A Resource for Iowans with Parkinsonâ€™s Disease and those who care for them.
volume 4 w issue 2 summer/fall 2013
Live it! is a publication of the Iowa Parkinson Disease Information and Referral Center
El Camino for the Cure A family motivates themselves and others with a once-in-a-lifetime challenge
3 3 4 5
l l l l
From the Staff Contact Us From Our Medical Director Nutrition
6 7 8
Tools You Can Use l Cycle for Neuro Wellness l Cover Story l
El Camino for the Cure
Silent Auction, Proclamation Signings, Conference
Lost Cause Motorcycle group, Eastern Iowa Golf Classic
15 16 17 18 19
l l l l l
Rebus, Riddles and ArtAbility Donors/Acknowledgements Upcoming Events, Delay the Disease Classes Links, Resources and Sign Language Chapter Information, Subscription Form
Scan the QR code at left to go directly to apdaiowa.org
Live it! is also available online! Visit www.apdaiowa.com for an electronic copy. Also, follow us on Facebook (www.facebook.com/IowaIandR) and Twitter @IowaParkinson (twitter.com/IowaParkinson)
Table of Contents
15 Reader Submissions
Live it! magazine is intended to be a voice for the Parkinson’s disease community, and we are pleased to consider article, art and photo submissions for future issues from our readers. Please send your submission requests to Iowa Parkinson’s Disease Information and Referral at UnityPoint Health – Des Moines, 1200 Pleasant St. E-524, Des Moines, Iowa 50309, with Live it! on the attention line, or email them to email@example.com. 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
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.
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 Board
Lynn Struck, M.D., Medical Director Crissanka Christadoss, Coordinator, Iowa Parkinson Disease Information and Referral Bruce Carr Vicki Ingham Linda Jordening Patrick Vaassen
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 contact us:
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.
All material related to Parkinson’s disease contained in this magazine is solely for the information of the reader. It should not be used for treatment purposes, but rather for discussion with the patient’s physician. Specific articles reflect the opinion of the writer and are not necessarily the opinion of the editorial staff, the Information and Referral Center, the medical director of the Center, The Iowa Chapter of APDA or the APDA.
Iowa Parkinson Disease Information and Referral Center UnityPoint Health – Des Moines 1200 Pleasant Street E-524 , Des Moines, Iowa 50309 (877) 872-6386 www.apdaiowa.org
Lynn K. Struck, M.D. Neurologist Physician Specialty Clinic UnityPoint Health – Des Moines
medical director The Iowa Parkinson’s Disease Information and Referral Center and Live it! magazine are privileged to have board certified clinical neurologist Lynn Struck, MD, as our advisory Medical Director. Dr. Struck is on staff with UnityPoint Health Physicians, Des Moines, and is a leading expert in movement disorders in Iowa. She has focused her career on advances in treatment of her many patients with Parkinson’s disease and ongoing research to find better treatments and, ultimately, a cure.
Statement of Copyright The entire contents of this magazine are copyrighted under United States copyright laws by the Iowa Parkinson’s Disease Information and Referral Center. All rights reserved. Written permission from the Iowa Parkinson’s Disease Information and Referral Center is required for reposting, republishing or retransmitting any material in this publication. What You Can Do Without Written Permission Articles may be reproduced only if the text of the article is reproduced in its entirety and attributed to the Iowa Parkinson’s Disease Information and Referral Center. What You Cannot Do Without Written Permission Reproduce any Iowa Parkinson’s Disease Information and Referral Center materials within any commercial publication or for any commercial purpose. Print more than a single copy for your personal use.
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:
Focus on Fruits
Get Your Calcium Rich Foods
Try It! Satisfy your sweet tooth with some of these juice options: Berries with non-fat plain yogurt, apples with sugar- free caramel, dried mango.
Chose low-fat milk options when possible. Try It! Low-fat or fat-free Greek yogurt or cottage cheese.
Texture adaptations: Thickened 100% juice, soft ripe fruit like bananas, applesauce, or canned fruit in light syrup.
Texture adaptations: Mashed potatoes made with dry-milk powder, yogurt, thickened milkshakes or smoothies made with skim or low-fat milk.
Vary Your Veggies Add color to your plate! Try It! Asparagus, butternut squash, red bell peppers.
Go Lean With Protein
Texture adaptations: Thickened vegetable juice, soft cooked, steamed vegetables free from seeds, pureed vegetables free from seeds.
Try It! Quinoa, a whole grain and complete source of protein, nuts, or fish.
Protein has been known to provide a satiety (fullness) effect.
Texture adaptations: Pureed chicken, scrambled eggs, ground poultry or other lean meat products.
Make Half Your Grains Whole Grains Try It! Whole wheat couscous, bulgur, whole wheat pasta and bread. Texture adaptations: Oatmeal or thickened creamof-wheat, soft whole wheat crackers, whole wheat pancakes.
the right tools for the job
See it, Touch it, Try it
at a Demonstration Center!
By Gary Johnson, ATP - Iowa Program for Assistive Technology
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
St. Ambrose: ceiling track lift (above) and elevator (below)
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. Easter Seals: Kitchen with accessible cabinets and stove
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 firstname.lastname@example.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, email@example.com 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.
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 NeuroWellness 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.
t the Be sure to check ou ” classes “Delay the Disease on page 17. Live it!
El Camino for the Cure
A family motivates themselves and others with a once-in-a-lifetime challenge From 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).
The Chaves family
Gina, Rolando, Braden, Kelsey and Nick sit down at a communal meal
While the pilgrimage, which is tackled on foot, would be difficult for almost anyone, Rolando faced additional challenges. Diagnosed with Parkinsonâ€™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. Rolandoâ€™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. Kelseyâ€™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
Only 790 Kilometers to go!
... and all my worries went away.
miles per day. To prepare, Rolando worked with a personal trainer for a year, and he and Gina went on walks almost daily.
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.
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
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.
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.
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.
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.”
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.
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.”
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.”
You need to embrace what you have, and not chase what you had yesterday. “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.”
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.”
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.”
Watching a scenic view along the pilgrimage
Motivating signage along the Camino
Parkinson’s Awareness Month
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.
JUNE: Golf Outing, Beaver Creek, Grimes, IA
JUNE: Golf Outing, Beaver Creek, Grimes, IA El Camino for the Cure Silent Auction, Des Moines, IA
APRIL: Proclamation signing with Governor
Parkinson’s advocates, Information and Referral Center Coordinator Crissanka Christadoss and Board Director Rich Mills with Governor Terry Branstad
American Parkinson Disease Association National Leadership Conference July 2013, Nashville, TN
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 NonMotor Symptoms in Parkinson’s.
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.
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. Live it!
Shake, Rattle and Roll
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
Eastern Iowa Golf Classic
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!
A REBUS is a picture representation of a name, word, or phrase. Each “rebus” puzzle box below portrays a common word or phrase. Can you guess what it is? Answers are upsidedown below.
try stand 2
3. out 2. out 1. out
ArtAbility 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.
Laurayne Robinette, 84, Urbandale, IA
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.
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.
Laurayne’s paintings inspired by the Saturday morning sketch club she attends in Des Moines 15 20
Rebus answers: 1. space invaders 2. try to understand 3. red in the face 4. split level 5. win with ease 6. outnumbered three to one Riddle answers: 1. a river 2. a hole 3. the wind 4. a shadow 5. a towel 6. ton
February – July 2013
Many companies and corporations will match your taxdeductible gift and double or triple the amount contributed to continue the APDA mission “To ease the burden and find a cure.” Gifts can be in the memory of a loved one, friend or to celebrate a special occasion. A card is sent to the designated person telling them of your generosity and thoughtfulness. Please send your donations to: • Iowa Chapter of the American Parkinson Disease Association, Inc. PO Box 507, Waukee, IA 50263 www.apdaiowa.org Iowa Chapter of the APDA Co-Presidents: Gina Chaves and John Krumbholz Directors: Rolando Chaves, Ervin Fopma, 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
The Iowa Parkinson Disease Information and Referral Center is grant funded by American Parkinson Disease Association.
Donations: Brooklyn Bear Creek Community Fund Doris Christy Debra Fogle Tom Giesen Angela Glass Robert Hasz Cindy Kane Jack and Sue Kirk Jennifer O’Brien Konior Stephen and Dianne Krumbholz Jim and Karen LeFleur 16
Allison Mather Kristin S. Meyer Frederick and Patricia Miller Rich Mills Caryl Nelson Sandy Parks Brian Schultz Anne M. Silver Michael Smith Barbara Stracke Urbandale Lions Club Jennifer Voorhees
In Memory of Earnie Arnold Donor Name: Benson Family Foundation In Memory of Mary Thomas Beck Donor Name: Mary Coats-Carroll In Memory of Mary Lou Fitzpatrick Donor 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 Winders In Memory of Laverne Gardner Donor Name: Peterseim & Beatty Funeral Services In Memory of Patricia Graff Donor Name: Joe Carroll Family Patricia Bosler Shaff-Jane Charitable Fund In Memory of Helen Thompson Haupert Donor Name: Roger and Colleen Norgren In Memory of Rosa Hem Donor Name: Wisely-Foster Post 8865 VFW, Dick Bailey In Memory of Irene Johnson Donor Name: Joanne Lenox Fredrick and Marlene Mogle Jerry and Janet Roby Mark and Cynthia Tuttle In Memory of June Kalsem Donor 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 Wetherell In Memory of Gary Lien Donor Name: Janes and Judith Anderson In Memory of Margaret “Boe””Peggy” McConkey Donor 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 Moines In Memory of Marianne Mashek Donor Name: Anne C. Cunam Joseph C. Mashek L & M Schubert Farms, Inc. In Memory of Kathryn Nederhoff Donor Name: Erik and Jackie Bachman Carl HY Nederhoff D.L. and B.L. Stevenson In Memory of Wallace “Bud” Pixley Donor 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
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 White In Memory of Eugene R. Porter Donor Name: Iowa Heart Center Physicians In Memory of Burt Powley Donor Name: Donald and Susan Forsling Patrick Franke In Memory of Bert Pruit Donor Name: Edwin and Inez McCarville In Memory of Robert James Quinn Donor Name: Michael and Lynn Struck
In Memory of Chuck Simmons Donor Name: Barry Evans Greg and Cathy Greiner Scott and Joan Hunt Catherine S. Moore In Memory of Patricia “Pat” Trefz Donor Name: Rockwell Collins Bill and Doris Haeussler Family Kerri Linderwell In Memory of Mary Verlee Wells Donor Name: Cheri Arneson Gail Drey Susan Orhon Robert Smith Kim Walton Verlee Wells Memorial In Memory of Duane Wood Donor Name: Lillian Christensen In Honor of Jerome and Elaine Barnwell Donor Name: Brian and Brenda Barnwell Ellen Poplawski
In Honor of Curtis and Hardisty Families Donor Name: Doug and Carol Hardisty In Honor of Crissanka Christadoss Donor Name: Grundy County Area Support Group In Honor of Ervin Fopma Donor Name: Larry and Trudy Eggink In Honor of Bill and Corrine Hinkle Donor Name: Martha Anderson In Honor of Rich Mills Donor Name: Flagg Family Charitable Fund PD Walkers Michael Kramer Susan J. Petersen The Pampered Chef Barbara Moore Golf Outing Donor 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.
Corporate Donations: Iowa Community Credit Union Wells Fargo Community Support Campaign
upcoming events and classes
Delay the Disease Classes Atlantic - Heritage House, free. Contact Jon Jordan at
(712) 243-1850 or JJordan@wesleylife.org for information.
Carroll - Every Thursday at 11 a.m. at St. Anthony’s Hospital in Carroll. Contact Tabetha Ernster at (712) 792-3581 or Melissa Schultes at (712) 794-5815.
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
Cedar Rapids - Stonebridge Church, Mondays and Fridays
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.
Clive - YMCA Healthy Living Center, payment required, call
Des Moines - Wesley Acres, free, every Wednesday at
Call the Information and Referral Center at (877) 872-6386 for more information.
at 10:30 a.m., free, call (319) 431-5332. (515) 226-9622 for more information.
1 p.m., pre-registration is required, call (515) 271-6500 for more information.
Dike - Contact Agape Therapy for more information at (319) 277-3166 or www.agapetherapy.com
Iowa City - 28 South Linn Street, payment required, for
more information or questions please contact instructor Kris Cameron (319) 361-7673 or email firstname.lastname@example.org
September 26 - Michael J. Fox Show, Thursday, 8 p.m. on NBC October 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
Muscatine - Muscatine Community YMCA, contact
Brunch in Des Moines, Plymouth Congregational Church, 4126 Ingersoll Ave., Des Moines.
South Sioux City, Nebraska - Norm Waitt Sr. YMCA in
November 1 - Friday, 9 a.m.–1p.m. NW Iowa Parkinson’s Disease Symposium, Hilton Garden Inn in Sioux City.
Anthony Krumbholz at (319)981-3321.
South Sioux City, payment required, contact Jacque Perez, Wellness Programs Coordinator, at email@example.com or (402) 404-8439.
and other resources
8 Web Links
Here are a few helpful websites. See a more complete list, including information on clinical trials, prescription assistance, catalogs for adaptive equipment and clothing, and more at www.apdaiowa.org.
Parkinson’s Disease - Iowa Statewide Resources
Caregiving Information ......................................................................................www.iowafamilycaregiver.org Assistive Technology and possible funding sources........................................www.iowacompass.org Iowa Prescription Drug Corporation (prescription aid)................................. www.iowapdc.org Easter Seals Iowa Assistive Technology Center................................................ www.eastersealsia.org
Parkinson’s Disease - General
American Parkinson’s Disease Association ......................................................www.apdaparkinson.org American Parkinson’s Disease Assn, Iowa Chapter ........................................www.apdaiowa.org American Parkinson Disease Young Onset Center ........................................www.youngparkinsons.org Parkinson’s Action Network ...............................................................................www.parkinsonsaction.org American Academy of Neurology .....................................................................www.aan.com The Movement Disorder Society .......................................................................www.movementdisorders.org Living Well with Parkinson’s Disease ................................................................www.pdplan4life.com National Institutes of Health: Parkinson’s Disease ..........................................nihseniorhealth.gov
National Family Caregivers Association...........................................................www.nfcacares.org Iowa State University Extension Family Caregiving .......................................www.extension.org/family+caregiving Coping with Caregiving ......................www.extension.purdue.edu/cfs/topics/hd/resources/CopingCaregiving.pdf
Listserves (online discussion groups)
Parkinson’s Disease Blog Network ....................................................................www.parkinsonsblognetwork.com Parkinson’s Information Exchange Network Online ........................................... www.parkinsons-information-exchange-network-online.com
sign language © 2006, www.Lifeprint.com. Used with permission.
Stop The 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.
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!
Algona/Kossuth County Donna Mae Walker (515) 341-3440
Creston/Union County Myra Spindler (641) 344-9065
Ames/Story County Sue Trevillyan, firstname.lastname@example.org (515) 233-2089
Davenport/Scott County Eileen Benson (563) 332-6497
Atlantic/Cass County Jon Jordan, JJordan@wesleylife.org (712) 243-1850
Decorah/Winneshiek County Linda Klimesh email@example.com (563) 387-3146
Bondurant/Polk County Renee LePera firstname.lastname@example.org (515) 250-0222 Carroll/Carroll County Melissa Schultes email@example.com (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 Centerville/Appanose County Katy Paxton firstname.lastname@example.org (64) 437-3432 Charles City/Floyd County Carol Quade, email@example.com (641) 228-5053
Des Moines/Polk County Valerie Stickel-Diehl firstname.lastname@example.org (515) 358-0002 Dike/Grundy County Bill & Corrine Hinkle email@example.com (319) 989-2110 Dubuque/Dubuque County Gerry Osterhaus firstname.lastname@example.org (563) 582-7313 Dyersville/Dubuque County Catherine Tegeler email@example.com (563) 875-7029 Fairfield/Jefferson County Melissa Shafer (641) 472-3649 Fontanelle/Adair County Lavon Lutz firstname.lastname@example.org (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 email@example.com (641) 752-0349 Mason City/Cerro Gordo County Janelle Nevermann (641) 424-4277 Muscatine/Muscatine County Wayne & Pat Corriell firstname.lastname@example.org (563) 649-2285 John & Karen Schaub email@example.com (563) 263-1866 Newton/Jasper County Eloise Prater firstname.lastname@example.org (641) 791-1018 Sioux Center/Sioux County Glenda Vanlaren Glenda.VanLaren@schospital.org (712) 722-8256 Sioux City/Woodbury County Jack Sherrman, email@example.com (712) 277-9337 Spencer/Clay County Carolyn Kruger firstname.lastname@example.org (712) 580-1219
Storm Lake/Buena Vista County Colleen Last, email@example.com (712) 732-1925 Vinton/Benton County Barb Cassens firstname.lastname@example.org (319) 472-3178 Washington/Washington County Amy Kleese Amy_Kleese3@hotmail.com (319) 653-5473 Waterloo/Black Hawk County Terry Hertges Beno08@aol.com (319) 235-7118 Waverly/Bremer County Jennifer Wolff email@example.com (319) 290-9402 West Burlington/Des Moines County – Ruth Newton, firstname.lastname@example.org (217) 453-2481 West Des Moines/Polk County Mary Adkins, email@example.com (515) 480-4090 West Des Moines/Polk County LaDona Molander firstname.lastname@example.org (515) 953-8474 Trenton, MO Gloria Koon, (660) 485-6558
A subscription also includes a membership to the Iowa Chapter of the American Parkinson’s Disease Association.
Want a subscription to Live it! magazine? Complete this form, detach and mail with a check for $20 to: 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.
Iowa Chapter of the APDA PO Box 507 Waukee, IA 50263 Name Address
Please check one of the following: q Diagnosed q Professional q Family Member q Check here if this is
a change of address
City State Zipcode Email
American Parkinson Disease Association Iowa Parkinson Disease Information and Referral Center UnityPoint Health â€“ Des Moines 1200 Pleasant Street, E524 Des Moines, IA 50309
for reading Live it! Magazine, and for your support of the Parkinsonâ€™s disease community.
Cover story is about Gina and Rolando Chaves, Iowa Chapter Board members, who did a 500 mile walk/pilgrimage through Northern Spain.