Teaming up to take on ALS

Mark's story was included in Canada’s Rare Voices 2023.

_“In 2015, my family and I were vacationing in the Bahamas when my right bicep started twitching and wouldn’t stop. Around the same time, I had noticed that my right hand was getting weaker. My pinky was drifting away from my other fingers, and it was getting harder to properly grip a golf club. I had been retired from pro hockey for over 25 years at that point, but I’m an athlete and I know my body. Something wasn’t right.

When I finally got the ALS diagnosis in 2018, I had to make a decision. Was I going to retreat into depression, or was I going to stand up to the plate, be counted, and try to make a difference? I promised myself that I would stay positive right from the start and keep my sense of humour to the end. I won’t take any pity from anyone, and if anyone tries to treat me any differently than they did when I was healthy, I’ll show them the door. 

Like, a couple of years ago, before I was in a wheelchair, I was trying to turn off the TV and I fell because my legs had gotten so weak. I hit my head on the coffee table pretty hard. After that, one of my old teammates sent me his goalie helmet for me to wear while watching TV. That’s the kind of friend I want around. Once a teammate, always a teammate.

That was the same feeling that took hold in me when I heard about former Toronto Maple Leaf and Hall of Famer Börje Salming’s diagnosis. We may not have played many games together, but we’ll be teammates forever. I remember when I was drafted by the Leafs in 1978, I had my first three training camps with “the king.” He showed me this one trick called a can opener, which you’re not allowed to do today, and told me it would work great for me because I was only 175 pounds facing off against all these guys who were a lot bigger. I used that move for over 750 professional games. It was incredible. 

"That was the same feeling that took hold in me when I heard about former Toronto Maple Leaf and Hall of Famer Börje Salming’s diagnosis. We may not have played many games together, but we’ll be teammates forever."

When Börje got sick, I had already been involved with ALS advocacy and helped out a few other newly-diagnosed families. I understood right away that I needed to contact his family. I helped in every way I could. A lot of Zoom calls. And then when I saw him in person at the Hall of Fame weekend, not a lot of words needed to be said. The understanding between us was very powerful and the support from everyone was so overwhelming.

Since then, I’ve been all in on supporting others with ALS as much as I can. I run a support group with ALS Action Canada and I’m really trying to build some sort of playbook for the early part of the post-diagnosis journey. We need to preserve the wisdom of people living with ALS for the next cohort, because the career of an ALS mentor is pretty short. Börje could have been an incredible ALS mentor, for example, but he was gone just four months after his diagnosis. That playbook is my number one project going into 2023.

The other big thing I’m focusing on is access to treatment. We’re seeing criteria recommendations that would only cover PALS (people with ALS) who are within 18 months from symptom onset. But the big problem is that this is an illness that can take a couple of years to diagnose. So that in itself doesn’t make a lot of sense to me. There’s a study out of Calgary breaking it down and showing that only about seven percent of Canadians diagnosed with ALS would qualify for treatment under these rules. To me, that’s shocking. Real life simply isn’t as black and white as our regulatory bodies think it is.

So many of us are waiting for one of the hundreds of ALS trials worldwide to hit a home run. In that context, it’s so counterproductive to develop innovative new therapies and then have regulatory bodies not let anyone access them. Believe me, I’ll be going really hard at that one.

With ALS, it’s a game of inches. You fight all these fights and you hold on to as much as you can for as long as you can. Walk while your legs are strong, feed yourself while you can still hold a fork, use a computer to stay productive and connected. Today I’m still able to run my real estate business with my wife, but I know things are going to get harder and I know I’m going to need more care. More than anything, it’s hard on the family. It’s only me who was diagnosed with ALS, but it’s all of us who have to live with it."

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‍This content was supported by Amylyx Pharmaceuticals, Inc. This page was developed by Patient Voice, and the supporter did not influence the final article or editorial themes of this content.