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When George Barrette first heard the word “ALS” from his doctor two decades ago, the prognosis was bleak: he had three to five years, at best.
Twenty years later, Barrette continues to defy the grim trajectory of the disease while navigating life in a power wheelchair and communicating with the help of an iPad. Meanwhile, recent breakthroughs in medical research offer a spark of hope for the future of ALS treatment.
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“God still wants me around,” Barrette types into his iPad, using word prompts to construct sentences that are spoken aloud through a digital voice.
He rests in his wheelchair in the backyard of his Leamington home, a place he enjoys spending sunny afternoons. Moments later, he bursts into a hearty laugh.
Amyotrophic lateral sclerosis, or Lou Gehrig’s disease, is a rare, terminal condition that strips away the ability to walk, move, swallow, speak, and eventually, breathe — all while leaving the mind completely in tact.
Sudden swings between laughter and tears happen often. It’s a symptom that attacks the brain’s nerve pathways responsible for emotional regulation.
“A lot of people that have the disease say they’re frustrated because they have no control over it,” said his wife, Peggy.
“But I think more people should laugh like that.”
Barrette’s mood flips again when asked about the reality of living with the disease for two decades. He pauses, searching for the words on the device, and the automated voice says, “My life completely changed.”
Parents to nine children, he and Peggy had planned to spend the rest of their lives running an organic beef farm in Staples, Ont. But as his condition deteriorated, that dream faded.
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Twelve years ago, they made the difficult decision to leave the farm behind and move to a single-level home in Leamington to accommodate his needs.
“I loved being a farmer,” he said.
“One morning I was feeding my beef cattle and I started to cry for a long time. When I opened my eyes, the cows were all huddled around me.”
About a year into his diagnosis, Barrette lost his voice.
He initially communicated by scribbling words on paper, but as the disease progressed, the strain of writing became too much and he adopted the iPad — his lifeline to the rest of the world.
When asked what people most often misunderstand about ALS, Barrette tapped out his response on the device: “I’m still George.”
Tears well up, and he begins to cry.
“We go through a lot of Kleenex here,” Peggy said as she blotted his tears with a tissue.
“When you take marriage vows, you say the words, but you have no idea what the future holds. We put a lot of faith in each other and put a lot of faith in God, because he’s got a plan that’s probably a mystery to us, but it’s OK. We’ll trust that it’s a good plan.”
The ALS Society of Canada estimates that around 4,000 Canadians currently live with the neurodegenerative disorder that progressively destroys the neurons responsible for muscle movement.
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Each year, 1,000 people will hear the same life-altering words as Barrette, and 80 per cent will die just two to three years after the diagnosis.
“It’s a horrendous illness,” said Dr. Michael Strong, the Windsor-born clinician-scientist who delivered Barrette’s diagnosis two decades ago.
“This becomes a passion to try and help these individuals.
“It’s very difficult to sit there and say to somebody, ‘Look, you’re going to die in three to four years, and we got nothing.’ I made my decision early on in my career that I’d never say I got nothing. I would say ‘We’re working on it. We’re doing the best we can.’”
With the rise of new technology and artificial intelligence, Strong — the Arthur J Hudson Chair in ALS research at the Schulich School of Medicine & Dentistry — said the last decade has seen exciting breakthroughs.
Recently, a research team at Western University, led by Strong, discovered a promising avenue in the search for a cure.
Every ALS patient has a protein called TDP-43, which forms toxic clumps in cells, causing them to die. His team found that a fragment of another protein, named NF242, can help reduce the toxicity of TDP-43.
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This discovery has encouraging potential for reducing, or even reversing, the effects of the degenerative disease, said Strong. However, human clinical trials could still be years away.
Managing the challenges of ALS also places financial strain on the families, said Sharon Colman, co-president of the Windsor-Essex County ALS Society.
The non-profit organization currently supports 21 men and 15 women living with ALS in Windsor-Essex and Chatham-Kent.
“With the events that we do, the financial backing can make a difference in the life of someone living with ALS,” said Colman.
“Even if it’s as simple as providing a communication device. That’s going to make a difference in their life. It may not change the outcome, but it will change a bit of the journey.”
A power wheelchair, for instance, can cost about $26,000, she said. The organization has helped Barrette secure four mobility devices since his diagnosis.
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For the past 20 years, the organization has held an ALS fundraiser walk to help support families, as well as Strong’s research.
With the exception of one year, Barrette has participated in every walk surrounded by a large group of family and friends.
“We have the biggest gang,” he said.
Barrette hopes that by sharing his story, he can offer comfort to others facing the same diagnosis.
Two decades ago, his doctor mentioned knowing of just one person who had survived that long.
Hearing that “lifted me up,” he said.
Still, he adds, “I am at peace. I accept it.”
ALS Walk
The 2024 ALS walk takes place Sunday at 10 a.m. at Windsor’s Sandpoint Park (near Stop 26). Visit the Windsor-Essex County ALS Society website for more information.
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