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Leader retires from Parkinson's support network he helped build

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Leader retires from Parkinson's support network he helped build

FALMOUTH — Carl and Nancy Barker's lives were changed nearly 30 years ago when she was told she had Parkinson's disease.

A medical research technician at Maine Research Center, she was just 50 – considered young for the disease – when she noticed her handwriting becoming increasingly smaller, a symptom of Parkinson's.

"When she was diagnosed, we were relieved because it was the best of the bad neurological diseases – not a brain tumor, ALS, or something else," Carl Barker, 81, said.

The couple sought information and became heavily involved with the Maine Chapter of the American Parkinson Disease Association, which operated at that time with just a "skeleton group" of volunteers, he said. It wasn't long before the organization asked him to take charge. He resigned two years ago, about the time his wife died, after serving as its president for 25 years.

"We decided to get as involved as we could," Barker said. "We received much more than we gave, even though we were very, very active."

Though the APDA supplied educational information and supported research for the disease, Barker was approached by a couple of people who wanted his help in starting a Maine-based organization that would concentrate on providing patients and their caregivers with direct services, such as respite care and equipment. After questioning the need for a second organization, he became a board member of the new Maine Parkinson Society, a position he held for 10 years, until his recent resignation.

Barker said his wife's outlook, adaptability and sense of humor were inspirational to him and to others. As her disease progressed, she made changes to her routines and her expectations, but never gave up on finding alternative ways to pursue the things she loved. She was an expert weaver, but double vision and decreased motor skills eventually required her to simplify her weaving patterns; her garden became a raised bed instead of a one-acre plot.

And she was not afraid to share her situation with those who attended the many groups and functions where the couple spoke.

"She was not going to be ruled by Parkinson's disease; she was going to rule it," Barker said. "The hard times were mitigated by her attitude. It was so easy to satisfy and take care of her; she just found a way around it."

Symptoms and rate of progression of Parkinson's vary from one individual to the next. Most characteristic is the resting hand tremor, but problems with writing, difficulty projecting the voice, general stiffness and one arm that does not swing when walking are all symptomatic of the disease, Barker said.

When the Barkers first learned Nancy's diagnosis, they set out to do the things they had always planned on doing.

"We said, well, we don't know what the future will bring so we are going to do things every day," Barker said.

They traveled the world, first going to Australia and New Zealand. They purchased a trailer and drove around the country.

"Every year we tried to come up with some plans we really wanted to do," Barker said.

Though Barker is no longer active in the organizations he nurtured, his life is anything but dull. An antique car enthusiast, he enjoys restoring cars and showing off his '32 Franklin, '69 Corvair convertible and '47 Hudson.  He searched hard to find the Hudson – it's an exact replica of the first car he bought after graduating from college. Since his house in OceanView is not the ideal spot to work on the vehicles, he now restores children's antique pedal cars, too.

A music buff, Barker plays harmonica ("I hardly ever go anywhere without it in my pocket," he said), a talent he learned when he was 6 from a teacher who stayed after school to to show a small group of students how to play their 50-cent harmonicas. He now teaches Parkinson's patients to play.

Barker also plays guitar and sings in a group at OceanView.

And when he's not making music or with his cars, he's writing his life story in a series of vignettes or tinkering on his newest project – adding a motor to an antique bicycle.

"If it's got wheels and a motor, I'm interested," he said.

But his legacy is the strength of the Parkinson's community. Through his work, statewide support for those living with the disease has grown, along with the organizations. For the past eight years, the Maine Chapter of the APDA has sponsored an information and referral center at the Maine Medical facility at 5 Bucknam Road, a long-time dream for Barker. He also helped increase the number of Parkinson's support groups in Maine from two to 13.

But perhaps Barker's and his wife's greatest contribution to the Parkinson's community has been their inspiration.

Not only were Carl and Nancy Barker's lives changed that day 30 years ago, but by sharing their care, determination and optimism, they have helped change the lives of many others.

Peggy Roberts can be reached at 781-3661 ext. 125 or proberts@theforecaster.net.