volume 4 w issue 3 winter 2013/2014
Live it! is a publication of the Iowa Parkinson Disease Information and Referral Center
A Resource for Iowans with Parkinsonâ€™s Disease and those who care for them.
Giving Back From politics to advocacy, helping others is the best treatment. Elaine Baxter
contents 3 3 4 5 6 7 8
From the Staff
From Our Medical Director
Holiday Tips for Long-Distance Caregivers
New Years Resolutions
11-12 l 13 14 15 16 17 18 19
What’s New for 2014
Giving Back (pictured here with her husband Harry)
PD Walkers, Viewing Party, Phinney Conference, Sioux City Symposium
World Parkinson’s Congress, Kudos
Brain Games, Artability
PAN and Affordable Care Act, Upcoming Events
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
14 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 firstname.lastname@example.org. Please note: The decision to include reader submissions is at the discretion of the editorial staff. The editorial staff reserves the right to edit or otherwise alter any material submitted. If you would like submission material returned to you, please include a stamped, self-addressed envelope.
Dear Live it! Readers,
letter from the
Live it! staff
We are so fortunate to have connected again with you this year, bringing you stories of hope and joy and lots of food for thought. As the year closes, we ask you to think about this holiday season and giving back to your community. Our cover story features Elaine Baxter from Burlington, Iowa. Elaine had a busy career in Iowa politics and continues to be an advocate for the Parkinson’s community, emphasizing that giving back helps her through the challenges Parkinson’s presents. With your donation and support we’ve been able to bring many wonderful events to the Parkinson community in Iowa, including the annual statewide conference in West Des Moines and the annual symposium in Sioux City. In the coming year, we hope to bring more of these events to different regions in Iowa. Save the date for next year’s statewide conference – Friday, June 20, 2014. Speaking of important and informative conferences, the Iowa Chapter sent representatives to the World Parkinson’s Congress this year that was held in Montreal, Canada. This important conference is held every three years and brings together top-notch researchers and Parkinson’s experts from all over the world as well as patients and caregivers. Iowa Chapter Co-President John Krumbholz details his experience at the World Parkinson’s Congress on page 13. There are many gifts we can give this holiday season, but what would be the most meaningful? This year we asked several Live it! readers what holiday gifts they want, have received or given (page 16). Included are a list of gifts you may think about getting loved ones. There is also the gift of taking care of oneself. Holly Bonasera, a Parkinson’s wellness consultant, offers some tips for long-distance caregivers on page 6.
Live it! Staff
Medical Director: Lynn Struck, M.D. Managing Editor: Crissanka Christadoss Editors: Linda Jordening and Vicki Ingham Contributing Writers: Holly Bonasera Art Director: Patrick Vaassen
Live it! Editorial Board
Lynn Struck, M.D., Medical Director Crissanka Christadoss, Coordinator, Iowa Parkinson Disease Information and Referral Bruce Carr Vicki Ingham Linda Jordening Patrick Vaassen
Request for Submissions:
The staff would like to invite words and photographs from you. Share with us photographs of you, your artwork, your words – anything that shows how you Live it! Please see submission guidelines on the bottom of page 2.
Many of you are a member of the Iowa Chapter of the APDA, which entitles you to a Live it! subscription as well. We enjoy offering you this publication and want to continue to do so. To help us offset costs of printing and mailing, please consider a donation to the Iowa Chapter of the APDA or becoming a member this holiday season for only $20 (subscription/membership form on the back page of this magazine). Thank you for your continued support of the Iowa Chapter of the APDA and the Parkinson’s community. Wishing you a Happy Holiday Season and a Happy New Year! See you in the Spring,
The Live it! Staff contact us:
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.
Caffeine and the Risk of Parkinson’s Disease Caffeine consumption has been associated with a reduced risk of Parkinson disease. This association is strong in men but uncertain in women. The reason why there is potentially an uncertainty in women is because of a possible interaction with hormone replacement therapy. Caffeine’s neuroprotective function is attributed to its negative action on adenosine 2A receptors in the brain. These recepters are potentially targeted as an anti-Parkinson therapy in several clinical trials. In reviewing the existing literature, the majority of the reduction in risk of Parkinson’s occurred at relatively low levels of caffeine intake. It has been shown that A2A antagonists can improve bradykinesia and other parkinsonian motor symptoms in rodent and nonhuman primate models of Parkinson’s as well as in patients with Parkinson disease. In summary, it has been found that there is a lower risk of developing Parkinson disease in individuals who regularly consume caffeine. There is some data that caffeine may have neuroprotective effects in humans. The potential benefit of caffeine and Parkinson disease risk and progression deserves further research. Before initiating caffeine on a regular basis, all individuals should verify that this is acceptable with your physician from a medical standpoint.
Statement of Copyright The entire contents of this magazine are copyrighted under United States copyright laws by the Iowa Parkinson’s Disease Information and Referral Center. All rights reserved. Written permission from the Iowa Parkinson’s Disease Information and Referral Center is required for reposting, republishing or retransmitting any material in this publication. What You Can Do Without Written Permission Articles may be reproduced only if the text of the article is reproduced in its entirety and attributed to the Iowa Parkinson’s Disease Information and Referral Center. What You Cannot Do Without Written Permission Reproduce any Iowa Parkinson’s Disease Information and Referral Center materials within any commercial publication or for any commercial purpose. Print more than a single copy for your personal use.
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What’s new for 2014 It was a great year for us at the Iowa Chapter of the American Parkinson Disease Association.
In the process of accomplishing this vision we have identified seven areas we need to work on.
Although it does not appear that any earth-shattering research or findings are ready to be announced in 2014, that does not mean we sit idly by as a chapter. We reached more of you and helped more of you than we had ever done before through our website, publications, conferences, exercise programs, outreach and events. Our goal is to build on the successes and help even more people with the fight against Parkinson’s disease.
• Examining and increasing the makeup of the chapter board.
Our mission as the APDA is to ease the burden and find a cure. In Iowa we are taking that mission a step further by attempting to help all people impacted by Parkinson’s disease in communities across Iowa. This is a huge task and requires us to define our goals and aspirations and establish a path towards accomplishing them.
• Improved utilization of technology to improve organizational effectiveness and new ways to serve our constituents.
Our nine year vision is simple, profound and a challenge to achieve: “We will be the first place people of Iowa turn to for help in dealing with the challenges of Parkinson’s disease”. This vision implies a number of things will be true: • We will be well known throughout all of the communities in Iowa. • We will have the scope of services and relationships necessary to address/refer those impacted by PD in any way. We will be financially and organizationally strong so our constituents can count on us at all times.
• Increasing our membership numbers. • Solidifying fundraising necessary for our cause. • Providing public awareness concerning Parkinson’s disease and our cause • Expansion of support groups and programs we offer
• Expanding and deepening our relationships with health care and other professionals. As a board, we will be providing additional focus and attention to these areas in 2014 and beyond. We would be willing to talk with individuals and support groups on how you could join us in achieving our goals. The simple fact is we are at war with Parkinson’s disease. It will take an army to win this war, but with your help, we will get the job done. Won’t you join us in the fight of our lifetime? American Parkinson Disease Association, Iowa Chapter Board
Iowa Chapter of the APDA: Front Row: (l to r) John Krumbholz, LaDona Molander, Jen Voorhees Back Row: (l to r) Ervin Fopma, Gayle Fopma, Gina Chaves, Dave McNeill, Rich Mills, Rolando Chaves Not pictured: Denise Harlan
for Long-Distance Caregivers
By Holly Bonasera
Nearly one-third of all Americans provide assistance with daily activities or medical tasks for their loved ones. Although the majority of caregivers live within 20 minutes of the person they care for, about 15% live more than an hour away. - Family Caregiver Alliance Long-distance caregiving brings with it a special set of stresses that may be magnified during the holidays. Here are some tips that can help you enjoy the holidays with your loved ones.
Take care of y
Let go of your ag
s ions for the holiday Having set expectat for ly ce of stress, not on can be a great sour ing your family. Try be you, but the rest of t d let go of judgmen an observer first an ther e being managed. O ar gs in th w ho t ou ab mily may be more members of your fa ng. ily reality of caregivi familiar with the da if st they can and even be e th g in do e ar They ed eir methods, they ne th ith w ee gr sa di u yo r than criticism. You your support more est gift you can give support is the bigg your family.
Holly Bonasera is a Parkinsonâ€™s wellness consultant. Learn more about her at www.facebook.com/ParkinsonsWellnessCenter
ourself Seeing changes in your loved o ne can be extrem upsetting. React ely ing as if this is an emergency is actually harmfu l to your health . Adapting to ch takes time. Exe ange rcise. Practice relaxation. Giv yourself a break e and spend som e time every day on something you enjoy.
Celebrate the little things The way your family celebrates the holidays may have changed. Instead of bemoaning this fact, focus on finding opportunities for joy in the present moment. This will take the pressure off everyone to live up to unrealistic expectations.
Your time spent with your loved ones is precious, even if it is difficult at times. Finding ways to reduce the stress of getting together will help everyone enjoy the holidays more.
new yearâ€™s resolutions
From politics to advocacy, helping others is the best treatment
Elaine Baxter has approached her challenges with Parkinson’s the same way she did her active political career—with energy and determination. This drive isn’t surprising from the first woman elected to the Burlington City Council and the first woman to serve as Des Moines County’s state legislator. After a career advocating for her constituents, she now advocates for Parkinson’s patients and works to help them enjoy a happier lifestyle.
Elaine and her late husband Harry
Elaine’s first brush with politics came when she married Harry Baxter, whose parents were both active politicians in the Democratic Party. Throughout her career, whenever she was asked whether her husband minded her heavy involvement in politics, she would reply, “He’s very supportive because his own mother was in politics. In his mind, this is just what women do.”
LiVE Elaine with her grandson Will
Below: Elaine and Harry with Harry and John, Only sons 790 Kilometers to daughter Kate and niece go! Karen Varnhagen
Elaine started helping on the campaigns of local Democratic candidates in Burlington in the 50s and early 60s, doing routine political campaigning like phone calls and mailing. In the late 60s, the Democratic Party began working to appoint an equal number of men and women to party offices. This opened many doors for women like Elaine, who were encouraged to take on more leadership roles. As she chaired campaigns for other candidates, she learned how to hold a press conference, give speeches, and other skills that would shortly become very useful. In 1973, she was approached to run for the nonpartisan Burlington City Council and won. During her tenure, she worked to get more women appointed to city boards and commissions. She ran for mayor of Burlington in 1975 and was defeated. Afterwards, she decided to return to school— she had previously received a bachelor’s in international affairs from the University of Illinois—and got her master’s in urban planning from the University of Iowa. She and her husband were early supporters of President Jimmy Carter, and when he was elected Elaine went to work in his administration in the Congressional Relations Office in the Department of Housing and Urban Development from 1979-1980. She learned about the operations of the federal government, which serves her well today as she advocates for Parkinson’s. 8
Being involved in my community lifts my spirits Elaine took her next step on her political journey in 1982, when she was recruited to run for state legislator. “It was a very exciting special election,” Elaine remembers. “Even though it was 26 degrees below zero, I was out knocking on doors. At one home the man opened the door and told me, ‘You’re going to win. It’s too cold out here, go home!’” He was right, and Elaine served until she was approached to run for Iowa’s secretary of state. At the time this position wasn’t taken seriously, but Elaine was intrigued by the possibility of increasing the level of service the office provided to the people of Iowa. After winning, she studied other secretary of state offices around the country to see how they succeeded and how Iowa could emulate them. Noting that Iowa lagged behind in the ease of voter registration, she worked with a telephone company to put a voter registration card inside telephone books, for which she received national recognition. She also made it easier for agriculture operations and businesses to file their government documents by making it legal to fax them—a first in state government—winning her their gratitude. In 1992, conditions looked favorable for a run for Congress. It was a close race that put her in the national spotlight, but Elaine narrowly lost. After another losing run in 1994, Elaine returned home to Burlington and was later appointed by Governor Vilsack to the Iowa Lottery Board and Mississippi River Parkway Commission. She also began focusing on her long-time passion of historic preservation. Elaine has lived for 48 years in a historic home built circa 1875 overlooking the Mississippi River, and she has overseen renovations to that house. She has served on various boards, such as the Heritage Trust for Preservation of Historic Burlington and the Terrace Hill Society. It would be an exaggeration to say everything changed with Elaine’s Parkinson’s diagnosis in 2005. Though her symptoms were mild, she was told by neurologists that if she wasn’t already exercising she should start, since “exercise is like medicine for people with Parkinson’s.” Elaine’s subsequent research also extolled the benefits of exercise for Parkinson’s patients, including improved quality of life and possibly a slower progression of the disease. At a state meeting for the Iowa chapter of the American Parkinson Disease Association, Elaine met David Zid, whose organization Delay the Disease focused on the types of exercise she’d been reading about. Based in Ohio, David Zid had created an exercise program “specifically to counteract the
movement challenges experienced by people with Parkinson’s,” such as stooped posture, slower movements, and tremors. Elaine was inspired by the idea, and talked to Dr. Anil Dhuna, her neurologist at the West Burlington hospital— “I said it wasn’t fair that Ohio had these classes and we didn’t.” Dr. Dhuna contacted the head of West Burlington’s Great River Health Fitness Center, the fitness and rehab branch of the local hospital, and told him to talk to Elaine. The center subsequently implemented Delay the Disease classes, and David Zid himself trained healthcare professionals in the region. The classes began in early fall of 2012, and take place twice a week during the day. They started with 10 attendees and are now up to 40. The sessions deal with common Parkinson’s problems like flexibility, balance, and everyday movements such as getting up from a chair. “It makes me very optimistic and happy,” Elaine said. “People with Parkinson’s can often become depressed, but I’m glad people are benefitting from the classes I helped start. It feels like I accomplished something for other people. “Most doctors agree that Parkinson’s patients who exercise do better than those who don’t. We know it helps, we just don’t know exactly why or which exercise works best.” Elaine explains that exercise is not a cure, just a way to make life easier. It can delay the symptoms of the disease and even allow some people to cut back on medication. The Health Fitness Center has agreed to begin other classes for Parkinson’s patients as well, such as yoga, tai chi, neurocycling, and zumba, since it is important for them to exercise every day. Elaine has also helped organize other local outreach events, such as a premiere party for the Michael J. Fox Show this fall. The Great River Health Fitness Center generously sponsored and hosted the party, which was open to the public and attended by about 100 people. Many people who participate in the Delay the Disease classes helped publicize the event, inviting family and others who have Parkinson’s. The event put a spotlight on the disease for the general public, and also reached out to other Parkinson’s patients—more people have begun attending the classes since the event. Live it!
While exercise is beneficial, sometimes everyday life takes precedence. After her husband’s stroke in 2011, Elaine spent more time with him and less time exercising. She noticed her symptoms increased, and everyday tasks took longer, leaving even less time in her day. Since her husband’s passing in March of this year, she has returned to exercise, attending Delay the Disease classes two days a week and working with a personal trainer two more days. “I participated in an aerobic walking research program at the University of Iowa in 2011, and I was doing very well at that greater intensity of physical activity,” notes Elaine. “You have to push yourself to do more intensive exercise, but it was helping.” She hopes to get back up to five days of exercise a week. Even with Elaine’s local activism and personal exercise program taking up much of her time, she is still able to advocate on a national level. Due to her previous experience in national politics, Elaine was asked to volunteer for the Parkinson’s Action Network (PAN). This organization is the national voice for the Parkinson’s community, with goals such as increasing funding for research, helping veterans whose war injuries have led to Parkinson’s, and advocating for a national registry for Parkinson’s and movement disorders. The last point will enable more accurate information about the incidence and prevalence of the disease, which is critical to understanding genetic and environmental risk factors. As a PAN member, Elaine receives updates on issues which affect the Parkinson’s community and is often urged to contact members of Congress to ask them to support legislation benefitting people with Parkinson’s. She also works on the planning committee for the Morris K. Udall Awards Dinner, an annual awards ceremony to honor people who have done great work in the Parkinson’s community. Elaine participates in conference calls to organize the fundraiser and travels to Washington, D.C., to attend. At the dinner, Diane Rehm from NPR’s The Diane Rehm Show, whose husband has Parkinson’s, interviews a person who has been influential in the Parkinson’s community. This year, she spoke with Dr. Oliver Sacks, noted neurologist and bestselling author of numerous books on people with neurological disorders. The dinner also raises funds to support the efforts of PAN. Elaine understands why some people with Parkinson’s hesitate to be involved in their community but still encourages others to persevere. “The hardest part is worrying what people will think of you if you are stooped over or shaking. 10
Left: Meeting Bill Clinton at Knox College in Galesburg, Illinois. Below: Elaine and Tom Vilsack
Left: Barack Obama Presidential Campaign in West Burlington, Iowa, in 2007
I know people who are active in communities that go out with their oxygen tanks, wheelchairs, walkers – what does it matter if my hand is trembling? I am inspired by Mohammed Ali and Michael J. Fox. It would be easy for them to hide out as they are not at the top of their game anymore. But they have done the opposite. They’ve really set an example of how to live an involved life despite Parkinson’s.” While the extent of her activities may sound exhausting, Elaine is adamant that it is essential to her well-being. “As my disease has progressed, I’ve been amazed at the kindness of others, which has inspired me to pass it forward. With my husband’s passing, it had not been a happy year, but when I was planning the Michael J. Fox Show party, I woke up happy every morning. The more I get involved in helping other people, the happier it makes me. Being involved in my community lifts my spirits, and it helps me deal with Parkinson’s.” Delay the Disease class in Burlington, Iowa led by Matthew Kelley, personal trainer at Great River Health System.
PD Walkers Participate in the Des Moines Marathon The PD Walkers participated in the Des Moines Marathon on October 20, 2013, and raised over $14,000 this year! Thank you to all PD Walker participants and those who donated!
Donors and PD Walker Participants
Jerome & Elaine Barnwell Jeannie Blazek Janet Beneke Janice Bice Kevin & Diana Brown Lawrence & Joan Bruning Sheila Burton Alison & Todd Cate Rolando & Gina Chaves Kris Cameron Crissanka Christadoss James & Yolanda Christensen Gayle & Ervin Fopma Stan Fox Kelsey Gander Nancy Grogan Sue Grosboll Richard & Deb Heard Bob & Teresa Hertges Linda Holden Becky Holmes Sheri Hosek Karla Jeffries Angie Klobnak Marjorie Larson Karen Larson Mike Larson Elizabeth Lemcke Lana Luhung Luthens Law Offices, P.C. Marilyn Magel Bill Mather Caitie Mather Lisa Maupin Joe McConkey LaDona Molander R’Dell Molander William & Kristina Mather Albert Mews Cindy Mews Clara Mews Jayme Mews Ruth Mews Sue Mews Sarah Murphy Colleen Norgren Kara Norgren Roger Norgren Sarah Norgren
Zachary Norgren Cindy Olson Rich Panek Laurie Politzer Jessie Pritchard Timothy & Trina Radske-Suchan Rob & Kris Robison Kris L. Robson Josh Scholl Sarah Steward Kim Thede Steve & Kim Thilges Brian Town Keith VanBeek Kelsie VanBeek Steven & Kathleen Van Beek Kevin Wagner
In honor of David Findley Donor: Colleen Norgren In honor of Debbe Gray Patton Donors: Sarah Aikman Mark Allermann Jacqueline Bonneville Karen Bowen Jill Endries Stacy Farr Al & Heidi Fencl Tom & Sue Fojtik Terri Gohmann Ryan & Julianne Guillard-Patton Yolanda Hawthorne Gary & Veronika Keese Grace Lim Diane & Jim Patton Tracy Slagter Nicole Wiese In honor of Terry Hertges Donor: Lana Lugring In honor of Becky Holmes Donor: Dean Sweeney In honor of Sheri Hosek Donors: Dione Gisch Linda & Duane Hosek In honor of Karla Jeffries Donors: Dana Kramer Cheri Cipperley In honor of Jill & Maisie Kennicutt Donor: Michael Maupin In honor of Angie Klobnak Donor: Joe McConkey In honor of Elizabeth Lemcke Donors: Leanne Hurel Kristen Devlin In honor of Bill Mather Donors: Kimberly Ryan Becky Mather Marilyn Mather In honor of Mark Mather Donor: Becky Mather
PD Walkers stuff Donations in honor of PD Walker Participants In honor of Amy & Ben Ahearn Donor: Katie Van Beek In honor of Lynette Barrus Donors: Darcie Rossborough Jim & Judy Anderson In honor of Team K (Kris Cameron) Donors: Dorothy Armens Karen Boatman Kris Cameron Jo Catalano Allan Heggs Sylvia Keeling Jane Kelso Alice Osterhus Dick Simons In honor of Alison & Todd Cate Donors: Dixie & Carl Larson In honor of Rolando & Gina Chaves Donors: Kirk Graeve Susan Bunz
In honor of Dean Mather Donor: Bill Mather In honor of Joe McConkey Donors: Misha McCurnin Angie Klobnak In honor of Jayme Mews Donors: Patricia Best Sarah Brecht Tory Christensen Kristen Devlin Rose Foubert Laura Garrett Deana Horras-Colbert Erin Koehn Gail O’Rourke Melissa O’Rourke Isabel Schneider Lisa Schnedler Cole Stephenson In honor of Cindy, Clara, Al, Sue and Amy Mews Donors: Nancy Achenbach Lazetta Ahrendt Emily Andrews Shara Axmear Kris Baldwin Patricia Best Sarah Brecht Bree & Tom Case Tory Christensen Jennifer Cox Dana Dawson Kristen Devlin Susan Elwood Michelle Farrell Rose Foubert Laura Garrett Greg & Georgia Gent Linda Holden- Carter Deana Horras-Colbert Elise Knobloch Erin Koehn Christine Lucht Tami Marsh Brenda Moore Kathy Moore Brian O’Neil Joyce & Joe O’Rourke Gail O’Rourke Cynthia O’Rourke
Melissa O’Rourke Jerry O’Rourke Teresa O’Rourke Deanna Plank Tonya Potocki Christine Reznicek Trista Schaffner Lisa Schnedler Isabel Schneider Cole Stephenson Meghann, Rick & Natalie Sullivan Amy Tapken Nicole Thurm Carol Trier Sandi Van Dee Melody Van Dee Ron & Kathy VanBerkum Sara & Kyle Wade Devon Wilkop Kimi Wood-Hernandez Julie Zaveral In honor of LaDona, Jeff, R’Dell and Krislyn Molander Donors: Jim & Judy Anderson Cammy Coronato Alok Epari Janet Hasstedt Ben Jacobson Dale & Davida Kalina Lisa Kirchner Mike and Kelley Kramer Erik Luthens Jodi Melsness Claudia Siegel Diane & Mallory Weiser In honor of Jon Muller Donor: Gretchen Muller In honor of Sarah Murphy Donors: Mary Geisler Julie Kaiser Ann Murphy Chris Murphy Jodi Murphy Ann M Murphy Jerelyn O’Connor
In honor of Sarah, Zachary, Colleen, Kara and Roger Norgren Donor: Colleen Norgren In honor of Cindy Olson Donor: Chuck & Shirley Kline In honor of Laurie Politzer Donors: Kristen Devlin Claudia Rustad In honor of Sarah Steward Donors: Jeff Bruning Brenda Haines Bruce Johansen Regina Kovach Alan Marshall Dean Rock Janet Mark Rosenbury Ivy Sprague Sarah Steward Joshua Steward Nancy Steward In honor of Barb Stokes Donors: Mike & Ronda Ammann Debbie DeCarlo Jennifer St John Kendra Logan Jeanie Murphy In honor of Brian Town Donors: Brad & Jodi Buchan Scott & Marla Byers James & Yolanda Christensen Steve & Tracy Grasso Jeff & Melissa Grinstead Don Hunerdosse Angela Hunt Chris & Kristy Huston Austin Janssen Scott & Michelle Jordan Clint Lutterman Kim Poll Kelly Schulte Judy Town Ken Turnis Jesse Veenstra
Michael J. Fox Viewing Party Over 200 people met in Cedar Rapids, Des Moines, and West Burlington for Michael J. Fox premiere parties on Thursday, September 26! A special thank you to the Great River Health System, The Cedar Rapids Kernels, and UnityPoint Health (in Des Moines) for hosting the parties.
Davis Phinney Conference in Twin Cities On Saturday, September 21, 2013 the Iowa Chapter of the APDA sponsored a bus trip to the Davis Phinney Foundation’s Victory Summit in Eden Prairie, Minnesota. The Davis Phinney Foundation is well known for their Victory Summits, which provide a full day of expert speakers on a variety of Parkinson’s topics. Thirty-five people came on the bus trip and attended the Victory Summit. The Iowa Chapter looks forward to sponsoring similar opportunities for the Parkinson’s community in the future.
Sioux City Symposium On Friday, November 8, 2013 the Iowa Chapter of the APDA held its 3rd Annual Parkinson’s Disease Symposium in Sioux City, Iowa. Speakers included Danielle Hemmingson, Exercise Instructor at the Norman Waitt Sr. YMCA in Sioux Sioux City, NE; Dr. William Andrews, Neurologist at CNOS in Dakota Dunes, South Dakota; Dr. Diego Torres, Movement Disorders Specialist at the University of Nebraska Medical Center in Omaha; Tami Briggs, Therapeutic Harpist from Eden Prairie, Minnesota and Chris Kuchta, Advocacy and Community Relations Director at Connections Area Agency on Aging in Sioux City. Topics covered an overview of Parkinson’s, upcoming and promising research, exercise, music and relaxation, and Medicare basics. Over 100 attendees enjoyed a great day of learning and connecting with others. A special thank you to Teva Pharmaceuticals and Medtronic for sponsoring the event. Left: Tami Briggs plays the harp for attendees
Below: Attendees taking a movement and stretch break during symposium.
2013 World Parkinson Congress
in Montreal, Canada, October 1-4 First, let me state up front, that I had no idea what I was getting in for. I had never been to Canada, let alone a French speaking province. I had no idea if communication might be a barrier or how my ability to get around in such a large unfamiliar city would be. I’m an old dog and learning new tricks in French was going to be a challenge. Was I ever wrong! The committee organizing the Congress did a fantastic job. Most of the lodging they arranged was literally across the street from the convention center. If we left our room ten minutes before the first break-out session, you had time to get a cup of coffee and still be seated before the session started. The people throughout the city had a mastery of the English language, so my fears of a communication barrier were non-existent after the first half hour. The material covered in the breakout sessions ranged from practical, easily understandable information to the most detailed scientific studies you could imagine. All were clearly labeled in the program, so as a participant, you were never surprised or overwhelmed by the level of the information unless you chose to be. Perhaps the biggest surprise of the Congress for me was the sense of teamwork and hope that existed in every person I met. There were neurologists, movement disorder specialists, researchers, clinicians, heath care providers, therapists, students and of course, there were Parkinson’s patients and caregivers - nearly 3000 in all with over 900 diagnosed with PD. There was no big announcement about a cure having been found, but you could sense from every
Chapter Co-President John Krumbholz and Board Director LaDona Molander attend the World Parkinson Congress in Montreal Canada in October.
one you came in contact with that we are making progress in this battle. I can assure you that no one walked away feeling like people were not doing everything possible to put an end to this insidious disease. If I had to do it over again, the only thing I’d do differently would be to allow a little more time to enjoy the historic and beautiful city of Montreal. I guess I’ll just have to plan differently for the 4th World Parkinson Congress, September 20 -23, 2016 in Portland Oregon . I’ve never been there either, but I hear they speak English there! Hope to see you in Portland, John Krumbholz, Co-President of the Iowa Chapter of APDA
Kudos - East Sac Vball
The East Sac County High School Girls’ Volleyball Team from Lake View, Iowa hosts a “Grey Out” Night fundraiser every fall in honor of their volleyball coach, Dave Waggie, who is also science teacher at the High School and has Parkinson’s disease. This year the team raised over $3,000 for the Iowa Chapter of the APDA. Money was raised by selling T-Shirts and raffle items. Thank you to this wonderful group of young women at East Sac County High School!
Bonnie Hunter, Parkinson’s support group leader in Storm Lake, Iowa, presents Coach Dave Waggie and team with a recognition plaque for their fundraising efforts on behalf of the Iowa Chapter of the APDA.
Deb Wityk (right) and Carol Wise
1. Name your colors: Challenge your ability to stay focused: Quickly read out loud the color that each word is printed in—not the word itself. Try it repeatedly to see if you can improve. BLACK RED
2. In just 7 words: Test your creativity with this verbal challenge. Write a short story—and use only seven words to tell your tale. __________________________________________ __________________________________________ __________________________________________ 3. Opposite day: Build new neuronal connections by putting your nondominant hand into action. Use it to perform daily tasks such as brushing your teeth, combing your hair, and eating. Even try to write with your other hand, too. Does using your nondominant hand become any easier over the course of the day? 4. Count backward: Here’s a brain workout that will help keep your mind on track. Try these three exercises in simple subtraction: • Beginning at 200, count backward, subtracting 5 each time (200, 195, 190…). • Beginning at 150, count backward, subtracting 7 each time (150, 143, 136…). • Beginning at 100, count backward, subtracting 3 each time (100, 97, 94…).
ArtAbility When Deb Wityk and Carol Wise get together, it is all laughter, smiles and inside jokes. That’s what happens when friends work together. When Deb tried making beaded jewelry by herself one day, she didn’t get the hang of it. Due to her Parkinson’s, Deb has trouble with tasks like buttoning clothing and other tasks involving fine motor skills. It wasn’t until Carol showed her how to bend wires and string the beads that Deb found a new found love for making jewelry. “She’s very knowledgeable and she’s my friend – who better to work with?” says Deb. Deb was diagnosed with Parkinson’s almost 20 years ago. She met Carol at Tai Chi class back in 1996 and they have been friends ever since. Carol doesn’t have Parkinson’s, but through Deb she is active in the Parkinson’s community. Carol began beading in 1994 and enjoys making jewelry and crafts, which she in turn likes to provide as raffle and auction items at the annual Parkinson’s conference in Des Moines each year. One day Deb shared tulip lapel pins with Carol, and Carol immediately said that they should make earrings out of them. They work together to create earrings and jewelry sets, all Parkinson’s-inspired. “We get along well,” says Carol. “It’s fun to work together and we have a lot of senior moments together, too!” “I do tai chi for balance, mah jong for my mind and jewelry for occupational therapy,” says Deb. “Doing any of these things with a friend is a wonderful bonus.” If you are interested in purchasing any of Deb and Carol’s creations, you can email Deb Wityk at email@example.com or call (515) 577-2990. All the proceeds benefit the Iowa Chapter of the American Parkinson Disease Association.
August – November 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, 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.
In Memory of Ron Arvidson Donor Name: Marty and Joy Cummings Paul and Doris Jones Christy or Donald Kriegel In Memory of Leora Beyer Donor Name: Alice Beyer Laverne Christensen John and Kathleen Holt Mrs. Joyce Lauterbach Christena Shilling In Memory of Neville Clayton Donor Name: Marlene Clayton Patricia Reynoldson In Memory of Francis Denner Donor Name: George and Linda Arvidson In Memory of Sara Dunsmore Donor Name: LeRoy & Connie Blommer Julio & Gloria Chiarella Betty Golden Joyce Grier John & Kate Holt Denis & Nancy Johansen Ken & Amy Kinne Mike & Nancy Kooker Leon & Carol Lamer Merle & Tami Mann Gladys Nieuwsma Angie Vandenber In Memory of Paul O. Jensen Donor Name: Diane Dudley In Memory of Harold Kock Donor Name: Greene Parish Health Project Mary Kock In Memory of Villetta Lynch Donor Name: Laverne Carlson Richard and Phyllis Cook Rudolph and Sandra Eilers Patricia Franscht Veridian (?) In Memory of Audrey Murphy Donor Name: Francis Murphy
In Memory of Leroy Rotert Donor Name: Michael and Jill Carr Dennis and Susan Eichner Geraldine Folsom James and Sheri Jandik Michael and Melissa Love Craig and Carolyn Miller Stephen and Linda Opheim Carol J. Palmer Joan Rotert Kent and Patti Rotert In Memory of Betty Ann Stone Donor Name: Gordon M. Stone & Stone Family In Memory of Alfred Thomas Donor Name: George and Mary Lou Olauson Linda Snoddy Robert Davenport In Memory of Audrey Murphy Donor Name: Francis Murphy In Honor of Terry Hertges Donor Name: Eastern Iowa Lure Coursing
Walk for the Cure: Ray and Brenda Ryan
Robin Breen Virginia R Chaves Lori K Geadelmann Grundy County Support Group David A McNeill Jana Mentzer Jeff Molander Nola Schroeder Siouxland PD Support Group Jeff Stark Theresa Thornton Dennis and Rose Tiernan Kimberly Turnbull
Corporate Donations: FISERV Foundation Monsanto Fund Nationwide United Way Campaign
United Way of Central Iowa Wells Fargo Community Support Campaign
Holiday Gifts We asked readers to share gifts they’d like, gifts they’ve received and gifts they have given. Below we have also included some gift ideas for loved ones in your life. I am going to ask for an automatic remote starter for my car this year! LaDona Molander, Urbandale Iowa Chapter of American Parkinson Disease Association Board Director
My friend, Rita, gave me a heart-shaped geode. I wear it on a chain. Everyone comments on its uniqueness. Thanks, Rita, for your thoughtfulness. Charlotte Zimmerman-Grant, Urbandale West Des Moines Support Group member
ion people with If there are 1.5 mill US, where are all Parkinson’s in the re are years or more? Whe those diagnosed 20 ly as can feel pretty lone all those Parkies? I years. en diagnosed for 20 someone who has be teran and advice from a ve I need some input and tell you come forward Parkie. Why don’t We all you have lived well? me and others how Please s, ideas and advice. need to share storie . firstname.lastname@example.org contact me at shak
s d, West Des Moine Deb Wityk, Redfiel ader Support Group Le
A thoughtful gift I received was a Build-a-Bear with a recording of my granddaughter laughing in it. It plays when I squeeze the paw. My granddaughters live in Des Moines. Mackenzie was born 1 1/2 months before my diagnosis. I don’t think that was a coincidence. She got me through many rough times that first year. I looked at her picture, I saw her in person, and I had the bear. I took the bear with me when I had my knee replaced. Terry Hertges, Elk Run Heights, Waterloo Support Group Leader 16
“Oh, I can see! I can see! Everyone has faces! This is so wonderful, I can see!” These were the words spoken by a friend who has very limited sight due to advanced macular degeneration. She spoke these words as she placed special magnifying lens glasses on her face. These glasses belonged to my Mother while she was living. She was fitted with these glasses to aide her limited sight due to macular degeneration. After Mother’s death I thought about my friend. I was able to give her a gift that will help her enjoy life more fully. It was an awesome feeling to hear her exclaim “I can see” each time she looked at something in the room. The glasses were just the right fit for her. Many friends’ eyes filled with tears as we realized that God had planned this gift. Eloise Prater, Newton Newton Support Group Leader
Other Gift Ideas
• For card lovers: an electr ic card shuffler and card ho lder • Electric shaver • Electric toothbrush • For bakers: electric can op ener, stand mixer or lightweight bake ware • Membership to the local YMCA or gym • Tai Chi classes or Tai Ch i DVD • Dance lessons • Night lights to help illumi nate hallways • Kindle e-reader, a lightw eight option for book lovers • An iPad • Chocolate (choose a healt hier option like dark choco late) • FlexStick walking cane, see more at www.flexsticks.com • Spa day that includes ma ssage, pedicure, manicure, or facial • Guide/service dog • Handybar – a tool to help you get in and out the car easier with more support and balance. See mo re at stander.com/handy-bar Gift list is from the Dece mber 3, 2013 blog posti ng from www.parkinsonsjo urney, written by Sherr i Woodbridge.
Parkinson’s Action Network - PAN
Afforadable Care Act The Affordable Care Act (ACA) is the health care law meant to increase access to and lower cost of health insurance coverage for Americans. Various provisions of ACA will have implications for the Parkinson’s community. Provisions of the Affordable Care Act (ACA) will likely have broad-sweeping implications for the Parkinson’s community. PAN is taking action with the goal of ensuring the voices and concerns of our community are represented as decisions are made by providing comments when appropriate.
Issues and Resources
Here is a quick run-down of the main issues PAN is monitoring. We will update as new information becomes available.
Health Insurance Exchanges
Beginning January 1, 2014, state-based Health Insurance Exchanges and Small Business Health Option Program (SHOP) exchanges will begin operations nationwide. States that opt not to develop an exchange program will have one administered directly by the federal government. The exchanges will allow individuals and small businesses with up to 100 employees to purchase qualified health insurance coverage. Open enrollment for the exchanges will begin October 1, 2013 and run through March 31, 2014.
Essential Health Benefits
The ACA requires health plans for individuals who are uninsured or who will be insured through an individual or small group policy to offer, beginning in 2014, a comprehensive package of Essential Health Benefits (EHB). EHB must include items and services within at least 10 categories, such as prescription drugs and hospitalizations.
Since January 2012, PAN has submitted comments in response to bulletins and proposed rules issued by the Department of Health and Human Services (HHS) for EHB, expressing concerns related to access to prescription drugs and cost-sharing. (PAN responses and comments on EHB can be seen at www.parkinsonsaction.org/federal-initiatives). HHS released the final rule for EHB on February 20, 2013. PAN is pleased that HHS modified the final rule to require health plans to have a process to gain access to medically necessary prescription drugs that may not be part of the plan’s formulary. However, we still have two primary concerns with the EHB provision for prescription drugs: • Because individual states are allowed to design their own prescription coverage plans that meet EHB standards, the number of drugs that can be accessed by patients may vary widely from state to state. One state’s plan may elect to cover as many as 500 different drugs while another’s may cover over 1000. • HHS has not yet proposed a process to ensure that innovative new drugs, while generally accepted, are formally recognized in plan coverage as quickly as possible. In the interim, this could potentially lead to patients being denied critical health management and life-saving therapies.
Out of Pocket Expenses
PAN joined with over 100 patient advocate and health care organizations on April 16, 2013 in signing a letter urging the Administration to change its policy on out-of-pocket costs that people with chronic conditions will be charged starting in 2014. For more information concerning the ACA, visit www.parkinsonsaction.org/federal-initiatives, email PAN at email@example.com or call 1-800-850-4726.
Upcoming Events June Conference – Save the Date Friday, June 20, 2014 April is Parkinson’s Awareness Month! – April 2014
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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.
Socks The sign for “socks” is made by pointing both of your index fingers down. Rub the fingers together a few times.
support groups Special thank you to Bill and Corinne Hinkle who were support group leaders in Dike. They moved to Colorado recently, but their infectious positivity will be missed in Iowa! All the best to Bill and Corinne.
support groups 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
Carroll/Carroll County Melissa Schultes firstname.lastname@example.org (712) 794-5815 Cedar Rapids/Linn County St. Luke’s Hospital Resource Center Samantha White, LMSW WhiteSJ2@ihs.org (319) 369-8044 Cedar Rapids/Linn County John Krumbholz Krummy68@yahoo.com (319) 350-7482 Centerville/Appanose County Katy Paxton email@example.com (64) 437-3432 Charles City/Floyd County Carol Quade, firstname.lastname@example.org (641) 228-5053
Des Moines/Polk County Valerie Stickel-Diehl email@example.com (515) 358-0002 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 Dennis Eige (641) 753-8463 Mason City/Cerro Gordo County Janelle Nevermann (641) 424-4277 Muscatine/Muscatine County Wayne & Pat Corriell email@example.com (563) 649-2285 John & Karen Schaub firstname.lastname@example.org (563) 263-1866 Newton/Jasper County Eloise Prater email@example.com (641) 791-1018 Pella/Marion County Natasha Nikkel NNikkel@wesleylife.org 641-621-0316 Sioux Center/Sioux County Glenda Vanlaren Glenda.VanLaren@schospital.org (712) 722-8256 Sioux City/Woodbury County Jack Sherrman, firstname.lastname@example.org (712) 277-9337 Spencer/Clay County Carolyn Kruger email@example.com (712) 580-1219
Storm Lake/Buena Vista County Bonnie Hunter firstname.lastname@example.org (712) 732-3383 Vinton/Benton County Barb Cassens email@example.com (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 firstname.lastname@example.org (319) 290-9402 West Burlington/Des Moines County – Ruth Newton, email@example.com (217) 453-2481 West Des Moines/Polk County Mary Adkins, firstname.lastname@example.org (515) 480-4090 West Des Moines/Polk County LaDona Molander email@example.com (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.
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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.