Community member shares experiences living with Parkinson’s disease

Published 9:57 pm Thursday, April 5, 2018

On the fourth Tuesday of each month, the Southern Minnesota Parkinson’s Support Group is attended by a particular member with one major driving motivation: curiosity.

“I have a hunger for information, and I get some there,” Donna Tuttle said. Tuttle joined the support group between two and three years ago to learn what she could do to help herself. She was diagnosed with Parkinson’s in her mid-70s, seven years ago.

In retrospect, her first symptom was weakness in her legs, which Tuttle noticed because she was an avid cycler. She has since quit because her legs weren’t up to it. But what tipped her off was the tremors she noticed in her hands while teaching an adult education group at church one day. Her husband encouraged her to go to the doctor, and she was diagnosed with Parkinson’s.

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“It’s not what you want to hear, because there’s no opening at the other end,” Tuttle said.

Tuttle said it is an interesting disease because it manifests itself differently from person to person.

“We’ve just found a whole spectrum of people in how they react,” said Anne Troska, who helped form the Southern Minnesota Parkinson’s Support Group in 2004. Her husband’s progression was slow.

Before retirement, Tuttle’s last employment was as a social worker in a nursing home. She had seen the worst of the Parkinson’s there, she said.

“It’s a tough diagnosis,” Troska said.

According to the Parkinson’s Foundation, Parkinson’s affects about one million people in the United States. Troska said the local support group has between 35 and 40 members, including both those diagnosed with Parkinson’s and their caregivers.

“If you have Parkinson’s and you have a spouse or a partner, you kind of both have it,” Troska said, because the spouse or partner is there for it. She noticed this from the way Parkinson’s affected her own priorities through her husband, who died at 82.

“It’s almost like a ministry in and of itself,” she said. ‘He was my focus. I put my life around him.”

Tuttle’s priorities have also sharpened. Although it isn’t cycling anymore, she is a member at Anytime Fitness and puts effort into her physical health. She said multiple doctors have told her exercise is the best medicine. She exercises using a stationary bike, treadmill and rowing machine. She said she feels it is helping her — she doesn’t have to miss a lot of days for her body to notice.

“I do it because I must,” she said. “I want to do everything I can to remain healthy.”

Tuttle said her progression with Parkinson’s has not been particularly rapid. Nonetheless, she doesn’t think much about the future.

“I really don’t think very far ahead about most things,” Tuttle said.

For her, living with Parkinson’s has presented a choice: whether she will take it in stride, or whether she will not. Tuttle has made her choice.

“I think I have made a decision to get the most out of life,” she said.

April is Parkinson’s Awareness Month. Troska suggested those who wish to donate toward finding a cure can make donations to the National Parkinson’s Foundation or to the American Parkinson Disease Association.

About Sarah Kocher

Sarah covers education and arts and culture for the Tribune.

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