Unusual Wichita club fosters resilience, camaraderie as members grapple with Parkinson’s

“Not today, Parkinson’s!”

It’s a chant that can be heard in the halls of Wichita State University’s Heskett Center throughout the week. It’s a hashtag that can be found on every new post on the Facebook page for Wichita’s Club Parkinson’s.

It’s a mantra that heralds defiance, resilience and perseverance from those who chant it, fists raised in the air.

At Club Parkinson’s, members refuse to believe a diagnosis is the end of the story.

Club Parkinson’s is a non-profit organization dedicated to providing resources to people diagnosed with Parkinson’s disease and their caregivers. It is Wichita’s only non-profit group for Parkinson’s resources.

Parkinson’s disease is a progressive brain disorder that affects the nervous system, causing unintended and imprecise movements.

The group was founded by Connie Urbanek, a physical therapist assistant clinician, and Shana Gatschet, an occupational therapist clinician.

“Really our vision is to bridge the gap between a diagnosis of Parkinson’s disease and living well,” Urbanek said.

Community and camaraderie

Jim Oertle joined the group soon after he was diagnosed with Parkinson’s disease. Within two months, he said, he noticed significant improvements.

“Depression? Gone. Appetite? Returning. Strength, balance and coordination? So much better that it’s like going back in time!” he said in a post about the club on Facebook. “I have every confidence that my tremors will fade somewhat with time and tuning of my meds. Family and friends are surprised that all of this has happened in such a short time. I am too.”

Oertle said the community aspect of the club has been an important and surprising part of his improvement.

“There are no strangers here,” he said on Facebook. “This frank camaraderie is the single most important component in my plan for managing this disease, and I get the feeling that the group, as a whole, feels the same way.”

Club Parkinson’s member Delia Jackson was diagnosed with Parkinson’s in 2013. She has been around the disease a lot longer: She is the third generation of her family with Parkinson’s disease.

Jackson said she has never seen a resource like this.

“I’ve been to other places that offer Parkinson’s classes, but none of them have the camaraderie or the true variety of classes,” she said. “If you have Parkinson’s, this is really the family to be with.”

After joining last November, Jackson now attends around seven classes a week. Over time, she has noticed improvements in her physical condition and has even regained the ability to write.

As her caregiver, Jackson’s husband, Norton, comes to classes with her every day Club Parkinson’s is in session.

“To me, that’s very important because I know that at some point in time, I’m going to need to be cared for, and I need to have him healthy so that he can take care of me,” she said. “This isn’t just a me issue. This is a family issue.”

Jackson called the camaraderie she and her husband found at Club Parkinson’s an important part of what distinguishes it from other resource groups. The commitment to this environment, she said, keeps her coming back week after week.

“Shana and Connie are invaluable,” she said. “You can tell that they really care. It’s in their heart.”

Hearing this response from club members, both Urbanek and Gatschet say they feel some pressure to best help those they are serving.

“We are reminded of grit, determination, perseverance, inspiration, and it makes us want to make sure Club Parkinson’s will stick around for a very long time,” Gatschet said.

Providing Parkinson’s resources

Urbanek and Gatschet met about three years back, discovering a shared passion in working with patients suffering from Parkinson’s disease. This passion led them to form Club Parkinson’s.

“There’s a profound lack of resources in the Wichita community for those with Parkinson’s and their caregivers,” Gatschet said. “We can really see a big difference on how much progress they can make if they’re taught the right tools and educated with resources and motivated, as well as try to work on developing a community establishment.”

Parkinson’s disease is generally marked by body tremors, stiffness in muscles, slowed movements, impaired posture and gait instability, among other possible symptoms.

“There’s a saying that I heard once, that ‘If you’ve met one person with Parkinson’s, you’ve met one person with Parkinson’s,’ because the disease affects all of us differently,” Jackson said.

According to Club Parkinson’s, over 10 million people live with Parkinson’s disease globally with an average age of 60.

“Globally, disability and death due to PD are increasing faster than for any other neurological disorder,” the World Health Organization says.

The Michael J. Fox Foundation for Parkinson’s Research reported last December that the annual rate of new Parkinson’s cases in the United States was 50% higher than previously believed. The report states that nearly 90,000 new cases of Parkinson’s are found in the United States each year.

It is the mission of Club Parkinson’s to use their research-based programs to improve the well-being of those living in the area with Parkinson’s disease, as well as assisting their caregivers. “Redefining what it means to live with Parkinson’s disease” is a goal Urbanek and Gatschet have adopted.

About 30% of Club Parkinson’s members are caregivers, and roughly 36% are veterans or their caregivers.

“We felt it was very important to include caregivers because it’s not just a one-person diagnosis,” Gatschet said.

Slowing Parkinson’s symptoms

Club Parkinson’s offers members a variety of classes meant to promote physical and mental wellness. These classes are currently held weekly on Monday, Wednesday and Friday. In the fall semester, Club Parkinson’s will begin to offer boxing classes on Tuesdays and Thursdays.

The classes include aquatics, cardio, education, yoga and empowerment groups. Certain classes, such as fall prevention, have basic tiers where members can work at a slower pace according to their needs.

“Studies are showing that with proper exercises, you can slow your symptoms,” Urbanek said on a tour to potential members.

The toughest class, Urbanek said, is F-45, a class with 45 minutes of high-intensity functional training. Urbanek said she thinks Club Parkinson’s is the only Parkinson’s resources group to have access to an F-45 facility on a university campus.

Gatschet said the club has a low turnover rate. The members who do leave often do so due to medical reasons such as illness or decline. Though attendance is optional, most members attend two to three classes every day the Club is in session, they said.

“They see how much better they’re doing, they feel better,” Gatschet said. “Outcomes across the board are phenomenal, so they maintain their consistency because they see it works.”

Club Parkinson’s operates out of WSU’s Heskett Center, a recreation center for the university. Here, the non-profit group rents space to hold both their classes and their offices throughout the week.

The university provides electronic keycards and parking spaces to Club Parkinson’s members to create more physical accessibility.

Gatschet said being located in the Heskett Center also gives the club access to student-applied learning and research in the field of Parkinson’s disease.

“[Wichita State University] President [Richard] Muma is very open to helping us whenever we ask,” Urbanek said.

On top of the classes and community granted to members, Club Parkinson’s membership includes full access to the Heskett Center, regardless of whether the club is meeting.

“We are very fortunate for the opportunity to host classes here and that WSU does support us,” Gatschet said.

All of Club Parkinson’s coaches are certified clinicians. Though they’ve recently stepped more into support roles, Urbanek and Gatschet still coach some classes themselves.

“Today I got to teach again,” Urbanek said. “It’s so inspiring. They’re working so hard just to slow this disease.”

And most of them do. When members start at Club Parkinson’s, baseline measurements are taken in eight categories including balance, coordination and a self-assessment. They are then retested at six months and one year later to see how their symptoms have progressed.

After a year, 55% of Club Parkinson’s members’ test scores improved, while 25% maintained.

A growing membership

In the beginning, Club Parkinson’s had 12 members. Now, they have 76.

“There is a huge sense of responsibility to our members,” Urbanek said. “I was just telling Shana the other day, it’s like I feel more stress a year and a half in than I did when we started.”

Club Parkinson’s is funded through grants and donations, as well as monthly membership fees, which operate on a sliding scale system. A single membership can range from $52 to $149 a month.

Gatschet said most of their advertisement for Club Parkinson’s has been done through Facebook and their website, as well as word of mouth. The pair have reached out to healthcare professionals so they can inform their patients about the group, and they’ve spoken at events and organizations to spread the word.

“We still feel like we’re very unknown,” Gatschet said. “There’s a lot of people that are underserved, have not been diagnosed or maybe misdiagnosed, so we want to share that there’s all level of ability, the members that are here.”

Though Club Parkinson’s has gotten multiple grants, Urbanek and Gatschet said they have been denied for several others, with the organization’s age being a repeatedly cited factor.

“As a non-profit, it’s a huge responsibility to find that money to sustain the program,” Urbanek said. “The reason that we get denied when we ask is because they’re saying, ‘You’re too young of a company.’ Like, they want to see somebody that’s got a three-year track record.”

Club Parkinson’s offers tours on Wednesdays for prospective members as well as a one-day free trial of classes. Various membership packages are offered.

“We’ve proven it works, and that was step one,” Gatschet said. “Now we need to make sure it sustains in the Wichita community because we are absolutely making a difference.”

Club Parkinson’s will host an open house Oct. 17. For more information, visit clubparkinsons.org.