Now in my third year living with ALS , I can honestly say it hasn’t been as bad as I anticipated. Yes, there have been many new challenges, both physical and emotional, but this journey has also given me pause to appreciate the day-to-day activities that I continue to do.
Initially, the biggest challenge with this diagnosis was the weight of the unknown. Being told you have a terminal disease, with no cure, is devastating, and not knowing how quickly your body will change or hold up only adds to that weight.
For me, the mental side of the diagnosis has been the most difficult to carry. It weaves itself into my day-to-day psyche in ways that are hard to explain. But the upside is, that over time, and with an array of support sources, those challenges are much easier to handle and the weight becomes more manageable.
One of the unexpected challenges has been witnessing how fast my social circles atrophy after being tagged with such a finite prognosis. It’s something no one warns you about. Don’t get me wrong, I get it! People don’t always know what to say or how to respond to my physical changes. The questions can feel heavy. What do you say? Are you in pain? What do you do all day now? How much worse will your condition get?
But here’s the thing, staying connected matters! Social connection is an essential
part of dealing with day-to-day hurdles - whether it’s reminiscing with friends about old times, catching up with family activities, or pontificating (with complete optimism) on how the Flames are gonna win the Cup next year. I make a conscious effort to stay in touch with the people who’ve been a part of my life because these connections are crucial and help me face each day with more strength.
I cringe to think what my life would be without the immense amount of support offered by family, friends, the ALS Society of Alberta, and the ALS medical community. I truly don’t know where I’d be without their unwavering support. Their love, concern, and expertise have carried me through more than they know, and I’m endlessly grateful.
As I look ahead, I’m feeling hopeful for all that is possible. Year four's highly anticipated activities include gearing up Betty’s Run for ALS, anticipating a long awaited visit from our family in London, and hitting bike trails on new e-wheels with my lovely wife. Who knows, may even have time to attack that Flames thing!