What is ALS? The disease behind the ice bucket challenge

ALS is a non-contagious disease that affects approximately 3,000 Canadians. ALS Canada says two out of 100,000 people aged 18 and older are diagnosed each year.

Some cases of ALS are hereditary – about 10 per cent – where those affected have a particular gene that leads to the disease.

But ALS can affect anyone, anywhere, said Dr. David Taylor, director of research at the ALS Society of Canada, during an appearance on Global Toronto’s The Morning Show.

Worse still, researchers don’t yet know exactly what causes it.

“We’ve made really great strides in the research, though. And we were working with maybe one puzzle piece for many, many years and just in the last few years, we’ve pretty much discovered the rest of those puzzle pieces,” Taylor said.

“It’s just a matter of time before we put those together where can develop treatments to slow down the disease.”

There are no drugs that can slow down the onset of the disease so until then, Taylor said, treatments are focused on making life easier for people living with it.

“One of the greatest things we have is better care,” he said. “Clinics have come a long way with multidisciplinary care to help people live longer and better quality of lives.”

Symptoms can begin as weakness in a particular limb, Taylor said. But unlike other diseases where numbness is a symptom, there are not flare-ups with ALS — the numbness instead gets progressively worse and spreads throughout the body.

Some of the early symptoms, including tripping, dropping things or muscle cramping, can sometimes be mistaken for the common signs of aging.

Taylor said the “living wires” which connect a person’s brain to their muscles degenerate, leading to a loss of mobility, changes or complete loss of speech, and eventually the ability to breathe.