ALS used to be something that happened to other people. Distant, unfamiliar people that I would never cross paths with.
Three years ago, when my muscles began to weaken and my body started to fail me, I got a glimpse of what ALS truly is - a disease that robs you of who you were and who you could have been. It takes parts of you, piece by piece, until it feels like there is nothing left but pain and sorrow.
When the doctors told me my diagnosis, the world shut off around me. “What does this mean? What will happen to my wife? What about my kids? What about my life? Why me?” These thoughts don’t fade away as my ALS progresses, they simply take a passenger seat as I attempt to be present and adjust to a new perspective.
Last year, I walked my daughter, my baby girl, into her new husband’s arms and prayed he would love her - even a fraction as much as I do. I watched my son embrace his new wife and heard him vow to love and protect her forever. I am so grateful to be a part of those moments. I see parts of myself in who my children have become, and it is an honor to watch their lives unfold.
Living with ALS has brought with it unpredictability and agony. It took over two years of testing to confirm my diagnosis. It’s true that it takes a village to raise a child, and it is equally true that it takes a community to manage ALS.
Something I have come to realize, is that although it is very much my own journey with ALS, it is also our family’s journey. My wife - my unexpected caregiver and absolute love of my life - has shown me more love, compassion, and strength, than anyone I have ever known. My children have found ways to support both me, and my wife during the darkest days of this disease.
The support from the ALS Society of Alberta and ALS Clinic has also been invaluable. They have been a cornerstone of our support network. Their commitment extends far beyond mere advice and the provision of essential equipment and tools.
Alberta Health Services’ (AHS) involvement and their representatives has brought additional relief and optimism into our lives. The therapists, with their refreshing energy and dedication, have taught us how to adapt our home and lifestyle to the evolving needs and challenges brought about by ALS.
Managing ALS requires more than medical treatment. Whether it's family or loved ones making sacrifices to provide care, doctors at the ALS Clinic monitoring every detail, or friends calling from near and far to express their love; each plays a crucial role in crafting a support network that sustains both the body and the spirit.
I worked my whole life with the goal of a restful retirement. This isn't the retirement I've worked for and dreamed of, but it is what it is, and I'm grateful for my wife, our family, and our circle of friends.