When Gerald Saint Amand walks into a restaurant, cane in hand, he says people look at him and say, “Poor man.”

That is because the once active runner, hiker, mountain climber and kayaker, who has been involved in community affairs for many years, now walks slowly, hesitantly and often pauses before taking the next step.

Saint Amand, 76, of Winslow, has Parkinson’s disease, a nervous system disorder that is progressive and affects movement. There is no known cause or cure for the disease.

While Saint Amand was diagnosed 20 years ago and the disease at first progressed slowly, it has manifested itself significantly over the last few years.

“I have to focus, concentrate and stay busy,” he said. “As you can tell, my voice has changed. My pronunciation has changed. I have to try to speak up and speak loudly.”

Parkinson’s hardens muscles and connective tissue and affects extremities. Saint Amand said that makes it difficult for him to use a computer and type. But even with the changes, which are challenging, he is not self-pitying.

“I feel I’m a lucky man, a happy man,” he said. “I may be slower than before, but I’m lucky.”

The former Winslow Town Council chairman worked at Ware-Butler in Waterville nearly 45 years and retired more than a year ago. His wife, Ruth, 67, retired the same day from the Retired Senior Volunteer Program at MaineGeneral Health.

She says she thinks her husband’s positive nature has helped him to keep pressing forward.

“He’s got a great attitude,” she said. “It makes all the difference in the world. He doesn’t let the disease define who he is.”

She has been by her husband’s side during the disease’s progression, and, though it has been difficult to watch, she will continue to stand by him.

“I don’t take care of him,” she said. “He takes care of himself, basically. I’m not taking care of him yet, and when that comes, I’ll do it happily.”

Gerald Saint Amand will share his experience with Parkinson’s at 10 a.m. March 15 at the Universalist Unitarian Church at 69 Silver St. in Waterville. The public is invited to attend.

He is no stranger to the church, having been a member nearly three decades and served as vice president and president of the board of trustees, as well as treasurer, and property and grounds manager. He also managed the church’s coffeehouse many years, drawing well-known Maine musicians such as David Mallett and Gordon Bok.

Dennis Perkins, the church’s current trustees president, said that Saint Amand acknowledged he was initially one of three people who took the property and grounds manager position nearly 29 years ago, but he quickly found himself the only manager. Saint Amand used his contacts and experience in radio to start the coffee house and draw performers there, Perkins said.

“His decision to retire from all these responsibilities this spring, though understood and appreciated by his fellow church members as medically necessary, was nonetheless received with great sadness and reluctance,” Perkins said. “He is sui generis — one of a kind. It will take at least a team of three to replace him.”

Saint Amand is well-known in central Maine, having graduated from Winslow High School in 1961 — he is  helping to organize a 60th class reunion for next year. In 1967, he graduated from Thomas College with a degree in business administration.

He served on the board of directors for the Waterville YMCA and is former vice president of the board for Hospice Volunteers of Waterville Area. He also was a board member and victim counselor for Rape Crisis Assistance of Waterville and was active in politics.

“I’ve been very lucky,” he said. “I’ve had 76 healthy, active years. I love to run, so I’ve done a lot of running, and ran eight marathons.”

In late 2000, he and his wife noticed something wasn’t quite right. Climbing stairs was difficult for him and his balance and coordination were off. Doctors worked to find out what was wrong.

“They sat me down in a room and said, ‘You have full-blown Parkinson’s disease,’ ” Saint Amand recalled. “It was a slow progression. As the years went by, I went on medication and I retired. It changes you. You have to do things differently.”

Saint Amand goes to physical therapy twice a week at Northern Light Inland Hospital, enjoys movies, reads a lot and does as much outdoor work as he can. Friends, family, co-workers and the business community have been supportive — more so than he ever imagined.

“It’s hard for me to accept help, but I’m learning, and Ruth has been phenomenal,” he said. “I’ve enjoyed my life. I’ve got two wonderful daughters, Lisa and Terryanne, and two granddaughters, Samantha and Tessa.”

Saint Amand said he offered to speak at the church March 15 because Parkinson’s is not a popular subject and he hopes his story will help others. Some people aren’t comfortable talking with him about the disease, though he is happy to discuss it.

“In time, they understand it and it’s OK,” he said.

Asked what he would want people to know about his journey, Saint Amand reiterated that he is happy and enjoying life. Asked what advice he would give to others who have Parkinson’s, he responded without hesitation:

“Enjoy your life. Accomplish something. Make a difference. On to the next chapter.”

 

Amy Calder has been a Morning Sentinel reporter 32 years. Her columns appear here Saturdays. She may be reached at acalder@centralmaine.com. For previous Reporting Aside columns, go to centralmaine.com.

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