For London, Ont., resident Matthew Brown, being diagnosed with Amyotrophic Lateral Sclerosis (ALS) was about the worst day of his life.
“The toughest part was actually telling my kids and my immediate family,” Brown said. “That was something I think I still dread, and I still tear up a little bit every time I think about it.”
Brown, 53, was diagnosed with ALS in early March of this year. He and his family are gearing up to lead the return of the annual Walk to End ALS London event at Springbank Gardens this Saturday.
Also known as Lou Gehrig’s disease, ALS is a progressive neuromuscular disease that causes gradual paralysis as the brain becomes unable to communicate with the muscles of the body by the degeneration of motor nerve cells. Over time, the muscles in the body break down and someone living with ALS will lose the ability to walk, talk, eat, and eventually breathe.
Brown said he is starting to lose the ability to use his hands.
In October 2021, Brown said he started to feel weak in his arms.
“I’ve been experiencing these muscles for stipulations for the past year and a half,” Brown said. “Later on in December, I heard ALS could be an option for what’s affecting me, but diagnosing ALS is difficult. It’s a process of elimination.”
Three months later, Brown was given his diagnosis.
“Christmas 2021 wasn’t very much fun in our house,” Brown explained. “My wife and I tried to make it the most fun we could, but we were the people harbouring the answer and didn’t really want to share until there was a conclusive answer.”
According to the ALS Society of Canada, the disease often affects people aged 40-65 and only five to 10 per cent of ALS cases are inherited by a family member.
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An estimated 3,000 Canadians are currently living with ALS and each year approximately 1,000 die from the disease in Canada.
There is no cure for ALS and only a few effective treatments.
“Eighty per cent of people with ALS die within two to five years of being diagnosed,” Brown said.
According to research provided by ALS Society of Canada, the disease is estimated to cost families between $150,000 and $250,000 due to loss of salary and full-time care.
“I’m the breadwinner at home,” Brown said. “I’ve done a pretty good job developing my own personal business in 2016. So obviously, when I did get that diagnosis, it was a bit of a shock, to say the least.”
Brown has a 25-year background in mechanical engineering — expertise he hopes he can use to help improve the lives of those living with ALS.
“I’ve done various things from mechanical design to programming to designing and conceptualizing very large, complex automated cells for manufacturing,” Brown said. “There’s some pretty amazing technology that’s developed over the last five years including things that are called exoskeleton robots.
“It’s a robot that’s strapped your arms and your legs and it gives you the muscle and helps guide you,” Brown said.
He explained how this technology would help him and the specific effects he’s feeling from ALS.
“I’m in a situation right now where my muscle mass has greatly decreased in my arms,” Brown said. “I still can use my arms and my hands, but the dexterity and the strength are probably about a fifth of where they used to be. So, if I did have this exoskeleton robotic on my arm, I feel that I could probably function day to day a lot better.”
While Brown said there is never a good time to receive any kind of crushing diagnosis, he remains optimistic and applauds the research being performed around the globe to help “stomp out ALS.”
“What this recently diagnosed family has overcome is incredible,” said Sheila Dorsch, London regional manager and community lead for the ALS Society of Canada.
Taking its first steps in London 21 years ago, Dorsch said the Walk is the largest fundraiser of ALS societies across Canada.
“The hybrid event this year will include the walk on Saturday and so far, Ontario has 20 successful walks in person happening,” Dorsch said. “We’re also continuing a virtual event to support those towns and cities that may not have a local event, and for participants who feel more comfortable taking part in their own backyard.”
Dorsch said that the goal of the event at Springbank Gardens is to raise $150,000 with 60 per cent of the funds going back to the community and 40 per cent going toward research.
“I think our walk will remind all of us that our human spirit and compassion for one another is just a beautiful gift to share,” Dorsch said. “This is a testament to our community and it’s offering purpose, celebration and feeling connected.”
Along with his family, Brown will also be marching with his team, Marching for Matt to Stomp ALS.
Visit the London Walk to End ALS website for more information.
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