I’m 63, and my ALS symptoms began in 2023. My gait and balance were suddenly out of whack to the point where I needed a cane. My husband was worried it might be a stroke as my symptoms came out of nowhere. We originally thought it could be related to a stomach infection, but even after surgery resolved that, the balance issues persisted. That’s when we knew something else was going on.
I didn’t even realize I had a foot drop at the time. It was my eldest daughter (who had seen clonus in a loved one) who noticed the signs while helping me stretch. She urged me to bring it up with my physiotherapist. The moment I mentioned clonus, things moved fast. I was sent to the emergency department at Foothills Hospital, where an ER doctor saw the urgency and referred me to a neurologist. That was the start of a long process of testing: spinal taps, movement clinics, physiotherapy, and finally, an EMG.
Almost exactly a year later, on June 28, 2024, I was officially diagnosed with ALS.
If there’s one thing I’ve learned, it’s this: trust your gut. If something feels wrong, push for answers. If we hadn’t kept asking questions, who knows how long it would’ve taken for me to get a diagnosis?
That year leading up to my diagnosis was tough. I resisted change, especially around my mobility. I used a cane, but I flat-out refused to switch to a walker, even when my family and doctors encouraged me. I was afraid that accepting more help meant admitting something was seriously wrong.
It took falling and breaking my right arm (yes, I admit that this was not my smartest moment!) to finally understand how important mobility aids really are.
Now, I can’t walk unaided. I use canes and walkers indoors, and a stairlift and bidet help with daily tasks. I can’t dress myself, and my left arm and hand are no longer functional. I’m currently on riluzole, gabapentin, and baclofen. Through it all, the ALS Society of Alberta and the South Health Campus clinic have been amazing in making this journey more manageable in truly practical ways.
And even though ALS absolutely sucks, we’ve met some truly wonderful people. And yes, we still laugh, sometimes a lot, even about some of my limitations.
Our youngest daughter came up with a brilliant idea, to create a family “corporate” structure where everyone has a job. It sounds funny, but it works:
Daughter 1 and her husband, My Directors of Family handle all things family logistics, like dinners, coordination, and care by helping me with stretching and massages.
Daughter 2 is my Director of Fun. She planned a trip to Disneyland and organized a family trip to BC in June. We were going to be road tripping as a family as my husband was lucky enough to obtain a BraunAbility modified Grand Caravan from a family friends estate. Which gave me more freedom to get out and have fun by providing wheelchair via electric ramp. She also handles my shower and hygiene routines.
Unfortunately we were unable to travel in June due to a health complication and I was hospitalized. As a Family we pivoted and pushed back the vacation and we will find other ways to enjoy each others company and celebrate the days and time we do have together regardless. My Grandson sent me a video to make me feel better and said “ALS is stupid Nana, I love you!”
My grandchild is my Director or comedic relief. He brings belly laughs daily, especially when he copies “Nana” walking with my cane and walker saying “I’m Nana” My daughter even got us a book to read together: Why My Grandma Is So Brave (a book about ALS for kids). It’s one of our favorites.
And my husband? My Darling Director of Danger Detection. Well, he has the hardest job of all, he’s on duty 24/7. He is responsible for home safety, navigating “danger zones,” and keeping everything running. His love and care are constant, and we all depend on him.
Everyone takes their role seriously, and we laugh a lot about it, which keeps our spirits high. My Advice? Don’t forget to laugh. Life is still funny. Don’t let ALS steal your smile. Enjoy your family. Trust them. You can’t go wrong.