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Creating the support she needed herself PDF Print E-mail
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Written by MITCH MAERSCH   
Wednesday, 03 January 2018 18:07

Skutka couldn’t find a local Parkinson’s support group so she started one

Barb Skutka of Cedar Grove didn’t ask for Parkinson’s Disease, but she said she could accept God’s will for her life.
But the fact that there wasn’t a local support group? That wasn’t going to fly.
Skutka, a secretary at Cedar Grove-Belgium High School, said she noticed mysterious symptoms in spring of 2016. Her hands wouldn’t do what they are supposed to, and she had difficulty brushing her teeth, using a computer and writing.
But she didn’t know what the source of her problem was.
In fall, she began having leg tremors, prompting a doctor visit.
Blood tests and visits to multiple specialists yielded inconclusive results. But an MRI ruled out multiple sclerosis, a brain tumor stroke and pinched nerve.
A neurologist didn’t think Skutka had Parkinson’s, but by then she and her husband Sean had been checking the Michael J. Fox website.
“I didn’t have one or two of the symptoms but more than half,” Barb wrote in her journal on the Caring Bridge website.
A visit with a motion disorder neurologist in April led to a diagnosis of Parkinson’s on the spot.
Skutka was at a bit of a crossroads and had to make a choice.
“I have always believed in God’s sovereignty and felt that this was apparently God’s will for my life,” she said. “My decision would be either let it make me bitter and angry at God or to use it to benefit others as well as make me fully rely on him. I chose the latter.”
Skutka looked for a local support group. One in Sheboygan had disbanded, and Ozaukee County didn’t have any.
“If the closest one is in Milwaukee, that’s not acceptable,” she said.
So Skutka decided to start one herself. She attended some area groups and read a 40-page book on starting a support group, with tips on handling people who talk too much or don’t talk at all.
The group met at Skutka’s house a couple of times, and then she used a room at the Cedar Grove Public Library in September and scheduled a speaker from the Wisconsin’s Parkinson’s Association. She said 10 or 20 attendees would have been deemed a success.
Nearly 30 walked through the doors, hailing from Bayside to northern Sheboygan County and many communities in between.
“I was pretty shocked. People just kept coming and coming. We didn’t even have that many chairs set up,” she said.
“That confirmed there’s a need.”
Some group members have the disease. Others are spouses, friends or caregivers. Someone lost her husband to Parkinson’s. Skutka welcomes them all, with a caveat.
“Everyone has a bad day and you’re allowed to complain a few minutes,” she said, but “then come up with a solution.”
Parkinson’s affects different people differently, which adds to the difficulty of finding a cure.
Skutka does physical therapy and has tried medications but has yet to find the right mix to help her symptoms of leg tremors and decreased dexterity in her right hand.
“None of this hurts me,” she said. “It can always be worse.”
Skutka continues to lead exercise classes nearly every day and can handle her job at school. She had to give up her side job of cleaning houses.
The next support group meeting is 6:30 p.m. Jan. 22, at the Cedar Grove Public Library. A physical therapist and speech therapist will be speaking.
For more information about the support group, contact Skutka at 920-889-9154 or at This e-mail address is being protected from spambots. You need JavaScript enabled to view it . The group’s Facebook page may be found at www.facebook.com/cedargroveparkinsons.

 
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