Looking back, I realize my symptoms began a couple years before my diagnosis. I had set a goal to get fitter by running, following a structured training program. But no matter how hard I tried, I just wasn’t improving. Then, in the fall of 2023, new symptoms began to appear. My voice was getting hoarse, swallowing became difficult and I would sometimes have trouble catching my breath.
After almost a year of tests - blood, breathing, and just about every gastrointestinal test imaginable, losing 45 pounds and being constantly fatigued, I was finally referred to a neurologist. In October 2024, my wife Kate and I sat through the standard physical assessments.
The neurologist told us it “was probably ALS” but this was pending more tests to rule out other possibilities. We were completely shocked and devastated. I remember sitting together on a bench behind Rockyview Hospital crying and holding each other in disbelief.
While we waited for confirmation, my breathing got worse and I noticed a drop in my blood oxygen levels. We went to the ER on November 4, 2024. The very next day, I underwent an EMG (nerve test).
The diagnosis: Bulbar Onset ALS. I was 53 years old.
Cue another bout of shock and devastation. And then came the incredible hard task of telling our teenagers, Emma, 17 and Daniel, 15.
The first couple of months were a whirlwind of appointments, decisions, and emotion. I was prescribed a BiPAP to support my breathing at night, and a feeding tube was scheduled for early December. It was in mid November that we went to our first ALS clinic appointment and were introduced to the ALS Society of Alberta. A support group meeting was coming up, but I didn’t feel up to going, so Kate went without me. When she came back, she told me “You really should go next time. These are people who get it.” So I went. And although it was tough, I’m glad I did.
Whether online or in person, the tone of the meetings is very positive, “Living with ALS, not dying from it.” They brighten and lift my mood for days afterward. We always learn something too, like medication tips, home reno advice, travel hacks, and more.
The ALS Society of Alberta has also been invaluable when it comes to equipment. Through their Equipment Loan Program, we’ve received everything we’ve needed - gear that would otherwise be a huge financial burden.
If I could offer any advice to someone newly diagnosed, it would be to go to the support group meetings. Also accept any assistive technologies you are offered, including BiPAP and a feeding tube, if they’re recommended. And most importantly, be grateful and lean into the love of your caregiver. Their support will carry you more than you can imagine.
These days, I’m on BiPAP for about 22 hours per day after a bout with RSV earlier this year. It doesn’t bother me much, because I can’t talk anymore and I eat through a feeding tube, so wearing the mask isn’t much of an inconvenience. I’ve managed to put some weight back on thanks to the tube, but I continue to lose strength and dexterity in my hands.
But with all that, we still find ways to experience joy. We recently returned from a trip to Maui. I couldn’t snorkel like I used to love doing, but I found happiness in the little things like watching lizards scurry about on the lanai, feeling warm sand beneath my feet, sitting under the umbrella on the beach, and even managing a few quick dips in the ocean!
We’ve also learned to be grateful for what we have in our lives, and to hold on tight to the moments that matter: watching and cheering Daniel on at hockey, celebrating with Emma as she graduates high school, and just being together as a family. We’re also incredibly grateful for the generosity of the community around us. To the friends and family who contributed to our GoFundMe for our home renovations, to the ALS Society of Alberta, and to Mikael Backlund for hosting us at a Flames game (where we met him and I received a signed jersey), thank you for Making It Possible!
