Live It! Spring 2012 "Living Well with Parkinson's" - LaDona by Iowa Chapter of the American Parkinson Disease Association

A Resource for Iowans with Parkinson’s Disease and those who care for them.

LiveIt! is a publication of the Iowa Parkinson’s Disease Information and Referral Center

volume 3 l issue 2 spring 2012

ive living well with Parkinson’s LaDona Molander

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table of

contents

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ive

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From the Staff Contact Us

From Our Medical Director Nutrition Corner

Protein

Ask the Experts

6 - Exercise Your Brain - Ride a Bike 7 - Early Onset vs. Early Stage Parkinson’s Disease

l The Right Tools for the Job Accessibility Tips for Microsoft/PC Users

9 10

Get to Know l Cover Story l

Living Well with Parkinson’s Disease

14 15 16 17

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18 19 20 21 22 23

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Support Groups Upcoming Events, Training and Education Get Involved - Parkinson Action Network (PAN)

April is Parkinson’s Awareness Month

LiVE

Feature Article

Sudoku and Artability

Everyone Knows a Teacker

Kudos

Donors

Annual Parkinson’s Conference Details Links and Resources Sign Language and Acknowledgements

Table of Contents

18 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 christcs2@ihs.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.

Welcome readers to the Spring issue of Live it! magazine! We hope you will also join us to celebrate the month of April as Parkinson’s Awareness Month.

letter from the

Live it! staff

Spring is a time of growth. Growth of seeds planted, trees forming new buds, animals and their new offspring and the growing grass that soon needs the attention of the lawnmower that was stored for the winter. In this issue, we offer you articles and information that we hope will help you to grow in your knowledge of Parkinson’s Disease and offer ways to manage the disease and live a life of quality. You will also find stories from people whose strength and courage in facing the symptoms and emotions of Parkinson’s Disease encourage us, as well. Whether we realize it or not – we are always growing. It is pretty fitting that the symbol for Parkinson’s awareness is a tulip. Our cover story this month features LaDona Molander, newly elected Iowa Chapter Co-President, exercise trainer and advocate. Diagnosed with Parkinson’s in her early 30s, LaDona openly shares her story, even the dark times. With the support of her family and community and inner strength, LaDona’s story is one that will inspire. In our feature story this month, Eric Neubauer has interviewed high school teacher Dave Waggie about his journey and his love for teaching and volleyball. We have also included a “Get to Know” section this month - get to know some of your fellow Live it! readers.

Live it! Staff

Medical Director: Lynn Struck, M.D. Editors: Crissanka Christadoss and Linda Jordening Contributing Writer: Eric Neubauer 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

Other articles include one on exercise research by Dr. Jay Alberts, Cleveland Clinic researcher; an article on Young Onset vs. Early Onset by APDA Young Onset Center’s Director, Julie Sacks; Quality Measures in Neurology by Medical Director and Neurologist, Dr. Lynn Struck and a nutrition column by Iowa Health – Des Moines dietician Carrie Leiran. Last but not least, please SAVE THE DATE for our annual conference on June 15. Refer to page 21 for a look at the agenda and activities. We also encourage and welcome your submissions, story ideas, artwork and photographs to the Live it! magazine. Please refer to the bottom of page 2 for submission guidelines. Until next time!

The Live it! Staff contact us:

Request for Submissions:

The staff would like to invite words and photographs from you. Share with us photographs of you, your artwork, your words – anything that shows how you Live it! Please see submission guidelines on the bottom of page 2.

Disclaimer:

All material related to Parkinson’s disease contained in this magazine is solely for the information of the reader. It should not be used for treatment purposes, but rather for discussion with the patient’s physician. Specific articles reflect the opinion of the writer and are not necessarily the opinion of the editorial staff, the Information and Referral Center, the medical director of the Center, The Iowa Chapter of APDA or the APDA.

Iowa Parkinson Disease Information and Referral Center Iowa Health – Des Moines 1200 Pleasant Street E-524 , Des Moines, Iowa 50309 (877) 872-6386 www.apdaiowa.org

Live it!

Spring 2012

Lynn K. Struck, M.D. Neurologist Physician Specialty Clinic Iowa Health – Des Moines

from our

medical director The Iowa Parkinson’s Disease Information and Referral Center and LiveIt! magazine are privileged to have board certified clinical neurologist Lynn Struck, MD as our advisory Medical Director. Dr. Struck is on staff with Iowa Health Physicians, Des Moines, and is a leading expert in movement disorders in Iowa. She has focused her career on advances in treatment of her many patients with Parkinson’s disease and ongoing research to find better treatments and, ultimately, a cure.

Quality Improvement in Neurology: Parkinson’s Disease Quality Measures Recently, there was a report of the quality measurement and reporting subcommittee at the American Academy of Neurology. Prior to this, most quality measures have focused on primary care and common conditions such as diabetes. The American Academy of Neurology adopted a measure development process for Parkinson’s disease. Measuring the quality of health care is now central in the evaluation and health care plans for large corporations, hospital accreditation, physician reimbursement, and maintenance of certification by specialty boards and Medicare. The quality measures for Parkinson’s disease resulted in ten measures grouped into three categories. Six measures assess Parkinson’s disease symptoms. Five of these pertain to nonmotor symptoms. This would include questions about sleep, cognitive performance, psychiatric disease, constipation, bladder function, and blood pressure problems.

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.

The second category reviews the patient’s diagnosis or treatment. This includes a review of current medication and response to medications. It also discusses whether appropriate physical, occupational, or speech therapy is necessary. Finally, various treatment options including no pharmacological treatment and surgical treatment should be reviewed at least annually. The third category is a safety measure, and this includes questions such as whether the patient is in a situation to prevent injury, appropriately take medication, and also to assess driving. The measures are part of health care reform that will be becoming more and more noticeable in your medical care in the future. Prior to a clinic appointment, it is important to consider these issues and take a few notes if you are having problems regarding any particular issue so that these can be appropriately addressed by your neurologist or primary care provider.

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

nutrition corner

Protein Protein is needed for growth and regeneration of tissues and cells. Food groups that contain greater amounts of protein include lean meats such as fish, poultry, pork and beef, dairy foods like milk and plant sources such as beans. The amount of protein needed depends on weight, activity level and disease processes. For sedentary individuals, the range is 0.36 to 0.46 grams per pound.

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.

In early stages of PD one can easily achieve the needed amount of protein and choose the desired source of protein. As PD progresses, adding medications, specifically two classes, interferes with protein metabolism. 1. MAO Inhibitors (Azilect) require the reduction of proteins richer in tyramine, an amino acid. In the presence of an MAO Inhibitor, large amounts of tyramine inhibitor can constrict blood vessels, leading to increased blood pressure and possibly escalating into a hypertensive crisis. 2. Carbidopa -Levodopa (Sinemet or Stalevo) require the redistribution of protein intake with lower amounts earlier in the day and higher amounts later in the day. The breakdown of larger amounts of protein in the presence of the medication can lead to competition for dopamine absorption sites- ultimately making movement more difficult. Remember the big picture! Protein is only one component of a balanced diet.

Average Protein Content of Selected Foods: • Milk or Yogurt • Vegetables • Fruit • Bread/Starches • Meat, Poultry Fish, Egg • Beans, Lentils

1 cup 8 grams 1/2 cup cooked 2 grams 1 cup raw baseball size 0-1 gram 1 slice 2-5 grams 1/2 cup cooked 3/4 cup flaked cereal 1 oz cooked 7 grams 1/2 cup

7-10 grams

Sinemet and Protein Needs

• Take Sinemet 30 to 60 minutesa before meals • Redistribute protein in diet • Low protein earlier, higher protein later in day • Calculate a meal plan with a ration of 4-5 to 7 grams of carbohydrate to 1 gram of protein • Choose lean, high quality protein

MAO inhibitors & Tyramine in Foods • Selegiline (Eldepryl), Selegiline ODT (Zelapar) and Rasagiline (Azilect) slow metabolism of dopamine • Large amounts of tyramine in foods can cause the release of excess norepinephrine which can constrict blood vessels, increase blood pressure to hypertensive crisis.

Tyramine in Foods to Avoid

• Air-dried, aged and fermented meats • Sausages and Salami • Pickled Herring • Spoiled or improperly stored meat, poultry, fish and animal livers • Aged cheese such as cheddar, English Stilton, Swiss or blue cheese. • Vegetables: broad beans, sauerkraut, most soy products • All varieties of tap beer, beer that is not pasteurized and Vermouth

Live it!

Spring 2012

ask the experts

exercise your brain ride a bike

By Dr. Jay Alberts, Cleveland Clinic Researcher Everyone knows exercise is good for the heart, but what about for the brain? Emerging data suggest specific types of physical exercise may actually improve brain function. Dr. Jay Alberts, originally from Sanborn, Iowa, was riding through the cornfields of Iowa with a Parkinson’s disease (PD) patient on RAGBRAI in 2003 and discovered that tandem cycling may improve PD symptoms. After a few days on the bike, his riding partner noticed a dramatic improvement in her handwriting, which had been deteriorating due to her disease, as she wrote out a birthday card – effortlessly and legibly. It turned out, riding the tandem was making the difference.

Riding a tandem bicycle allows for a type of exercise called “forced-exercise.” Forcedexercise is a type of exercise in which a person is assisted in achieving and maintaining an exercise rate that is greater than their preferred, voluntary exercise rate. In this case, the Parkinson’s patient could pedal on her own at a rate of approximately 55 revolutions per minute (RPMs). When she rode the tandem bike with Dr. Alberts, they pedaled at a rate or cadence of 80-90 RPMs. Thus, she was “forced” to pedal faster than she could by herself. Recently, we have published an article in which we reviewed different types of aerobic exercise, specifically highlighting the effects of an eight week exercise program in which forced exercise was compared to voluntary exercise in relation to Parkinson’s motor function. The results indicate that patients who participate in forced exercise show substantial improvements in overall motor functioning compared to patients who engage in voluntary exercise. The positive improvements in motor function even lasted up to eight weeks after exercise was completed. This data, along with results from the animal studies, suggests that exercise rate or effort may be an important variable in improving function in people with Parkinson’s disease. Dr. Alberts and his team of researchers are currently working to develop a paradigm to make this form of exercise more accessible to patients by using an electric motor and special motor control algorithm to deliver forcedexercise. He and his team are also working toward learning more about the effectiveness of long-term voluntary exercise in newlydiagnosed PD patients. In the meantime, you can ask your doctor or physical therapist how to safely integrate forced-exercise into your program. As with any exercise, consistency and compliance are critical if the program is to be effective and produce results. With a little dedication and time, we hope that you may soon proclaim that exercise really is medicine. Watch for Dr. Alberts and the Pedaling for Parkinson’s team as they participate in their 10th consecutive RAGBRAI this summer.

ask the experts

early onset vs. early stage Parkinson’s Disease

By Julie Sacks, LCSW, Director of the APDA National Young Onset Center Early onset Parkinson’s disease (also called young onset Parkinson’s disease) is now being recognized and diagnosed more frequently. How do you know if you’re considered “early onset” or “young onset”? It is a difficult question to answer, especially in our current culture where “40 is the new 30”, “50 the new 40” and so on.

Julie Sacks, LCSW Director of the APDA National Young Onset Center

From a medical perspective, young onset Parkinson’s disease (YOPD) is defined as diagnosis under the age of 40. Other sources have different definitions; the most common being diagnosis under the age of 50. So what if you are diagnosed at 52? You are working and have two teenage kids who will soon go to college. Are you still considered “young”? Most people with Parkinson’s would say yes – once young, always young - because no matter how old you get, you will always know what it’s like to have YOPD. While “early” and “young” are used interchangeably when it comes to diagnosis, in other situations they are not. For example, it is not unusual for people to say they have early onset Parkinson’s disease when what they mean is that they have early stage PD. Early stage is just that, it is the beginning stage of the disease which everyone with PD will go through, regardless of their age at onset. The APDA National Young Onset Center does not determine young onset in terms of chronological age or stage of illness. Instead, we focus on helping those who are trying to manage the same kinds of challenges younger people with PD face. Employment concerns are often at the top of that list. Parenting, maintaining relationships and managing financial and legal issues are other areas of concern.

The Cente r’s Website , w 8 ww.youngparkin sons.org, is full of in formation that addresses the physic al, emotional and practic al aspects of the dise ase throug h articles, personal s tories, reso urces and more. Alth ough crea ted specifically for young onset, much of th e site cont ent is relevant to people of all ages with PD. F or more in formation , contact th e APDA Na tional Young On set Center at (877) 223-3 801, or em ail us at apda@you ngparkins ons.org.

Live it!

Spring 2012

the right tools for the job

Accessibility tips for

Microsoft/PC users

By Gary Johnson, ATP - Iowa Program for Assistive Technology Problem #1: Where is my cursor? Cursor has left the page and can’t be found. Solution! Use “Snap To” and here is how. Click on START in your lower left hand corner. Then click on SETTINGS. Click on CONTROL PANEL. Click on MOUSE. Click on POINTER OPTIONS. Under Visibility Options check the box adjacent to the cursor within two circles - the writing next to the box says something like “Show location of pointer when I press the CTRL key.” The CTRL key is in the lower left hand corner on your keyboard. Intentionally hide your cursor and then hit the CTRL button on your keyboard-it finds it every time! Problem #2: I meant to only touch the key once, but it entered 3 times and now I have to correct it. Solution! Use “Filter Keys” and here is how. Click on START in your lower left hand corner. Then click on SETTINGS. Click on CONTROL PANEL. Click on Accessibility Options. Select Keyboard and then you will be able to choose whether you want windows to ignore repeated keystrokes, or slow the repeat rate.

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 8

Problem #3: I need things magnified. I just can’t see small things well. Solution! Use Microsoft’s built-in magnifier. Click on START in your lower left hand corner. Click on Programs. Click on Accessories. Click on Accessibility. Click on Magnifier. An adjustable magnification box will follow your cursor. Now that you know about screen magnifiers, you might ask if better, clearer ones exist. They certainly do, just Google screen magnifiers and you will find that there are many options.

For information and demonstration videos on all of the above and more, go to: www.microsoft.com/enable. Contact Iowa Compass for information on local computer training courses and organizations in your area. Hours: Monday to Friday, 8 a.m. – 5 p.m.; Phone: Voice: (800) 779-2001, TTY: (877) 686-0032; General inquiries or services questions: iowa-compass@uiowa.edu; or visit www.iowacompass.org

get to know

get to know...

Age: 45 Hobbies: Playing and watching soccer, playing golf, reading a good book and spending time with family.

Colleen Taylor from Mason City, Iowa, says “Life is a Dance, Go for the Joy.”

Rolando Chaves

Favorite Food: Too many! Mostly seafood, steak and pasta. What is your profession: Information Technology Resource & Project Manager for Pioneer Hi-Bred.

Age: 72 Hobbies: I love journaling, reading personal growth books and listening to peaceful music. Before, I used to be a music teacher, director, performer and minister of music.

Rolando Chaves, Polk City, Iowa

Colleen Taylor

Favorite Food: Liver & Onions How do you keep active: I exercise every day by walking one to two hours. I meditate one hour every day by sitting in my recliner, my palms facing upwards and I say silently “talk to me God.” Then I listen. What do you do in your community to educate others about Parkinson’s?: I am on the committee for the local Parkinson’s support group that meets monthly. I have led one program at my support group that I developed titled “Youthing Instead of Aging: Strong Body, Clear Mind, Long Life.” I have the group follow me in several exercises, and I offer supportive words and wisdom. I always tell everyone “You are a magnificent human being.”

Family: My wife, Gina, daughter, Kelsey (21) and son, Braden (19). In Costa Rica we have a very large extended family with my mom and dad, two sisters and one brother, and 22 uncles and aunts. What do you do to help spread awareness and educate others on Parkinson’s disease? I am open about my issues, I don’t hide them. I recently joined the Iowa APDA board where I will look for opportunities to help raise awareness about PD. What is the best piece of advice you can give to others? Don’t hide your afflictions or symptoms. I spent a lot of energy doing so at the beginning, and it caused unneeded stress. Plus, hiding it doesn’t help to educate others. Favorite quote? “All that we are is the results of our thoughts.” - Buddha What is your favorite thing about Iowa? Coming from a place with only two seasons, summer and rainy, I like the Iowa seasons. You always have something different to look forward to in the next season.

Tom and Pat Horton, Ames, Iowa, as told by Pat Horton Ages: 63, 61 Hobbies: Tom is a huge ISU basketball fan and goes to all the home games. And we love to travel. So far we’ve been to Egypt, Cancun, San Francisco, and Florida. We’ve been to Vermont to see the seasons change (people who do that are called ‘leaf peepers’), and are planning a trip to Washington, D.C. to see the Smithsonian. We are also planning to go to the Apostle Islands and tour the lighthouses. We celebrated our 25th Anniversary at the Grand Canyon. Neither of us really likes to sit still. Pets: Our son’s cat, Stimpy. What do you do to keep active in the community? We attend two support groups, one in Ames and the YIPS support group in West Des Moines.

Tom and Pat Horton in Egypt

How do you keep active?: Since Tom was diagnosed, we take smaller trips. Recently we tried geocaching, an outdoor activity where a geocache – items in a water tight container – is held at a location, such as a state park. You are given a longitude and latitude and using a GPS system, you hunt for it. There are different levels, from easy to hard to find! What are your professions?: Pat is an Account Clerk at ISU and Tom used to work for computer and electrical maintenance for the 3M Corporation.

cover story

living well

with Parkinson’s

LaDona Molander

“I may have Parkinson’s disease, but it doesn’t have me.” LaDona Molander has taken this as one of her personal mottos. Initially misdiagnosed with essential tremor (ET) at the age of 30, LaDona never suspected that the symptoms might last for the rest of her life. She did very little research into the diagnosis, and was concerned mainly with relieving the symptoms. She believed they could be controlled with beta blockers. “Thinking back, I probably should have been more concerned when my left side became slower as I bent to pick up tennis balls, or when a neighbor commented on my shuffling down the driveway,” LaDona admits. She began eating bananas and taking quinine for her cramped legs, but it didn’t help. She finally decided it was time to get answers when relatives asked why she couldn’t stop shaking after water skiing. She went in to get an MRI to rule out MS and stroke—that was when she was diagnosed with an essential tremor.

LiVE

LaDona continued to play tennis and tried to work the beta blockers around her matches, but she was disappointed with the way the medicine slowed down her game. After living in Memphis for seven years and living with the ET diagnosis for one, LaDona and her family were transferred to Las Vegas.

LaDona and Jeff Molander with their children Reed, Krislyn (sitting with Tootsie), and Ryan

“I may have Parkinson’s disease, but it doesn’t have me.”

A local neurologist listened to LaDona recount her symptoms, and they tried a variety of medications. After six weeks of trial and error, she was referred to a UCLA Movement Disorders Neurologist, where she was immediately diagnosed with Parkinson’s Disease (PD). That was 13 years ago, when she was only 32. LaDona remembers two emotions upon being diagnosed: “I was relieved, because I finally had a name for what was causing my issues, and determined, because I was so young, I felt I was going to beat it. I was so naïve and uneducated about what my future held. I had no idea (which was probably a good thing) that this was going to be a battle for life! I truly believed that I was going to beat

this.” Although no longer naïve, LaDona still has to have that same belief.

gambling, I didn’t relate it to my meds because we were living in Las Vegas—everyone gambled!”

At the time she was diagnosed with PD, the disease had not progressed enough to affect LaDona’s daily life. She had the time and energy to raise her three children, who were four, five, and eight at the time.

Then, after about six months of compulsive gambling and almost losing her family, LaDona ended up in outpatient rehab. “This was a very dark time in my life,” LaDona remembers. “It changed me into who I am today. I truly feel that although it took a lot of ‘me’ away, the experience gave me an understanding, compassion and empathy I would not have without my own personal struggles.” While in the rehab program, the doctor gave lectures about how an addict’s brain works differently than a normal brain—an addicted gambler’s brain is using more dopamine than a normal brain. This was a huge revelation

After doing some initial research, she decided one of her top priorities would be making sure her children were not ashamed of her and would not be embarrassed when their friends asked questions about their Mom’s shaking. She educated her children about PD in case someone asked about their mom. She also visited their schools and spoke to their classes about the disease. “I had the benefit of not having to work full time,” says LaDona. “I was able to exercise regularly and just tried to keep things as normal as possible.” She never considered keeping the diagnosis from her children. After her UCLA diagnosis, she found a doctor in Las Vegas who had many patients with movement disorders. He was interested in her young onset diagnosis and was eager to help in any way, including listening to her symptoms and reactions to the meds. In the first two or three years after she was diagnosed, she tried many different medications. “The symptoms were very noticeable to me back then, but it was nothing compared to now. As I said, I was naïve and figured the meds would help me beat this thing called PD.” Some of the meds controlled the tremor but made her forgetful or confused (she told her kids that she took a “stupid pill”).

The Dark Times One drug that helped with the symptoms was Mirapex—the side effects, though, were devastating. After taking the drug for about three months, LaDona started putting puzzles together and staying up all night. She then started shopping, and eventually moved on to gambling. “As I think back, it didn’t happen overnight. I’m a math person, so I love puzzles, and I’ve always been a night owl, so I didn’t associate the changes with my meds,” LaDona says. “I started to become depressed and mentioned it to my doctor. Since I was trying different medications, we decreased and increased doses. Even when I started

2011 PD Walkers Team at the Des Moines Marathon

for LaDona. With PD, the brain does not produce enough dopamine and patients take meds to replace it. LaDona went to see her neurologist with the information, and though he was surprised, he wasn’t shocked. He had recently spoken with a colleague in Arizona who had been noticing an increase in gambling in his patients on Mirapex. “Once I got off that medication, things changed rapidly. It was like I could think clearly again,” says LaDona. “About 12 years ago there was breakthrough news that a Parkinson’s medicine could cause compulsive gambling and other compulsive behaviors. That was about six months after I stopped taking the drug…talk about relief. I could finally blame the drug for what happened. I was ashamed and embarrassed for not being aware enough to figure it out until it was almost too late!”

(continued on next page)

Live it!

Spring 2012

cover story

the disease. Increased awareness is one of the walking group’s primary goals. They want to enable people with PD to be more comfortable in public and not be embarrassed to share their diagnosis, as well as to make others aware of the disease and the resources available in Iowa.

LaDona leads a Delay the Disease exercise class at the YMCA Healthy Living Center in Clive, Iowa.

Learning to Live Well Even in her darkest days, exercise was an integral part of LaDona’s daily routine. Working out helped keep her head straight— at one point it was almost obsessive. She credits her regular exercise with helping her medications last longer and with slowing the progression of the disease. Because staying active has benefited her so greatly, LaDona became a certified personal trainer and a certified instructor for Delay the Disease, a fitness program designed to empower people with Parkinson’s. Every Tuesday and Saturday, she leads a small group of people with Parkinson’s through a series of exercises. Big steps, big movements, core work, balance work, leg work—all to keep the muscles strong and loose. “I love it. I wish we could offer it more often,” says LaDona. “Our exercise group is really like a small support group. Parkinson’s is not taboo to talk about—it is part of the class.” In addition to leading exercise classes, LaDona formed a walking group that is now four years old. The PD Walkers raise money for the Iowa Chapter of the American Parkinson Disease Association and the Iowa Information and Referral Center by walking in the Des Moines Marathon. The Center provides educational materials, establishes and maintains support groups, and plans seminars, workshops, and an annual conference, all to provide support for those with PD and to raise awareness of 12

Mother, wife, personal trainer, activist, co-leader of YIPS (PD) support group, Co-President of the Iowa Chapter of the American Parkinson’s Disease Association— LaDona has been living a fulfilling life. But over the years her Parkinson’s has become more difficult to manage. She now experiences difficult side effects from her current medication, Sinemet®. The worst, especially over the last two years, has been the dyskinesia—involuntary muscle movements. “I feel like I have no control over my own body,” explains LaDona. “At times, I almost feel drunk and probably look like it too.”

The Next Step Because LaDona was diagnosed at such a young age, doctors delayed starting her on Sinemet, the most powerful medication for PD, until seven years ago. In most patients, the drug works well for only a few years before the side effects set in. One of the most common side effects is the dyskinesia that LaDona experiences. Since Sinemet’s effectiveness in treating PD symptoms becomes more unpredictable as time progresses, LaDona must continuously adjust her dosages. “I feel like a chemist. If every day was exactly the same, if I did and ate the same thing, it would be easy—but life isn’t like that,” says LaDona. So, at 45, LaDona is unable to routinely regulate her medications and has exhausted her options. Her on-time—the time during which her symptoms go away—has significantly decreased. This pushed her and her family towards a difficult decision. In the middle of January, LaDona underwent deep brain stimulation (DBS) surgery.

DBS reduces PD symptoms by triggering electrical currents in carefully chosen locations in the brain. The multiple-step surgery includes inserting electrodes in the brain, placing a battery pack in the chest, and linking it to the electrodes with under-the-skin wires. As with any brain surgery, DBS carries risks and causes trepidation in those about to undergo it. “My doctor told me you have to be ready to take the risks,” says LaDona. “I had fears—it’s brain surgery!—but I was ready.” LaDona hopes that the surgery will turn back the clock ten years. That would mean taking half as much medicine as she currently takes, which means there would be fewer side effects. “I’ve talked to many people who have undergone the surgery, and they all say they would do it again.” The surgery date was January 18, but it will be a month and a half before the benefits kick in. That is when the doctors turn on and calibrate the electrodes.

A Community that Cares

LaDona’s friends hosting a “Happy Hat” party before her surgery.

Luckily, LaDona has a very good support system. Her friends hosted a Happy Hat party before her surgery and signed up to make meals for four weeks afterwards. “I feel very lucky to be in a community where everyone is so caring!” says LaDona. Her husband, Jeff, especially goes beyond simply supporting her—the two team up to champion PD research and awareness. The husband-and-wife team also travelled to Scotland in 2010 for the World Parkinson’s Congress, where they learned about the latest PD science. “When I was first diagnosed, he didn’t understand that there were times that I just needed to rest,” remembers LaDona. “Now, he knows that I can’t always do what I want to do. He encourages me and is always there for me. We always say that he’s not a caregiver, he’s a care partner.” Today, LaDona’s daughter, Krislyn is 21, son Ryan is 18, and son Reed is 17. They are normal teenagers, but LaDona hopes that living with a mother with PD has made them more compassionate to others with disabilities. “They’ve grown up a little faster than some kids,” says LaDona. They support their mom and help with the cause by participating in PD events and being at every walk. They have even asked friends and classmates to join them each year.

LaDona and Jeff visiting Scotland in 2010 for the World Parkinson Congress.

After her surgery, LaDona will return to her passions—raising awareness of PD and delivering this message to others who have the disease: “You can live well with Parkinson’s disease! I may have PD, but it doesn’t have me. It’s not going to control my life.”

Update: LaDona’s DBS electrodes were implanted on January 18 and the battery was placed in her chest on January 26. She had the support of Jeff’s mom for three weeks and her friends provided meals for 4 weeks. Without her wonderful network of friends and family, she would not have had the wonderful recovery path that was available to her. She started work at the YMCA-Healthy Living Center on March 3 (behind the desk) and started teaching the Delay the Disease classes again on March 10. She traveled to Mexico on Spring Break with her family and is looking forward to less medications and less dyskinesia! She feels very blessed and thanks everyone for their prayers, thoughts and kindness throughout the DBS procedure.

Live it!

Spring 2012

humor - games

art

ArtAbility

sudoku 1 8

9 2 6

5 3

2 7 5 8 9 5 8 1 4 6 4 8 2 7 1 3 4 7 6 4 9 3 3 5 3 8 7 1 It’s easy to play Sudoku! Simply fill every column, row and 3x3 box so they contain every number between 1 and 9.

You name it, Bill Shelley can make it: birdhouses, chairs, buckets, gazebos, and clocks among many other items. “I’ve always liked working with my hands and seeing a finished product,” says Bill. Bill Shelley in his wood shop at home in Des Moines. At the age of 68, Bill has been doing woodworking and carpentry since the 1990s. His backyard is a wonderland of his finished products: several birdhouses, two gazebos, and many pieces of lawn furniture. He also has a cozy woodshop on his property where he can do what he loves. He creates custom pieces as a part of his business, Ornamental Wooden Lawn and Garden Items. After being diagnosed with Parkinson’s in 1995, he finds that he doesn’t have the stamina he once had but says he simply creates what he can when he is able to. He donates many items for charity auctions and continues to spend time in his shop creating custom pieces. His favorite piece is a bucket made of cedar wood. His wife’s favorite piece? “Jackie often says the best thing I make is sawdust,” Bill jokes.

Don’t go too fast! The game is easy to play but difficult to master! Enjoy! Answers are upsidedown below.

1 8 4 5 6 9 7 2 3

6 9 2 8 3 7 5 1 4

3 5 7 2 4 1 6 8 9

8 4 5 1 9 3 2 6 7

9 2 1 7 8 6 4 3 5

7 6 3 4 5 2 1 9 8

4 1 8 3 2 5 9 7 6

2 3 6 9 7 4 8 5 1

5 7 9 6 1 8 3 4 2

Samples of Bill’s woodwork.

support groups

support groups Algona/Kossuth Paul and Mary Jane Haverly (515) 295-3656

Creston/Union County Myra Spindler (641) 344-9065

Ames/Story County Sue Trevillyan, setrevill@hotmail.com (515) 233-2089

Davenport/Scott County Eileen Benson (563) 332-6497

Ankeny/Polk County Konnie Carlson konnie.carlson@brightstarcare.com (515) 257-7747

Decorah/Winneshiek Mary Marx marxm@winmedical.org (563) 387-3020

Atlantic/Cass County Jon Jordan, JJordan@wesleylife.org (712) 243-1850

Des Moines/Polk county Patrice Webber (515) 241-2445

Burlington, West/Des Moines County Ruth Newton, newtfarm@frontiernet.net (217) 453-2481

Valerie Stickle-Diehl (515) 358-0002

Carroll/Carroll County Melissa Schultes mschultes@stanthonyhospital.org (712) 794-5815 Cedar Rapids/Linn County St. Lukeâ&#x20AC;&#x2122;s Hospital Resource Center Samantha White, LMSW WhiteSJ2@ihs.org (319) 369-8044 Cedar Rapids/Linn County John Krumbholz Krummy68@yahoo.com (319) 350-7482 Charles City/Floyd County Carol Quade, carol@fiai.net (641) 228-5063 Clinton/Clinton County Don & Rita Schneider drschnder@clinton.net (563) 243-5585

For additional information on support groups, forming a support group, or to have your support group listed, contact the Iowa Parkinsonâ&#x20AC;&#x2122;s Disease Information and Referral Center (877) 872-6386, or go to our website www.apdaiowa.org.

Dike/Grundy County Bill & Corrine Hinkle whinkle@mchsi.com (319) 989-2110 Dubuque/Dubuque County Gerry Osterhaus gerryosty@gmail.com (563) 582-7313 Fairfield/Jefferson County Melissa Shafer (641) 472-3649 Fontanelle/Adair County Lavon Lutz lutzsafarini@aol.com (641) 745-4044 Holstein/Ida County Karla Hansen (712) 540-0743

A special Thank You to all support group facilitators and members for all they do in spreading awareness across Iowa. Thank you for all you do!

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 e-jhughes@hotmail.com (641) 752-0349 Mason City/Cerro Gordo County Janelle Nevermann (641) 424-4277 Newton/Jasper County Eloise Prater jeprater@iowatelecom.net (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, jespas@juno.com (712) 277-9337

Spencer/Clay County Carolyn Kruger gck@smunet.net (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 ladonamolander1@msn.com (515) 953-8474 Trenton, MO Gloria Koon (660) 485-6558 Mary Ellen Foland (660) 357-2283

8 Live it!

Spring 2012

upcoming events, training, education

Delay the Disease Exercise Classes

what’s coming up? 2012 Iowa Chapter Events June 13, 2012 – Barbara Moore Golf Tournament, Beaver Creek Golf Course, 11200 Northwest Towner Drive, Grimes, IA. June 29, 2012 - The 19th Annual O’Donnell & Friends Golf Open at the Toad Valley Golf Course. The O’Donnell Family has chosen the Iowa Chapter of the American Parkinson Disease Association as their charity of choice this year! 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 parkinsonclassic@yahoo.com October 21, 2012 – PD Walkers team will participate in the Des Moines Marathon.

“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. Sioux City - Norm Waitt Sr. YMCA in South Sioux City, NE. First session of classes start first week of May, to sign up contact Jacque Perez (402) 404-8439 or jperez@nwsymca.org If you would like more information on this program or other types of physical activity, please call Iowa Parkinson Disease Information and Referral, (877) 872-6386.

Area Conferences Conference on Alzheimer’s and other Dementias – April 30, 2012, 8:30 a.m.-4:30p.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.

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. June – No Meeting July – TBA 16

Is Your Parkinson’s Med

ication Wearing Off?

If so, learn if you qualify to participate in this research study for patients with end-of-dose we aring off. This trial is to evaluate the saf ety and efficacy of the invest igational product Tozadenant as adjun ctive therapy in levodopa-trea ted patients with end of dose we aring off Tozadenant has a novel me chanism of action which, if proven safe and efficacious and approved by the FDA, could represent the first new treatment modality for Parkinson’s disease in more than 20 years. Participants must: • Be between the ages of 30 and 80. • Have a good response to levodopa and be taking at least 4 doses of a levodopa containing medication pe r day. • Be taking levodopa conti nuously for at least the pre vious 12 months and experiencin g some daily (24-hour clo ck) OFF time. Study-related office vis its, laboratory work and medication are at no cost. For information, call Jennif er Williams, RN, Study Coordinator in the office of Dr. Lynn Struck, Iowa He alth Neurology Subspecialty at (515) 241-4200 or visit us online at www.clinicaltria lspotlight.com

get involved

April is

Parkinson’s Awareness Month

Since 1991, the Parkinson’s Action Network (PAN) has been the unified voice of the Parkinson’s community. In partnership with other Parkinson’s organizations and its powerful grassroots network, PAN serves as the voice of Parkinson’s on public policy issues affecting the Parkinson’s community. In addition to working on NIH funding and research, the Parkinson’s community is a powerful voice on many crucial issues including Parkinson’s-specific programs at the Departments of Defense and Veteran’s Affairs, FDA drug approval issues, Medicare and Social Security.

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.

Every April, the Parkinson’s community universally observes Parkinson’s Awareness Month as a way to focus the country’s attention on the prevalence of Parkinson’s disease and on the urgency of the need to accelerate research in this area. The second most common neurodegenerative disease in the United States, there is currently no cure for or treatment to slow the progression of Parkinson’s.

To become a PAN advocate, go to www.parkinsonsaction.org

Grassroots advocacy is at the core of PAN’s work in Washington, D.C., and our network of advocates, like you, is the engine that drives us forward in our mission. Advocates’ passion, dedication, and persistence in fighting for strong federal policy and funding for Parkinson’s research helps bring about the policies we need.

In the spirit of Parkinson’s Awareness Month, we encourage you to get involved with PAN. If you are interested in learning more or becoming involved with PAN, visit www.parkinsonsaction.org. You can also contact PAN staff at info@parkinsonsaction. org or call (800) 850-4726. Your voice can make a difference! • Do something for Parkinson’s Awareness everyday! From planting a virtual tulip to learning more about caregiving and signing up for classes, visit the PAN calendar for more ideas: http://bit.ly/pancalendar.

• Work with your local governments to proclaim April as Parkinson’s Awareness Month. • Take a moment to write to the editor of your local newspaper to raise awareness about Parkinson’s disease, and also encourage your U.S. Senators and Representatives to support funding for Parkinson’s research.

• Use social media tools like Twitter, Facebook, Google+ and your personal blog to raise awareness of Parkinson’s disease year-round, not just in April. • For more ideas, templates and sample letters to be the best advocate you can be, go to: http//bit.ly/panapril2012.

We’ve Got Optimism... And It’s Contagious! Join APDA as we launch our new national Optimism campaign to increase awareness of Parkinson’s disease across the country and raise money for education, support services, and to help find a cure. With Optimism events, there are no limits to the ways you can get involved.

... We’ve Got Optimism ! And It’s Contagious

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accomplish anythin And together, we can

And together, we can accomplish anything!

Start your own event today! www.Optimism4parkinsons.org Live it!

Spring 2012

feature article

everyone

knows a teacher By Eric Neubauer

Everyone knows that teacher. The teacher that went that extra mile for you. The teacher that worked tirelessly. The teacher that kept you going even when you didn’t want to. Dave Waggie is one of those teachers. He teaches at East Sac County High School in Lake View, Iowa, and for all those around him, a lot more than Biology or Chemistry ever could. This is his 28th year of teaching. I asked Dave some questions and these are his answers.

Eric Neubauer with sons Sam, standing, and Jon

EN: When did you decide to become a teacher? DW: In the fall of 1979, I was a senior at Newell-Providence high school in Newell, Iowa. I knew that I wanted to go to college, but I was not sure which road that I wanted to take. I knew that I had the ability to do about anything that I really set my mind to, and pondered many career options: • I could go to a trade school in Sheldon and become a power linesman, move to Colorado and enjoy the mountains. • I could go to Western Iowa Tech in Sioux City and learn how to repair electronic equipment. • I could go to Buena Vista College in Storm Lake and become a biology teacher. I chose option #3. I graduated from BV in the spring of 1984 with a major in Biology and a minor in Physical Education, moved to Wall Lake and began teaching high school science that fall. Currently, I teach Biology, Human Anatomy, Chemistry and Physiology. EN: What is it about teaching that keeps you doing it after so many years?

DW: I enjoy the kids. I do my best to help young minds learn how to think. And I live for volleyball. I was the assistant volleyball coach my first two years of teaching, then took over the head coaching duties in 1986. Our yearly goal is to have fun . . . winning is fun! I stress the fundamentals and team work; we live by the slogan “Respect All, Fear None”. During the winter offseason, I help train the elementary and middle school athletes in how to play the game as well. EN: When did you get diagnosed with Parkinson’s? DW: I was diagnosed in the spring of 2002. A few months before that, one of my students was joking with me and said “Hey, I’m gonna walk like Mr. Waggie.” He proceeded to walk briskly across the room with absolutely no arm motion. I thought to myself “Do I walk like that?” I knew something was not right. I had a general idea of what Parkinson’s was based on my science background. EN: Did you tell people you knew or did you keep it to yourself at the time? DW: I told anyone who inquired as soon as I knew it. Why hide it? EN: How did it affect your life? Professionally, personally? DW: I can do pretty much anything that I could do before, it just takes one heck of a lot longer. I have learned to ignore those things that don’t absolutely need to be done. I shake sometimes, especially when nervous or cold. My electric toothbrush has helped a lot for it is hard to do fast, repetitive, articulate motions. I don’t freeze up, but it takes a lot of mental energy to complete tasks. Forget multitasking. EN: Do you derive strength from a certain creed or faith? DW: I am a Christian, a strong Missouri Synod Lutheran. I used to never miss church on Sunday morning. Lately, the call to fish and enjoy nature on Sunday morning has been a stronger desire than attending Sunday morning church. I also spent 20+ years as a youth group leader.

EN: I assume Parkinson’s has changed your view of life, so how has it? DW: While I certainly do not deny my disorder, I don’t dwell on it either. I am on the go all the time while I can. I try to make the best of it and use every moment to do something helpful, useful, or just plain fun. It could be worse. I have been to funerals of high school classmates that have passed away as well as former students. I’m still alive and functioning. My goal is to live productively. EN: If Parkinson’s were a person and you had the opportunity to look it straight in the eye what would you say to it? DW: I know that I cannot get rid of you and that you will make some things in my life more difficult. But in ways unknown to you and not even yet known to me, you will make me stronger. EN: In ways you have not known, you have also made all of those in your life stronger, this writer being one of them.

Dave Waggie accepts a coaching award at the 2010 Iowa State Volleyball tournament

Volleyball accomplishments: • Overall record 490 - 152 - 39. • Overall record since 2000 is 306 – 38. • Twin Lakes conference champions every year this century except 2003. • Currently on a Twin Lakes conference regular season match winning streak of 55 consecutive wins, dating back to 10/07/03. • State tournament appearances in 2001, 2006, 2007. In 2010 the Iowa Girls High School Athletic Union presented Dave Waggie with their highest honor, the “Golden Plaque Award for Distinguished Coaching.” It was presented at the IGHSAU State Volleyball Tournament. One such award is presented each year, and Dave was the 70th recipient and the first coach to be given the award that was not a basketball coach.

kudos Stamp Out Parkinson’s

kudos

Hosted by Jen Arkland of Defiance, Iowa – in honor of her mother Nancy Mitchell, the 2nd Annual Stamp Out Parkinson’s event was held on October 15, 2011 at the Defiance Hall with 25 vendors and 20 scrapbookers participating. All proceeds went to the Iowa Chapter of APDA. Scrapbookers paid a fee for their table space for the day and were provided free lunch of some luscious homemade soups and cheesy cornbread and evening meal of everyone’s favorite: Pizza! Also available to them were several scrapbook/paper crafting businesses with supplies for purchase that day, along with comfy chair rental. The public was invited to join in by shopping at the vendors for a small entry fee and were treated to a wide variety of products and gift item shopping. A big hit again this year was the silent auction with some outstanding prize selections.

Live it!

Spring 2012

donors/acknowledgements

donors

December 2011 - January 2012

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: John Krumbholz and LaDona Molander Treasurer: Greg Armitage Directors: Rolando Chavez, Gayle & Ervin Fopma, Mary Jones, John Krumbholz, David McNeill, Jeff Molander, James Winchester and Sabrina Moe 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

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

personal

sponsorship

Keith and Christy Kroner l YIPS Support Group

In Memory: In Memory of Larry Brooks Donor Name: Anneliese Brooks

In Memory of Elsie Grace Milsap Donor Name: Albert Milsap

In Memory of Evelyn Crane Donor Name: Ruth Noelck

In Memory of Clyde Smalley Donor Name: Glenda Smalley

In Memory of Derwyn Deo Donor Name: Julie Herrick

In Memory of LeRoy “Bud” Molander Donor Name: R’Dell Molander Karen Nelson

In Memory of Bob Lechnir Donor Name: Margaret Lechnir

In Honor:

In Honor of Mary Kock Donor Name: Tara Kock Greene Parish Health Project

In Honor of LaDona Molander Donor Name: Karen Nelson

Donations: Randall Evans Sandra Garay Jeffery Molander Bob & Barbara Moore Jeff Stark Marvin & Verone Nederoff Nathaniel & Stephanie Norgren Kaisha Norgren

Kara Norgren Zachary Norgren Jana Mentzer Lisa Quam Neil & Karen Rohlena Rhonda Sievers Karen Whalen-Ward Rich Wells Beverly Wildman

Corporate Donations: GoodSearch Banker’s Leasing Company

Matching: Fairfax State Saving Bank Trust Gannett Foundation Wells Fargo United Way

Agenda/Topics

Annual Parkinson’s Disease Conference

Take Control:

Moving Forward with Knowledge and Wellness Friday, June 15, 2012 Lutheran Church of Hope 925 Jordan Creek Parkway West Des Moines, Iowa 50266 Registration: Register online at:

apdaiowa.org or call Iowa Parkinson Disease Information and Referral at (877) 872-6386 for a registration brochure with details.

Fees: $ 20 includes attendee and a guest.

Overnight Accommadations For those needing overnight accommodations, many area hotels are offering discounted rates for those attending the Conference. Details included in the registration brochure. Please call (877) 872-6386 for a brochure or visit apdaiowa.org for more information.

Interest in Volunteering? Please call Deb Wityk, Volunteer Coordinator at (515) 577-2990.

8:00 am-Noon Registration/Exhibits 8:15-8:45 am Dance in Your Chair with Dance for PD® – Misty Owens 9:00-9:15 am Opening Remarks – John Krumbholz 9:20-10:00 am Genetic Research by 23andMe – Emily Drabant, PhD Break 10:15-11:00 am Sleep and Parkinson’s – Gary Leo, DO 11:15-Noon Concurrent Sessions l Caregiving – Kay Vanags, BS, LBSW l Get Comfortable with Gadgets, Gizmos and Technology Software and Computer Demonstration – Lois Cole, Shirley Morrison and Gary Johnson, ATP l Dementia – Derek Campbell, PhD l Deep Brain Stimulation – Michael Rezak, MD, PhD l PD 101 for Newly Diagnosed – Valerie Stickle-Diehl, RN, MS, MSCN l Eating Healthy with Parkinson’s – Donna Larson, RD, LD, MS l Physical Therapy and Balance – Ellen Hansing, MHSA, PT, and Cheryl Suvic, PT Noon-1:00 pm Lunch 1:15-2:00 pm Concurrent Sessions l Medicaid Eligibility for Nursing Home and Other Long-Term Care – Scott Hartsook, JD l Mindful Movement and Tai Chi – Janet Shoeman l Depression – Derek Campbell, PhD l Non-Motor Symptoms – Michael Rezak, MD, PhD l Incontinence – Stephanie Pothoven, DO l Music Therapy and Parkinson’s Disease – Jenny Denk, MT-BC l Come Dance! With Dance for PD® – Misty Owens 2:15-3:00 pm Update on Parkinson’s Disease Medications – Lynn Struck, MD 3:00-3:30 pm Q&A Panel

Speakers • John Krumbholz, Iowa Chapter APDA Co-President • Emily Drabant, PhD, Research Development Manager, 23andMe • Gary Leo, DO, Neurologist and Sleep Disorders Specialist, Wisconsin Institute for Neurologic and Sleep Disorders, S.C. • Kay Vanags, BS, LBSW, Family Caregiving Specialist, Aging Resources of Central Iowa • Lois Cole, Advocate and Technology Enthusiast • Shirley Morrison, Advocate and Technology Enthusiast • Gary Johnson, ATP, Community Program Coordinator, Iowa Program for Assistive Technology • Derek Campbell, PhD, Neuropsychologist • Valerie Stickle-Diehl, RN, MS, MSCN, Mercy Ruan Center • Donna Larson, RD, LD, MS, Iowa Health – Des Moines • Ellen Hansing, MHSA, PT, Iowa Health – Des Moines • Cheryl Suvic, PT, Iowa Health – Des Moines • Scott Hartsook, Managing Attorney, Iowa Legal Aid • Janet Shoeman, Tai Chi Instructor • Michael Rezak, MD, PhD, Director, Movement Disorders Center, Central DuPage Hospital, Medical Director, APDA National Young Onset Center • Stephanie Pothoven, DO, Urologist, The Iowa Clinic • Jenny Denk, MT-BC, Music Therapist • Misty Owens, Dance Instructor, Dance for PD® • Lynn Struck, MD, Neurologist, Iowa Health

Iowa Parkinson Disease INFORMATION AND REFERRAL

American Parkinson Disease Association American Parkinson Disease Association

resources

links

and other resources

8 Web Links

Here are a few helpful websites. See a more complete list, including information on clinical trials, prescription assistance, catalogs for adaptive equipment and clothing, and more, at www.apdaiowa.org.

Parkinson’s Disease - 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

Caregivers

National Family Caregivers Association...........................................................www.nfcacares.org Iowa State University Extension Family Caregiving . .....................................www.extension.org/family+caregiving Coping with Caregiving ......................www.extension.purdue.edu/cfs/topics/hd/resources/CopingCaregiving.pdf

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

Other Web Links in this Issue of Live it! APDA National Young Onset Center ...............................................................www.youngparkinsons.org Microsoft...............................................................................................................www.microsoft.com/enable Iowa Program for Assistive Technology............................................................www.iowacompass.com American Parkinson’s Optimism.......................................................................www.optimism4parkinsons.org Research Study......................................................................................................www.clinicaltrialspotlight.com

sign language

sign

language

Enjoy/ Appreciate The sign for “enjoy” looks like you are signing “please” with both hands. One on the chest, one on the belly. Both hands move up and down at the same time, but when the right hand moves left, the left hand moves right. When the right hand moves right, the left hand moves left.

Frustrated

To do the sign for “frustrated” smack the back of your hand into your face. Do it twice. Memory aid: Think of constantly “running into a brick wall.”

Thank you

for reading LiveIt! Magazine, and for your support of the Parkinson’s disease community. Live it!

Spring 2012

Iowa Health â&#x20AC;&#x201C; Des Moines Iowa Parkinson Disease Information and Referral Center 1200 Pleasant Street, E524 Des Moines, IA 50309

subscription information

Want a subscription to Live it! magazine? Iowa Parkinson Disease Information and Referral Center c/o Iowa Health â&#x20AC;&#x201C; Des Moines 1200 Pleasant Street, E524 Des Moines, IA 50309

Please check one of the following: q Diagnosed q Professional q Family Member

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q Check here if this is

Complete this form, detach and mail with a check for $20 to: q Yes, I would like a subscription to the Iowa Parkinson Information and Referral Center magazine Live it! q Included is a check for $20 made to the Iowa Parkinson Disease Information and Referral Center.

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