Retired couple has ALS, MS and relies on community's giving spirit


Alan Morrell
Staff writer


(September 6, 2006) — SPENCERPORT — For years, Gordon Jewett taught physical education to physically disabled students in the Rochester school district.

In a cruel twist of fate, Jewett, 71, has been stricken with his own physical disability — amyotrophic lateral sclerosis, or ALS, commonly known as Lou Gehrig's disease, which affects the body's motor nerves and causes muscles to atrophy. Adding to the tragedy, his wife, Kathryn, 67, also a former teacher, has multiple sclerosis.

But this is a story of survival and community. Every day, members of the Jewetts' church, United Church of Christ, and people from their senior housing complex take turns helping out. Men help Gordon Jewett from his wheelchair into bed, and women administer shots to Kathryn Jewett. A group of men known as the Helping Hands assists with tasks such as watering the lawn; others drive the Jewetts to and from places.

"I've written a lot of thank-you notes," said Kathryn Jewett, who taught at the former Madison High School and at Edison Tech. "It's a big help. They make it possible for us to stay in our house."

The Jewetts have private nurses that come by every day, and an aide that visits three times weekly. The extra help from the community lets the Jewetts experience everyday activities that they might otherwise miss, such as attending a recent concert in the village and going out for ice cream.

Gordon Jewett, who was diagnosed with ALS three years ago, said he strongly believes that a good attitude helps him cope with his disease.

"You don't have a choice," he said. "You can feel sorry for yourself or go at it full blast. When the doctors gave us the news (about his ALS diagnosis), I said, 'Kathy, we've got to go to Alaska before I can't go.' And we did."

Sandy Mitchell of Spencerport coordinates a monthly schedule of people who help. At least 50 people are in the pool of volunteers.

"We initiated this volunteer project and expanded it as (the Jewetts') needs have grown," said Mitchell, who has known the Jewetts since they all were teenagers. "Spencerport is a very caring community, a very, very giving community."

Gordon Jewett said his experience with disabled children helped prepare him for life in a wheelchair. While a teacher, he developed ways for the children to adapt, such as building a chute to allow disabled kids to bowl.

"I had 26 years of kids in wheelchairs, kids on crutches, kids with prostheses," he said. "When I got diagnosed, I knew I would have to adapt to many of the modifications that I implemented. At least I had that experience."

Gordon Jewett has thrown out a first pitch at Rochester Red Wings games for the past three years. He'll be involved in the upcoming Labor Day Muscular Dystrophy Association telethon, and will serve as honorary chairman of the ALS Walk, which starts at Cobbs Hill Park in Rochester on Sept. 24.

"I'll be riding in my chair," he said.

His circle of friends will be there, physically or in spirit, to offer their support.

AMORRELL@DemocratandChronicle.com




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