A Ride Across America - Live It! Winter 2012/2013

volume 3 w issue 4 winter 2012

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

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

A Ride Across America Rich Mills

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table of

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From the Staff Contact Us From Our Medical Director Ask the Experts

Respite: A Prescription for Successful Caregiving

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The Right Tools for the Job

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An iPad YOU can use

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l Cover Story A Ride Across America

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Feature Article

The Essence of Time

Personal Reflection

Creating Memories

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Kudos and Past Events l Chapter Information

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PD Walkers Participate in Des Moines Marathon

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Word Search and Coping Donors/Acknowledgements Links and Resources Support Groups and Subscription Information Scan the QR code at left to go directly to apdaiowa.org

Live it!

online

Live it! is also available online! Visit www.apdaiowa.com for an electronic copy.

Also, follow us on Facebook (www.facebook.com/IowaIandR) and Twitter @IowaParkinson (twitter.com/IowaParkinson)

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Table of Contents

14 Reader Submissions

Live it! magazine is intended to be a voice for the Parkinson’s disease community, and we are pleased to consider article, art and photo submissions for future issues from our readers. Please send your submission requests to Iowa Parkinson’s Disease Information and Referral at 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.

Dear Live it! Readers,

letter from the

Live it! staff

Another end to another year! On behalf of the Live it! staff, it has been an amazing experience connecting with all of you. We hope you are looking forward to spending the holidays with your most cherished family and friends.

The Summer and Fall were busy for many of us, especially for Rich Mills of Winterset, Iowa, who is our cover story for this issue. An avid bicyclist his whole life, Rich’s dream was to ride his bike across America. He fulfilled his dream and much more! Turn to page 8 to read all about his trip of a lifetime and how he also spread Parkinson’s awareness during his travels!

Kay Vangas, Family Caregiving Specialist at the Aging Resources of Central Iowa, provides a Prescription for Caregivers (page 5) and Gary Johnson of the Iowa Program for Assistive Technology shows how an iPad can work for you.

Our Medical Director, Dr. Lynn Struck, provides some information on medications (page 4).

SAVE THE DATE for the 2013 Parkinson’s Disease Conference which is Friday, June 14, 2012. Keep an eye out in your email inbox or your mailbox for additional details in the coming months.

Live it! Staff

Medical Director: Lynn Struck, M.D. Managing Editor: Crissanka Christadoss Editors: Linda Jordening and Vicki Ingham Contributing Writers: Eric Neubauer and

Kelsey Sparling 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

Since the Iowa Chapter was presented with the generous donation from the O’Donnell and Friends Golf Outing in Des Moines for $80,000, the Chapter is focused on how to best serve the Parkinson community. For the past two months, they have been going through a strategic planning process designed to better define our goals as an organization and more effectively communicate those goals to the general public. They want to better represent the entire state of Iowa and build a Board that is more representative. They also want to build an army of people willing to fight Parkinson’s disease in order to serve the thousands of Iowans who are currently diagnosed. The Chapter will communicate their updated plans and goals in the Spring Live it! magazine for all of you to see.

For 2013 there will be three issues of Live it! published instead of four issues.

Until next spring, wishing you a Happy Holiday Season and Happy New Year!

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

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Live it!

Winter 2012

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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.

Possible New Formulations of Levodopa There are new formulations of carbidopa/levodopa that are being developed. The first one is a carbidopa/levodopa intestinal gel. It contains 20 mg/mL of levodopa and 5 mg/mL of carbidopa. It is supplied in cassettes that are attached to a portal infusion pump that pumps the gel through a transabdominal tube connected to a percutaneous endoscopic gastrostomy (PEG) tube. The pump releases the gel into the small intestine and is carried in a harness worn around the shoulder or waist. Typically, the gel is infused during working hours only. It is effective in reducing motor fluctuations and dyskinesias in advanced Parkinson’s patients. It is approved in more than 30 countries and has been used in more than 3000 patients. It is currently in phase III testing in the United States.

The population that would be considered for this type of infusion is similar to the patients that would undergo deep brain stimulation. It is for patients whose fluctuations and dyskinesias are not adequately managed with oral medications.

Copyright Statement:

Statement of Copyright The entire contents of this magazine are copyrighted under United States copyright laws by the Iowa Parkinson’s Disease Information and Referral Center. All rights reserved. Written permission from the Iowa Parkinson’s Disease Information and Referral Center is required for reposting, republishing or retransmitting any material in this publication.

What You Can Do Without Written Permission Articles may be reproduced only if the text of the article is reproduced in its entirety and attributed to the Iowa Parkinson’s Disease Information and Referral Center.

What You Cannot Do Without Written Permission Reproduce any Iowa Parkinson’s Disease Information and Referral Center materials within any commercial publication or for any commercial purpose. Print more than a single copy for your personal use.

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The main drawbacks of this type of preparation are the nature of the procedure and its invasiveness. Also, there is the inconvenience of carrying the pump. The device also can malfunction. This is an alternative, however, for patients who are not candidates for deep brain stimulation or do not want to consider that option.

Another formulation of carbidopa/levodopa being tested, referred to as IPX066, can be taken through the mouth and will decrease the “off” time a patient experiences. There have been several studies that have looked at the effectiveness of this preparation of carbidopa/levodopa. In patients that are taking five dosages of the immediate-release carbidopa/levodopa per day, they usually can reduce their dosage frequency with the IPX066 to three times a day and also experience a reduction in “off” time.

There are several other new medications that are being developed, and in future articles I will be discussing them. If you have questions specifically about these drugs, you should consult with your neurologist.

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

ask the experts

Respite:

A Prescription for Successful Caregiving Ask your doctor about the use of respite

By Kay Vanags, BS, LBSW, Family Caregiver Specialist, Aging Resources of Central Iowa Respite is probably the most misunderstood and underutilized service by caregivers. I encourage you to consider how therapeutic a few hours a week of relief could be. It might be just what the doctor ordered!

Kay Vanags

Respite is an interval of relief during a period of work. Caregiving is a special type of work that may require being “on-call” up to 24 hours a day. This work is physically, emotionally and financially demanding.

If you had a work-related injury and went to the doctor to discuss your health, she might suggest a medication to relieve your symptoms. When respite is prescribed it allows the caregiver to recharge and remember that there is life beyond caregiving.

Other suggested therapies Schedule activities that • Make you feel good • Provide you with a sense of accomplishment • Involve other people • Create positive experiences in your life

Warnings No negative side effects

Treatment for Healthy Caregiving • Respite can extend the length of time that you can continue to provide care.

• It is worth the effort to arrange time for you.

• You and your family member will both benefit!

The prescription might read as follows:

Respite Rx Active Ingredients: Caregiver and family member with special needs Purpose: Healthy living

Questions or Comments:

Dosage For optimum effectiveness, respite should be taken anytime it can be arranged for 2-3 times a week for 3-4 hours each time.

Uses

Temporary relief from: • Short tempers • Bodily aches and pains • “The blues” • Stress

If you have feelings of • Hopelessness and helplessness • Eating too much or having no appetite • Not sleeping or sleeping too much • Tearfulness • Wanting to “escape”

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Call the Iowa Family Caregiver Support Program, which is sponsored by the Iowa Association of Area Agencies on Aging at 1-866-468-7887. They will direct you to your local Area Agency on Aging for family caregiving information, education, counseling and possible funding for equipment and respite.

You can also locate your Family Caregiver Specialist and additional caregiving information by going to www.iowafamilycaregiver.org.

Live it!

Winter 2012

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the right tools for the job

An iPad

that YOU can use

By Gary Johnson, ATP - Iowa Program for Assistive Technology Students use iPads! Business people use iPads! Now you can too!

Exactly 10 months ago I bought an iPad because I knew it had a feature that could be a game changer for me. As a dyslexic, I had used Dragon Naturally Speaking software on my laptop to turn my voice into text. I had good results but at the expense of lots of training and frustration.

The iPad allowed me to do something very similar-simply by touching a button.

Would you be interested if I told you an iPad could talk for you?

Would you be interested if I told you that an iPad would read to you?

What if I told you that an iPad would read to you, play music for you, allow you to have a video chat with out-of-state friends and family, and it can send and receive photos and videos?

The iPad Can Be Your Voice Today there are dozens of apps, software that helps the user perform specific tasks, for Alternative and Augmentative Communication (AAC) for iPads, ranging in price from free (or a small fee) to the Proloquo2Go program at $189. Other vendors can charge a lot more. To find out more about Proloquo2Go, visit http://itunes.apple.com/us and search for ‘Proloquo2Go’.

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Proloquo2Go® is a full-featured augmentative and alternative communication (AAC) solution for people who have difficulty speaking. Simply string symbols together to create sentences and phrases. Proloquo2Go provides natural sounding Text to Speech voices (in English only) and a high resolution library of over 14,000 symbols.

Voice to Text

The iPad screen showing a sample sentence using Proloquo2go.

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The 3rd generation iPad comes with Voice Dictation including Siri. Siri is a software application in Apple products like the iPhone and the iPad that allows you to ask questions and perform different actions simply using your voice. Siri answers questions, makes recommendations and performs searches based on your questions or commands in a female-sounding voice. I use it primarily for e-mail, Facebook posts and note taking at

work and home. Voice dictation means you can create documents without tapping out the words on the on-display keyboard or hooking up a wireless keyboard. Ninety-five percent of the words that I generate on my screen are produced by my voice.

What if you need to dictate more than one sentence or create a document with multiple paragraphs? Don’t worry.

The iPad’s voice dictation can handle it. Always check to see what the iPad thinks you said. You will quickly learn the iPad likes it when you speak clearly and distinctly and at a normal pace.

Apple iPad VideoTutorials Thankfully, there are many video tutorials available. You have a search bar in the upper right-hand corner of your iPad. Simply type in “Apple iPad tutorials” and tap the enter key. There are “Getting Started” videos, “Tips and Tricks” videos and plenty of “How To” videos both from Apple and independent sources.

Other Helpful iPad Information www.ipad.about.com

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Some of the topics I found most helpful are • iPad Training 101: A New User’s Guide to the iPad • What Apps Come With the iPad? • iPad Keyboard Help Connect your iPad to an HDTV or display with a video output cable (sold separately). Imagine how impressed your friends and guests would be seeing video clips, pictures or activities such as “Rudolph the Red-Nosed Reindeer” on your “Big” screen. How Fun! Simply tap the microphone button (shown within the red box for demonstration purposes), speak your sentence or paragraph, and tap the microphone button again. Your sentence or paragraph will appear like magic! Repeat as often as desired until your message is done.

Let the iPad read to you Learn the touch command that highlights text on the screen. You can have the option of the iPad reading that text to you. Download Audio books, magazines or Internet articles and the iPad can read them to you. There are apps for that. There are Headphones to keep it private and personal.

Let the iPad magnify for you One of the fascinating things about an iPad is that you can use your hand to flip pages, magnify photos and text and change screens. These are not hard to learn and the iPad has Accessibility features that automatically change text size and provide VoiceOver.

Rudolph the Red-Nosed Reindeer Here is an app to help people get into the spirit of the season. Rudolph the Red-Nosed Reindeer is a classic, so it is easy to designate this one as a great digital stocking stuffer. This eBook can be read like a traditional book, listened to like a book-on-tape or “played,” allowing the app to read and turn the pages itself. The iPad is a wonderful device in that so many people with differences of ability have access to its features. Enjoy!

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

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Live it!

Winter 2012

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cover story

A Ride Across

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America A self-proclaimed “bike geek” with Parkinson’s takes the trip of a lifetime Rich Mills had been on many bike trips before, but none like this. For three months, on his trusty Surly Long Truck Hauler bicycle, he travelled 3,200 miles from sea to shining sea, camping out or staying at a different home or hotel room every night. The longest trips he had previously taken were 1,300-mile rides along the Mississippi . . . Why the sudden desire to take on such an ambitious challenge?

LiVE Rich with his bikes as a boy and teen

A self-proclaimed “bike geek,” Rich has been an avid cyclist since he bought his first bike with paper route money at the age of ten. Before the cross-country ride, he was a member of the Madison County bike club, had ridden in over 30 RAGBRAIs (The Register’s Annual Great Bicycle Ride Across Iowa, an annual seven-day bicycle ride across the state), and had explored many bike trails around the nation. He’d always dreamed of making the nation-spanning expedition, but thought he had plenty of time to make that dream a reality.

Then, in 2009, at the age of 55, Rich was diagnosed with Parkinson’s.

“My diagnosis gave the trip a focus and urgency,” said Rich. “I’d also heard that bicycling is one of the best ways to combat the symptoms of PD.” The planning took eight months, and Rich credits Crissanka Christadoss, coordinator of the Iowa Parkinson’s Disease Information and Referral Center, for setting up interviews, host family stays, and meetings with Parkinson’s groups across the country. The trip spanned 12 states. Rich named his trip “Shakey Tracks: My Ride Across America” After all the preparation, Rich packed up his bike and gear and in the middle of July 2012 hopped on a train in Osceola, Iowa, bound for San Francisco. He began the bike ride at the Golden Gate Bridge, planning to make 35 to 40 miles every day, resting every fifth day. Rich followed the map up to Reno, Nevada, but afterwards he wandered. His mileage plans were abandoned as well—after he reached Nebraska, he was feeling strong enough to average 75 miles per day, and only took every twelfth day to rest.

Crissanka and executive directors of Parkinson’s associations in each state Rich traveled through arranged for lodging with host families with connections to PD. He also stayed with

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members of Warm Showers, a network of “bike geeks who put up other bike geeks.” The result was that Rich camped out and stayed in hotels only a handful of times during his three-month journey. “The great part was getting to meet people and exchange stories,” he said.

While about 90 percent of Rich’s trip was on the open road, some of his most interesting and beautiful experiences occurred when he got away from traffic on some of the nation’s bike trails. On the Pumpkin Vine Trail through Amish country in northern Indiana, Rich traveled alongside many other bikers as well as horse-drawn buggies. After Pennsylvania, Rich pedaled the Great Allegheny Passage rail-trail, which connected to the C&O Canal Towpath, and followed it all the way to Washington, D.C.

Rich about to board the Amtrak train to San Francisco, his bike in box.

Tom Schulz of Placerville, CA, who also has Parkinson’s, offered Rich a place stay overnight.

“I kept being surprised by the random acts of kindness I experienced,” said Rich. When he got a flat tire on a bike trail outside Davis, California, he was approached by cyclist after cyclist asking if he needed help. The task of changing the tire with the spare foldable one he keeps in his gear is usually a 20 minute task, but with all the interruptions it took two hours. Nevertheless, Rich describes it as the best day he had.

Although some paths like this were well-traveled, while riding on the apron of a highway outside Denver, Colorado, Rich only saw one car the whole day. A short way up the road after that car passed by, Rich found a cold bottle of water and an orange they had left for him.

The weather was perfect as well. He experienced only one day of rain and one day of head winds. The rest of the time, the miles flew by. Often happy to have access to overnight shelter, Rich made an exception one night, staying in a farmer’s hayfield. He forsook the tent and made a bed on a mound of hay. “I could see the curvature of the earth that night,” said Rich. “I could see forever.”

The beauty, the weather, the kindness, it all added up to one fact for Rich: the trip was charmed. He thanks Crissanka for the preparatory work she did, which allowed him to fully enjoy the experience.

On the road.

Rich and Crissanka pictured with the Parkinson’s support group leaders in Lincoln, NE.

Really, though, the pleasure of the ride is only half the story. While Rich is passionate about cycling, he is also passionate about spreading awareness about Parkinson’s and finding a cure. His trip was intended to do both. He did many interviews with the media along the way, and found all the reporters kind and willing to write beautiful reviews that spread awareness.

He also brought along a petition advocating for human embryonic stem cell research, which he intended to hand to the Congressional Caucus on Parkinson’s Disease when he reached Washington, D.C. Iowa Representatives Tom Latham and Leonard Boswell are both members of the committee. People across the nation were gracious about signing, but when he reached the capital, Latham and Boswell were back in Iowa campaigning. He now plans to pass the petition to whichever representative wins his reelection campaign. (continued on next page)

A stop in Cleveland, Ohio, at the Rock and Roll Hall of Fame.

Live it!

Winter 2012

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cover story (continued)

In every state, Rich visited Parkinson’s support groups and listened to people’s stories. “It got to be too much,” said Rich. “Their stories ripped my heart apart, so I started delivering the message about how my biking helps me instead.” He based this positive strategy on his own experience. When he was first diagnosed, he asked two different doctors what he could expect. One gave it to him straight—there is no way to know for sure how fast the disease will progress. The other told him that he could expect to see little progression for the next 20 years. “I left that office with a spring in my step. I realized I didn’t want the truth,” said Rich.

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Further inspiration came when Rich visited the Cleveland Clinic’s Center for Neurological Restoration, which is nationally recognized for expertise in innovative treatment for Parkinson’s disease. He met with Dr. Jay Alberts, an Iowa native who has pioneered the treatment of Parkinson’s with bicycling. Dr. Alberts noticed that people with Parkinson’s riding a tandem bike during RAGBRAI experienced increased cognitive function and better handwriting.

From Dr. Alberts, Rich learned that the key to seeing improvements was to keep up your cadence, or the number of revolutions pedaled per minute. After Cleveland, Rich decreased his gear setting and increased his cadence, and he did notice improvements in handwriting.

LiVE

So far, Rich has not had any trouble with his cycling due to Parkinson’s. He has, however, noticed a difference in the way others treat him. On the trip, people were often anxious to help him load his 75 pounds of gear—made up of a light-weight tent, clothing, sleeping bag, air mattress, electronics, bike repair tools, tubes, and the spare tire. At first he resented being offered help with a task that he knew he could do himself. “Then I remembered the great satisfaction I took from helping my mom when she got sick,” said Rich. “I now let people help me because I know it makes them feel good.”

Rich is now back home on his farm in Winterset with his wife of 18 years, Mayumi Ameku, and is at a fork in the road of his life—he’s toying with the idea of starting a hydroponics and aquaculture business. Still, cycling is in his blood, and he sees no reason to give it up any time soon. Said Rich, “I feel best when I’m on a bike.”

To learn more about Rich’s trip and to sign his petition, visit his website: richmills.us

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At Cleveland Clinic with Dr. Jay Alberts and his research team.

A stationary bicycle is how Rich stays in shape when he isn’t outdoors.

Posing at the Hogback Bridge in Madison County, Iowa.

feature article Denny and Sam coloring Easter eggs.

The Essence of Time

By Eric Neubauer

The old cliché “time is of the essence” means much more to a person and families impacted

by Parkinson’s disease, and more than likely, to anyone who suffers from an ailment that has no cure. Time becomes sacred. We claim to be busy and have no time, but in reality, what are we really doing that is so important?

Parkinson’s has a way of putting that into perspective very quickly, at least that is what my father, Denny, has told me. It certainly seems to be true in his case, and consequently, has become true in all of our lives. I’ve written before of my relationship with my father and how things have changed since his diagnosis.

One thing that remains constant is the need to watch the time all the time.

Eric Neubauer with sons Sam and Jon

Denny takes Jon trick-or-treating

My wife and I married and began a family immediately. People asked us what the rush was. I could have said “time.” I wanted to make sure my father would have enough time to enjoy his grandchildren. While the kids are growing and experiencing everything for the first time, I wanted him to experience it with them and with Parkinson’s you never know how much time you have. So, we began our family. We have two wonderful boys. Sam is four, and Jon is two. When Sam was born my parents would come from Des Moines and visit us frequently in Illinois. They lived five hours away and visited as often as possible.

That seemed to be the only time that time didn’t matter. By the time Jon was born, the drive was getting to be too much. My parents were considering being closer to their grandchildren. My father could sell his business and retire. It was the right time to do it. My mother could get a new job, so they listed their house and within a month they had a few offers and accepted one. But now they had to find a house in Illinois.

Progress came quickly with house hunting and the next thing we knew, my parents were living down the street from us. If they stand on their back deck they can see up the hill and see my car. Now we have entered a new “time” in our lives. My kids ask to see Grandma and Grandpa, and what would have taken five hours now only takes two minutes. The time saved is undeniable, yet it is deceptive. We seem to have all the time in the world, but the underlying thought of a clock ticking away is always there, so we enjoy those ticks of the second hand more and more. Instead of talking on the phone or having a weekend visit, they are now face to face. The giggles have expressions to them. The goodbyes and “I love you’s” have hugs attached to them.

Time is of the essence, and what a sweet, sweet essence it is.

People ask my parents how they could uproot their lives and move to another state and start over. The smiles on their faces say it all when we walk up their driveway. Actually, we walk, the kids run screaming “Grandma! Grandpa!” At that moment time stops, nothing else matters, and Parkinson’s takes a step back for a while. It won’t always, and we know that, but we’ve got a lot more time now than we ever had before, and we plan on making the most of it.

Live it!

Denny playing with Jon

Winter 2012

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personal reflections Kelsey and her grandmother

Creating Memories

By Kelsey Sparling The most vivid memories I have of my grandma are about spending time with her and my grandpa on their farm in Wisconsin. Coming from a suburb of the Twin Cities in Minnesota, I always looked forward playing outside on grandpa’s riding lawn mower or watching grandma bake cookies. Another great thing about my grandparent’s farm was celebrating the holidays there. My cousins, sister and I would wear little elf hats, sort out presents and assign seats to everyone. My grandparents eventually moved to a more manageable townhome when it became too difficult for my grandmother to move around on the farm.

My mother told me that grandma was diagnosed with Parkinson’s when she was sixty-two years old, before I was born. Her symptoms began with tremors in her hands, which were a challenge for her because she was always creating things for all her grandchildren. A gift from

grandma almost always included something that she had knitted.

Anytime I saw her, she would be knitting beautiful sweaters or blankets.

As her Parkinson’s progressed, she picked up other hobbies such as crocheting with large hooks or decorating dish towels and pillows with craft paint. She still sustains her love for arts and crafts by working with yarn and admiring designs in pattern books. Though it is difficult to watch a disease impact someone I love, watching her continue her love of arts and crafts and spending time with her allows us to cherish our time together as a family.

Kelsey Sparling is a senior at Drake University in Des Moines majoring in Health Sciences. She is from Apple Valley, Minnesota.

upcoming events, training, education

Save the Date!

what’s coming up?

Attend the PAN Forum: Scholarships Still Available!

The PAN (Parkinson’s Action Network) Forum is an exciting three-day conference held in Washington, D.C. February 25-27, 2013, bringing together Parkinson’s advocates from across the nation. Attendees gather to learn the latest in public policy and research in Parkinson’s disease. Working together, Forum attendees increase awareness of Parkinson’s and learn how to advocate on Capitol Hill for better treatments and a cure.

You can be part of finding better treatments and a cure for Parkinson’s disease.

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Friday, June 14 – Annual Parkinson’s Disease Conference at the Lutheran Church of Hope, 925 Jordan Creek Parkway, West Des Moines, Iowa You can learn more about new research and how federal funding of biomedical research generates private-sector investment, supports local economies, and gets us closer to a cure.

You can witness and be a part of the power of advocacy while educating your Senators and Representative about how Parkinson’s disease affects you, your family and community.

Scholarships are available to subsidize travel costs and hotel accommodations. The deadline to apply is December 7.

To register for the Forum or apply for a scholarship, please visit www.thepanforum.org, or call 800-850-4726 with any questions.

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kudos

“Grey Out” Night

kudos

The East Sac County High School Girl’s Volleyball Team from Lake View, Iowa hosts a “Grey Out” Night fundraiser every fall in honor of their volleyball coach, Dave Waggie, who is also a science teacher at the High School and has Parkinson’s disease (Waggie was featured in the Spring 2012 issue of Live It!). This year the team raised over $3,000 for the Iowa Chapter of the APDA. The “Grey Out” (in reference to the color of the brain and the official color of Parkinson’s) aims to raise money and awareness of the disease. Money was raised by selling T-shirts and through raffle items. Thank you to this wonderful group of young women at East Sac County High School!

The East Sac High School Volleyball team, coach Dave Waggie and Crissanka Christadoss, Coordinator of the Iowa Parkinson Disease Information and Referral Center

in the community - past events

past events Annual Caregiver’s Appreciation Brunch in Des Moines, Plymouth Congregational Church – Tuesday, October 16, 2012 Kay Vanags, Family Caregiving Specialist at the Aging Resources of Central Iowa, and Mike Kendall, Social Worker at SouthernCare Hospice in Urbandale, Iowa inspired and invigorated caregivers in this exceptional program. Over 40 people attended in celebration of National Family Caregiver’s month.

NW Iowa Parkinson’s Disease Symposium, Sioux City, Iowa, Hilton Garden Inn Saturday, October 27, 2012 Over 100 attendees came to celebrate A Time of Hope in Sioux City in October. Trevor Hyde, PhD, geriatric neuropsychologist from Milwaukee, Wisconsin, spoke about the aging brain and memory and methods for keeping one’s memory sharp; Iowa Chapter Co-President John Krumbholz gave an inspirational talk on what is going on in Iowa in regards to Parkinson’s disease, and Marc Hines, MD, neurologist from Covenant Medical Center in Waterloo, Iowa, provided an overview of Parkinson’s disease. Jacque Perez, Delay the Disease exercise instructor from the Norm Waitt YMCA in South Sioux City, Nebraska, gave an exercise demonstration for attendees as well.

Thank you to our sponsor for the event, Teva Neuroscience, and the following exhibitors: Medtronic, Gary Johnson – Iowa Program for Assistive Technology, Siouxland Aging Services, Norm Waitt YMCA, Mercy Home Care – Sioux City, and All Ability Cycles from Jefferson, Iowa.

Live it!

Winter 2012

John Krumbholz speaking at the NW Iowa Symposium

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chapter information

PD Walkers Participate in the Des Moines Marathon The PD Walkers participated in the Des Moines Marathon on October 21, 2012, and raised over $20,000 this year! Thank you to all PD Walker participants and those who donated.

Thank you!

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Thank you!

Donations Sarah Aikman Mike & Ronda Ammann Shawn Anderson Jim & Judy Anderson Barb Anfinson Viki Arias Dawn Arnold Julie Aronson Rachel Baier Amy Baldwin Nancy Banasik Scott Barbakoff Patricia Best Mike & Deb Billehus Paul Birocci Kyle Blotz Kristine Bodner Kent & Sandy Bragdon Sarah Brecht Curt Bredeson Amanda Brown Diana Brown Brad & Jodi Buchan Megan Buske Diana Caldwell Gretchen Carpenter Bree & Tom Case Scott & Tami Chambers Erika Chaves Elizabeth Chawla Angela Chimney Daniel Christadoss Tory Christensen Shawna Conser Amber Cook Sandra Cook Connie Cook Jennifer Cox Andy Crouch Sue Curry Brenda & Wendell Davison Tim De Wees Kristen Devlin Michael Dickinson Ron and Charlotte Disrud Julie Doyle Tonya Eaton Tim Edgar Monica Edwards Jill Endries Connie Erickson Michelle Farrell Heidi Fencl Anthony & Carlie Fitzgerald Derek Flowers Ervin Fopma

Gayle Fopma Peter Fremstad Jill Frerichs Kristin Friedrich Melissa Friend Carrie Froelich Jennifer Fuhrman Mark Gainor Amanda Gallogly Laura Garrett Gina Gear Georgia Gent Tim Gilman Lisa Goodman Kelly Grandgeorge Lisa Grantham Jennifer Greenwalt Megan Grier Randy Hahn William Haines Jason Hatting Nicole Heibel Jayne Heinrich Sheila Helleson Ruth Henson Mary, Craig, & Oscar Hertges Chris Hertges Karen Hoff Roseann Hoffman Frances Hogg Becky and Doug Hoyng Greg & Pat Hudson Ben Jacobson Vicki Jauer Lyle Jeffries Denice Jelinek Jennifer Jenkins Michael Jensen Wendy Jespersen Julie Johnson Mary Jones Amber Jones Rod & Stacy Kabel Dale and Davida Kalina Julane Kalina Erin Karrels Carrie Karsakow Gary Keese Sharon Kipetz Angie Klobnak Jennifer Klute Michael Knutson Jennifer Koehler Mike & Kelley Kramer Stacey Krings Jennifer Kulik Julie Lake Karen Larson

Mike Larson Elizabeth Lemcke Melissa Leyen Kendra Logan Christine Lucht Brian Lutter Ruth MacIver Judith Mahan Matt Marquardt Ellie and Johnny Maslowski Bill Mather Mark Mather Boe & Joe McConkey Jodi Melsness Ann Mertes Fredd & Betty Mewborn Cindy Mews Lee Mews Susan Mews Jayme Mews Kimm Miller Sabrina Moe R’Dell Molander David Montgomery Dora Moore Jon Muller Cynthia Munyon Denis Naylor Karen Nelson Sharon Nelson Kristi Nelson-Weber Steven Nirk Anne Nordquist Cheryl Nousaine Dawn O’Connor Dean O’Connor Maria and Dan ODell Jennifer Oliver Christine Olsen William Olson Brian O’Neil Gail O’Rourke Melissa O’Rourke Jess Osborn Barbara Palmer Melanie Palo Ronak Patel Mark Pelleymounter Mark and Steph Perington Dana Peterzalek Deanna Plank Laurie Politzer Anne Politzer Brooke Politzer Kim Poll Tonya Potocki Namit Prasad Stephanie Ragonese

Jake and Jen Randall Brett and Dena Rawsky Carla Ray James Reichart Christine Reznicek Tiffany Richeson Kathleen Roberts Carol Rolf Laura Rommelfanger Kevin Roose Emily Roths Craig Runyan Kim Ryan Stephanie Santos Kim Schleusner Candice Schwake Stephanie Shinn Claudia Siegel Allie Sielicki Jessica Snyders Lindsay Stangeland Jennifer Steckly Amy Stephenson Sarah Steward Joshua Steward Dean Sturch Meghann Sullivan Coreen Sweeney Nick Talone Christopher Tank Garrick Teckenburg Trina Teckenburg Jessica Thornton Erin Thune Judy Town Carol Trier Jamie Trunnel Ken Turnis Bobbi Jo Van Deusen Carla Vanderford Natalie Volz Sara Wade Kevin Wagner Lynn Weiss Charlene Welch Kelley Werner Sarah Wigen Matt Willenborg Coreen Witke Maren Woodlock Shelly Young

Participants Ryan Baker Lucas Baker Rick Baker Luanne Baker Carmel Benton

Paul Birocci Linda Birocci Diana Brown Kevin Brown Sheila Burton Rolando Chaves Gina Chaves Kelsey Chaves Braden Chaves Crissanka Christadoss Katie Cummings Kristin Davison Amy DeVries Teryl Dickinson-Talone Sharon Dreyer Jeremy Dyvig Stacey Erickson Wyatt Erickson Kurt Erickson Sam Erwin Gayle Fopma Ervin Fopma Brenda Frizell Robert Frizell Amber Gill Jeff Glass Pam Gray Betty Gray Debbie Gray Patton Nancy Grogan Karen Halder Deb Heard Richard Heard Terry Hertges Robert Hertges Becky Holmes Mary Jones Jill Kennicutt Maisie Kennicutt Scott Kennicutt Taylor Kilstrom Angie Klobnak Melanie Lanham Mike Larson Karen Larson Tom Le Elizabeth Lemcke Penny Luthens Erik Luthens Marilyn Magel Bill Mather Lisa Maupin James McConkey Cheryl McDonnell Cindy Mews Amy Mews Jayme Mews Susan Mews

Sabrina Moe Rodney Moe LaDona Molander R’Dell Molander Jeff Molander Reed Molander David Montgomery Dora Moore Jon Muller Gretchen Muller Deb Newman Roger Norgren Colleen Norgren Zachary Norgren Cindy Olson William Olson Liz Osborn Rich Panek Tori Panek Caitlin Patton Teagan Patton Michael Patton Kate Pixley Laurie Politzer Robin Prier-Ross Trina Radske-Suchan Carla Ray Blake Richards Kris Robson MIke Ross Katherine Schmidt Denise Scott Shanon Shreffler Carol Sieck Alexis Slade Brent Slade Mara Smith Jenny Snyders Sarah Steward Dean Sweeney Coreen Sweeney Zachary Tanchinh Marisa Tank Steve Thompson Judy Town Brian Town Sarah Town Jennifer Voorhees Kevin Wagner Diane Weiser Rachel Wells Nick White Megan Wick Heather Wilcoxson Jen Williams Louise Winter

word

coping

search

Confront the Freeze B T S J B J V G T Y K H C Q T I H Y S J Q L V D S O A L N R C G N P M L W U U L I G J T O Y X A X X O L V I L L S N W P C V Y E O D B D F E X Y S K P L I N O I T A I C E R P P A U E E T H K Y P N L E K U O I S M T X U O T E N V I A J K R E A A S C E S P I V A T C I V T G E U Q S P G M J J U Y R J A N R D E N E A E T I P S E R C I C R V R I Y R S H A R E B I F S V A I L P H E L Z H F N N Y D C W K F S R T H Q W W T U N R E S O U R C E L T M R M M U Y Y L I M A F E F A E U Y M S U C C E S S C N W L E W R O T A D W K Q I V K I A E H D C K N J I I O I I E R D X C A U P K E L V H P F Y M L M N T H APPRECIATION ASSIST BICYCLE CAREGIVER COMMUNICATE CREATE ESSENCE FAMILY HEALTHY HOLIDAY MAGNIFY

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MOBILITY REFLECT RELIEF RESOURCE RESPITE SHARE SUCCESS SUPPORT THERAPEUTIC VOICE

David Ganfield

NO, not like ice on the sidewalk.

NO, not like your car’s engine because you forgot or neglected to winterize.

NO, not like how tasty that ice cream treat was before it fell off the cone due to your hand tremor.

And certainly not when law enforcement tells you to.

To a Parkee (a person afflicted with Parkinson’s Disease) the term “freeze” takes on a different and often times distressing meaning. A freeze is when your brain tells your body it’s time to move, your body doesn’t answer and there you are rooted like a tree, in the way, with everyone staring at you wondering what you are up to because, as we all know, someone who acts differently must be working a scam!

Perhaps I make it sound worse than it is, but for me the feeling of being aware of a freeze and being unable to quickly avert it is frustrating.

I often give the scenario of using the men’s room and wanting to go wash my hands. There I stand in front of the porcelain unable to convince my body that it’s time to back away. I try to subvert the freeze by swaying back and forth or (ugh!) forward and back trying to generate enough momentum to get out of the way. It leaves me fighting feelings of consternation, not because of me really, but because the other guys are waiting in line for the facilities.

A way to fight the freeze is to think of a marching song and march through your daily tasks that bring on a freeze. This is usually fine, except the folks at checkout at the grocery have no idea why you marched up to the register, came to attention and fired off that snappy salute.

I was checking in for a recent doctor visit and froze. I felt somewhat self-conscious, like everyone was looking at me. The registration representative told me not to worry, that they see that happen all the time. I am sure that the three people waiting to check in did not share in her gracious offer.

So as you go about your daily routine, should you see someone standing in place swaying, give them a chance to beat their freeze. If you are afflicted by the freeze, give yourself a chance to beat it, too. The ice cream mentioned earlier sounds much more attractive. I mean if I gotta freeze…

donors/acknowledgements

donors

August – October 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

8

Iowa Chapter of the APDA: Co-Presidents: John Krumbholz and LaDona Molander Treasurer: Greg Armitage Directors: Gina Chaves, Rolando Chaves, Gayle Fopma,

Ervin Fopma, Terry Hertges, Becky Holmes,

David McNeill and Jen Voorhees Past Presidents: Jeff Molander and Sabrina Moe • American Parkinson’s Disease Association, Inc. - National Office, 135 Parkinson Avenue, Staten Island, NY 10305, (800) 223-2732, www.apdaparkinson.org

8

acknowledgements

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

Wells Fargo Community Support Campaign: Elizabeth Field Jeff Molander Teresa Terry Theresa Thornton

Crystal Spieker Jeff Stark Rich Wells

Donations: Mark & Jennifer Arnold Kathy Bixler Darren & Patricia Freeman Grundy County Support Group Sue & Jack Kirk Dan Miller Jeff & Ladona Molander Rdell Molander

In Memory of John C. Baker Donor Name: John & Debbie Albaugh Jacqueline & Rickey Baker Mary Bierma Tom & Lois Burkhardt Erika Lynn Cook Craig & Linda Daniels Janet Dittmar Coralee Good Richard & Debra Heard Glen & Arlette Hollister John Lesher Annabelle Mack Arlet Martens Ivan & Barbara McDonald D R Jermier Mr. & Mrs. Ray Sackett Darlene Spracklen James & Catherine Tyson Mary Vasey JE Wulf & CD Reid

Alvadore & Mary Osborn Sarah Petersen Barbara Sackett Tricia Hamak-Sundeen Terry Talone Keith & Diana Troester Charles Wellman Anna Whipple

In Memory of Richard Stice Donor Name: Richard & Cynthia Arnold Harold Alsin James & Marlene Avery James & Sharon Douglas D.L. & Joyce Jansz Lonnie & Harriett Laws Jan & Gus Lemaster David & Susan Mengwasser Jeanne Phillips Lee Roy & Judith Porter Judith Stice Thomas & Eilene Strawn David & Joy Warner Kenneth & Carolyn Wassenaar Raymond & Judy Wolver Dennis & Mary York

In Memory of Don Stover Donor Name: Martha & Jack Barrows David & Jane Bourgeois In Memory of Jerry Davis Sheila & William Cushing Donor Name: Paul & Maribeth Shanley Tom Wonderlin Joanne Moore In Memory of Ronald Hauswirth Marlene Perrin Mary Ann Poepsel Donor Name: Chris Smart A. Duanne & Lori Barth

In Honor of Dave Waggie, East Sac County High School Girl’s Volleyball Team Fundraiser Donor Name: Michael & Emily Busch In Honor of Rhonda Janning-Von Charles & Betty Brotherton Ahn, In Memory of June Janning Norma & Rick Hecht Donor Name: In Memory of John O. Whipple Karen & Gary Kunecke Donor Name: Denis & Shirley Schirck John & Vadonna Whipple Sheila & George Towers In Memory of Daryl Winker O’Donnell & Friends Family Donor Name: Open – June 29, 2012 Frank Shabel Donor Name: 17 Christ the King Catholic Church In Memory of Margaret Holaday Donor Name: Eleanor Sandholm Laurence & Margaret Holaday

resources

8

links

and other resources

8 Web Links

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

Parkinson’s Disease - General

American Parkinson’s Disease Association ......................................................www.apdaparkinson.org American Parkinson’s Disease Assn, Iowa Chapter ........................................www.apdaiowa.org American Parkinson Disease Young Onset Center ........................................www.youngparkinsons.org Parkinson’s Action Network ...............................................................................www.parkinsonsaction.org American Academy of Neurology .....................................................................www.aan.com The Movement Disorder Society .......................................................................www.movementdisorders.org WE MOVE: Worldwide Education and Awareness for Movement Disorders .......................................................www.wemove.org Living Well with Parkinson’s Disease ................................................................www.pdplan4life.com National Institutes of Health: Parkinson’s Disease ..........................................nihseniorhealth.gov

Caregivers

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

Listserves (online discussion groups)

Parkinson’s Disease Blog Network ....................................................................www.parkinsonsblognetwork.com Parkinson’s Information Exchange Network Online ........................................... www.parkinsons-information-exchange-network-online.com

Other Web Links in this Issue of Live it!

Caregiving Information ......................................................................................www.iowafamilycaregiver.org Assistive Technology and possible funding sources........................................www.iowacompass.org

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support groups

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

Thank you for all you do!

support groups Algona/Kossuth County 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 Crissanka Christadoss christcs2@ihs.org (515) 241-6379

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

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

Des Moines/Polk County Valerie Stickel-Diehl vstickel-diehl@mercydesmoines.org (515) 358-0002

Carroll/Carroll County Melissa Schultes mschultes@stanthonyhospital.org (712) 794-5815 Cedar Rapids/Linn County St. Luke’s Hospital Resource Center Samantha White, LMSW WhiteSJ2@ihs.org (319) 369-8044 Cedar Rapids/Linn County John Krumbholz Krummy68@yahoo.com (319) 350-7482 Charles City/Floyd County Carol Quade, carol@fiai.net (641) 228-5053

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 Independence/Buchanan County Judy Hess (319) 334-2969

subscription information

Iowa City/Johnson County Judi Gust RobertMcCown@msn.com (319) 351-5248 Marshalltown/Marshall County Joyce Hughes e-jhughes@hotmail.com (641) 752-0349 Mason City/Cerro Gordo County Janelle Nevermann (641) 424-4277 Muscatine/Muscatine County Wayne & Pat Corriell pat.corriell@gmail.com (563) 649-2285 John & Karen Schaub jschaub@machlink.com (563) 263-1866 Newton/Jasper County Eloise Prater jeprater@iowatelecom.net (641) 791-1018 Sioux Center/Sioux County Rachael Bowman rachel.bowman@schospital.org (712) 722-8325 Sioux City/Woodbury County Jack Sherrman, jespas@juno.com (712) 277-9337 Spencer/Clay County Carolyn Kruger gck@smunet.net (712) 580-1219

Storm Lake/Buena Vista County Colleen Last, lastc@iw.net (712) 732-1925 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 jdwot01@hotmail.com (319) 290-9402 West Burlington/Des Moines County – Ruth Newton, newtfarm@frontiernet.net (217) 453-2481 West Des Moines/Polk County Mary Adkins, bjamla@aol.com (515) 480-4090 LaDona Molander ladonamolander1@msn.com (515) 953-8474 Trenton, MO Gloria Koon, (660) 485-6558

A subscription also includes a membership to the Iowa Chapter of the American Parkinson’s Disease Association.

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