Parkinson’s support group is going strong after one year

One of Barb Skutka’s coping mechanisms for Parkinson’s disease can be narrowed down to chocolate, vanilla or strawberry.

Beyond the medical research on treatment and ways to slow the disease’s progression, sometimes just getting together with friends is all it takes to lift someone’s spirits.

That’s why Skutka, an administrative assistant at Cedar Grove-Belgium High School who founded a Parkinson’s support group for patients and caregivers last year shortly after being diagnosed with the disease, and her husband schedule social gatherings and impromptu get-togethers as well as formal meetings.

“The one week I was really down and they called me up special and asked to go for ice cream,” Parkinson’s patient Marijo Pitsch said. “They’re very comforting that way.”

Skutka began the Cedar Grove Parkinson’s Support Group shortly after being diagnosed last year when she couldn’t find a group closer than Milwaukee. She has made several new friends through it.

The group turned 1 in September and draws about 35 people to its monthly meetings at the Cedar Grove Public Library. Skutka holds social gatherings at her home on the second Monday of the month.

“It’s nice to know there are other people who know exactly what you’re talking about,” she said. “I like hearing their stories just as much as they like hearing mine.”

Skutka schedules speakers for some meetings — 62 people recently came to hear a neurologist — and holds discussions at others, sometimes splitting the group into patients and caregivers.

That, said Pitsch’s husband Steve, is important.

“You realize you’re not alone and it makes you feel a little better that there are others you can talk to,” he said.

The group has grown in 14 months, which Skutka said is both positive and negative. She likes providing support but not that more people are getting diagnosed.

“It’s good that there’s always new people, but it’s bad that there’s always new people,” she said.

Regardless, Skutka has a rule at meetings.

“We definitely advocate a positive attitude. We don’t dwell on the crappy,” she said.

Members hail from northern Sheboygan County to Bayside to West Bend.

Skutka is on two medications that have helped slow the disease’s progression and said she feels “pretty good.” She can do her job, bike five times a week and play with her granddaughters.

At an August appointment, her doctor said she could perform physical abilities better than she could when she was first diagnosed. Skutka’s neurologist told her exercise — not any kind of drug — is the only thing that slows progression of the disease.

In September, she did the 9/11 Memorial Stair Climb at Lambeau Field, completing all 110 stories to honor firefighters killed in the terrorist attack. Her husband is from New Jersey and they knew people who died that day.

A connection made through Sean led Skutka to take residents from all three Pine Haven senior living facilities on 30-minute rickshaw rides. The rickshaw came from Denmark via a donation. Rides through Oostburg and Sheboygan Falls have drawn waves and laughs and require some skill.

“I can’t get off the seat when they’re getting on because it’s kind of tippy,” Skutka said.

She hopes her activities serve as an inspiration to others who suffer from various ailments.

“Hopefully, people can see you can still do stuff if you choose to. It might be hard, but that’s the way it is,” she said. “You just have to get past those barriers.”

While Skutka also hopes the support group fosters more friendships, education and moral support, she isn’t interested in taking credit for it.

“When folks give me praise for a good job done with the group, I remind them I am just using my God-given gifts of organization and encouragement. Without Jesus Christ and my relationship with Him — I would be nothing — all the glory goes to Him,” she said.

The group meets from 6:30 to 8 p.m. on the fourth Monday of each month. Social gatherings at Skutka’s home are held on the second Monday.

For more information, contact Skutka at (920) 889-9154 or at bskutka@wi.rr.com.