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Learning to live with Parkinson’s

Thursday April 28, 2005

WENDY ISOM

Apr 25 2005(Jacksonsun.com) - When Jane Wolfe was first diagnosed with Parkinson’s disease, she felt isolated.

’’I didn’t know anyone else with Parkinson’s,’’ the 67-year-old said. So, ’’I thought it would be great to have a support group,’’ said Wolfe, who formerly worked as a professional advocate for people with disabilities in the state of Tennessee. Parkinson’s disease is a progressive brain disorder characterized by physical signs that sometimes mimic a stroke survivor.

Wolfe, who is being treated at Vanderbilt’s Movement Disorder Clinic, lives in Jackson.

Last fall, Wolfe called the Jackson-Madison County General Hospital to inquire about getting a support group started.

She was directed to Anita Roark, the rehab marketing manager for the West Tennessee Rehab Center. Roark has helped to set up other support groups in the community.

They sent out a survey to people who have been identified as having some symptoms of Parkinson’s. After receiving responses, they set up a time and place to meet.

The first meeting was held in a small room at Jackson-Madison County General Hospital. ’’Honestly, we thought we might get seven or eight people,’’ Roark said of the attendees for the first meeting that was held in March.

But, Roark said she and Wolfe were pleasantly surprised when ’’we outgrew our meeting room the first night.’’ There were 21 who showed up in all. They were not all people with Parkinson’s disease. There were caregivers and family members and health professionals who also attended.

’’It’s a wonderful mix of people,’’ Roark said, adding that the group is diverse in age. There are people from their 30s to their 70s. Eventually, there are plans to have a meeting for caregivers once or twice a year. ’’Caregivers face a lot of different issues than people who have the disease,’’ Roark said.

People with Parkinson’s disease can experience tremors in their hands, arms, legs, jaws and face. Sometimes, they will also have a slow shuffle in their gait.

Wolfe notes it is ironic that she was already familiar with resources for people with disabilities before she was diagnosed with Parkinson’s.

For Wolfe, she said: ’’I started noticing a tremor first in my left arm. The only time it was still was when I was asleep.’’

First, tests were run to see if she had a mini-stroke.

’’By the time you get the symptoms, it’s pretty well established,’’ Wolfe said of the disease. Wolfe, who tires easily, had to get an electric wheelchair.

The cause of Parkinson’s is unknown, and there is currently no cure.

’’While the condition usually develops after the age of 65, 15 percent of those diagnosed are under age 50,’’ according to the National Parkinson Foundation.

’’They don’t know how a person gets Parkinson’s,’’ Wolfe said, adding that ’’it can be hereditary, drug induced or environmental.’’

Still, Wolfe is optimistic about the future of Parkinson’s treatment.

’’There’s hope in new medication,’’ she said, adding that the controversial debate for stem cell research will affect Parkinson’s patients as well.

Stem cell therapy, which is not allowed in the United States right now, is said to help people with a wide range of incurable diseases, including spinal cord injuries and Parkinson’s.

’’The Parkinson’s people will argue for the stem cell research,’’ she said.

To help her with her stamina, Wolfe goes to aquatherapy three times a week.

Exercising in heated water is very therapeutic for her. She also is on medication for Parkinson’s.

Wolfe has two adult children and an adult grandson. Her children, she said, are her caregivers. She also has three adoring pets: Mack, a Westie terrier, and two Siamese cats, Simon and Pooh.

Although Parkinson’s is incurable, it’s not fatal, the 67-year-old said. It takes some adjusting to, but Wolfe said it is possible to stay active. ’’I drive the car still, and I can go shopping.’’