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Finding a balance

Parkinson’s disease sufferers find support, therapy and camaraderie in Bond Wellness Center group

  • Residents meet monthly for a Parkinson's Disease support group at the Bond Wellness Center in Peterborough.
  • Residents meet monthly for a Parkinson's Disease support group at the Bond Wellness Center in Peterborough.
  • Residents meet monthly for a Parkinson's Disease support group at the Bond Wellness Center in Peterborough.
  • Residents meet monthly for a Parkinson's Disease support group at the Bond Wellness Center in Peterborough.
  • Residents meet monthly for a Parkinson's Disease support group at the Bond Wellness Center in Peterborough.
  • Residents meet monthly for a Parkinson's Disease support group at the Bond Wellness Center in Peterborough.
  • Residents meet monthly for a Parkinson's Disease support group at the Bond Wellness Center in Peterborough.

For Patti Szydlo of Peterborough, her diagnosis with Parkinson’s disease started with a tremor in her right thumb. Doctors thought it was an essential tremor, the most common movement disorder, and didn’t prescribe any treatment for it. Within a year, her other thumb was showing the same tremor. She was eventually diagnosed with Parkinson’s disease, a motor disorder caused by the death of dopamine-producing cells in the brain.

Early in the course of the disease, symptoms include shaking, rigidity, slowness of movement and difficulty walking. In later stages, thinking and behavioral issues may arise, and dementia can form in the most advanced stages.

Ten years into her diagnosis with Parkinson’s disease, and Patti must use a cane to get around outside of her home. And using the cane was a hard decision to make, she told several members of a support group for Parkinson’s she meets with monthly at the Bond Wellness Center in Peterborough.

“It’s taken all my courage to use a cane,” she tells another member of the group as they discuss walking aids.

This month, the group was speaking with a guest speaker, an orthopedic physical therapist, Dave Nielsen, about some of the things they can do to their home to make it more accessible as their disease and ages progress. Some of the advice is small — adding grab bars, or an elevated toilet seat or purchasing motorized recliner to assist in getting around and up and down out of chairs, or adding lights and clearing pathways to common nighttime destinations — usually the bathroom. Some of it is more long-term planning, such as considering options when it comes to ramps, wider doorways to accommodate wheelchairs or other walking aids, and bathroom remodels.

Though the attendance for the support group was light this month due to bad winter weather, with only Patti Sydlo and her husband Stan Sydlo, and fellow members Patrick Linzi, who has Parkinson’s, and his wife Eileen Linzi of Greenfield, both commented in interviews following their support group session that the support group has been a facet of their way of coping with their disease since early on.

“It’s a great source of information and help,” said Patrick. “There’s information on medication and speakers.” In fact, he said, his first piece of advice for anyone diagnosed with Parkinson’s is “Join a support group. Everyone’s Parkinson’s is different. You have to try different things to see what works. The only way to find those things is to talk to people going through the same thing.”

Patti agreed, noting that joining a support group was one of the first things she did when she was officially diagnosed, and she still attends both the Peterborough support group and one in Keene.

“There’s nothing like being able to talk to people that know what you’re going through,” she said.

The other key for her, Patti said, is keeping active, particularly in doing as much exercise as possible. Because one of the effects of Parkinson’s is a decrease in dopamine, and exercise helps the body to produce it, it can be helpful in a number of ways. Not only does it help with those dopamine levels, it can help stretch muscles tightened by the disease. “I’ve continued doing what I’ve always done to the best of my ability,” she said. “When you have this, you have it. There’s nothing you can do about it but accept it.”

Patrick too, said that he also kept pursuing normal activities, including – where he could – sports such as tennis and golf, and integrating exercise at the Bond Wellness Center to help him keep his flexibility and strength.

“I feel very lucky that I have Parkinson’s that is very slow-moving,” he said of the disease’s progression. “I still have my balance. I can still play golf.”

Part of trying to maintain that normalcy, Patti noted, is not allowing herself to be pandered to. That’s a struggle on both sides, noted her husband, Stan. As her husband, he also doubles a main caretaker for her, he noted. It’s hard sometimes watching his wife struggle with tasks as simple as buckling her seatbelt, or having to thread a needle to allow her to continue her quilting hobby, but one of the things that Patti has made clear from the beginning is that she’ll ask for help when she needs it — and not before.

“I’ve always told my kids, ‘I have a mouth. If I need help I’ll ask for it,’” she told her support group on Tuesday. “But I worry that if I keep pushing everyone away that hen I do need it, they’ll say, ‘Do it yourself.’”

Every month, after the group meets for their support group, some of them move over to the Bond Wellness Center’s therapy pool to get in some additional exercise in the pool, taking advantage of the water’s buoyancy to work on their balance and exercise without the fear of falling.

Charlie Stevens of Hancock, and his wife, Marsha Stevens, attended a pool session on Tuesday to help work Charlie’s muscles. Charlie was diagnosed with Parkinson’s in 2008, and has been attempting to continue exercising enough to be able to get strong enough to resume some of his heartier activities, including his ultimate dream of once again being able to climb Mount Monadnock. The water gives him increased mobility, he said, allowing him to jog in the water and do sidesteps while wearing a buoyancy belt.

“This is not a disease that’s going away. It’s with me as long as I’m around. I can only hope to stay with it and hope my life is livable,” he said.

The Parkinson’s support group runs from 1 p.m. to 2 p.m. every third Tuesday of the month at the Bond Wellness Center and is open to those with Parkinson’s, their caretakers or family members. The group is co-facilitated by Bernadette Stephens and Anita Mendes and is welcoming new members. Stephens teaches a swimming with Parkinson’s class at the Bond Wellness Center every third Tuesday between 2 p.m. and 3 p.m.

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