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Local Women Reach Out to Others Who Have Young Onset Parkinson's
- Sep 08 2009
by Jill Armentrout | For The Saginaw News
Friday September 04, 2009, 7:30 AM
When Bay City's Joan Szczepanski started a support group four years ago for younger people with Parkinson's disease, she was seeking help for herself.
Diagnosed with the movement disorder at age 51, she didn't fit in with other Parkinson's groups whose members are usually older, she said.
"You can only read so much, but you don't really know until you see it first-hand. We formed on prayer and hope and it worked out."
Leaders at the Michigan Parkinson's Foundation asked Szczepanski, now 56, to start the group to meet needs such as hers. As a facilitator, she brings in speakers and coordinates sessions as a volunteer with educational assistance from the foundation.
The Mid-Michigan Young Onset group now has 40 members and meets at 7 p.m. on the third Tuesday of the month at the United Way office at 909 Washington in downtown Bay City. It's one of only three like it in the state.
"It is more than I thought it would be and I can't believe the response we get from doctors who speak to the group and send patients to us," she said. "We are a family...these are people who really understand."
Carolyn Weaver of Freeland, another longtime group member, now helps Szczepanski lead meetings and provides great encouragement.
Diagnosed 10 years ago, Weaver deals with constant muscle "freezing" that makes her feel her feet are glued to the ground. But she continues to work as a marketing representative for Berner Medical Systems, Lakeshore Diagnostic Ultrasound and RediMed, traveling to meet clients and conduct training sessions.
"I can drive, but with Parkinson's, it depends on the day. You are either on or really off," she said. "So I get rides and help from co-workers. I really want to continue working and stay active. I want to let people know there is life after Parkinson's."
Weaver, now 58, takes medication every three hours to control symptoms -- as does Szczepanski, who deals with muscle tremors and loss of sleep. The disease affects every person differently, making research a challenge.
But Weaver is helping to improve the search for a cure. She was one of 25 people
chosen last year by the national Parkinson's Disease Foundation to take part in an institute dedicated to educating people about the need for more clinical research.
"Less than 1 percent of Parkinson's patients participate (in clinical research). We need more data to move forward (toward a cure)," Weaver said.
She makes presentations about clinical research trials to doctors and patient groups and will help lead a second institute this fall. She recently took part in a study at the University of Michigan on gait disorders such as the freezing that stops her walking.
"I walk with a cane, but I am getting a trained dog soon who will help trigger my motion when I stop," Weaver said.
Grand Rapids-based Paws with a Cause is preparing the dog, and a local trainer will teach her to use the dog's skills and lead it with a harness. Weaver also helped raised money for the training.
On Aug. 15, Weaver welcomed group members and others interested in joining the support group at her Freeland home for a garden party. She and Szczepanski expected up to 75 people for the potluck, including some doctors who have spoken at meetings and Michigan Parkinson's Foundation leaders.
They hope to continue to grow the support group and have formed a second group for care partners, such as spouses or other family members. Both women get great support from their husbands, they said.
They even have plans to bring a dance instructor to group meetings because dancing can help with controlling movement, Szczepanski said.
"It's a wonderful group of people and it's encouraging," said Weaver. "We have a policy to stay positive."
What is Parkinsons?
• Parkinson's disease is a movement disorder that is chronic and progressive, meaning that symptoms continue and worsen over time.
• Nearly 1 million people in the United States are living with Parkinson's. The cause is unknown. There is no cure, but there are treatment options such as medication and surgery to manage symptoms.
• The disease can cause several different symptoms. Some of the most common are tremors, rigidity, slowness of movement or impaired balance and coordination.
• For more information about the disease and the Parkinson's Disease Foundation, visit www.pdf.org.
Source Date: Sep 08 2009
Source Publication: MLive.com
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