ALS patient and advocate Brian Parsons dies at 50

Brian Parsons, an Ottawa man with ALS who advocated for the rights of terminally-ill patients and their loved ones, has died.

Loved ones also remembering funny family man who loved to travel, the band U2

Brian Parsons lobbied the federal government to increase the EI compassionate care benefit. (CBC)

An Ottawa man with ALS, who fought for the rights of terminally ill patients and their families, has died.

Brian Parsons, 50, died in his sleep early Saturday morning at an Ottawa hospice facility, his wife Susan Robbins Parsons told CBC News. 

Parsons leaves behind an 18-year-old daughter, a 20-year-old son, and a "legacy of helping people" through his advocacy work, his wife said.

​After Parsons was diagnosed with ALS in 2013 — also called Lou Gehrig's Disease — he successfully lobbied to have the compassionate care benefit increased for family members who take time off work to care for a terminally-ill loved one. 

Brian Parsons leaves behind a wife and two children, Sean and Emily Parsons. (CBC)

"He wants the people who've been around him to continue on the fight," his wife said in tears. 

"He knew the financial burden that [a terminal illness] places on families. And anything that he could do to help relieve some of the stress in a very difficult time for people was very important to him."

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Put his private life in spotlight

ALS moves rapidly, killing nerve cells and paralyzing muscles, and patients typically die within two to five years of a diagnosis.

"He took such a devastating disease and put himself, his private life, and his physical changes, in front of the camera," said Lianne Johnston, the regional manager of ALS Canada.

"He showed people this was what he wanted to do to change the lives of all of those people suffering from ALS."

Along with Brian's advocacy work, his loved ones are remembering him as a funny family man, who loved to travel, the band U2, and lived by the "carpe diem" motto, which means to "seize the day."

Parsons covered his 'man cave' with photos 

After his diagnosis, Parsons started filling all the wall space in his basement with laminated photos of happy memories, including his first date with his wife, and pictures of him meeting U2 frontman Bono, Justin Trudeau and Peter Mansbridge. 

Susan Robbins Parsons says her husband started to fill the walls of their basement with photos from family vacations and his advocacy work, shortly after his diagnosis. (CBC)

"You can see in the room that we're in, the memories he has, it's all fun, it's all about living life to its fullest," said Sean Kealey, Parsons's long-time friend.

"And that's what ALS robbed most from him — his ability to live life to the fullest."

Parsons's family plans on participating in next Saturday's Ottawa Walk for ALS.

"I think my message is to please carry on, to spread the word, because Brian died far too young," his mother Glenys Parsons said.

"We must contribute money ... We must keep on with the walks, and we must keep this going until we have a cure."