‘Not today Parkinson’s’ is club motto

By Bonnie Bing | July 1, 2024

Photo by Bonnie Bing Gary Steed works out during a Club Parkinson’s session at Wichita State last month.

Visit the Heskett Center on the Wichita State University campus, and you may come across a group of radicals. They’re the ones wearing colorful T-shirts with a slogan on the back — “Not Today Parkinson’s” — along with smiles and determined looks that prove they believe it.

They’re also walking, taking aquatic classes, doing yoga and otherwise defying stereotypes about people with Parkinson’s. 

Started four years ago by Connie Urbanek and Shana Gatschet, Club Parkinson’s has made a positive — and in some cases dramatic — difference in the lives of 151 people to date.

“I’ve been here since the very beginning, and it is wonderful,” Gary Steed said after a stationary bike workout last month. “I get to be around great people, and it’s very helpful physically and mentally.”

Knowing that someone is diagnosed with Parkinson’s Disease every six minutes, Urbanek and Gatschet came up with a plan for a research-based program using certified physical, occupational and speech therapists with a focus on improving the overall health and well-being of members.

Members have access to more than 25 fitness classes per week. Meantime, their caregivers get information, encouragement and support from the Empowerment Parkinson’s Caregiver Support Group. They say sharing their stories makes them realize they are not alone.

Right now, there are 111 people active in Club Parkinson’s and 20 enthusiastic volunteers.

“These are my favorite hours of the week,” said Shawn Devlin, who has volunteered for more than a year. It is truly mind blowing to see the progress many people have made.”

Some members come in wheelchairs or use a cane or walker. Some do well on their own. They participate in classes such as Nordic walking and urban poling, increasing their heart rates so that the natural mood enhancer dopamine is produced. The large pool at the Heskett Center is used for aquatics classes. Classes in strength training, functional mobility, boxing (without actual fighting, of course) and more are offered.

Urbanek explained that participants work at their own levels. “Some who can’t stand, sit, and several who started out sitting are now standing to do the boxing exercises.”

Debbie and Dale Wilburn, who is in a wheelchair, moved to Wichita from Pennsylvania to be near their son and family. “We were very thrilled to find out about this program,” Debbie said. “There is nothing like this in Pennsylvania. He is getting exercise and is so much happier. It was his goal to stand at his class reunion, and he did it.”

Statistics show that 66 percent of caregivers also suffer from health and mental health issues. Club Parkinson’s also gives caregivers a membership to Heskett Center, where they can take advantage of the pool, track and other features.

“I’m finally exercising,” caregiver Joanne Pafume said. “And I didn’t have to lie to my doctor last time I had a physical when I checked the box asking if I exercise.”

Club Parkinson’s members gather for lunch on campus every Friday and celebrate birthdays on the last Friday of each month.

        “And before a class we sing,” said member Susan Kellogg, who is a retired music teacher. Members like Lucy Alcala call themselves “Parkies.”

“If you’re female, it’s spelled Parkie,” Alcala said with a grin. “If you’re a a male, it’s ‘Parky.’”

Gatschet said members “have built their own community. We have 90 percent retention of our members.”

Club Parkinson’s is a nonprofit funded through grants, donations and membership dues.

       Tours are offered at 12:30 a.m. Monday and Wednesday, and a free trial membership is available.  For more information, go to www.ClubParkinsons.org or call (316) 252-1877.

Contact Bonnie Bing at bingbylines@gmail.com.