volume 3 l issue 1 winter 2012 - family
LiveIt! is a publication of the Iowa Parkinsonâ€™s Disease Information and Referral Center
! A Resource for Iowans with Parkinsonâ€™s Disease and those who care for them.
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From the Staff Contact Us
From Our Medical Director Nutrition Corner
Lifestyle Tips for a Healthier 2012
Ask the Experts
6 - Cognitive Difficulties 7 -The “Elderly Waiver” Program
l The Right Tools for the Job Dressing When You are Physically Challenged
12 13 14 15
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16 17 18 19
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Word Search and Artability Support Groups
Upcoming Events, Training and Education Get Involved - Parkinson Action Network (PAN)
New Advocacy Program
Links and Resources - Past Events Sign Language
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 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.
letter from the
Live it! staff
Greetings, Live it! readers! Many of us take time at the beginning of a new year to evaluate our lives and recognize what is most important to us. We have many happy memories of the holidays when we were surrounded by friends, family and loved ones. This issue celebrates family, those near and dear to us who have shared our fears, been a shoulder to cry on, and encouraged us along the way. Whether they are ten minutes, 1,000 miles or a phone call away, there are those chosen few whom we have the utmost honor of calling “family” who make the journey of life worthwhile and meaningful. Be sure to read our cover story on Gayle and Ervin Fopma of Sully, Iowa. They describe how their life has changed since Ervin’s Parkinson’s diagnosis in 2001, and their deep appreciation for the unwavering support of their family and community. Nutritionist Carrie Leiran offers some healthy advice in getting a healthy kickstart on the year ahead. New to our ‘Ask the Experts’ column is Neuropsychologist Derek Campbell, PhD, who has written a piece on cognitive difficulties and Parkinson’s. The PD Walkers and the Iowa Chapter thank the teammates and sponsors that made 2011 another successful year at the Des Moines Marathon. The team raised $15,000 to donate to the APDA-Iowa Chapter. See page 16 for the listing of this year’s participants! We’ll see you in the Spring to celebrate Parkinson’s Awareness Month and give you a sneak peek into the Annual Parkinson’s Disease Conference in June. Stay tuned! In the meantime, keep warm and cozy till Spring!
Live it! Staff
The Live it! Staff
Live it! Editorial Board
Medical Director: Lynn Struck, M.D. Editors: Crissanka Christadoss and Linda Jordening Art Director: Patrick Vaassen
Lynn Struck, M.D., Medical Director Crissanka Christadoss, Coordinator, Iowa Parkinson Disease Information and Referral Bruce Carr Vicki Ingham Linda Jordening Patrick Vaassen
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
Lynn K. Struck, M.D. Neurologist Physician Specialty Clinic Iowa Health – Des Moines
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.
Visual Symptoms in Parkinson’s Disease Visual symptoms are very common in Parkinson’s disease. There are a variety of different issues that can occur. These include difficulty with reading and double vision, illusion, and complex visual hallucination. It has been found that visual acuity, contrast sensitivity, color perception, and motion perception are all impaired in Parkinson’s disease. Sometimes it is difficult to fully assess visual function in Parkinson’s disease because some patients have dementia. Visual hallucinations are 89% more likely to occur in patients with dementia compared to 17% in patients without dementia. As the disease progresses and if patients develop a dementia, visual symptoms increase significantly. In a recent study, it has also been noted that disease severity rather than cognitive impairment prove the strongest predicator of basic visual function. In regard to the difficulty with reading and diplopia that many patients experience, there are likely a number of factors contributing to reading problems. These include diplopia, slow eye movements, and impairment in both acuity and contrast sensitivity. Diplopia, or double vision, is also a common occurrence in Parkinson’s disease, and the longer a patient has had the disease, the more common this is. If a patient is drowsy, diplopia is also more common.
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.
Before it is assumed that the visual difficulty a patient is experiencing is related to their Parkinson’s, this should be discussed with their ophthalmologist. A comprehensive visual examination is necessary. If the patient is experiencing visual hallucinations, medication adjustments can be done that may decrease the incidence. This should be discussed with your neurologist.
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.
We continue to discover more information regarding the non-motor symptoms of Parkinson’s disease. We will continue to research and hopefully provide patients with better information regarding these non-motor symptoms.
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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for a Healthier 2012
Carrie Leiran, RD, LD, MS Iowa Health – Des Moines Nutrition Centre Carrie Leiran is a Registered Dietician (RD) and licensed (LD) by the State of Iowa. Carrie’s 25 plus years of experience includes extensive expertise in nutrition therapy for eating disorders, anxiety and depression, lipid management, sports nutrition, gluten intolerance and Parkinson’s disease.
The majority would say the Holidays start with Thanksgiving and end with New Years. In approaching a healthy lifestyle, one might instead start with Halloween. Now that the Holidays are over, it is time to make some healthy choices. At this time many factors collide including: the decline in temperature, a change to daylight savings time and the overall shortening of the light cycle. These changes along with the desire for warm comfort foods such as casseroles, soups and hot fruit crisps and the decline in activity may lead to an unwanted weight gain. What can a person do better at this time of year to minimize weight gain and be healthier in the New Year? The following are five tips to assist in planning a healthier New Year.
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1. Be mindful. What have Holidays in the past been like? Do you gain 7 pounds by New Years? What happens with food choices? What happens with exercise? What happens with your budget? By examining these factors you can develop strategies to implement a healthier 2012. Also, try examining these factors before the Holidays. 2. Be active. Continue with your regular exercise program. How about walking 2000 more steps a day? For the average person 2000 steps burns off 100 extra calories- the amount in a smaller cookie or a Fun Size candy bar. 3. Cut portions. The Tollhouse Chocolate Cookie Recipe yields 48 cookies. In the 1960’s the yield was 60-72. The recipe didn’t change. What changed is the size of the cookie! Save 60-70 calories by make dollar coin size portions. 4. Be creative. Disguise fruits and vegetables by serving in a colorful arrangement. Ideas include to serve vegetables in a dish, using radishes as garnish or to arrange fruit attractively using stems of grapes, various colors of sliced apples and berries. 5. Plan ahead. Have several healthy recipes and their ingredients on hand to utilize leftovers. Purchase storage containers to send some of your leftovers home with guests or to give to neighbors.
ask the experts
cognitive impairment by Derek Campbell, Ph.D.
Derek Campbell, Ph.D. Clincial Neuropsychologist, Campbell Neuropsychology Services, P.C.
Parkinson’s Disease is widely recognized as causing abnormalities in movement, balance, and posture. Studies indicate that most individuals with Parkinson’s also demonstrate some mild decline in thinking abilities, or mild cognitive impairment, over the course and as many as 30-50% may develop more serious generalized deterioration referred to as “dementia” later in the process of the disease. Common mild changes in thinking include decreased attention, slowness of processing information, and less flexibility in problem solving. Memory skills remain relatively preserved until late in the course, which differs from the pattern of change in Alzheimer’s. Parkinson’s Disease Dementia is diagnosed when the impairments in multiple areas of thinking are severe enough to interfere with the person’s ability to manage everyday activities. Individuals diagnosed with Parkinson’s disease in older age have the highest likelihood of developing serious cognitive difficulties, but other risk factors for this decline in thinking
skills are not well understood. If there is concern regarding loss of mental capacity, it is best to consult a physician to coordinate further evaluation and management services.
Signs/Sy mptoms related t o Alzheim er’s or Demen tia
• Problem s p attention aying d conversa uring tion • Forgetf ulness • Difficu lty instructio following n learning n s or ew thing s • Becomin g lost w hile driving • Problem s managin g finances
ask the experts
“Elderly Waiver” Program by: Legal Hotline for Older Iowans. You don’t have to wear ruby slippers and live in the Land of Oz to know “There’s no place like home!” As you age, everyday tasks can become more difficult and you may need assistance to safely stay at home. If you or a loved one are 65 or over and facing the possibility of having to move to a nursing home, you will want to look into the “Elderly Waiver” Program. The Elderly Waiver Program is a state funded, Medicaid program administered by the Department of Human Services (DHS) and local Area Agencies on Aging. It can provide a wide range of services tailored to your special needs. For example, services can include: • • • • • • •
adult day care, assistive devices, nurses, home health aides, homemaker services, transportation, and respite services
The amount of services you can receive will be limited based on the overall cost of the services and whether they are available in your area. Other benefits include Medicaid payment of some medical costs and the ability to buy your prescription medications for a very low co-payment. To get help from this program, you must be 65 or over and need the kind of services that a nursing home provides. If you are unmarried, you must meet the general Medicaid income and asset requirements. In 2010, a single person must have income of less than $2,022 per month and assets of $2,000 or less, not including a house, household goods, a vehicle and certain burial
funds. If you are married and only one of you needs help, the asset limits are much more complicated. Depending on your ages and incomes, you may be able to have a great deal more in assets - $100,000 or more - and still qualify. If you are having a hard time living on your own and don’t want to live in a nursing home, you should go to the Department of Human Services and apply for the Elderly Waiver Program. You should also contact your local Area Agency on Aging. A case manager at the Area Agency on Aging will develop a case plan and assess the level of care you need. The Iowa Foundation for Medical Care will review the assessment to determine whether you meet the required level of care. DHS will decide if you meet the other eligibility criteria. Applications are usually processed within 30 days. Sometimes applicants are denied Elderly Waiver services because DHS finds they are not eligible or because the Iowa Foundation for Medical Care determines the level of care requirement is not met. If this occurs, you have the right to appeal the decision. It is very important to file an appeal within a certain period of time, and with the correct party. The rules for Elderly Waiver Program eligibility can be complex and confusing. Please contact the Legal Hotline for Older Iowans to receive advice about your particular situation.
If you have questions, contact the Legal Hotline for Older Iowans at 1-800992-8161, 1111 Ninth St., Ste. 230, Des Moines, IA 50314. The Legal Hotline is a project of Iowa Legal Aid. This article was reprinted with permission from the Iowa Legal Aid website. Go to www.iowalegalaid. org for more information and articles.
the right tools for the job
when you are physically challenged
By Gary Johnson, ATP - Iowa Program for Assistive Technology
Dressing and undressing is something that you do every day, but what if it’s not easy? Maybe what used to take you three minutes now takes much longer. If dressing has become difficult due to arthritis, injury or other physical limitations, here are tips and clothing that help make dressing easier. First practical tip - loose clothing is easier to get on and off than tight clothing. Most of us have our “fat” and “skinny” clothes right next to each other in the closet. You have already realized that looser clothing is easier to get on and off. Be conscious of that when selecting the day’s clothing and when making additions to your wardrobe. Second practical tip - if one arm or leg seems to be more affected than the others, insert or remove that arm or leg first. Third practical tip - if balance is an issue, sit on the bed or a chair while pulling on and stepping into clothing to prevent tripping and falling.
Existing clothes can be altered to be more user-friendly. Buttons can be supplemented with Velcro, zipper tabs can be replaced with larger tabs, and regular shoelaces can be replaced with elastic shoelaces. A great web resource of what can be done is at www.buckandbuck.com. This is a website that features lots of adaptive clothing and will give you ideas on how to alter and continue using your favorite wardrobe items.
Purchasing clothing can be a daunting task. Dressing has gotten to be more difficult and even your more “friendly” clothing takes time. Luckily there are catalogs and websites that address Adaptive Clothing; clothing that looks like it came from your hometown store. Buck and Buck is a company that specializes in adaptive clothing and features 167 categories! Categories range from adaptive slippers, clothing for delicate skin, fancy adaptive dresses, rear closure clothes, wheelchair users clothing and wrap back dresses. Buck and Buck offers free hemming and free labeling. Since every individual has unique needs and preferences Buck and Buck offers custom alterations such as zipper pulls and zipper loops, three different types of back closures and short sleeve conversions. To get a free catalog call (800) 458-0600 or visit their website at www.buckandbuck.com.
A Clothing Protector that recently became available is the Quick Bib (see photos on page 9). Because it slides on from the front, anyone with limited motion due to health or space issues can position it without having to reach around the neck. Footwear needs vary from person to person. Slip on shoes and shoes with Velcro closures are often available locally and fit the needs of many people - just ask and you will find out what’s available. If swelling, overlapping toes, bunions or other foot issues are a problem for you, footwear is available. Shoes and slippers can be purchased in a variety of widths and heights (see photos on page 9) that can accommodate many individual situations.
Useful devices are available to help you. Dressing stick: Available at drug stores, medical supply stores and many hospital gift shops. Dressing sticks give you extra reach for removing socks and pulling down shirts and sweaters. Elastic Shoelaces: Converts many of your tie shoes into slip-ons. Just replace your shoelace with an elastic shoelace. Ring Zip Grips: These rings snap onto zippers to extend the pull tab. They are ideal for people who have difficulty grasping and pulling small zipper tabs. Sock Puller: A sock puller is a device that makes it easier for people who suffer from mobility limitations, arthritis, and dexterity conditions to pull socks on. Different models address different sock and mobility needs. Often sold in combination with a dressing stick. Shoe Horn: A short shoe horn requires bending over, a long shoe horn doesnâ€™t. Available in a variety of lengths and materials.
Snap-back Polo Shirts
Velcro Closure Shirt
Velcro Fly Pant
Ring Zip Grips
Long Handled Shoe Horn
Elastic Shoelaces Wrap Top Slipper
Informational Resources For additional information on these or other devices contact Iowa Compass at (800) 779-2001 or www.Iowacompass.org An Assistive Technology Demonstration Center is located at Easter Seals, 401 NE 66th Ave, Des Moines, IA 50313. You can use these and other devices to see if they work for you. Call (515)309-2394 or e-mail email@example.com.
Womenâ€™s Velcro Shoe
q Go to www.apdaiowa.org/equipmentvideos.html
to view video demonstrations and many other helpful devices for the home. The Iowa Program for Assistive Technology (IPAT) supports Iowa Compass, a free service for all Iowans, to provide information on types of available Assistive Technology devices and possible funding sources. Contact them by phone at (800) 779-2001 or log on to www.iowacompass.org
counting blessings A Sully couple discovers the importance of faith and family
Gayle and Ervin Fopma don’t remember the exact moment they met—they’ve just known each other forever. They were both born near Sully and went to school together. After high school, they married and moved into town.
Front Row: Grandsons Noah and Jacob Row 2: Son Eric, granddaughter Claire, Ervin, grandson Evan, Gayle, granddaughter Kyra and son Greg Back row: Son Lucas and his wife Sarah, Melanie (Greg’s wife) and Michelle (Eric’s wife)
Like most couples, they had dreams and plans for the future. They purchased a plumbing, heating, and excavation business —and hoped to run it profitably. They looked forward to enjoying travel, volunteering, and becoming leaders in their church and community. They had three married sons, and planned to spend plenty of time with grandchildren. Then, around 2001, Ervin, then age 50, started experiencing strange symptoms: stiffness, sweating, anxiety, exhaustion. Sometimes he was so stiff and sore he could hardly move. The doctors thought it might be work-related stress, but the symptoms persisted over a two-year period. Finally, Ervin went to a neurologist who diagnosed him—rather coldly, the Fopmas thought—with Parkinson’s disease. “We went in thinking I had arthritis and I would just be able to take some medicine to feel better. Instead, I learned I had Parkinson’s. I thought that was for older people!” says Ervin. “We’ve learned a lot since then.” Gayle can still hardly talk about how she felt when she heard the diagnosis. “You don’t realize you have hopes and dreams until suddenly you’re faced with the fact you won’t be able to do the things you dreamed of doing,” she says. Gayle and Ervin describe coming to terms with Parkinson’s and its effects as similar to going through the five stages of grief: denial, anger, bargaining, depression, then, finally, acceptance. “At every stage of the disease, you have to start back at denial and go through all the stages again,” says Gayle. The Fopmas have accepted and adjusted to their new reality, but it required changes to their lifestyle. In 2010, Ervin sold his business after owning it for 23 years. Since then, he has felt much better. His is a life of medication—“This from a guy who wouldn’t take an aspirin!” says Gayle.
Gayle and Ervin Fopma
While the disease changes and requires the Fopmas to adapt, some things have remained constant. Gayle and Ervin’s family provides unwavering support and genuine concern. The Fopmas have three married sons: Eric,
wife Michelle, and their children Jacob, Noah, Evan, and Claire; Greg, wife Melanie, and their daughter Kyra; and Lucas and wife Sarah. Gayle and Ervin keep their family updated on how the disease is affecting them, encouraging everyone to share questions and thoughts. Everyone is understandably interested in research into treatments, including the grandkids. Ervin and Gayle’s oldest grandchildren, Jacob and Noah (9), are just beginning to ask tough questions. One day, Noah tentatively asked Ervin if he could ask him a question about Parkinson’s. “Sure,” Ervin replied. “When do you think they’ll find a cure?” “Hmm…” Ervin though about it, then answered, “Probably about ten years.” “Oh. Ten years isn’t so bad.” Ervin and Gayle were touched that Noah had asked that question and that he responded in such a compassionate and tender manner. They know the younger grandkids will soon have questions of their own, and they plan to always be open to them—to explain why Grandpa is sometimes slow, tired, and shaky. Of all the blessings in his life, Ervin counts being able to spend time and play with his grandkids among the top. Since the diagnosis, the Fopmas have added a new branch to their family tree as well. Their support group provides them a depth of understanding they simply can’t get anywhere else. The Fopmas started attending the group, specifically for young-onset Parkinson’s patients, six or seven years ago. “We’ve all gotten older since then, so you can’t really call us ‘young’ onset anymore,” jokes Ervin. The group has been a great help to Gayle as well as Ervin. Often, people don’t realize how much Parkinson’s affects the spouse or caregiver of the diagnosed person. “Parkinson’s can be an extremely lonely disease—in the group, you realize you’re not the only one,” says Gayle.
Thanks to the support of their family and the group, the Fopmas are able to enjoy their lives and find fulfillment. Since the diagnosis, one other source has been a constant comfort and inspiration—their faith. Gayle finds enormous comfort in knowing God’s love for them, and Hebrews 4:16 has taken her through many difficult days: “Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.” Ervin has confidence in God who says, “All the days ordained for me were written in Your book before one of them came to be.” Ps. 139 Their faith also inspires them to give back in every way they can—they are involved as Directors on the Iowa Parkinson’s Disease Association, help teach a Bible study on Wednesday nights, and Ervin helps build hand-powered wheelchairs for people in developing countries. “The circumstances God put in front of us gave us many opportunities and blessings,” says Ervin. “There are things that I wouldn’t have been able to do or wouldn’t have appreciated as fully if I hadn’t had Parkinson’s. “I can still enjoy my grandchildren, volunteer, travel—all things I thought I would have to give up,” he continues. “I’m able to fulfill my plans and dreams, but in a different way.”
Ervin with grandsons Jac ob and Noah on a fishing trip .
Ervin on the playground with granddaughter Kyr a.
Ervin enjoys ice cream wit h his grandson, Jacob.
humor - games
C I E E A L I D O D M L W H W O O V P D E R E B D T U Y L W G V I M E N C O U R A G O U P N E T D B A G T H V N X V F N I P A H R Z V R U I A S T G O T D E E Q S E Z S S I Y T N N I P R E V V R S A K U M E I Y V C C X I M E Z U I I P E N R E C Y G E L Q T R L N T U A K U D E M B R F N R L O O H E V Q R O H D E U E S Z S M Q M M A R E L O Q E S P O N S O R C I A J B R N O I T C N U F B E L E G A G I N G C P E A K S T V V D Y L I M A F L T T Y H I Y Q P P C Q R A Q P A K Y T G V W J T W N F V E S N S C A W F F B C E K T N Z V O A K F Q R E I H E V C S B F ACTIVE AGING BALANCE BLESSING CARE CAREGIVER COGNITIVE CREATIVE DONATE ENCOURAGE FAMILY
FRIEND FUNCTION HEALTHY JOURNEY MEANINGFUL MEMORIES RESOURCES SKILL SPONSOR SYMPTOM
A N E L F A Q R J E E L K K V F P V E D
Featuring Andrew Duarte, Ft. Dodge, Iowa.
I have been creating art as long as I can remember. I received my first camera at the age of 5, and it seems like I have always had a camera in my hand. With my drawings and paintings, I concentrate Andrew Duarte makes funny faces with his son Jake on faces and figures. Painting is where I found color; in contrast my photography is primarily black and white with a concentration on shapes and tone. When I received the diagnosis at age 31 (9 years ago) I thought I would lose my ability to create and much more. But it fueled a passion that was more intense than ever. My drawing got more photorealistic and my photography became more dramatic. When I draw I use my shake to help shade; it has become a tool. I have PD, and it does help define my work and life.
Samples of Andrewâ€™s photography and drawings.
Thank You, Denny!
support groups Support groups in Iowa:
Denny Neubauer was Support Group Facilitator for the YIPS Support Group in West Des Moines for 5 years and says goodbye as he and his wife, Becky, are moving to Illinois. Thank you, Denny, for sharing your smile and talents with the community! We will miss you!
Ames/Story County Sue Trevillyan, firstname.lastname@example.org (515) 233-2089 Ankeny/Polk County Konnie Carlson email@example.com (515) 257-7747 Atlantic/Cass County Jon Jordan, JJordan@wesleylife.org (712) 243-1850 Burlington, West/Des Moines County Ruth Newton, firstname.lastname@example.org (217) 453-2481 Carroll/Carroll County Melissa Schultes email@example.com (712) 794-5815 Cedar Rapids/Linn County Samantha White, LMSW WhiteSJ2@ihs.org (319) 369-8044 Cedar Rapids/Linn County St. Luke’s Hospital Resource Center Dave Jones, daveNmada@q.com (319) 396-7852 John Krumbholz Krummy68@yahoo.com (319) 350-7482 Charles City/Floyd County Carol Quade, firstname.lastname@example.org (641) 228-5053 Clinton/Clinton County Don & Rita Schneider email@example.com (563) 243-5585 Creston/Union County Myra Schindler (641) 344-9065 Davenport/Scott County Eileen Benson (563) 332-6497 Decorah/Winneshiek Mary Marx firstname.lastname@example.org (563) 387-3020
Denny was featured in the Spring 2010 ArtAbility section. Here is an example of Denny’s artwork, wood and golf ball carvings.
Des Moines/Polk county Patrice Webber (515) 231-2445 Valerie Stickle-Diehl (515) 358-0002 Dike/Grundy County Bill & Corrine Hinkle email@example.com (319) 989-2110 Dubuque/Dubuque County Jane Osterhaus firstname.lastname@example.org (563) 582-7313 Fairfield/Jefferson County Melissa Shafer (641) 472-3649 Fontanelle/Adair County Lavon Lutz email@example.com (641) 745-4044 Holstein/Ida County Karla Hansen, (712) 540-0743 Independence/Buchanan County Judy Hess, (319) 334-2969 Iowa City/Johnson County Judi Gust RobertMcCown@msn.com (319) 351-5248 Leon/Decatur County Jim LeFleur, (641) 446-7456 Marshalltown/Marshall County Joyce Hughes firstname.lastname@example.org (641) 752-0349
Mason City/Cerro Gordo County Janelle Nevermann (641) 424-4277 Newton/Jasper County Eloise Prater email@example.com (641) 791-1018 Osceola/Clarke County Connie Gorden (641) 342-2946 Sioux Center/Sioux County Rachael Bowman (712) 722-8325 Sioux City/Woodbury County John Sherman, firstname.lastname@example.org (712) 277-9337 Spencer/Clay County Carolyn Kruger email@example.com (712) 580-1219 Vinton/Benton County Bethany Clemenson (319) 472-2060 Washington/Washington County Amy Kleese Amy_Kleese3@hotmail.com (319) 653-5473 Waterloo/Blackhawk County Terry Hertges, Beno08@aol.com (319) 235-7118 Waukon/Allamakee County Connie Metille (563) 538-4005
Waverly/Bremer County Jennifer Wolff (319) 290-9402 West Des Moines/Polk County Mary Adkins (515) 480-4090 LaDona Molander firstname.lastname@example.org (515) 953-8474 Trenton, MO Gloria Koon (660) 485-6558 Mary Ellen Foland (660) 357-2283
For additional information on support groups, forming a support group, or to have your support group listed, contact the Iowa Parkinson’s Disease Information and Referral Center (877) 872-6386, or go to our website www.apdaiowa.org.
upcoming events, training, education Delay the Disease Exercise Classes
what’s coming up? SAVE THE DATE June 15, 2012 – Annual Parkinson’s Disease Conference at Lutheran Church of Hope, West Des Moines, Iowa. Look for a separate mailing and the upcoming Spring issue of Live it! for conference agenda and more. Looking for Volunteers! If you are interested in volunteering at this year’s conference, please contact Crissanka Christadoss at christCS2@ihs.org or at (877) 872-6386.
“Delay the Disease” is a fitness program designed to empower people with Parkinson’s Disease by optimizing their physical function and helping to delay the progression of symptoms. It is also the foundation for exercise classes geared specifically to counteract the movement challenges experienced by people with Parkinson’s. Delay the Disease is taught in Iowa at the following locations: Atlantic – Heritage House, Free, Contact Jon Jordan at JJordan@wesleylife.org or (712) 243-1850 for dates and times. Clive - YMCA Healthy Living Center, Payment, call (515) 226-9622 for dates and times Des Moines - Wesley Acres, Free, Classes do not start until Mid-2012, call (515) 271-6500 for more information. For information on these or other physical activity programs, please call Iowa Parkinson Disease Information and Referral, 1-877-872-6386.
2012 Iowa Chapter Events July 28 – 29, 2012 – Second Annual Swing to Ease the Burden Softball Tournament at Picker Park in Indianola. If you are interested in playing or sponsoring the event, contact James Winchester at email@example.com August 11, 2012 – 6th Annual Eastern Iowa Fall Parkinson Golf Classic at the Amana Colonies Golf Course. If you are interested in playing or sponsoring the event contact us at firstname.lastname@example.org October 21, 2012 – PD Walkers team in the Des Moines Marathon.
Monthly Informational Meetings at Iowa Methodist Medical Center
Starting on April 12, we will restart the popular monthly information meetings. With the exception of June, these meetings will be hosted on the second Thursday of the month until November. April 12, 2012 – Gary Johnson, Iowa Program for Assistive Technology, will present on various helpful tools for in and around the home. May 10, 2012 – Sue Anderson, Speech Pathologist and Director of Operations of Talk to Me Technologies, LLC, will present in celebration of Better Hearing and Speech Month
Area Conferences Conference on Alzheimer’s and other Dementias – April 30, 2012, 8:30 a.m.-4:30 p.m. Meadow Events & Conference Center in Altoona, Iowa. This conference is for individuals with dementia, as well as family and professional caregivers (CEUs available). Participate in a day of education, information and support provided by local and nationally recognized experts. To register contact the Alzheimer’s Association at (515) 440-2722 or email Polly.Johnston@alz.org. 14
Stay tuned for the months ahead! Disease: A Practical Approach to Evaluation Training Parkinson’s & Treatment for the Physical Therapist, presented by the Parkinson’s Disease Foundation in collaboration with the American Parkinson Disease Association, American Physical Therapy Association and Visiting Nurse Service of New York. This course is designed by physical therapists for physical therapists and provides evidence-based knowledge on how to effectively evaluate and treat individuals with Parkinson’s. Training will take place on April 20, 2012 at the NYU Langone Medical Center, 550 First Avenue, New York, NY. Registration opens on Monday, January 2, 2012. $50 to attend in person (boxed lunch included). Online course is available at http://support.pdf.org/ptherapy starting May 2, 2012 and will be available online for up to one year.
Parkinson’s Action Network Launches
new advocacy program
The Parkinson’s Action Network has launched their new grassroots advocacy program. Run by Hayley Carpenter, Director of Outreach, with the help of Elizabeth Kwasnik, Program Assistant, Carpenter discusses how there are different levels of involvement and advocacy built into the new program. The new grassroots program came about to provide a wider variety of roles for current and future advocates to play. Q. So, tell us about the new grassroots structure, and the different roles people can play. Hayley: Within the new grassroots program, advocates can get involved at four different levels: e-Advocates receive email Action Alerts from PAN when important issues arise in Congress and in the administration. These Alerts take only a few minutes to complete and advocates’ voices will join thousands of others across the country advocating for better treatments and a cure for Parkinson’s. For those interested in making a bigger impact, they can volunteer to be an Assistant State Director. Assistant State Directors work with their state’s grassroots leadership, communicate with Members of Congress, and build relationships within their communities. In select congressional districts across the country, District Delegates serve as the lead contact with their Representative and his/her staff. District Delegates work within their community to build a base of informed e-Advocates, establish a strong relationship with their Representative, and are a point of contact for their State Director and PAN staff. State Directors work closely with PAN staff to manage their state’s volunteers and outreach efforts. State Directors lead their state’s advocacy work, oversee grassroots advocates, and serve as the state’s spokesperson on Parkinson’s-related policy issues. More information about each of these positions is available on the PAN website. And, we’re actively recruiting State Directors in many states across the country. Visit www.parkinsonsaction.org/your-voice/pan-your-state
Q. Will you offer training for people who are new to advocacy, or who might need a little help learning more about federal policies related to Parkinson’s disease? Hayley: One of the features of the new program is that we’ve created an online training module which anyone can use. It goes over the basics of what PAN’s work in Washington
focuses on and provides a foundation in advocacy. A few of the topics included in the training sessions are: communicating with your member of Congress; PAN’s legislative issues; how to complete PAN’s Action Alerts; and how to be a leader in your community. An advocate’s State Director can also be a great resource for learning more about advocacy! Those who are interested in getting involved or in viewing the training sessions, can visit www.parkinsonsaction.org/train. Q. For those who might be intimidated or unsure about becoming an advocate: does one person’s voice really make a difference? Hayley: Absolutely! One person’s voice does make a difference. Your voice and your personal story are powerful. You can build relationships with a member of Congress or his/her staff, people in your community, and/or with local researchers and clinicians and make a huge difference in awareness and public policy. When thousands of individual voices are combined, the Parkinson’s community cannot be ignored. Q. If someone wants to become more involved with PAN, who should they contact? Hayley: Those interested in learning more or becoming involved with PAN, can get started in a variety of ways. • Sign up for PAN’s Action Alerts: www.parkinsonsaction.org/content/become-pan-e-advocate • You can also call the PAN office in Washington, D.C., toll-free at 1-800-850-4726. • If you’re interested in doing more, you can become an Assistant State Director – www.parkinsonsaction. org/train.
Remember: every voice counts, and PAN is here to provide the tools and support for advocates’ voices to be heard loud and clear in Washington, and effect real change for people living with Parkinson’s. This information was an excerpt from an interview published by the Parkinson’s Action Network in their November Monthly Message. The Parkinson’s Action Network (PAN) is the unified voice of the Parkinson’s disease community – advocating for more than one million Americans and their families. To become a PAN advocate, go to www.parkinsonsaction.org
On October 16, 2011, the 2011 PD Walkers at the Des Moines Marathon had over 125 team members wearing green PD Walkers shirts out on the course either running, walking or volunteering! The team not only raised awareness of Parkinson’s disease, they also helped raise over $15,000 for the Iowa Chapter of APDA and inspired more people to join them at next year’s event! The team also held a pasta dinner on Saturday, October 15th at Mama Lacona’s in Urbandale, where Crissanka Christadoss, Coordinator of the I&R Center, informed us about the benefits of having an Iowa I&R Center and Trina Radske-Suchan, Medical Director of the YMCA-Healthy Living Center, gave us inspiring information on the healing power of exercise. LaDona Molander, founder of the team, closed by thanking all the participants, supporters and sponsors (Stadia Sports Medicine and LG Seeds). Thank you to all who supported the team and a huge thanks to Ken Sherman for all the photos captured that day! To view more photos go to http://tinyurl.com/3wk3h3y
Lynette Barrus Linda Birocci Paul Birocci Danielle Bloxham Joan Bruning Abby Burton Sheila Burton Kara Campbell Crissanka Christadoss Rita Clark Jen Daniel Collin Davison Kristin Davison Katie Doerhoff Jeremy Dyvig Kurt Erickson Stacey Erickson Wyatt Erickson Susan Evans Katie Farhang Jan Ferris Carlie Fitzgerald Tony Fitzgerald
Ervin Fopma Gayle Fopma Janine Frettim Allie Gill Amber Gill Blaine Gill Kristin Goracke Casey Halder Cooper Halder Dan Halder Karen Halder Janet Hasstedt Rebecca Holmes Mark Jackson Mary Jones Jon Kallen Meg Kayko Shawneene Kenan Brenda Kiner Diane King Angie Klobnak Michael Kramer Karen Larson
Mike Larson Roberta LeMaster Elizabeth Lemcke Jeff Logan Kendra Logan Gail Lommen Erik Luthens Penny Luthens Allison Martin Dennis Martin Lori Martin Tyler Martin James McConkey Joe McConkey Cheryl McDonnell Andrea McFadyen Caroline McKinney Cindy Mews Jayme Mews Sue Mews Kimm Miller Kathy Miner Rodney Moe
Sabrina Moe Jeff Molander Krislyn Molander LaDona Molander Reed Molander Ryan Molander Dora Moore Roger Moore Gabe Moreno Gretchen Muller Jon Muller Sue Nelson-Vanderzyl Deb Newman Anne Nordquist Gary Nordquist Colleen Norgren Kara Norgren Roger Norgren Cindy Olson William Olson Barb Ostrander Cole Owens Tori Panek
Laurie Politzer Jennifer Prashak Mitch Prashak Robin Prier-Ross Deb Quintero Trina Radske-Suchan Carla Ray Karla Richards Kris Robson Zach Robson Michae Ross Sarah Runchey Shirley Schulze Denise Scott Kristin Sherman Carol Sieck Sarah Steward Barb Stokes Macauley Stokes Alecia Tank Christopher Tank Jack Tank Marisa Tank
Susan Tank Brian Town Judy Town Sarah Town Sheila Treu Jennifer Voorhees Kevin Wagner Logan Wagner Lynette Wagner Connie Weaver Diane Weiser Mallory Weiser Sarah Wigen Heather Wilcoxson Jen Williams Kathy Willis Cyrus Winters Shirley Winters Jason Wulf
August 2011 - November 2011
Many companies and corporations will match your tax-deductible gift and double or triple the amount contributed to continue the APDA mission “To ease the burden and find a cure”. Gifts can be in the memory of a loved one, friend or to celebrate a special occasion. A card is sent to the designated person telling them of your generosity and thoughtfulness. Please send your donations to: • Iowa Chapter of the American Parkinson Disease Association, Inc. PO Box 507, Waukee, IA 50263 www.apdaiowa.org
Iowa Chapter of the APDA Members: Co-Presidents: Jeff Molander and Sabrina Moe Treasurer: Greg Armitage Directors: Rolando Chavez, Gayle & Ervin Fopma, Mary Jones, John Krumbholz, David McNeill, LaDona Molander, James Winchester Past President: Joel Jacobsen
• American Parkinson’s Disease Association, Inc. - National Office 135 Parkinson Avenue, Staten Island, NY 10305, (800) 223-2732 www.apdaparkinson.org
The Iowa Parkinson Disease Information and Referral Center is grant funded by American Parkinson Disease Association
Keith and Christy Kroner l YIPS Support Group
In Memory: In Memory of James Agan Donor Name: Barbara Agan Bonnie Henrich James & Marilyn Mullin
In Memory of Leland Lloyd Long Donor Name: Linda Fowler
In Memory of Dean Eckardt Donor Name: Lori Baker Richard Bodtke Rick & Kay Demory Dean & Carolyn Eckardt Ken & Donna Reams Karen Whalen-Ward In Memory of Adrian Foecke Donor Name: Family of Adrian Foecke In Memory of Berney Gast Donor Name: Betty Gast Cyndi Spears
In Memory of Jan Nail Donor Name: Gary & Susan Allen In Memory of Roger Sewell From the Grundy County Area Support Group Donor Name: Mary Sewell In Memory of Joyce Pauling Donor Name: Duwayne Pauling In Memory of Don Worster Donor Name: Lee & Dirk Vander Linden In Memory of Richard Town Donor Name: S. Spellman
In Honor of Lynette Barrus Donor Name: Dean Hayes
In Honor of Harry Pringnitz Donor Name: June Pringnitz Ruth Brauer
In Honor of PD Walker, Sarah Steward Donor Name: William & Nancy Steward In Honor of PD Walker, Wayne Tank Donor Name: Earl & Lela Odland
Donations: Danielle Beliveau Charles & Robin Davis William Halbach Tom Horton Keith & Christina Kroner Jana Mentzer
Jeff Molander John & Bonnita Norby Lynette & Kevin Wagner Maurice, Iowa Women’s Club East Sac (Iowa) High School Volleyball Team
Corporate Donations: Beyond Components
Casey’s General Store
Wells Fargo Community Support Campaign: Danielle Beliveau Jeff Molander
Jeff Stark Rich Wells
and other resources
8 Web Links
Here are a few helpful websites. See a more complete list, including information on clinical trials, prescription assistance, catalogs for adaptive equipment and clothing, and more, at www.apdaiowa.org.
Parkinson’s Disease - General
American Parkinson’s Disease Association .....................................................www.apdaparkinson.org American Parkinson’s Disease Assn, Iowa Chapter . ......................................www.apdaiowa.org Parkinson’s Action Network . .............................................................................www.parkinsonsaction.org American Academy of Neurology ....................................................................www.aan.com The Movement Disorder Society . .....................................................................www.movementdisorders.org WE MOVE: Worldwide Education and Awareness for Movement Disorders . .....................................................www.wemove.org Living Well with Parkinson’s Disease ...............................................................www.pdplan4life.com National Institutes of Health: Parkinson’s Disease . ........................................nihseniorhealth.gov
National Family Caregivers Association...........................................................www.nfcacares.org Iowa State University Extension Family Caregiving . .....................................www.extension.org/family+caregiving Coping with Caregiving ......................www.extension.purdue.edu/cfs/topics/hd/resources/CopingCaregiving.pdf
Listservs (online discussion groups)
Parkinson’s Disease Blog Network ....................................................................www.parkinsonsblognetwork.com Brain Talk Communities ....................................................................................http://brain.hastypastry.net/forums/ Parkinson’s Information Exchange Network Online ........................................... www.parkinsons-information-exchange-network-online.com
in the community - past events
Deep Brain Stimulation Presentation - October
Caregiver’s Brunch - October
Kenneth Follett, M.D., Professor and Chief of Neurosurgery at the University of Nebraska Medical Center, came to Iowa Methodist Medical Center (Des Moines) in October to present on Deep-Brain Stimulation.
At the Plymouth Church (Des Moines), Attorney Scott Hartsook from Iowa Legal Aid presented on Medicaid Eligibility and the Elderly Waiver Program; Sam Erwin, Spiritual Director, presented on Caregiving as a Family.
© 2006, www.Lifeprint.com. Used with permission.
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Published on Apr 10, 2012