Shakey Tracks: My Ride Across America with Parkinson’s

kudos

Rich Mills of Winterset, Iowa, is a bike geek and proud of it. He’s taking his geek to the streets by bicycling from San Francisco to Washington, D.C. for Parkinson disease awareness and research. He’s named his journey Shakey Tracks: My Ride Across America with Parkinson’s. Mills, 58, was diagnosed with Parkinson’s in 2009, but he has not let that get in the way of his passion. During his three-month journey, he plans to get signatures on petitions that advocate for stem cell research and additional funding for this research. He is going to present this petition to the Congressional Caucus on Parkinson’s Disease in Washington, D.C. The Caucus consists of Representatives and Senators who formed to create more awareness about Parkinson disease on Capitol Hill. “I am making this trip for several reasons. I want to do this trip while I am still able to, and I want to meet others impacted by Parkinson’s to share tears and laughter with them. Mostly, I’m doing this for myself. I feel the best on a bike. Riding makes my body stronger, sharing stories with others strengthens my resolve and the fundraising and awareness rushes us toward a cure for Parkinson’s. That gives me hope,” says Mills. His journey from San Francisco to Washington D.C. is by far the longest journey he has done, though he has made several impressive trips including one down the Mississippi River and several across the state of Iowa.

Rich Mills and his bike at the Hogback bridge in Madison County

Visit his website, www.richmills.us, to sign the petition, see where he is on his journey, or donate. Mills began his trip on July 31 and Mills anticipates reaching Washington, D.C. by the end of October. Mills is raising money for the Iowa chapter of the APDA and for the Michael J. Fox Foundation for Research.

A Visit from an Australian Advocate

Jason Nestor completed a transcontinental bike trip in honor of his father, who was diagnosed with Parkinson’s in 2003. The trip is also in honor of two of his grandparents who he lost to cancer. Nestor wants to raise awareness on this trip for both causes as he depends on his bike to get him through Australia, the US and Europe. His final destination is Eindhoven, Netherlands. We were lucky enough to have him pass through Iowa. Thank you to Jon Jordan of Atlantic, Rich Mills of Winterset and Bill and Norene Bruxvoort of Pella for providing Jason with some Midwestern hospitality by offering him a place to sleep, shower and eat. A special thank you to Jason for coming through Iowa and spreading Parkinson’s awareness to the international community. All the best to you and your family! To learn more about Jason’s endeavor, visit www.thelongroadtour.com Jason Nestor rides through Iowa and poses in the Pappajohn Sculpture Garden in Des Moines

Live it!

Summer 2012

kudos

The Iowa Chapter of the American Parkinson Disease Association would like to express our gratitude to the O’Donnell family of Des Moines for raising $80,000 for the Chapter in their annual O’Donnell and Friends Golf Open!

Iowa Chapter Co-Presidents LaDona Molander and John Krumbholz accept a check from Dan and Dee O’Donnell

LaDona Molander and a group of amazing volunteers

Dan and Dee O’Donnell

The O-Donnell Family

Thank you!

Thank you! Advantage Communications Systems, Inc. Alexander Investments Services, Inc. Allstate Benefits Anderson-Erickson Dairy Anthony’s Flowers Bella Salon Bennigans & Magnuson Hotel Bianchi’s Hilltop Restaurant Blue Knights Iowa Boesen the Florist Bonnie Cruickshank-Lind Brody Construction Butler House on Grand Capital Sanitary Supply Carl’s Place Carpenter Uniform & Promotional Products Casey’s General Stores Chem-Tech LTD. Chicken Coop Cleaning Connection, Inc. Coburn’s Car Center, LTD. Cottontail Lounge Dalquist Clayworks Darling International, Inc. Debby Mook Deck the Walls Doll Distributing DSM Police Bargaining Unit Assoc. DSM Police Burial Assoc. DSM Police Officers Credit Union DSM Register/Randy Evans E.P. True Dental Eagles Wings Electrical Power Products, Inc. Faller, Kincheloe & Co. PLC Forrest & Associate, Inc. Friendly Sons of Saint Patrick Global Tech Services, Inc. Golf Galaxy Greater DSM Snow Maintenance/ Charles Campbell Greenbriar Restaurant & Bar Hamilton’s Funeral Home, Inc. Heartland Flagpoles & Custom Flags, Inc. Henriksen Contracting LLC HHS Sales, Inc. Hilton Garden Inn Hy-Vee Ideal Floors, Inc. Ingersoll Dental Group, P.C. Iowa Beverage Systems

Iowa State Bank Iron Gallery Jasper Winery Jim Bagbey Agency Joe Morten & Sons, Inc. Johnson Controls Joseph’s Jewelers Julie Haggerty Polk Co. Recorder & Staff Kim’s Cakes Link Association Employees Little Sprouts Children Center M & M Sales Company Magnolia Park Neighborhood Association Meredith Corporation Midwest Heritage Bank Mike & Dal Grooms Mumo Systems Nationwide Insurance NewCom Technologies, Inc. Noah’s Dry Cleaning O’Donnell ACE Hardware Inc. Okoboji Bar & Grill Paesano’s Paul Reveres Pizza Play It Again Sports Quantum Asset Management LLC Quik Trip RDG Planning & Design Red 5 Interactive, Inc. Regency Brokerage, Inc. Sam’s Club Schoening Family Scott’s Automotive Service, Inc. Smile Orthodontics/Drs. Sturdivant & Mann Sortino Transportation, Inc. South Des Moines Softball Assn. SPECK USA, INC. Stickel Chiropractic Clinic Stockman’s Inn / Iowa State Fair Sullivan’s Enterprises, Ltd. Supplemental Insurance Services, Inc. T & M Services Terry-Durin Co. TG Inc. Toad Valley Golf Course Tumea & Sons Unilever Food Solutions Unite Private Networks, LLC VSR Financial Services, Inc. Weisler and Associates, Inc.

Wine Styles of West Glen Jesse & Ellen Ahrens Cory & Stephanie Benson John & Kathy Bixler Steve & Denise Bogle Don & Janet Ceretti Jeff & Jody Crane Greg & Brenda Cushing Bob & Christine Dove Steve & Rosemary Eden Dan Evans Josh & Heather Evans Moody & Tunks Family Bill & Terri Gordish Tom & Tenille Hamilton Matt & Sue Harkin Tim & Sue Hatling Steve & Sara Heddinger Vernon & Diana Hemann Jonathan & Jordan Hicks Davin & Tiffany Holmes John & Kathie Jones Robert & Brittanie Kahn George & Christine Karnas Rex & Alysia Kepford Kevin & Michelle Manz Jeffrey & Maureen McAnarney Bill & Linda McCarthy Matt & Lisa Meline John & Ashley Miller John & Joyce Newman John & Rhonda O’Donnell Jim & Terrie O’Donnell Michael & Amy O’Donnell Dan & Dee O’Donnell Mark & Tonya O’Donnell Dennis & Teri O’Donnell Dan & Kris O’Donnell Bryan & Tonja O’Donnell Jim & Josie O’Halloran Bill, Brendie, Marty & Lori Polka Nick & Audra Rinard John & Sandy Roan John & Nancy Sacrone Doug & Valerie Saltsgaver Jim & Joyce Shaffer Neil & Cheryl Shultz Michael & Lynn Struck John & Barb Webb Chuck & Lori Wellman Jeff & Darcy Williams Dan & Janelle Zaug Clara May Banks

John Boehmer Judi Brown Bonnie Cruickshank-Lind Ken Deets Linda Dunshee James Edwards Dave Foreman Janet Hasstedt Robert Holst John Johnson Keith Kroner Mark Langerud Dan Malloy E. Adele McDowell Sandy Morris Neil Mueller Pete Nigro Mike O’Donnell Mindy O’Donnell Josephine O’Donnell Isa O’Hara Todd Parson Barb Sackett Davis Sanders Allysa Spring Viola Studer Phil Swartz Curt Taylor Denny Westover In Memory of Dr. Jerry Booth Mary E. Booth, Kim Johnson, & Mike A. Booth In Memory of Jack Sanders Jan & Bob Kuramoto Becky Jo Deimerly In Memory of Lois Burns Richard P. Dimarzio In Memory of Cindy Munroe John & Kathy Bixler Steve & Maryilyn Daughenbaugh Diane Fletcher Ricky & Jenny Vega

donors/acknowledgements

donors

February – July 2012

Many companies and corporations will match your tax-deductible 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 Members: Co-Presidents: John Krumbholz and LaDona Molander Treasurer: Greg Armitage Directors: Gina Chaves, Rolando Chavez, Gayle Fopma, Ervin Fopma, Terry Hertges, Becky Holmes, John Krumbholz, David McNeill and Jen Voorhees Past President: Joel Jacobsen • American Parkinson’s Disease Association, Inc. - National Office 135 Parkinson Avenue, Staten Island, NY 10305, (800) 223-2732 www.apdaparkinson.org

acknowledgements

Donations:

Charles City Parkinson’s Support Group Crissanka Christadoss John Crowley Randall Evans Scott & Laurie Fettig Amanda Royce-Hale Alice Hansen Heritage House in Atlantic, Iowa Ralph Herron Teresa Hildebrandt Katherine Ihm Jon Jordan Patricia Martin Jana Mentzer Jeff Molander Marvin & Verone Nederhoff Michael & Lona Pappas Milo & Donna Petersen PD Walkers Pampered Chef Fundraiser Neil & Karen Rohlena Jerry & Sandra Urfer Ben Shouse Jeff Stark Tricia Hamak-Sundeon Vinton Parkinson’s Support Group Southern Iowa Parkinson’s Support Group: Jim & Karen LeFleur Sue Walz Rich Wells

Corporate Donations: ITA Group Foundation Wesley Retirement Services

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

In Memory:

In Memory of Pershing L. (Jack) Avritt Donor Name: Jan Corderman Kenneth & Joyce Kock

In Memory of Vance J. Barber Donor Name: David & Janet Barber Kevin Barber & Family Randy Barber & Family Tom & Betty Bear Berniece Butler Chris Campbell Dale & Mary Davis Renata & James Deinorger Randy & Becky Jones Evelyn Lewin Vick & Helen Masimore Dean & Marilyn Perkins Rick & Vicky Piper Roger & Kathy Porter Ron & Kay Powell Rathbun Lake Corps of Engineers Angela & Rodney Reed Wayne & Janice Schope Bob & Marilyn Schultz Lavern & Karen Shondel Mary Stufflebeem Martin & Norma Stevenson Betty Talbot Rob & Angie Talbot Scott & Tina Talbot Greg & Mary Taylor Tiki Marina – DJ& Julie, Dan & Ileta, and Staff Robert & Myrna Tompkins Tom Young & Family Rich & Judi Weihler John P. White Mary Jane Withrow In Memory of Velma A. Baughman Donor Name: Charles & Jean Carnahan Laurie De Haai Beth McKee Sandra Smith Norma Vanderpool Amy Young

In Memory of Arie Breed Donor Name: Glen Anderson David & Cynthia Barnes Catherine Breed Kenneth & Joann Carlo Casey Cason Elsie & Larry Cofer Dan & Pam Cole Harvey Condon Karin Condon Mehmet & Edith Cultu William Cummings Douglas & Patricia Dornacker Mary Earnest Dale & Patricia Essick Kurt & Cindi Gates Robert & Linda Goodin Brian Grasso Lora & Mac Harry M. & P. Heerdink Jack & Mae Heinje John Deere Company Marie Johnson William & Melissa Jordan Katherine & Allan Lawrence L. & D. Lybarger Nancy & John McDonald Joseph & Patricia McGee Dennis & Teresa Miller Sherrie & Robert Panther Sarah Pennington William & Karen Reece Angela & Rodney Reed Larry & Marcene Renaud Becky Renfrow-Schumann Kermit & Wilma Schwartz Mark & Shari Scigliano Billie Tarr Allan & Patricia Van Thomme Kenneth & Bonnie Watson Janenne & Stanley Wellman Scott & Angie Westcott L. & L. Workman

In Memory of Blanche Brenneman Donor Name: Irene Brenneman David Brenneman Harold & Billie Norris Robert & Eunice Welsh In Memory of Evelyn Crane Donor Name: Dale Crane Kenneth & Joyce Kock In Memory of John Ray Dawdy Donor Name: Steve & Jeanne Avery Ruth Blank Bonnie Brown Francis & Carolyn Brown Juliana Brown Richard & Ladonna Bumann Janice Dawdy Mary Jane & Rich Grondek Jerry & Deb Hale Gary & Carolyn Maly Sheila Ogan Konnie Post Kelly Robinson Virginia Storm Jerry & Benita Yacevich Rick & Erika Woorell Ron & Cindy Zellers In Memory of Patricia Hagan Donor Name: Heather & Scott Evers Jane Haigh Mike Klapholz Karl & Patricia Knutson Mary Menzel John & Mary Ritchie Randy & Kristina Scheckloth Sharon Schneckloth Gertrude Schmidt

In Memory of Celeste Herron Donor Name: Gerald Dockum Ralph Herron Barbara & Thomas Jamison Florence Kees HT & Janice Wiedenman In Memory of Dick King Donor Name: Grundy County Support Group Mary King & Family In Memory of Gerald Krull Donor Name: Kurt Fitzgerald Maxine Krull & Family Edwin & Inez McCarville Wayne & Marietta Sargeant James & Marjean West In Memory of Bob Lechnir Donor Name: Margaret Lechnir In Memory of LeRoy “Bud” Molander Donor Name: R’ Dell Molander In Memory of Michael Moore Donor Name: Ambassador Class, Capital City Baptist Church, Ankeny Joann Askevics Carole & John Harmon Louise Silver Ken & Jean Silver Doyle Uitermark In Memory of Willodean Pontier Donor Name: Mr. & Mrs. Kenneth McCart

In Memory of Warren Sunds Donor Name: In Memory of James E. Gilchrist Marlene Sunds Donor Name: Dr. Stan & Lou Blew Marilyn Muldoon Linda & Tim Nemmers Dick Walter Ron Zoss Live it! Summer 2012

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 - General

American Parkinson’s Disease Association ......................................................www.apdaparkinson.org American Parkinson’s Disease Assn, Iowa Chapter ........................................www.apdaiowa.org Parkinson’s Action Network ...............................................................................www.parkinsonsaction.org American Academy of Neurology .....................................................................www.aan.com The Movement Disorder Society .......................................................................www.movementdisorders.org WE MOVE: Worldwide Education and Awareness for Movement Disorders .......................................................www.wemove.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

Listservs (online discussion groups) Parkinson’s Disease Blog Network ....................................................................www.parkinsonsblognetwork.com Brain Talk Communities ....................................................................................http://brain.hastypastry.net/forums/ Parkinson’s Information Exchange Network Online ........................................... www.parkinsons-information-exchange-network-online.com

Other Web Links in this Issue of Live it! Prescription Reminder App ...............................................................................www.rxmind.me 23andMe................................................................................................................www.23andme.com/pd Rich Mills’ Ride Across America........................................................................www.richmills.us Australia to the Netherlands...............................................................................www.longroadtour.com

sign language

sign

language

Home The sign for “home” is made by bringing your fingers and thumb together and touching your cheek at the side of your mouth. Then move your hand an inch or two toward your ear and touch your cheek again. Memory aid: Think of the place where you eat and sleep.

Church The sign for “church” is made by forming the letter “c” with your dominant hand. Form your non-dominant hand into an “S” hand. Place the thumb of your dominant hand on the back of your non-dominant hand. When signing church, it is common to use a double movement. Tap the thumb of your “C” hand on the back of your fist. Repeat. Note: the movement is up and down, not circular.

Thank you

for reading LiveIt! Magazine, and for your support of the Parkinson’s disease community. Live it!

Summer 2012

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

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