At 57, ALS Action Canada Member Shawn lives in a small town in British Columbia’s northern Okanagan. He enjoys the beauty of the region and remains focused on living life to the fullest, despite an ALS diagnosis that arrived after a long and uncertain journey.
Shawn first noticed something was wrong in May 2022 when he developed a weak pinch grip in his left hand. What followed was more than a year of appointments, referrals, tests, and alternative explanations. Doctors initially suspected a vitamin deficiency, then thoracic outlet syndrome, and later carpal tunnel syndrome. Even surgery failed to restore his strength.
It wasn’t until September 2023, after multiple referrals and diagnostic dead ends, that Shawn received the answer he had been searching for at the ALS Clinic in Vancouver.
“I finally got THE diagnosis.”
Since then, Shawn has learned that he is what clinicians describe as a slow progressor. While this has allowed him to maintain much of his independence, it has also presented unique challenges. “The slow loss has been a little harder to accept,” he says. “I will have several good days and feel almost normal, then overdo it and my arms turn to jello.”
For someone accustomed to helping others and staying active, learning to slow down has required a significant adjustment. “I’ve really had to purposefully tell myself to stop and rest a lot. It’s not easy when you’re used to getting things done.”
Accepting help has been equally difficult, and as Shawn says, “As a person who helps everyone else, it’s a challenge to open yourself up to that perceived weakness.”
Yet Shawn refuses to let ALS define him. To him, courage means continuing forward, even when the path changes. “Courage to me is to not give up. Things may get tough, but I have a beautiful life planned and I’m not going to let this stop that. It may look a little different, but we’re still going forward.”
That determination is fueled by hope – not passive hope, but hope grounded in action. “Hope for me is following the science, understanding it as best I can, and getting involved.”
Shawn has become an advocate, lending his voice to efforts that advance research, improve care, and raise awareness of ALS. “Being an advocate helps bring a voice to our cause and brings change.”
His outlook is rooted in possibility. “Being positive opens me to possibilities. Open to the next trial, observational study, or the next promising drug in the pipeline. Being negative only closes doors.”
While ALS is part of Shawn’s story, it is not the whole story. “ALS is only a part of me.” Today, he continues to focus on what he can do, rather than what he cannot. “I still do everything I CAN, while I still can.”
And his message to others is simple but powerful: “Life is so precious. It could end tomorrow for any of us. Get out and live it. Focus on quality – we don’t know the quantity left.”
