Understanding Parkinson’s

GREENFIELD — A support group will be launched next month for Parkinson’s disease patients and their families.

The group will meet for the first time June 8 at Hancock Regional Hospital.

Hancock County Senior Services partnered with the hospital to organize the support group.

Kit Paternoster, volunteer coordinator at senior services, said she began working to form the group after a former client told her she felt the community could benefit from one.

The client, who had Parkinson’s — a degenerative nervous system disorder — had been living in Hancock County at the time and felt those surrounding her didn’t have a clear understanding of the disease, Paternoster said.

She was looking for support and socialization. She wanted to surround herself with people experiencing the same hardship she was, Paternoster said.

That client has since moved out of the county, but the idea stuck with Paternoster. She began working with representatives from the hospital to begin the process of forming the support group.

The support group seeks to fill a gap in programming, Paternoster said. Senior services does not compile data about how many county residents have the disease, but Paternoster noted there are no similar support groups in the area for those who are affected.

After talking with local neurologists, she learned there are likely enough people affected by the disease that there’s a need for a group.

Parkinson’s is a slowly progressive disorder of the nervous system that causes tremors, stiffness, rigidity of the muscles and slowness of movement, according to the Parkinson’s Awareness Association of Indiana.

There’s no cure for the disease, and its cause is unknown. Medications, however, can help control symptoms.

Many of its symptoms are caused when nerve cells in the brain break down or die, decreasing dopamine levels, according to the Mayo Clinic. Dopamine levels in the brain correlate to a person’s sense of well-being, leaving Parkinson’s patients at risk of depression.

Support groups can be helpful to patients and their families as they learn to navigate the disease and cope with it, according to the Mayo Clinic.

Formation of a local support group was welcome to Jean Jones of Greenfield, whose husband, Jerry, was diagnosed with Parkinson’s in 2007.

Jones pointed to the need for a support system for both patients and their caregivers. Having friends who understand the impact the disease has on their lives is helpful, she said.

“I can talk with my family, I can tell you the kind of things I’m up against; but you know it’s those people that experience it, they’re the ones that really do understand because they’re going through the same kinds of things I’m going through,” she said.

People dealing with the disease need that companionship as well, she said.

“My experience with the support groups is you build friendship. You build camaraderie,” she said.

Programming details are in the planning stages, but Paternoster said she’ll work with neurologists and other experts to facilitate presentations and discussions about the disease. She’ll also take cues from attendees about the topics they feel are most relevant to them.

She’s also working with the Parkinson’s Awareness Association of Indiana to educate herself; Paternoster will be the facilitator of the group.

“I’m certainly no expert, but I’m learning a lot,” she said. “The people who have Parkinson’s disease will be the experts.”

She said she hopes the support group will provide Parkinson’s patients with an outlet to talk about their challenges as well as a place to feel supported by those who understand.

“It’s not a therapy group, but it helps people realize they’re not the only ones out there struggling to live with this disorder,” she said. “It gives people a chance to relax and be themselves in a setting where everyone else is struggling with the same disorder.”

Linda Garrity, community education coordinator at Hancock Regional Hospital, said the hospital regularly hosts 11 support groups. Leading the groups supports the hospital’s goal to provide overarching patient care that addresses a patient’s needs at all stages of wellness.

“There’s a real benefit — we know from research — of just being with a group of people that are in the same situation as you are,” she said.

There hasn’t been a support group for Parkinson’s disease in the recent past in Hancock County, and Garrity hopes those suffering from the disease will find it helpful.

She and Paternoster said they believe attendees will be able to provide support to each other and learn from one another.

“I just hope those struggling with this disease will at least give it a try,” Garrity said. “The group will be what the group makes it.”

At a glance

A support group for those suffering from Parkinson’s disease will start next month at Hancock Regional Hospital. 

The group will meet from 2:30 to 4 p.m. the second Monday of each month in a lower-level classroom at the hospital.

The group’s first meeting is June 8.

For more information, contact Kit Paternoster at Hancock County Senior Services: 317-462-3758 or kitp57@hcssi.org.

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Samm Quinn is a reporter at the Greenfield Daily Reporter. She can be reached at 317-477-3275 or squinn@greenfieldreporter.com.