Group spreads Parkinson’s awareness

By Samantha Pidde
Herald Staff Writer

July 04, 2009 01:19 am

— CLINTON — The Clinton Parkinson’s Support Group and its founder will be spreading awareness and support throughout the community next weekend. The support group will be holding a Walk for Parkinson’s Awareness at 10 a.m. on Saturday, July 11 at Riverview Park. A registration table will be set up at the bandshell to track how many attend. The walk will have two routes. One will be a short level route by the bandshell in Riverview Park and the other will be a longer walk along Riverfront Drive. This walk will be coinciding with a larger Parkinson’s walk taking place in Milwaukee, WI. Don Schneider, founder of the Clinton Parkinson’s Support Group, said they decided to put on this walk to show their colors and promote awareness for this disease.
“And this is our first chance to reach out to the community and see if we can get a little eye to eye, hand to hand , back and forth with the community in the most public setting we can think of which is the Riverfront park,” said Schneider.
Schneider formed this support group 15 years ago. He has been diagnosed with Parkinson’s Disease for more than 20 years. He said when he decided to start a support group, he visited local nearby community’s groups. He said at that time, the disease wasn’t as well-known as it is today.
“Parkinson’s has become one of the talked about diseases because of our celebrity connection. Michael J. Fox’s diagnosis as having Parkinson’s has lead to a vast increase in the number of people who are familiar with the disease,” said Schneider.
In 2002, Schneider was able to meet Fox and Muhammad Ali when he testified on a panel with them before the Health and Human Services Committee in Washington, D.C. at the request of Iowa Senator Tom Harkin.
Schneider said he has found being in a support group has been extremely beneficial. He said forming the group was the “biggest thing” he has done.
“And when Don Schneider says this is the biggest thing he’s done, believe me he’s done a lot of big things already,” said Virginia Ray, a member of the support group and one of the organizers of the walk.
Schneider said he thinks people dealing with Parkinson’s Disease benefit from sharing their experiences and fear. However, he said he understands many are hesitant to even admit they have the disease when first diagnosed. Schneider said at first he would not admit he had Parkinson’s, instead claiming he had a nervous condition.
“Because I was scared what people would think. And I was scared a little what I thought when I saw somebody whose disease had progressed rapidly and left them wheel-chair bound, unable to walk, talk, or move about on their own. It is a scary disease,” said Schneider, adding, “Now that I’ve been living with Mr. Parkinson’s for 20 years, he don’t scare me as much as he used to. But somebody newly diagnosed, whose feet stick to the floor, or has trouble swallowing, or had their voice grow so weak everybody’s always asking them ‘What,’ it still can be a scary disease.”
Schneider said while people may be uncomfortable sharing the fact they have this disease, this is one struggle people should not go through alone.
“One of the best ways you can fight Parkinson’s is by being a member of a support group and by sharing ideas and concerns and getting advice from another friend who knows the road you are traveling,” said Schneider.
Schneider said the Clinton support group tries to offer this support. Ray added that this group is not just for those with the disease, but also for caretakers of a person with Parkinson’s.
“That’s a big part of the disease. It’s not just the person who has Parkinson’s. It’s his partner or caregiver that faces the day to day changes that a disease like this brings on,” said Schneider.
The Clinton Parkinson’s Support Group meets at 10 a.m. on every second Saturday of the month in the boardroom on the lower level of Mercy South. Schneider encourages anyone affected by this disease to join them.

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