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Spring 2013 - Live It
Featuring Bill and Corinne Hinkle and celebrating Parkinson's Awareness Month
! A Resource for Iowans with Parkinsonâ€™s Disease and those who care for them. volume 4 w issue 1 spring 2013 LiveIt! is a publication of the Iowa Parkinsonâ€™s Disease Information and Referral Center To the Front Step and Beyond Finding Ways to Keep on Keeping On Bill and Corrine Hinkle ! 5 table of contents 3 3 4 5 l l l l From the Staff Contact Us From Our Medical Director Ask the Experts A Fresh Start: Nine Simple Tips to Simplify Your Shopping Process 6 6 Cover Story l 9 To the Front Step and Beyond, Finding Ways to Keep on Keeping On 9 10 Annual Parkinson’s Disease Conference l Chapter Information l El Camino for the Cure 11 11 Exercise Classes in Iowa l Kudos l 10 Parkinson’s Action Network Forum 12 13 14 15 l l l l Word Search and ArtAbility Donors/Acknowledgements Links and Resources Support Groups and Subscription Information Scan the QR code at left to go directly to apdaiowa.org Live it! online Live it! is also available online! Visit www.apdaiowa.com for an electronic copy. Also, follow us on Facebook (www.facebook.com/IowaIandR) and Twitter @IowaParkinson (twitter.com/IowaParkinson) 2 Table of Contents 12 Reader Submissions Live it! magazine is intended to be a voice for the Parkinson’s disease community, and we are pleased to consider article, art and photo submissions for future issues from our readers. Please send your submission requests to Iowa Parkinson’s Disease Information and Referral at Iowa Health – Des Moines, 1200 Pleasant St. E-524, Des Moines, Iowa 50309, with Live it! on the attention line, or email them to 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 It is that time of year again when Spring and Parkinson’s Awareness Month collide! The cover story in this issue features Corinne and Bill Hinkle of Dike, Iowa. They are both support group leaders in Dike and are active advocates in the Parkinson’s community. They share their journey from Bill’s diagnosis in 2005 to today. Speaking of active advocates, you are an advocate, too! Here are some simple ways to spread awareness and be involved in the Parkinson’s community during the month of April and beyond: 1. Get a proclamation signed by your city or town council. Download a template from www.apdaiowa.org and see if you are still able to get into your city or town council meeting. 2. Write a letter to the editor of your local newspaper that explains the impact Parkinson’s has made on your life. See a template for a letter to the editor at www.apdaiowa.org. 3. Attend a support group. There are 35 support groups in the state of Iowa; if you would like to get to know others in your area and learn more about Parkinson’s, join a support group. No support group in your area? Call the Information and Referral Center, we can help get you started. 4. Download a caregiver or Parkinson’s emergency ID card from the website or order some from the Information and Referral Center. 5. Volunteer at our upcoming June conference (see page 9 for more information) Live it! Staff Medical Director: Lynn Struck, M.D. Managing Editor: Crissanka Christadoss Editors: Linda Jordening and Vicki Ingham Contributing Writers: Stephanie Blaser and Courtney Blomme 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 6. Help ease the burden of Parkinson’s disease and find a cure. Look for opportunities to help with fundraising for the Iowa Chapter of the American Parkinson Disease Association or your favorite Parkinson’s organization. 7. Letting people know about the Iowa Chapter of the American Parkinson Disease Association; help us spread the word. We are a resource for information, knowledge and support. Please visit our website for activities taking place in the month of April or contact the Information & Referral Center for more information. 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. Disclaimer: All material related to Parkinson’s disease contained in this magazine is solely for the information of the reader. It should not be used for treatment purposes, but rather for discussion with the patient’s physician. Specific articles reflect the opinion of the writer and are not necessarily the opinion of the editorial staff, the Information and Referral Center, the medical director of the Center, The Iowa Chapter of APDA or the APDA. Iowa Parkinson Disease Information and Referral Center Iowa Health – Des Moines 1200 Pleasant Street E-524 , Des Moines, Iowa 50309 (877) 872-6386 www.apdaiowa.org 8 Live it! Spring 2013 3 Lynn K. Struck, M.D. Neurologist Physician Specialty Clinic Iowa Health – Des Moines from our medical director The Iowa Parkinson’s Disease Information and Referral Center and LiveIt! magazine are privileged to have board certified clinical neurologist Lynn Struck, MD as our advisory Medical Director. Dr. Struck is on staff with Iowa Health Physicians, Des Moines, and is a leading expert in movement disorders in Iowa. She has focused her career on advances in treatment of her many patients with Parkinson’s disease and ongoing research to find better treatments and, ultimately, a cure. Copyright Statement: 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. Prodromal Phase of Parkinson Disease Years before Parkinson disease is actually diagnosed by a physician, there are often subtle motor signs that can be seen. These include slowing of fine hand movements, changes in walking patterns, stiffness, reduced arm swing, tremor and balance problems. We are trying to identify specific motor signs in this phase, referred to as the prodromal phase, that would allow us to make a Parkinson’s diagnosis earlier. This will allow us to better understand disease progression and potentially serve as a marker in neuroprotective trials for Parkinson’s disease. These motor manifestations are nonspecific and are commonly seen in the elderly population. It has been reported that these motor signs can occur in up to 40 percent of individuals in their 70s and 80s. There is a progressive loss of dopamine nerve cells in Parkinson’s disease. The loss of dopamine causes the motor symptoms seen in Parkinson disease. It is currently believed that the classic motor signs sufficient to diagnose Parkinson disease are only noticeable when the dopamine nerve cell loss reaches about 50 percent and the amount of dopamine produced is reduced by 60 to 70 percent. It has been found that patients have a compensatory mechanism which can mask these clinical symptoms and make it difficult to identify and evaluate early in the disease. We currently do not have precisely defined motor signs to monitor for, but this is an active area of research. As mentioned, it may allow us earlier detection and may be very important in treatment/research trials. 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. 4 8 This icon indicates more information is available at the featured Web link. ask the experts A Fresh Start: Nine Simple Tips to Simplify Your Shopping Process By Stephanie Blaser and Courtney Blomme, Iowa State University Dietetics Program, Food Science and Human Nutrition Department It is no secret that going to the grocery store can be a chore. However, shopping on a regular basis can positively impact trying to eat well. Having healthy food options on hand makes meal planning easier and can help avoid the feelings of frustration that an empty pantry can bring. This spring, freshen up your shopping strategies to bring the joy back into shopping for that life-sustaining food you need! Before Heading to the Store At the Store 1. Organize your Storage In this season of spring cleaning, do not overlook your own kitchen. An organized kitchen creates a space you can enjoy and eases the meal preparation process immensely. Split this possibly daunting task over several days. Dedicate just ten minutes a day to a different part of the room (refrigerator, freezer, cupboards, drawers), and you will be amazed at the results. 5. Learn the Layout If this is a new store for you, take a few minutes to evaluate the store’s floor plan. Understanding the layout of the store will help speed up future shopping trips. 2. Plan Your Meals Meal planning does not have to be complicated, and it makes grocery shopping much easier. Decide for yourself how many meals you would like to plan for the week and pick out recipes accordingly. Consider using convenience food items if they will help you get the meal on the table; there is no need to be ashamed of “semi-homemade” meals. Whether you love to cook or avoid it at all costs, adding a new (but easy!) meal or snack to your week can also make grocery shopping more fun. 3. Create the List Now take some time to write down what items you need, taking into consideration both short and long term needs. Organize the list based on the layout of the store; this will help you navigate the store more efficiently. Following the store’s layout will also allow you to put cold items in your cart last, so they are not sitting out at room temperature too long before checking out. 4. Have a Snack The shopping trip will take some energy, so power up with a good snack before you go! This will help give you strength to conquer the store. 6. Plan for Produce Fresh fruits and vegetables are notorious for going bad sooner than we planned. Avoid the waste by being sure that you have a specific plan for when you will be preparing that produce. Consider frozen fruits and vegetables as a way to save cost and not be concerned with spoilage. Also, if you have been experiencing constipation, buying and consuming foods high in fiber, such as fruits and vegetables, may help. 7. Allow for Surprise Finds There is always something new at the store that catches your eye or something that happens to look extra delicious that day. Consider purchasing a new item to add variety and enjoyment to your eating! Back at Home 8. Pre-Prep Produce After putting away your groceries in your now-organized kitchen, take a look at your produce purchases. Do any need to be stored in a special way? Would it be easier if you washed and cut up some of it now to make it easier to eat later? A small amount of time now could save time later and ensure you benefit from your nutritious selections. This is especially helpful for produce such as pineapples or cantaloupe, where the preparation can seem daunting. 9. Smile! You did it! Congratulations on a trip well planned and a contribution to your eating for good health! Live it! Spring 2013 5 ! cover story To the Front Step and Beyond Finding Ways to Keep on Keeping On ve t! In November of 2012, Bill Hinkle walked out the front door, several blocks down the street, and picked up the newspaper. An everyday occurrence for most people, this simple act filled him with a great sense of accomplishment. Just a week earlier, Bill’s Parkinson’s had made it difficult to walk around the house with two walking sticks. He and his wife Corrine had been considering a wheelchair. Bill refers to his improvement as “getting normal” rather than “getting better.” He had received treatment in Denver, Colorado, that allowed him to do simple things he never thought he’d be able to do again. What Corrine noticed the most were the returning facial expressions—quirks that she’d almost forgotten existed. LiVE But the Hinkles emphasize that their real story is the story of the people they’ve met and the experiences they’ve had along the way. A strong family When Bill was diagnosed with Parkinson’s disease in January 2005, he and Corrine had been married 44 years. They’d met at the milk machine in the cafeteria of William Penn University in Oskaloosa. Bill had come from his home state of Pennsylvania to Iowa, the state with “nothing but blizzards,” according to his grandmother. Corrine had grown up in nearby New Sharon. They were married while still in school; Corrine graduated a year ahead of him, and got a teaching job in Grinnell. For a year, they lived together in Grinnell, and Bill commuted back to Oskaloosa for classes, student teaching, and football practices. After Bill’s graduation, they both taught in Grinnell for two more years before moving to Dike, where they have lived ever since. Bill taught sixth grade and coached everything “except wrestling” at the school, including starting a girls’ cross country and track team. Corrine taught fourth and fifth graders for a total of 35 years. According to Bill, she was the kind of teacher everyone hoped they’d get. “People jockeyed for a position in her class,” he said. 6 Corrine and Bill Hinkle The Hinkles have three children, two boys and a girl. They loved to travel and made great memories traveling around the country together. During these years, Bill developed a love for road biking, a love which he passed on to his daughter Nadine, their middle child. As a young girl, she watched him participate in the Register’s Annual Great Bike Ride Across Iowa (RAGBRAI), having fun and making good friends. She took her first “long” bike ride when she was about ten. With a school friend, decked out in what she thought was the coolest biking gear, Nadine rode 40 to 50 miles from Dike to Eldora—with dad following along in the family’s Suburban, ready to offer support if needed. In high school and college, Nadine rode in RAGBRAI alongside her dad several times. Years later, when Bill was diagnosed with Parkinson’s, Nadine would use this shared love for biking to help support him. Their sons, Nathan, who is the eldest, and Jordan, the youngest, also contribute a great deal in helping their parents. Nathan lives in Cedar Falls and has a daughter, Ava; Jordan and his sons, Ashton and Jaxson, live in Marshalltown. Nathan and Jordan help with yard chores and activities that require heavy lifting around the Hinkles’ home. “They are all there to encourage Bill and help out as much as they can. Our grandchildren have picked up coaching techniques for Grampa and always know where to find the walking stick, even if it is because they were just playing with it!” says Corrine. Learning to live with Parkinson’s There came a time when Bill noticed he was having more trouble finishing RAGBRAI. There were other troubling signs as well. As church treasurer, he found it was becoming more difficult to sign checks. It was also taking him longer to sort mail at the post office, where he was then working. In January 2005, Bill was diagnosed with Parkinson’s disease, and he retired in September. Bill and Corrine were not completely new to the disease. A good friend, Maureen, had been diagnosed with Parkinson’s earlier, and they had watched her struggle with it. Corrine, in fact, had been a caregiver for Maureen— they’d hang out together, and Corrine would help her shop. Both Bill and Corrine remember the pain Maureen felt for them the day they told her Bill’s diagnosis. She knew what they’d be facing on the road ahead. Maureen did give them the inspiration to meet the disease head-on. When Maureen was diagnosed, there was no support group, and very little knowledge available for her. The Hinkles decided to become advocates for themselves and others. As they visited the offices of doctors in Iowa who treated Parkinson’s, they noticed there was no information about it in the waiting rooms. Though they met many doctors and nurses who were caring and conscientious, the Hinkles often felt they were educating the professionals. To learn about the most up-to-date research and treatment practices and to meet others in their situation, they attended the annual Parkinson’s conference in Des Moines. There they met Sam Erwin, then coordinator of the Iowa Parkinson Disease Information and Referral Center. They were put in contact with movement disorder specialists in the state, such as Doctor Lynn Struck. As they learned more, they looked for a way to share their knowledge with others. They first started a support group for PD in Dike. With donated funds, they also supplied every library in Grundy County with books and pamphlets on PD. Donations have also helped defray the cost of attending conferences for some members of their support group and getting an exercise therapist trained to lead a Parkinson’s exercise class, Delay the Disease, in Dike. They also emphasize the importance of research, and fundraising to finance it. “Hope is fine, but it’s the dirty dollar bill that gets things going,” says Bill. Nadine has embraced this philosophy wholeheartedly, participating in biking fundraisers. For several years after his diagnosis, Bill participated in Pedaling for Parkinson’s in RAGBRAI. When he was no longer able to do so, Nadine picked up the mantle and rode in honor of her dad. She was overwhelmed with the support shown for both her and her dad—in one year, she raised over $5,000 for Pedaling for Parkinson’s, which supports Parkinson’s research and education. In June of 2012, Nadine participated in Ride the Rockies as part of the Davis Phinney Foundation for Parkinson’s Team. She raised around $4,100, and enjoyed telling her dad about the experience. “Ride the Rockies was on my dad’s Bucket List, and now I can help give him a taste of it,” says Nadine. She plans to participate in Ride the Rockies in 2013 as well. A new beginning In November of 2011, Bill underwent deep brain stimulation (DBS) surgery. However, he and Corrine were not totally satisfied with the results – Bill was falling while walking even more often. His family was worried that it was only a matter of time before he was seriously injured in a fall. Despite his condition, Bill and Corrine travelled to Colorado for the Victory Summit conference put on by the Davis Phinney Foundation in November 2012. Nadine had moved to Colorado after Bill gets his deep brain stimulator programmed by graduating from Sierra Farris, a deep brain stimulation specialist college and attended the conference with them. There they met doctors, specialists, others with PD, and Davis Phinney himself. Phinney, an Olympic-winning cyclist, had been diagnosed with early-onset Parkinson’s in 2000 and started his foundation to raise money to support programs and research, as well as spread information and tools to help people with Parkinson’s and their caregivers manage the disease. The Hinkles also met Sierra Farris, a Physician Assistant and Deep Brain Stimulation specialist. Farris, who works at the Movement and Neuroperformance Center in Denver, listened to Bill’s troubles with the DBS surgery and recommended that he see her. Though Bill and Live it! Spring 2013 7 ! cover story (continued) Corrine weren’t sure it would be worth it, Nadine convinced them to go. “She told us, ‘That car is not leaving this state until you go talk to her!’” remembered Bill. It turned out to be one of the best decisions they ever made. Within hours of the first session, in which Farris reprogrammed Bill’s DBS battery, he noticed he had a better stride, balance, and energy, and that his facial expressions, many of which the family hadn’t seen in years, were coming back. ve t! Corrine noted that while they both acknowledge that death is inevitable for everyone, she distinctly remembers what Bill said as they walked out of Farris’s office the first time: “I think she saved my life.” They had both concluded that it was only a matter of time before one of Bill’s falls resulted in injury or death. What Bill appreciated most about his new quality of life was the ability to do normal things, like getting the newspaper without two walking sticks. Before they had left for Colorado, and before they met Sierra Farris for the first time, Bill lost one of the walking sticks. “God must have known we weren’t going to need it anymore,” he laughed. LiVE Keep on keeping on In the years since his diagnosis, Bill has had time to reflect on the good that has come his way. He doesn’t feel that God has given him this disease as a punishment, but rather to see what he would make out of the situation and his life. Reflecting on his original response to his diagnosis, he said, “I held two pity parties, and nobody showed up.” After that, he realized how lucky he was—starting with his 8 Grandsons Ashton and amazing support team, headed by his wife. As his caregiver, Corrine has been with him every step of the way, educating herself, pushing him at times to do things he didn’t want to do, even doing exercises with him that help manage his disease. “I know that if our situation were reversed, Bill would take the lead for any care I would need,” she said. However, he noted, “We were partners, working through life together even before I was diagnosed.” Though they can get grouchy with each other at times, especially when Corrine is trying to make him do something he doesn’t want to do, she has come up with a clever solution—she has trained the grandkids to remind their grandpa to do things like take “big steps” and count his steps. Likewise, if he hadn’t been diagnosed, both Corrine and Bill realize they would never have met many of the amazing people they now know. They call these people their angels—the doctors, nurses, specialists, family members, other Parkinson’s patients and their families, and many more. And they realize while they have been fortunate in their journey, many others don’t have the same support or access to knowledge. So they have kept their support group going, and they continue to promote their favorite slogan: “Keep on keeping on.” As for the future, the Hinkles will return to Denver this April for another session with Farris. This year Bill plans to participate, albeit briefly, in RAGBRAI with the Pedaling for Parkinson’s team on his three-wheel bike. With his support team at his side, he will keep active as long as possible, exercising, biking, and walking to the front step and beyond. kle’s yard. Jaxson playing in the Hin Nadine, Corinne, Bill and Nadine’s daughter Reese in Denver for a Father’s Day walk. Annual Parkinson’s Disease Conference Strength Through Optimism Friday, June 14, 2013 – 8 a.m. to 3:30 p.m. Lutheran Church of Hope, 925 Jordan Creek Parkway , West Des Moines, Iowa 50266 Keynote Speakers Monique Giroux, MD Laura Gentry Ergun Uc, MD Lynn K. Struck, M.D. Beyond Medicine: Holistic Therapies for Living your Best with Parkinson’s Disease Laughter Yoga Presentation Exercise Research and Driving Non-Motor Symptoms of Parkinson’s Disease Lutheran Minister and Laughter Yoga Instructor Neurologist and Professor University of Iowa Neurologist Physician Specialty Clinic Iowa Health – Des Moines Co-founder and Medical Director at Movement & Neuroperformance Center of Colorado, PC Breakout Sessions Speakers • Kay Vanags, BS, LBSW, Family Caregiving Specialist, Aging Resources of Central Iowa • Jeremy Greenlee, MD, University of Iowa, Neurosurgeon • Heather Illg, RD, LD, Hy-Vee Dietician • Valerie Stickle-Diehl, RN, MS, MSCN, Mercy Ruan Neurology Clinic • J. David Nordstrom, MD, Medical Director Iowa Health Home Care, Hospice and Palliative Medicine • Mary Lea Holcomb, Healing Strategies • Stephanie Pothoven, DO, Urologist, The Iowa Clinic • • • • • • • • • Mike Kendall, LMSW, Social Worker Kathy Mercuris, PT, DHS, Assistant Professor, Des Moines University Dennis Martin, Des Moines area photographer Michelle McGregor, CCC-Licensed Speech Pathologist , Iowa Health System Becky Holmes, Delay the Disease Exercise Trainer & Instructor Jen Voorhees, Delay the Disease Exercise Trainer & Instructor LaDona Molander, Delay the Disease Exercise Trainer & Instructor Kyra Gilbert, Dancing with Parkinson’s Instructor Gary Johnson, ATP, Iowa Program for Assistive Technology Details Registration: Brochure/agenda will be sent in the mail and online registration/ agenda will be available at www.apdaiowa.org Fees: $20 for attendee and guest; $10 for an individual. Overnight Accommodations: Visit www.apdaiowa.org for more information or call (877) 872-6386 Interest in Volunteering?: Please call Deb Wityk, Volunteer Coordinator at (515) 577-2990. Iowa Parkinson Disease INFORMATION AND REFERRAL American Parkinson Disease Association chapter information El Camino (The Way) for the Cure I want people to know that a Parkinson’s diagnosis doesn’t have to be the end pursuing your dreams. I am Rolando Chaves and in 2005, at age 38, I was diagnosed with early onset Parkinson’s disease. My symptoms include tremors in both hands, my left leg, and lately I have begun to lose my ability to speak. The tremors are now controlled by a Medtronic Deep Brain Stimulator implanted almost three years ago. Parkinson’s disease may have altered my life’s plans, but it has also helped me reorder my priorities and choose to live my life more proactively. I see it as my responsibility to be a voice for people with Parkinson’s and to join efforts that will lead to a cure for this debilitating disease. For years I have wanted to visit the country of my ancestors and partake in the ancient pilgrimage known around the world as “El Camino de Santiago de Compostela” (The Way of Saint James). My wife, Gina, our son, Braden, our daughter, Kelsey and her boyfriend, Nick White, and I have decided to complete The Way of Saint James this Spring in support of the Iowa Chapter of the APDA. We are naming this challenge “El Camino for the Cure.” The walk is approximately 500 miles through varied terrain in northern Spain. The trajectory starts in the French village of St. Jean Pied du Port and ends in the city of Santiago de Compostela near Portugal on the Atlantic side of Spain. The Chaves family (left to right): Rolando, Gina, Kelsey and Braden Pilgrims cross the Pyrenees Mountains and traverse the Rioja and Galician regions. Research clearly shows that exercise and stress relieving activities are critical for people with Parkinson’s to delay disease progression. My desire is that this journey serves as a symbol of hope, inspiration and motivation for other Parkinson’s patients to increase their daily physical activity and strengthen their connections with family and nature. A cure for Parkinson’s disease will not happen without individuals who are dedicated to the fight. Will you consider supporting the mission of easing the burden and finding a cure? Find out how to support us at www.facebook.com/ ElCaminofortheCure and find regular updates about the trip preparations and our progress during the walk. Thank you, Rolando Chaves, Iowa Chapter of the APDA, board director Save the Date! El Camino for the Cure 1st Annual Silent Auction Night Friday, April 26, 2013, from 6-9 p.m. at the Des Moines Marriott Downtown, 700 Grand Avenue. Proceeds will benefit the Iowa Chapter of the American Parkinson Disease Association to support research, opportunities for Parkinson’s patients to attend exercise classes, support groups and informational seminars across the state fo Iowa. Route for The Way of St. James 10 For news and updates, please follow us on Facebook! www.facebook.com/ElCaminofortheCure. Visit www.apdaiowa.org for the El Camino fundraising page. what’s coming up? - exercise 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. 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.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 Muscatine - 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 email@example.com 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. Cycle for Neuro Wellness YMCA Healthy Living Center in Clive, Thursdays 5:45-6:30 p.m. Contact YMCA Physical and Aquatic Therapy clinic at (515) 645-3350. Who Can Join? - Classes are designed to help people with Parkinson’s disease or other neurological conditions where exercise is believed to help reduce symptoms. Suitability for the program is determined by a neuro wellness evaluation. How to Join? - Participants receive a neuro wellness evaluation by a Physical Therapist at the YMCA Healthy Living Center prior to joining the program. The evaluation can be arranged with a physician’s prescription faxed to 224-2907. Dance Class Cedar Rapids - Contact Kyra Gilbert, Dance Instructor at Epics Steps studio, at 319-450-3400 for more information. kudos Parkinson’s Action Network Forum The Parkinson’s Action Network Forum took place in Washington D.C., from February 25-27. The Forum is a three-day conference that brings Parkinson’s advocates from all over the nation. Attendees learn about the latest in research and public policy and prepare to meet with their state’s representatives. We were able to meet with Senators Tom Harkin and Chuck Grassley and Representatives Bruce L. Braley, Tom Latham, Steve King and David Loebsack. We asked them to help preserve funding for the National Institutes of Health, Food and Drug Administration and the Department of Defense Parkinson’s Research Program. These organizations fund research and programs that could lead to better quality of life and a cure for people living with neurological conditions like Parkinson’s disease. We also asked each representative to join the Congressional Caucus on Parkinson’s disease, which helps raise awareness of Parkinson’s and demonstrates a commitment to finding better treatments and a cure. For more information on the Parkinson’s Action Network, go to www.parkinsonsaction.org or call (800) 850-4726. Parkinson’s Action Network Forum Attendees: Deb Wityk, Support Group Leader of the Young Inspired Parkinson Supporters in West Des Moines, Crissanka Christadoss, Coordinator of the Iowa Parkinson Disease Information & Referral Center, and Jenn Wolff, Occupational Therapist at Waverly Health Center and Support Group Leader in Waverly. Live it! Spring 2013 11 art word ArtAbility search S R S M P A H R U J T Y I X R E L I T N I D S T O L S N H V M H O G D I N G T G U R N N U E F U N I L O G R B A Q M O E A J A L Z A A R M E T F X G R O M E R T I E S T R E N G T H L E L P T Y C T Y K M Q O L U U H X N E U R O L O G I S S E N E R A W A D Y A P H S M I L U E L G Y U J K I H A L W O O X S L N J P A A Y D N A N Z I H Y W L V I F E U W Q I J G K AWARENESS BALANCE CAMINO DANCE DELAY DIAGNOSIS HAND LAUGHTER LEARN MONTH NEUROLOGICAL P N C E K Y F A R Z C D M E E I A D B Z K N N E V K O A S E C O A G U U I E U R R B I T S O W A P D D T Q Y O B K E E Q O N E C H J R X W H M C C A L N F N B B R O D Z E A C L A D E L E O N X G A K G C P H N E Y E O G C X M J J O E L J L L I am an Information Technology professional and have worked in this field for over 30 years. I am married, have four children and one granddaughter. I have always had a real passion for taking pictures. Dennis Martin I was diagnosed with early onset Parkinson’s in 2009. By 2011, in order to continue my photography, I had to make some changes. I purchased a Canon digital camera with stabilizing capability in the camera and lens. I found that arriving and setting up early for an event reduced my shaking. Using shoulder straps helps prevent the camera from falling to the ground if I lose my grip. I also use a tripod, which helps me get good quality pictures. I like to capture candid images that tell a story: individuals and families sharing special moments, athletes expressing their concentration, drive, and excitement and the beauty of nature. I’m very proud to say that I recently started my own part-time photography business. You can view some of my work on my web site located at www.dennyspictures.com. If you have Parkinson’s and are interested in more photography tips, contact me. Below are a few of my pictures. ORGANIZE PILGRIMAGE PLAN PRODUCE SMILE SNACK STIMULATION STRENGTH TECHNOLOGY TREMOR YOGA Dennis will be speaking on photography at the upcoming Annual Parkinson’s Disease Conference in West Des Moines. 12 20 donors/acknowledgements donors In Memory of Victor C. Bohls Donor Name: Pam Cummings November 2012 – January 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 8 Iowa Chapter of the APDA President: John Krumbholz Interim Treasurer: Gayle Fopma Directors: Gina Chaves, Rolando Chaves, Gayle Fopma, Ervin Fopma, Terry Hertges, David McNeill, LaDona Molander and Jen Voorhees Past Presidents: Jeff Molander and Sabrina Moe • American Parkinson’s Disease Association, Inc. - National Office, 135 Parkinson Avenue, Staten Island, NY 10305, (800) 223-2732, www.apdaparkinson.org 8 acknowledgements The Iowa Parkinson Disease Information and Referral Center is grant funded by American Parkinson Disease Association Donations: Tracy & Mike Andreasen Cynthia Bowen William Brown Rhonda Byers Harlan & Karen Christensen Neil Kuehnl Jerry Lynch Maurice, Iowa Women’s Club Robert K. McMaster Siouxland Parkinson Disease Support Group Debra Wickham Beverly Wildman In Memory of Joe Carroll Donor Name: G. & C. Kruger In Memory of Sherry Engling Donor Name: Southeast Iowa Area Parkinson Support Group In Memory of Roger Hoppenworth Donor Name: Jane Hoppenworth In Memory of Mary Kock Donor Name: Greene Parish Health Project Michael & Terri Behnke family In Memory of Gerald Krull Donor Name: Grundy County Area Parkinson’s Support Group In Memory of Dale A. Saunders Donor Name: Johnet Saunders In Memory of Shirley Schamerhorn Donor Name: William and Ann Cramer Richard Schamerhorn Ann York In Memory of Patricia Trefz Donor Name: Baja Enterprises, L. C. Angelo & Margurite Bernolfo Barbara Cook Wayne & Laura Fuller Mr. & Mrs. Merle Henderson Rosemary Kinley Darrell & Karen Kintzle Jane P. Knapp Keith and Maye Kress Jean Minehart & family Mary & Ned Minehart Elaine Trefz Dick Trefz & Cherie Dunn JoAnn Price Martha Serbousek Geraldine M. Westlund Tamara and Kevin Winn Richard & Janet Woods In Memory of Ted Van Lent Donor Name: David & Cynthia Borcherding Linda Campbell Robert & Marilyn Ermer Mary Jo Fisher Edward & Marjorie Gutzmer Richard & Sharon Kloberdanz Alison Konefes Julie & Neal Pals Dianne Cahalan Salling Timothy & Kathryn Sautter Stephen & Sheila Swift In Honor of Rich Mills’ Ride Across America Donor Name: Grundy County Area Parkinson’s Support Group In Honor of ‘El Camino for the Cure’ (pg. 10 for more information) Donor Name: Keith & Christina Kroner PD Walkers Tributes PD Walkers Joann Wallace James & Terry Talone Kevin Backstrom D B Patton Alan & Margo Tank The Tank Family Trust Jack & Susan Tank Barb Mendoza Ann C. Pixley Martha J. Young In Honor of ‘Tony’s Team’ Donor Name: John & Trayla Carter Michael & Lynn Struck In Honor of Team Town Donor Name: Mickel & Joletta Edwards Mark Jackson Craig & Jill Kimpston Joshua Lemberg Clint & Jody Lutterman Gary & Diane Ross Brenton & Chelsey Town Judy Town Michael & Nancy Weitenhagen In Honor of Sarah Steward Donor Name: William & Nancy Steward G & M Femrite Arden & Margaret Borgen In Honor of Megan Wick Donor Name: Sara Treinen 13 resources 8 links and other resources 8 Web Links Here are a few helpful websites. See a more complete list, including information on clinical trials, prescription assistance, catalogs for adaptive equipment and clothing, and more at www.apdaiowa.org. Parkinson’s Disease - Iowa Statewide Resources Caregiving Information ......................................................................................www.iowafamilycaregiver.org Assistive Technology and possible funding sources........................................www.iowacompass.org Iowa Prescription Drug Corporation (prescription aid)................................. www.iowapdc.org Easter Seals Iowa Assistive Technology Center................................................ www.eastersealsia.org Parkinson’s Disease - General American Parkinson’s Disease Association ......................................................www.apdaparkinson.org American Parkinson’s Disease Assn, Iowa Chapter ........................................www.apdaiowa.org American Parkinson Disease Young Onset Center ........................................www.youngparkinsons.org Parkinson’s Action Network ...............................................................................www.parkinsonsaction.org American Academy of Neurology .....................................................................www.aan.com The Movement Disorder Society .......................................................................www.movementdisorders.org WE MOVE: Worldwide Education and Awareness for Movement Disorders .......................................................www.wemove.org Living Well with Parkinson’s Disease ................................................................www.pdplan4life.com National Institutes of Health: Parkinson’s Disease ..........................................nihseniorhealth.gov Caregivers National Family Caregivers Association...........................................................www.nfcacares.org Iowa State University Extension Family Caregiving .......................................www.extension.org/family+caregiving Coping with Caregiving ......................www.extension.purdue.edu/cfs/topics/hd/resources/CopingCaregiving.pdf 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. Hamburger The sign for “hamburger” is made by cupping your right hand on top of your left hand. Now reverse the position of both hands. Memory aid: Think of forming hamburger into a “patty” so you can BBQ it. 14 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! Algona/Kossuth County Donna Mae Walker (515) 341-3440 Davenport/Scott County Eileen Benson (563) 332-6497 Ames/Story County Sue Trevillyan, firstname.lastname@example.org (515) 233-2089 Decorah/Winneshiek County Linda Klimesh email@example.com (563) 387-3146 Atlantic/Cass County Jon Jordan, JJordan@wesleylife.org (712) 243-1850 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 Charles City/Floyd County Carol Quade, firstname.lastname@example.org (641) 228-5053 Creston/Union County Myra Spindler (641) 344-9065 Des Moines/Polk County Valerie Stickel-Diehl email@example.com (515) 358-0002 Dike/Grundy County Bill & Corrine Hinkle firstname.lastname@example.org (319) 989-2110 Dubuque/Dubuque County Gerry Osterhaus email@example.com (563) 582-7313 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 subscription information 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/Blackhawk County Terry Hertges Beno08@aol.com (319) 235-7118 Waukon/Allamakee County Connie Metille (563) 538-4005 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 Iowa Health â€“ Des Moines 1200 Pleasant Street, E524 Des Moines, IA 50309 Thank you for reading Live it! Magazine, and for your support of the Parkinsonâ€™s disease community.