MP Mauril Bélanger's ALS diagnosis and what you should know about the disease

MP Mauril Bélanger was diagnosed with the neurodenerative disease ALS, commonly called Lou Gehrig's disease, and died within a year. Here are some facts to better understand the disease that currently affects as many as 3,000 Canadians.
MP Mauril Belanger dropped out of the race to become Speaker of the House of Commons last November following the federal election, citing voice problems from ALS. The longtime Liberal MP fought a brave battle with Lou Gehrig's disease, which affects about 3,000 Canadians. (Fred Chartrand/Canadian Press)

MP Mauril Bélanger sent a note to his colleagues last year announcing he had been diagnosed with amyotrophic lateral sclerosis (ALS), and that it was an incurable disease.

"Under the doctor's advice, I have decided to withdraw my candidacy for Speaker of the House of Commons," Bélanger wrote last November, just months before Prime Minister Justin Trudeau announced Tuesday that the Liberal member for Ottawa-Vanier had died.

Before his diagnosis, Bélanger had been suffering from mysterious voice problems. After a series of tests, a neurologist told the Ottawa-area MP he had ALS.

Bélanger was the first MP to use a voice generator on the job. He took advantage of the tool in January to introduce a private member's bill to make the English lyrics to O Canada gender neutral.

He also used the computerized voice from his iPad in March, to carry his remarks when he served as honorary Speaker. By that time, Bélanger needed assistance to walk. He thanked his colleagues for the "great privilege" before he was helped out of the Speaker's chair.

Read on to learn more about ALS:

What is ALS?

ALS Canada describes amyotrophic lateral sclerosis as a neurodegenerative disease whereby the nerve cells that control your muscles die. The "living wires" that connect the brain to the spinal cord and on to the muscles degenerate, the group says.

It's often called Lou Gehrig's disease, after the New York Yankees slugger who famously announced decades ago to a filled stadium that he had been diagnosed with the disease. The longtime baseball player died in 1941.

ALS can begin with muscle twitching and weakness in an arm or leg. The muscles we use to move, speak, eat and breathe can eventually be affected.   

What happens in ALS?

ALS most often occurs between ages 40 and 70, according to ALS Canada.

As the disease progresses, neurons in the brain stop sending messages to the muscles. The muscles gradually weaken and people find it more difficult to walk and move without support.

Those with the disease may lose the ability to breathe without the support of a ventilator.

The first word in amyotrophic lateral sclerosis (ALS) translates to "no muscle movement." (ALS Association)

The progressive disease isn't contagious, but is 100 per cent fatal, the ALS Association says.

Each person with ALS won't experience the same symptoms and the areas of the body that are affected also vary.

Most people with ALS die from respiratory failure, usually within three to five years after symptoms begin, according to the U.S. National Institute of Neurological Disorders and Stroke. 

About 10 per cent of those with ALS survive for 10 or more years.

What are the risk factors?

In most cases, the disease occurs with no clear risk factors.

About five to 10 per cent of cases are inherited, which is known as Familial ALS. The U.S. institute mentions two mutations.

How common is it?

The number of new diagnoses is estimated at two per 100,000 people per year. About 2,500 to 3,000 Canadians currently live with the disease, ALS Canada says.

How is it treated?

There is no cure or treatment to halt or reverse ALS.

There are treatments to relieve symptoms such as to reduce fatigue, ease muscle cramps and control spasticity to improve quality of life.

With a file from CBC's John Paul Tasker