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El Camino for the CureA family motivates themselves and others

with a once-in-a-lifetime challenge

A Resource for Iowans with Parkinson’s Disease

and those who care for them.

table of

contents 3 l From the Staff

3 l Contact Us

4 l From Our Medical Director

5 l Nutrition Choose MyPlate

6 l Tools You Can Use

7 l Cycle for Neuro Wellness

8 l Cover Story El Camino for the Cure

12 l Past Events Silent Auction, Proclamation Signings, Conference

14 l Kudos Lost Cause Motorcycle group, Eastern Iowa Golf Classic

15 l Rebus, Riddles and ArtAbility

16 l Donors/Acknowledgements

17 l Upcoming Events, Delay the Disease Classes

18 l Links, Resources and Sign Language

19 l Chapter Information, Subscription Form

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Table of Contents2

Reader SubmissionsLive 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 c.christadoss@unitypoint.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.

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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)

Scan the QR code at left to go directly to apdaiowa.org

letter from the

Live it! staff

Live it! Summer/Fall 2013 3

Live it! Staff Medical Director: Lynn Struck, M.D.Managing Editor: Crissanka Christadoss Editors: Linda Jordening and Vicki Ingham Contributing Writers: Gary Johnson, Hannah Johnson and Kelly Wagner Art Director: Patrick Vaassen

Live it! Editorial BoardLynn Struck, M.D., Medical DirectorCrissanka Christadoss, Coordinator, Iowa Parkinson Disease Information and Referral Bruce CarrVicki InghamLinda JordeningPatrick Vaassen contact us:

Iowa Parkinson Disease Information and Referral CenterUnityPoint Health – Des Moines

1200 Pleasant Street E-524 , Des Moines, Iowa 50309(877) 872-6386

www.apdaiowa.org8

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.

Dear Live it! Readers,The Spring and Summer were very busy for us! While we continue to keep busy, we are looking forward to one of the best seasons in Iowa, Fall. We look forward to November as National Caregiver’s Month by hosting our Annual Caregiver’s Appreciation Brunch in Des Moines and our NW Iowa Parkinson’s Symposium in Sioux City (page 17 for more details). We hope to see you at these upcoming events!

This summer two of our board members, Rolando and Gina Chaves, along with their family, walked a 500 mile pilgrimage through Northern Spain to raise awareness and funds for Parkinson’s. They returned to Iowa with many experiences and stories, knowing that in many ways they are beginning another journey. Read all about their journey on page 8.

We celebrated Parkinson’s Awareness month in April with our first annual Silent Auction event in Des Moines in support of the Chaves’ fundraising efforts. We also held our 7th Annual Barb Moore Golf Tournament in June. For a look at more past events, see page 12.

The Annual Parkinson’s Disease Conference was also a success this year as we had 500 attendees from all over the state. It was a great day full of wonderful speakers and good information. See page 13 for an overview, and stay tuned for next year’s conference date and agenda.

In between Live It! issues, we keep our website and Facebook page updated with upcoming events and ways you can get involved. Please sign up for our monthly e-newsletter on our website to receive emails and to keep yourself in the loop!

www.apdaiowa.org

www.facebook.com/IowaIandR

Don’t forget about the Michael J. Fox Show airing on NBC on Thursday, September 26, 9/8 C! The show is a comedy about Fox’s character, Mike Henry, a news anchor and family man with Parkinson’s. Hope you tune in!

Till next time,

The Live it! Staff

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.

from our medical director

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Lynn K. Struck, M.D.NeurologistPhysician Specialty ClinicUnityPoint Health – Des Moines

This icon indicates more information is available at the featured Web link.

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.

Copyright Statement:Statement of CopyrightThe 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.

Identifying Candidates for Deep Brain Stimulation for Parkinson’s Disease

There are several steps that are necessary to determine an appropriate candidate for deep brain stimulation, a surgical therapy that uses mild electrical impulses from an implanted device to stimulate the brain. The following are generally accepted criteria for someone being a candidate for deep brain stimulation:

• Idiopathic Parkinson disease (idiopathic means ‘unknown cause’) • Positive response to Levodopa• Complications of Parkinson disease medical therapy (such as motor

fluctuations or dyskinesia)• A lack of significant psychiatric or mood symptoms• No dementia• Under the age of 70• Less commonly, deep brain stimulation is considered when a

disabling tremor won’t respond to medications.

When a patient is a potential candidate for deep brain stimulation, there are a number of preoperative assessments necessary to determine if the patient is definitely a candidate. First, the patient needs to see the neurologist while they are on medications and then off medications. The patient comes in first thing in the morning, not having taken any medications after midnight. A United Parkinson Disease rating scale is administered to the patient in an ‘off’ state and then when the patient is typically ‘on’. The patient must show a minimum of 30 percent improvement between the ‘off’ state and the ‘on’ state to show the patient has a good response to levodopa.

A neuropsychological evaluation is necessary to measure the patient’s emotional and cognitive well-being prior to surgery. Patients with significant impairment, depression, or anxiety are at risk for poor adjustment following deep brain stimulation.

Finally, appropriate counseling is necessary. It is necessary that patients understand that deep brain stimulation is not a cure. One helpful guide is when the patient is doing their on/off evaluation. If a symptom does not improve with maximal medical therapy, it is unlikely to improve after deep brain stimulation.

Next, a discussion about the actual surgical procedure and risk, choice of battery, and battery life is necessary. Appropriate patient selection, preoperative assessments, and careful patient counseling are all necessary to successfully perform deep brain stimulation in Parkinson disease.

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Nutrition By Kelly Wagner and Hannah Johnson, Iowa State University Dietetics Program, Food Science and Human Nutrition Department

Throughout summer and fall, with warm weather, these seasons bring a variety of fresh and nutritious food selections. Before diving into the season’s tasty bites, consider basing your plate off USDA’s MyPlate, a visual illustration tool to help you make the most of each meal. MyPlate is split into multiple sections, each representing one of the five food groups. Use it to visualize what a balanced meal should look like, but don’t forget to exercise, stay hydrated, and get plenty of rest as well!

The following helpful tips and suggestions can help you lead a healthy lifestyle and can easily be adapted for any individual struggling with swallowing problems. If you are struggling with swallowing problems, your team of speech pathologists, dietitians, and other medical professionals can assist you in finding appropriate food choices that are both appealing and nutritious. Based on your alternate texture needs, try some of these food suggestions to help meet MyPlate recommendations:

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nutrition corner

Focus on FruitsTry It! Satisfy your sweet tooth with some of these juice options: Berries with non-fat plain yogurt, apples with sugar- free caramel, dried mango.

Texture adaptations: Thickened 100% juice, soft ripe fruit like bananas, applesauce, or canned fruit in light syrup.

Vary Your Veggies Add color to your plate!

Try It! Asparagus, butternut squash, red bell peppers.

Texture adaptations: Thickened vegetable juice, soft cooked, steamed vegetables free from seeds, pureed vegetables free from seeds.

Go Lean With Protein Protein has been known to provide a satiety (fullness) effect.

Try It! Quinoa, a whole grain and complete source of protein, nuts, or fish.

Texture adaptations: Pureed chicken, scrambled eggs, ground poultry or other lean meat products.

Get Your Calcium Rich FoodsChose low-fat milk options when possible.

Try It! Low-fat or fat-free Greek yogurt or cottage cheese.

Texture adaptations: Mashed potatoes made with dry-milk powder, yogurt, thickened milkshakes or smoothies made with skim or low-fat milk.

Make Half Your Grains Whole Grains Try It! Whole wheat couscous, bulgur, whole wheat pasta and bread.

Texture adaptations: Oatmeal or thickened cream-of-wheat, soft whole wheat crackers, whole wheat pancakes.

Live it! Summer/Fall 2013

See it, Touch it, Try it at a Demonstration Center!

Assistive technology devices can be magic, but will they work for you? Let’s explore three services available in Iowa to find out. Nobody wants to spend money or resources on devices that don’t work for them. Call or email any of the following services to set up an appointment. Contact information is provided below.

1. St. Ambrose University’s Assistive Technology House and Demonstration Center, 2126 Brown St., Davenport, IA 52804. For appointments contact Rhonda Lane at (563) 333-6277 or email LaneRhondaL@sau.edu

Also called “Jim’s Place,” the Center and House is located adjacent to St. Ambrose University. This is a natural fit for St. Ambrose University as they have a Master’s degree program in Occupational Therapy. The students and public get to see high-tech devices as well as everyday living aids in an actual home.

The ranch-style home is equipped with a residential elevator that transports users from the first floor to the basement. A stair lift is also installed, but a separate walker or wheelchair is likely needed on each floor.

Other features of the house include: • A high-tech motorized ceiling track lift for

transporting a person from room to room.• A computer system that allows someone

with limited movement to switch on TVs, radios, lights by voice or one puff of breath into a tube.

• Adapted leisure and gardening equipment for persons with various limitations.

By Gary Johnson, ATP - Iowa Program for Assistive Technology

the right tools for the job

2. easter Seals Assistive Technology Demonstration Center, Camp Sunnyside, 401 NE 66th Ave., Des Moines, IA, 50313. For appointments call (515) 309-2395 (TDD: 515-289-4069) or email info@eastersealsia.org.

The Demonstration Center features a wide variety of daily living aids that are useful to people with disabilities:

• A kitchen with accessible cabinets and devices for preparing and cooking food. For example, a stove with all of the controls on a front panel, adapted utensils and dinnerware.

• A bath area with grab bars, roll-in shower and bath options, product dispensers and grooming aids.

• An accessible closet with adaptive clothing that makes dressing easier.

Easter Seals also provides refurbished durable medical equipment, such as wheelchairs, commodes and bath benches, at a low cost. Application and prescription required for equipment loan. Call Easter Seals for an appointment or more information.

3. The Iowa Program for Assistive Technology (IPAT), Gary Johnson, ATP; (515) 491-7260, gary-johnson@uiowa.edu

IPAT’s interactive sessions on assistive technology are available statewide. They are based out of the University of Iowa Hospitals and Clinics, Center for Disabilities and Development. Presentations are geared to support groups, service providers, professionals and public awareness. Topics range from daily living aids to computer technology. Computer technology has always been a hot issue, but with the introduction of smart phones, iPads and assistive software, more people have the potential to make “magic” at their command! Contact IPAT for a presentation in your area.

St. Ambrose: ceiling track lift (above) and elevator (below)

Easter Seals: Kitchen with accessible cabinets and stove

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Be sure to check out the

“Delay the Disease” classes

on page 17.

ask the experts

Cycle for Neuro Wellness By Bill Roach, Exercise Instructor, YMCA Healthy Living Center, Clive, IA

What if you could reduce your Parkinson’s symptoms, or those of someone you love, without the use of medications? And what if you could do it together with friends and loved ones?

Research suggests that exercise slows the progression of Parkinson’s disease and other neurological conditions. Growing evidence suggests that cycling may be particularly beneficial. Some research suggests that cycling at an increased effort may reduce symptoms up to 35%.

These studies are based on pedaling at a rate of 80-90 revolutions per minute (RPM), about 30 percent faster than the average rate for Parkinson’s patients of 50-60 RPM. It is theorized the benefit may be because the faster pedaling requires more neuromuscular signaling between the muscles and brain, which can improve motor function in someone with Parkinson’s.

This research began in Iowa when Dr. Jay Alberts, a neuro-researcher at the Cleveland Clinic in Ohio, came to participate in RAGBRAI. Dr. Alberts and a friend who has Parkinson’s disease rode across Iowa on a tandem bicycle. Each day they noticed a reduction in symptoms for the Parkinson’s rider. Dr. Alberts began scientific research on the subject which has since gained acceptance in the scientific community. More information is available at www.pedalingforparkinsons.org/home.

The YMCA Healthy Living Center in Clive offers classes based on this research and is designed to improve the “neuro wellness” of persons with Parkinson’s and other neurological conditions. Classes are every Thursday at 5:45 p.m.

Cycling for Neuro Wellness at the YMCA Healthy Living Center emphasizes encouragement, enthusiasm and support. While participants are encouraged to work harder than they might otherwise, everyone is encouraged to work at a level that is safe and appropriate for them. People without neurological conditions, including spouses and caregivers, are also welcome in class.

All you need bring to class is a water bottle for hydration and heat regulation. You may wish to wear padded shorts or bring a saddle pad for your comfort. You should also come 10 minutes early to your first class so the instructor can fit you to your bike and answer any questions.

Persons interested in participating in the class should be referred by their physician to the YMCA Healthy Living Center for a Neuro-Wellness evaluation. An evaluation by a physical therapist determines if the cycling class is appropriate for the individual, includes a personalized land or water exercise program, and connects the participant to other wellness programs and services at the YMCA Healthy Living Center.

If you have questions about the Cycling for Neuro Wellness class or any other offerings, you may call the YMCA Healthy Living Center Physical and Aquatic Therapy clinic at (515) 645-3350.

7Live it! Summer/Fall 2013

cover story

el Camino for the CureA family motivates themselves and others with a

once-in-a-lifetime challengeFrom St. Jean Pied de Port, France, over the Pyrenees Mountains, through the green expanse of the Spanish highlands and down to the featureless Meseta, then on to rolling hills and lush eucalyptus forests, past vineyards, cathedrals, shrines, and countless towns, winds the Camino de Santiago de Compostela, or the Way of St. James. Completing this ancient, 500-mile-long pilgrimage in Spain, the country of his ancestors, was a long-held dream of Rolando Chaves, board director of the Iowa Chapter of the American Parkinson Disease Association (APDA).

While the pilgrimage, which is tackled on foot, would be difficult for almost anyone, Rolando faced additional challenges. Diagnosed with Parkinson’s disease in 2005 at age 38, Rolando received a Medtronic Deep Brain Stimulator implant almost three years ago to help control tremors in his hands and left leg. Lately, he has begun to lose the ability to speak.

Rolando’s wife, Gina, first read about the Camino two years ago in an article featured in an inflight magazine about the film The Way, a movie about the pilgrimage. When she pointed it out to her husband, she learned about his desire to make the pilgrimage. Together they watched the movie, which inspired them to start planning their journey. They were able to time it perfectly so that Gina could leave work for over a month and both of their children, Kelsey and Braden, were able to accompany them at the end of the school year. Kelsey’s boyfriend, Nick White, also decided to come.

The Chaves family knew the journey would be mentally and physically challenging. They learned as much as they could about the pilgrimage, joining online forums, reading books, talking to previous pilgrims, and ordering the proper equipment and clothing (sleeping bag, sleeping bag liner, water, toiletries, pants, socks, underwear, shirts, shoes, toothbrush, ponchos, sandals). They also started to get in shape. Though some hardy souls complete the pilgrimage in 20 days, most take 4 to 6 weeks. The Chaves family would end up taking 33 days to reach the end, walking 15 to 20

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The Chaves family

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Gina, Rolando, Braden, Kelsey and Nick sit down at a communal meal

Only 790 Kilometers to go!

miles per day. To prepare, Rolando worked with a personal trainer for a year, and he and Gina went on walks almost daily.

The physical challenge presented by the Camino fueled Rolando’s motivation. He wanted to bring attention to Parkinson’s disease and raise awareness about the ability of physical activity to delay the disease progression. They named their journey “El Camino for the Cure,” and he and Gina set about raising money for the Iowa Chapter of the APDA to support research, as well as opportunities for Parkinson’s patients to attend exercise classes, support groups, and informational seminars. They were able to raise almost $10,000 through an online site and a silent auction. “It was amazing and encouraging to receive

support from the local business community to prepare for the auction as well as from friends and family as far away as Costa Rica,” said Rolando.

With their preparations complete, and feeling inspired by the support they had received, Rolando, Gina, Braden, Kelsey, and Nick reached St. Jean Pied de Port, France, on May 31. At their lodging for the night, they sat down to a communal dinner with about 15 others from all over the world. Their host encouraged them all to share why they were going on the Camino. Each had a unique story—one pilgrim had cancer, one had already walked all the way to

France from Wales. Through the shared tears and hugs, they began to see the community spirit of the Camino for the first time.

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... and all my worries went away.

Live it! Summer/Fall 2013

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The sense of goodwill was reinforced the next day. Rolando, unsure about security on the Camino, had placed all their cash and passports in his pillow case and slept on it for the first night. In the morning, they packed up and had walked three or four miles before he realized that he’d left their most important possessions behind. Before they could decide what to do, they received an email message from their host. Don’t turn around, it said—we’ll meet you in the next town at the coffee shop.

Though the family’s experiences from their first night and morning had given them a good start, no one really knew how they’d hold up for that first day of walking, which took them up the French Pyrenees Mountains. “We were physically exhausted after walking just over six hours in rather muddy and steep terrain, but the beautiful views and small villages on the way made it all worthwhile,” said Rolando. “The next day we woke up rejuvenated and ready to walk again, and all my worries went away.”

Though each person carried under 15 pounds, the days could get long. Getting up at 6 or 6:30 so they could start walking at 7:00, the group tried to walk 6 or 7 hours most days—the longest day they walked 10. Each member of the party had times when they were challenged by blisters, ankle pain, or simply boredom. Still, Gina was amazed at how positive the group stayed. “We said, ‘I’m not giving up, I’m not quitting.’ That was what drove us. We just went one step at a time, one day at a time.”

Each night, the family would stay in a special pilgrim hostel known as an albergue, found in towns along the Camino nearly every five miles. Many are run by volunteer hospitaleros—seasoned pilgrims whose love for the Camino inspired them to return and devote spans of their life to it and its pilgrims. The cost for staying in these albergues ranges from 1 to 10 euros. “Most have communal sleeping rooms, so ear plugs to block out the snoring came in handy,” said Gina.

By the time they reached Santiago at the end of the Camino, many of their fellow pilgrims had started to feel like family. They had met people from all over the world, of all ages, each with a story to tell about why they’d undertaken the journey. “When we reached Santiago, we reunited with people we thought we’d never see again,” said Gina. “It was like a big family reunion, and we were all celebrating our accomplishments.” They have kept in contact with some even after returning home, as people began finding them on Facebook.

The day the Chaves family arrived in Santiago, there was a mass held for the pilgrims. The cathedral was filled with around 2,000 people, all listening to the priest give mass in Spanish. “There were a lot of young people in attendance who had been on the Camino, and the priest talked about the hope he had for them,” said Gina. “He said the real journey starts after the Camino. The important thing is what you take home, what you have learned about yourself and from others about what you can achieve and endure, and how you apply this to your life going forward.”

“For myself, it had been a long time since I’d been able to disconnect from work. The Camino helped me realize that my life had been out of balance. I want to keep the balance I found on the Camino”.

Gina and Rolando also valued the time spent together as a family. “It was great how we stayed positive and supportive of each other through struggles, injuries, rain, extreme heat, rocky roads, and incredible up-and-down mountains,” said Rolando. Gina added, “It was a real gift for us and the children to visit another country, meet so many people from around the world and learn about shared experiences. We realize that there is more that connects us. We all have similar questions about life and our purpose.”

Fulfilling his long-held dream has left Rolando with a sense of peace. “I still don’t like my diagnosis, but I’m more at peace with it,” he said. While before his Camino trek Rolando avoided going out in public alone, he has since started to go into stores when he needs to, and has played a pickup game of soccer. “I had been fighting against my condition, but I learned I need to accept that I’ll never be the way I was.”

Gina agreed. “You need to embrace what you have, and not chase what you had yesterday. Otherwise you’re not enjoying what you have today.”

Rolando is certainly embracing the present as the exercise the walk required helped him to recover something he had lost with Parkinson’s - his sense of smell. “I noticed after a few days of walking on the Camino that I could smell the flowers on the side of the trail. It was my small miracle!” His renewed sense of smell still continues even now that he is back in Iowa. “We saw so many roses in the towns on the Camino that we decided to plant more in our backyard to remind us of our experience.”

Rolando adds, “I would encourage anyone to explore exercise and live an active lifestyle with or without Parkinson’s disease. It doesn’t have to be an extreme event. Start with something small. Even with minor changes, you will notice the difference that it can make.”

Motivating signage along the Camino

Watching a scenic view along the pilgrimage

You need to embrace what you have, and not chase what you had yesterday.

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Past Events

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April was a month for spreading Parkinson’s Awareness around Iowa! Here are a couple of events that took place in the month of April.

April Parkinson’s Awareness Month

JUNe: Golf Outing, Beaver Creek, Grimes, IA

El Camino for the Cure Silent Auction, Des Moines, IA

APRIL: Proclamation signing with Governor American Parkinson Disease Association National Leadership Conference July 2013, Nashville, TNJuly

JUNe: Golf Outing, Beaver Creek, Grimes, IA

Parkinson’s advocates, Information and Referral Center Coordinator Crissanka Christadoss and Board Director Rich Mills

with Governor Terry Branstad

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2013 Parkinson’s Conference Overview This year’s Annual Parkinson’s Conference, “Strength Through Optimism,” took place on Friday, June 14, 2013 at the Lutheran Church of Hope in West Des Moines, IA. Over 500 attendees participated in the conference this year.

Our day began with Dr. Monique Giroux, Movement Disorders Specialist from Englewood, CO, who talked about the popular topic of holistic medicine. Laura Gentry, Laughter Yoga instructor, worked the attendees’ smiling muscles and provided some practical information on why laughing is good for one’s health. Dr. Ergun Uc, Movement Disorders Specialist from the University of Iowa, covered exercise research and things to take into consideration in regard to driving with Parkinson’s. Dr. Lynn K. Struck, Movement Disorders Specialist at UnityPoint Health in Des Moines, gave an informative presentation on Non-Motor Symptoms in Parkinson’s.

In our breakout sessions, we had a variety of topics and presentations this year: percussion and drumming, relaxation therapies, photography, palliative care, medications, speech and swallowing, deep brain stimulation, urinary dysfunction, assistive technology using the iPad, caregiving topics and physical therapy.

This year area exercise instructors and Iowa Chapter board directors Jen Voorhees and Becky Holmes presented a Delay the Disease class in the morning and afternoon that gave attendees a boost of energy and practical strategies for physical activity.

It was a day to encourage and learn from one another as well as connect and network with peers. Overall, another successful conference and lots of valuable information. Thank you to volunteers for assisting throughout the day and leading up to the day and to exhibitors for sharing their beneficial services. Additionally, a thank you to financial sponsors Teva, Medtronic, UCB, and US World Meds. Another thank you goes to Des Moines University, MetaBank and West Music for in-kind donations.

For videos of the keynote talks, visit www.apdaiowa.org.

Live it! Summer/Fall 2013

kudos

The Lost Cause Motorcycle Group, led by Chad and Kristen Pierson of Hubbard, Iowa, raised over $40,000 for the Iowa Chapter of the American Parkinson Disease Association. On Saturday, August 24, 2013 the group held their annual Shake, Rattle and Roll fundraiser, a motorcycle ride from Roland, IA to Kamrar, IA to Story City, IA. Motorcycle enthusiasts and supporters hopped on their bikes to enjoy a beautiful afternoon, which ended at Carousel Lanes in Story City. The event continued at Carousel Lanes with music, food and a silent auction. Chad Pierson was diagnosed with Parkinson’s in 2006. This is the fourth year that Chad and Kristen have dedicated this event toward raising funds for Parkinson’s research and awareness. This year they chose to give the funds to the Iowa Chapter of the APDA. The Chapter is most grateful for the Lost Cause riders and their dedication to finding a cure for Parkinson’s and easing the burden of the disease. Thank you to the Lost Cause riders, Chad and Kristen Pierson and to all Shake, Rattle and Rollers!

Special musical guest, Mick Beaman, came from the Arizona Chapter of the APDA to participate and entertain attendees. Thank you to Mick for your music and presence!

For more pictures, visit our Facebook page: facebook.com/IowaIandR

Shake, Rattle and RollMotorcycle Fundraiser

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This year’s Eastern Iowa Golf Classic for Parkinson’s Disease was held on August 17, 2013, at the Amana Colonies Golf Club in Amana, IA, by the Cedar Rapids Parkinson’s Foundation. There was great weather, food, friends, turnout and support!

eastern Iowa Golf Classic

2015

A REBUS is a picture representation of a name, word, or phrase. Each “rebus” puzzle box below portrays a com-mon word or phrase. Can you guess what it is? Answers are upsidedown below.

and riddlesrebus

art

I learned to paint as a freshman at Drake University in 1947. In 1988 I started painting with a Saturday morning sketch club started by Drake art instructors. We meet every Saturday morning, even in bad weather! If it is snowing or raining outside we still meet up, but we sit in our cars and paint.

When I paint, I forget about the time. I can start a painting and the next thing you know, it’s several hours later. I mainly paint with oils and I paint all sorts of things. I was diagnosed with Parkinson’s in 2009. The only thing Parkinson’s has affected, when it comes to my artwork, is having a steady hand. An unsteady hand, however, is helpful when I paint abstract pieces.

Age doesn’t have a thing to do with doing something you love or enjoy. Look at Grandma Moses! If you enjoy a hobby, just do it.

ArtAbility

Laurayne Robinette, 84, Urbandale, IA

Laurayne’s paintings inspired by the Saturday morning sketch club she attends in Des Moines

va ders try stand 2

faredce le vel

wineee3. out2. out1. out

Riddles to ponder...

1. I always run, but never walk. I have a bed, but I don’t sleep. I have a mouth, but I don’t eat.

2. When you put this in a heavy wooden box, the box will become lighter.

3. You hear my sound, you feel me when I move, but see me you never will.

4. I follow you all day long, but when the night or rain comes, I am all gone.

5. The more I dry, the wetter I get.

6. I am very heavy, but backwards, I’m not.

Rebus answers:1. space invaders 2. try to understand 3. red in the face4. split level 5. win with ease 6. outnumbered three to oneRiddle answers:1. a river 2. a hole 3. the wind 4. a shadow 5. a towel 6. ton

donors/acknowledgements

donors February – July 2013

• 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, Gayle Fopma, Denise Harlan, 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

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:

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In Memory of Earnie ArnoldDonor Name: Benson Family FoundationIn Memory of Mary Thomas Beck Donor Name: Mary Coats-CarrollIn Memory of Mary Lou FitzpatrickDonor Name: Jeff and Barbara Borts Connie Coy Phyllis Cremeens M.P. and M.A. Ficken John and Mary Ann Freeland Gene and Diane Haguewood Lori L. Hanson Brian and Julie Hoey Rosemary Hoyt Grover and Linda Kirkman Timothy and Sheryl Nichols Randy and Janet Pool Chris and Catherine Refsland Karen Schultz Reggie and Amy Stalzer John and Catherine Stroud Richard and Angie Stover Ralph Stowell Micahel and Mary WindersIn Memory of Laverne GardnerDonor Name: Peterseim & Beatty Funeral ServicesIn Memory of Patricia GraffDonor Name: Joe Carroll Family Patricia Bosler Shaff-Jane Charitable FundIn Memory of Helen Thompson HaupertDonor Name: Roger and Colleen NorgrenIn Memory of Rosa Hem Donor Name: Wisely-Foster Post 8865 VFW, Dick BaileyIn Memory of Irene JohnsonDonor Name: Joanne Lenox Fredrick and Marlene Mogle Jerry and Janet Roby Mark and Cynthia Tuttle In Memory of June KalsemDonor Name: Robert and Joan Ackermann Rev. Myrwood and Helen Bagne George and Suzanne Bens Doug and Linda Bledsoe M.D. and Beverly Berger Beth Black Robert and Shirley Brandser Paul and Phyllis Breddin Lucianne Crowley John and Lois Forney Dale and Julia Hagen Ann Detlefsen-Hoehle Ramona Holm

Thomas and Bonnie Holm Janice Hornocker Charles and Mary Beth Hutchinson Gary and Rebecca Ichalek Janis Dontje Johnson Joyce Lewis Cynthia Mitchell Roberta Nelson Willard and Helen Pratt Ronald and Shirley Sealine Dorothy Torkelson Laurence and Jane Torkelson Jeffrey and Laura Trachtman John and Joan WetherellIn Memory of Gary LienDonor Name: Janes and Judith AndersonIn Memory of Margaret “Boe””Peggy” McConkeyDonor Name: Gregory and Karen Alexander Jon and Robin Arnold Dr. Roger and Kim Ceilley Ricky and Holly Estell Stanley P. Evers Dwight Gilbride Paul and LuAnn Jones Eric and Kelli Kisgen Donald and Della McConkey Gary and Mary McVay Jeff Miller Kelly and Deb Murphy Jack and Lee Roach Cheryl Tharp Michael and Anna Valdez Tim and Judy West YIPS Support Group, West Des MoinesIn Memory of Marianne MashekDonor Name: Anne C. Cunam Joseph C. Mashek L & M Schubert Farms, Inc.In Memory of Kathryn NederhoffDonor Name: Erik and Jackie Bachman Carl HY Nederhoff D.L. and B.L. StevensonIn Memory of Wallace “Bud” PixleyDonor Name: Stephen and Carey Bruner Gene and Kay Carlson Dave and Martha Clement L.F. and Arlene Dooley Dennis and Nancy Emanuel Reva Gilliland Richard and Cheryl Hart Jack and Mae Marie Heinje William and Kathleen Henricksen Eric and Emily Hoffman George and Deb Hoguet Fred and Davie Ann Hutton Ted and Jan Inman Julie L. Lawrence David and Mary Leonard Byron and Janet Leu

acknowledgements

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

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Brooklyn Bear Creek Community FundDoris ChristyDebra FogleTom GiesenAngela GlassRobert HaszCindy KaneJack and Sue KirkJennifer O’Brien KoniorStephen and Dianne KrumbholzJim and Karen LeFleur

Allison MatherKristin S. MeyerFrederick and Patricia MillerRich MillsCaryl NelsonSandy ParksBrian SchultzAnne M. SilverMichael SmithBarbara StrackeUrbandale Lions ClubJennifer Voorhees

Donations:

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Wendy Lindell Charles and Linda Montgomery Al and Judy Nelson Steve Nelson Greg and Susan Pixley J.H. and J.R. Ragland William and Karen Reece Mary E. Sapp Jesse and Erica Schaaf Jonathan or Kris Sheldahl Robert Snell Rodger Teeter Warren and Cheryl Voelliger Jack or Carol WhiteIn Memory of Eugene R. PorterDonor Name: Iowa Heart Center PhysiciansIn Memory of Burt PowleyDonor Name: Donald and Susan Forsling Patrick FrankeIn Memory of Bert PruitDonor Name: Edwin and Inez McCarvilleIn Memory of Robert James QuinnDonor Name: Michael and Lynn Struck

In Memory of Chuck SimmonsDonor Name: Barry Evans Greg and Cathy Greiner Scott and Joan Hunt Catherine S. MooreIn Memory of Patricia “Pat” TrefzDonor Name: Rockwell Collins Bill and Doris Haeussler Family Kerri LinderwellIn Memory of Mary Verlee WellsDonor Name: Cheri Arneson Gail Drey Susan Orhon Robert Smith Kim Walton Verlee Wells MemorialIn Memory of Duane WoodDonor Name: Lillian ChristensenIn Honor of Jerome and Elaine BarnwellDonor Name: Brian and Brenda Barnwell Ellen Poplawski

In Honor of Curtis and Hardisty FamiliesDonor Name: Doug and Carol HardistyIn Honor of Crissanka ChristadossDonor Name: Grundy County Area Support Group In Honor of Ervin FopmaDonor Name: Larry and Trudy EgginkIn Honor of Bill and Corrine HinkleDonor Name: Martha AndersonIn Honor of Rich MillsDonor Name: Flagg Family Charitable FundPD Walkers Michael Kramer Susan J. Petersen The Pampered ChefBarbara Moore Golf OutingDonor Name: Jeff Altemeier American Agricultural Insurance Company Jim Beitzel

Mary Booth – Veridian Credit Union John or Jill Bouslog Chad & MiJung Cook Michael and Marla Earp David and Marjorie Gosden Joel and Karen Jacobsen Randy and Candy Jacobson Storey Kentworthy John and Mary Krumbholz James E. McCarthy Midwest Office Technology, Inc. Ronald and MaDonna Mitchelle Craig and Joyce Numedahl David and Marleen Patterson Service Master of Newton Janice K Sewright Michael and Lynn Struck United Services of Des Moines Wells Fargo Bank, N.A.

upcoming events and classes

Delay the Disease ClassesAtlantic - 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.Cedar Rapids - Stonebridge Church, Mondays and Fridays at 10:30 a.m., free, call (319) 431-5332.Clive - YMCA Healthy Living Center, payment required, call (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.comIowa City - 28 South Linn Street, payment required, for more information or questions please contact instructor Kris Cameron (319) 361-7673 or email renuyourlife@yahoo.comMuscatine - Muscatine Community YMCA, contact Anthony Krumbholz at (319)981-3321.South Sioux City, Nebraska - Norm Waitt Sr. YMCA in South Sioux City, payment required, contact Jacque Perez, Wellness Programs Coordinator, at jperez@nwsymca.org or (402) 404-8439.

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

events Call the Information and Referral Center at (877) 872-6386 for more information.September 26 - Michael J. Fox Show, Thursday, 8 p.m. on NBCOctober 1 - Tuesday, LSVT Big Educational Sessions by On With Life Outpatient Neuro Rehabilitationin Ankeny, choose a session to attend at 1 p.m. or 5 p.m. Call (515) 289-9662 or visit www.onwithlife.org. October 15 - Tuesday, 9 a.m.–1p.m. October Caregiver’s Brunch in Des Moines, Plymouth Congregational Church, 4126 Ingersoll Ave., Des Moines.November 1 - Friday, 9 a.m.–1p.m. NW Iowa Parkinson’s Disease Symposium, Hilton Garden Inn in Sioux City.

Iowa Community Credit UnionWells Fargo Community Support Campaign

Corporate Donations:

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sign language

StopThe sign for “stop” is made by extending your left hand, palm upward. Sharply bring your open right hand down to your left palm at a right angle.

© 2006, www.Lifeprint.com. Used with permission.

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linksand other resources

resources

Web LinksHere 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 ResourcesCaregiving Information .....................................................................................www.iowafamilycaregiver.orgAssistive Technology and possible funding sources........................................www.iowacompass.orgIowa Prescription Drug Corporation (prescription aid) ................................ www.iowapdc.orgEaster Seals Iowa Assistive Technology Center ............................................... www.eastersealsia.orgParkinson’s Disease - GeneralAmerican Parkinson’s Disease Association .....................................................www.apdaparkinson.orgAmerican Parkinson’s Disease Assn, Iowa Chapter .......................................www.apdaiowa.orgAmerican Parkinson Disease Young Onset Center .......................................www.youngparkinsons.orgParkinson’s Action Network ..............................................................................www.parkinsonsaction.orgAmerican Academy of Neurology ....................................................................www.aan.comThe Movement Disorder Society ......................................................................www.movementdisorders.orgLiving Well with Parkinson’s Disease ...............................................................www.pdplan4life.com National Institutes of Health: Parkinson’s Disease .........................................nihseniorhealth.govCaregiversNational Family Caregivers Association ..........................................................www.nfcacares.orgIowa State University Extension Family Caregiving ......................................www.extension.org/family+caregivingCoping with Caregiving ......................www.extension.purdue.edu/cfs/topics/hd/resources/CopingCaregiving.pdfListserves (online discussion groups)Parkinson’s Disease Blog Network ...................................................................www.parkinsonsblognetwork.comParkinson’s Information Exchange Network Online .......................................... www.parkinsons-information-exchange-network-online.com

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subscription information

Want a subscription to Live it! magazine?Complete this form, detach and mail with a check for $20 to:

Iowa Chapter of the APDAPO Box 507Waukee, IA 50263

Name

Address

City State Zipcode

Email

q Yes, I would like a subscription to the Iowa Parkinson Information and Referral Center magazine Live it!

q Included is a check for $20 made to the Iowa Chapter of the American Parkinson’s Disease Association.

Please check one of the following:q Diagnosedq Professionalq Family Member

q Check here if this is a change of address

Algona/Kossuth County Donna Mae Walker (515) 341-3440Ames/Story County Sue Trevillyan, setrevill@hotmail.com (515) 233-2089Atlantic/Cass County Jon Jordan, JJordan@wesleylife.org (712) 243-1850Bondurant/Polk County Renee LePera community@courtyard-estates.net (515) 250-0222Carroll/Carroll County Melissa Schultes mschultes@stanthonyhospital.org (712) 794-5815Cedar Rapids/Linn County St. Luke’s Hospital Resource Center Samantha White, LMSW WhiteSJ2@ihs.org (319) 369-8044Cedar Rapids/Linn County John Krumbholz Krummy68@yahoo.com (319) 350-7482Centerville/Appanose County Katy Paxton kpaxton@mercydesmoines.org (64) 437-3432Charles City/Floyd County Carol Quade, carol@fiai.net (641) 228-5053

Creston/Union County Myra Spindler (641) 344-9065Davenport/Scott County Eileen Benson (563) 332-6497Decorah/Winneshiek County Linda Klimesh klimeshl@winmedical.org (563) 387-3146Des Moines/Polk County Valerie Stickel-Diehl vstickel-diehl@mercydesmoines.org (515) 358-0002Dike/Grundy County Bill & Corrine Hinkle whinkle@mchsi.com (319) 989-2110Dubuque/Dubuque County Gerry Osterhaus gerryosty@gmail.com (563) 582-7313Dyersville/Dubuque County Catherine Tegeler spikesina123@yahoo.com (563) 875-7029Fairfield/Jefferson County Melissa Shafer (641) 472-3649Fontanelle/Adair County Lavon Lutz lutzsafarini@aol.com (641) 745-4044

Independence/Buchanan County Judy Hess (319) 334-2969Iowa City/Johnson County Judi Gust RobertMcCown@msn.com (319) 351-5248Marshalltown/Marshall County Joyce Hughes e-jhughes@hotmail.com (641) 752-0349Mason City/Cerro Gordo County Janelle Nevermann (641) 424-4277Muscatine/Muscatine County Wayne & Pat Corriell pat.corriell@gmail.com (563) 649-2285 John & Karen Schaub jschaub@machlink.com (563) 263-1866Newton/Jasper County Eloise Prater jeprater@iowatelecom.net (641) 791-1018Sioux Center/Sioux County Glenda Vanlaren Glenda.VanLaren@schospital.org (712) 722-8256Sioux City/Woodbury County Jack Sherrman, jespas@juno.com (712) 277-9337Spencer/Clay County Carolyn Kruger gck@smunet.net (712) 580-1219

Storm Lake/Buena Vista County Colleen Last, lastc@iw.net (712) 732-1925Vinton/Benton County Barb Cassens hbcassens@juno.com (319) 472-3178Washington/Washington County Amy Kleese Amy_Kleese3@hotmail.com (319) 653-5473Waterloo/Black Hawk County Terry Hertges Beno08@aol.com (319) 235-7118Waverly/Bremer County Jennifer Wolff jdwot01@hotmail.com (319) 290-9402 West Burlington/Des Moines County – Ruth Newton, newtfarm@frontiernet.net (217) 453-2481West Des Moines/Polk County Mary Adkins, bjamla@aol.com (515) 480-4090West Des Moines/Polk CountyLaDona Molander ladonamolander1@msn.com (515) 953-8474Trenton, MO Gloria Koon, (660) 485-6558

support groups

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!

A subscription also includes a membership to the Iowa Chapter of the American Parkinson’s Disease Association.

American Parkinson Disease AssociationIowa Parkinson Disease Information and Referral CenterUnityPoint Health – Des Moines1200 Pleasant Street, E524Des Moines, IA 50309

Thank you for reading Live it! Magazine,

and for your support

of the Parkinson’s disease community.