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‘I am going to die, but I hope I’m one of the outliers': London, Ont. man staying optimistic after recent ALS diagnosis

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Matthew Brown will never forget the day he was given the terrible news.

“It was March 4 and it was the worst day of my life,” said Brown, 53 of London, Ont as he holds back tears. “Telling my kids was the worst thing”.

Brown has been diagnosed with ALS or Lou Gehrig’s disease. He is starting to lose the ability to use his hands, and for now, his legs still work.

“The long term prognosis isn’t great,” said Brown.

“Eighty per cent of people with ALS right now will die between two to five years, and the death is not pleasant.”

ALS takes away the motion in your entire body and leaves you totally paralyzed. The brain, and your eyes still work.

“That's unfortunately where I'm heading, so it sucks,” said Brown.

However despite the grim outlook, he’s staying positive and optimistic.

“Knowing that I am going to die, it's pretty scary,” he added. “But I'm pretty confident there's a lot of great studies and lots of smart people working on it from a technology side of this horrible disease and on the medical side.”

Matthew Brown of London, Ont has recently been diagnosed with ALS. Brown and his family will lead the Walk to End ALS on Saturday at Springbank Gardens. (Brent Lale/CTV News London)Brown believes if there was ever a time to get a disease with no cure, it’s now.

With a 25-year background in mechanical engineering, he’s hoping to use his knowledge to help as ALS sets in.

“There's technologies out there that I see they're helping abled people called exoskeleton robotics,” said Brown. “It's a robot that you strap to your arms and your legs, and the whole idea is that it is the muscle. The amount of strength in my arms is pretty bad, but I can move my arms to where I want them to go. So if I had this exoskeleton robotic thing on me it would actually be a benefit to me right now.”

Brown has quickly pivoted from feeling crushed, to looking ahead to his future.

“It’s fantastic that he has found those silver linings,” said Sheila Dorsch, regional manager for the ALS Society of Canada. “To have a really quick mind shift when your rug has just been pulled from you in Matthew's case and for him to be so forward thinking and willing to help is amazing. He's taking his lived experience and wanting to make a difference.”

Brown and his family will lead the Walk to End ALS on Saturday at Springbank Gardens in London, Ont.

“I think Matt has certainly been so brave to step forward into the public eye like this and offering an opportunity for his family and friends to feel that they're doing something,” said Dorsch.

The Walk to End ALS takes place Saturday June 25, 2022 at Springbank Gardens in London, Ont. (Brent Lale /CTV News London)The Walk has been going for 21 years in London and returns to an in-person event this year.

The goal is to raise $150,000 locally with 60 per cent of the funds going back into the community and 40 per cent going to research.

“It can cost $250,000 to live with ALS, according to Canadian research in 2015,” said Dorsch. “This calculation includes loss of income modifications to the home equipment and increased caregiver support.”

Brown has started to talk more openly with his teenage children about ALS and what his future looks like.

There have been some recent cases in the London region of men with ALS outliving the expected timeline.

Mario Vella of London lived 25 years after his initial diagnosis, while Steve Barber of St. Thomas, Ont. lived 16 years.

“I'm hopeful that I'm one of those outliers as well,” said Brown. 

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