On Lou Gehrig Day, the ALS community is calling for more action and more research. About 6,000 Canadians are living with ALS, including roughly 600 here in Quebec.
Each year, around 1,000 people in this country die from the disease — underscoring just how urgent the need is for progress.
“ALS is a progressive degenerative disease where once it affects your breathing, it’s fatal. It starts with something very simple and innocuous, like a weak hand or a weak foot or slurred speech, without pain, and spreads to involve all the muscles of your body,” explained Angela Genge, the director of the ALS program at McGill and Director of the Centre for Innovative Medicine and Clinical Research at the MUHC-RI.
“My left index finger was curling first. Obviously, now all my fingers are curled, but it was definitely in that one. I was walking really weirdly. So a lot of, like, hobbling. I couldn’t run. I couldn’t jump. So definitely that was a really big issue,” said Amanda Tam, who was just days away from turning 21 when she was diagnosed. Now 25, she says getting answers — even difficult ones — brought some relief.
“My main concern really, not knowing what was wrong with me. So having the diagnosis of ALS, it sucked. But I was just happy that they knew what my disease was, I guess,” said Tam.
Eighty-seven years after the diagnosis of New York baseball player Lou Gehrig, ALS remains fatal — with eight in ten people dying within five years.
“We support families at every stage of the disease. Not only the person who’s afflicted but also their caregivers and their kids. We provide a variety of services and programs at every stage. Everyone faces the disease differently, everybody progresses differently and everybody wants to be supported differently,” said Claudine Cook, the executive director of the ALS Society of Quebec.
Genge adds, “The majority are between 40 and 60, and there’s a preponderance of men. So men more frequently than women and in that middle age group. So what we say is people in the prime of their lives, they usually have full-time jobs, full lives when it starts.”
A portrait that looks very different from Amanda’s in her mid-20s. That’s why she chose to share her story online — hoping to raise awareness and make an impact beyond her diagnosis.
“I feel like I’ve done more with this disease than I would have if I didn’t have any less. I feel like I’m making more of an impact in the world. Whereas if I didn’t have ALS, I would have just been working and not really being of meaning,” Tam explained.
June marks ALS Awareness Month. Advocates say people can help by volunteering, donating, or taking part in upcoming ALS Quebec events across the province.
“We have several walks across the province, one in Pointe-Claire this Sunday and one in Montreal next Saturday. Across the province we also have a cycling event, we have a golf event, so we have something for everyone, and every donation helps, and also volunteering,” said Cook.
Genge added, “This is how we cured AIDS. We cured it through everybody’s donations. This is how they cured cystic fibrosis. It was a foundation that raised money for cystic fibrosis that found the first real treatments. Now we want to do it with ALS.”
