Parkinson’s support perseveres

A few years after forming a Parkinson’s disease support group, Barb Skutka doesn’t need to verbally express its value.

The 40 patients and caregivers who regularly attend monthly meetings take care of that.

Skutka, a secretary at Cedar Grove-Belgium High School, started the group in September of 2017 after being diagnosed with the disease that March.

Parkinson’s is a neurodegenerative disorder that can cause tremors, slow movement, limb stiffness and balance issues.

The Covid-19 pandemic didn’t stop the Cedar Grove Parkinson’s Support Group but it slowed it down for a while. The Cedar Grove Public Library closed and didn’t allow people to use its community room.

The group met online for several months, drawing a smaller crowd, before last summer First Reformed Church in Cedar Grove allowed members to meet in its reception hall, which is large enough for social distancing.

“I see firsthand the detrimental effects that Covid and all the restrictions — fear, etc., — have had on our group,” Skutka said. “Not just physically, although that is most visible. Even though we all know exercise is the only proven staller of the disease, some are not participating as much, if at all, as they did pre-Covid.”

She tried to contact those who stopped attending, but that proved to be formidable since the membership list has 84 names.

Skutka recently asked regular attendees for help, handing out cards with contact information for those who stopped coming.

Those who attend attest to the group’s benefits. Many had been looking for a support group but one in Sheboygan disbanded and the next closest one is in West Bend.

“It’s nice to know you’re not alone. You don’t think this many people have it,” Jean Streff, whose husband Gary has the disease, said.

More than 20,000 people in Wisconsin have Parkinson’s, according to the Wisconsin Parkinson’s Foundation. Nearly 1 million people in the country have the disease, and about 60,000 new cases are diagnosed each year, with incidences increasing with age, according to the Parkinson’s Foundation.

For the Streffs, informal group discussions with fellow members can be as enlightening as guest speakers.

Jean notices her husband leaves cupboard doors open and lights on.

“You listen to everybody else, ‘Oh yeah, my husband does that.’ I didn’t know that was part of Parkinson’s,” she said.

Ken and Lil Pipping of Elkhart Lake haven’t missed a meeting since the group formed three years ago.

“The big thing is we’re all in this together,” Lil said. “You don’t look down on somebody else because you’ve been there.”

They said discussions, especially breakout sessions when caregivers and patients meet separately, spark illuminating talks during the trip home. Lil said she was “shocked” to hear her husband, who has the disease, gets hallucinations.

The group has improved their quality of life.

“I can see the difference in him,” Lil said. “I can feel more confident.”

For Al Neumann, who has had Parkinson’s for 11 years, and his wife Diane of Random Lake, attendance is key.

“The numbers themselves just enable us to secure speakers,” Al said.

Skutka has a table full of brochures and information about Parkinson’s at each meeting, and she distributes evaluation sheets asking members what topics they want to cover.

Last month, Trisha Erpelding, director of mental health education and advocacy for Mental Health America in Sheboygan, talked about depression. Although it’s difficult to measure because not everyone gets help, the general rate of depression is 7% to 10%. For those with Parkinson’s Disease, it’s 50%, she said.

Each meeting also includes snacks, and Skutka holds a summer picnic and a Christmas party each year.

“Barb is good about organizing this,” Ken Pipping said.

Skutka continues to offer the option to attend meetings via Zoom, which has drawn one to 20 participants.

“I’ve had folks ask why do we Zoom when sometimes we only get one person to join. I believe one person is enough, and you have more personal conversation that way too,” Skutka said.

“I refuse to be controlled by numbers as my gauge for success. If one person received a blessing, that’s enough.”

Skutka said she wants to spin off a group of just female patients in fall. Women, she said, can experience different symptoms than men and they respond to things they are unable to do anymore differently.

She plans to call the group MAD — Make A Difference Women.

The Cedar Grove-Belgium school community has helped support the cause, raising $410 through staff members paying to wear jeans and royal blue on Monday in commemoration of April being Parkinson’s Disease Awareness Month.

For more information, contact Skutka at (920) 889-9154 or at bskutka@wi.rr.com. The group meets the fourth Monday of the month from 6:30 to 8 p.m.