What is ALS? The disease behind the ice bucket challenge

Watch above: Dr. David Taylor talks about the ice bucket challenge, a viral social media campaign to raise awareness and money for ALS research. 

TORONTO – Amyotrophic lateral sclerosis – better known as ALS or Lou Gehrig’s disease – has been making headlines recently after a challenge to raise awareness and money went viral.

But what is ALS?

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.

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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.”

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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.”

Watch: Local hockey players take on ALS ice bucket challenge for beloved coach. Jennifer Palisoc reports. 

What are the symptoms?

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.

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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.

Eighty per cent of people with ALS die within two to five years of diagnosis.

Cognitive Changes

The disease is generally considered a muscular disease, but ALS can cause cognitive changes which can result from brain cell degeneration in the frontal lobe.

The cognitive changes might include “apathy, restlessness, mood swings, loss of reasoning or problem-solving ability,” according to the ALS Society of Canada.

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Between 30 and 50 per cent of people with ALS experience cognitive dysfunction.

How is ALS diagnosed?

According to the ALS Society of Canada, there is no specific diagnostic test and doctors must rule out other diseases and conditions first.

Doctors will use a range of tests to try and diagnose ALS, including electromyography tests, blood tests, and MRIs.

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