March 30—About 10 years after being diagnosed, John Kraft wanted to join a local Parkinson’s disease support group, but there were none.
A staff member at Johns Hopkins Hospital suggested Kraft start his own band, and he did.
Twenty people came the first day.
“We knew right away … there was definitely a need in Frederick County for a Parkinson’s disease support group,” said Kraft’s wife, Mary, 78, of Mount Airy.
The Friends in Frederick Parkinson’s Disease Support Group has been active since its founding in 1996.
Another local support group, the Parkinson’s Disease Support Group of Frederick, also meets regularly.
Parkinson’s disease is a neurodegenerative disease that affects dopamine levels in the brain, according to the Parkinson’s Foundation. Symptoms manifest differently from person to person, but can include tremors, balance problems, speech problems and more. There is no cure, but treatment and medication can help people with Parkinson’s disease manage symptoms.
Members of the Friends in Frederick support group include people with Parkinson’s disease, their caregivers and family members.
“The more I got involved, the more I saw the benefits,” said Walkersville resident John Nicodemus, 65.
As Nicodemus recounts, the group offers a network of resources and friendship. If someone is feeling down about a new symptom they’ve developed, the group is there to lift them up. Or if a member wants to share a joy, the group is there for that too.
“Yes, I have Parkinson’s disease, but Parkinson’s disease doesn’t have me,” Nicodemus said.
As the leader of the group, Nicodemus likes to open the monthly meetings with a joke or two. If anyone is left behind after his jokes, he laughs, the members then share a meal and listen to a speaker, often a member of the medical community who can provide relevant information.
Nicodemus compares the group to pies, but not the dessert. Perspective, information, encouragement and support, or “PIES” for short, is what he draws from the experience. “These are the four things that I think I will receive or can give.”
Mount Airy resident Steve Silvious, 69, manages the group’s website, fifpdsg.org.
His late wife, Janet, was diagnosed with Parkinson’s disease in her 40s and lived with it for 22 years. Silvious said the disease can feel isolating.
“When you have something like that, you feel like you’re alone,” Silvious said, but the Friends in Frederick group showed they weren’t.
Janet served as group leader before her death last October. Attending the support group together, Silvious said there were often times when he and his wife looked at each other when a speaker was saying something that resonated with them. They have been married for almost 50 years. Silvious said the Friends in Frederick group provided him with a community as a caregiver and a place where his wife could meet people who understood his experiences first-hand.
“Our group’s goal is to bring people with Parkinson’s together,” Silvious said. “It also gives us the opportunity to sit down with each other and talk about the disease.”
People are discussing medications and mobility aids that work for them, for example, and letting others know they’re not alone. They are made aware of resources such as local exercise classes, which can help people manage Parkinson’s disease. And Silvious said the members didn’t have to feel bothered by a tremor or other symptoms because other people had them too.
“You’d be surprised how many people feel the same way,” Mary Kraft said.
At 76, John Kraft took a step back from leading meetings as his Parkinson’s disease progressed, but he still has a perfect attendance record.
He said it’s important to stay physically active when you have Parkinson’s disease.
It also helps to have a sense of humor.
The Friends in Frederick group, says John Kraft, helps him do both of these things.
“Don’t be afraid to come to a support group,” said Mary Kraft. “You might be surprised what you find there.”
Follow Mary Grace Keller on Twitter: @MaryGraceKeller