Me and My ALS
My first inkling that something was wrong was in the fall of 2018. My voice had become gravelly and I seemed to constantly have phlegm in my mouth and throat. Then in the winter I began to limp slightly although I had no pain. I called my family doctor who suspected I might have suffered a slight stroke. So I went to the emergency department at Foothills; they quickly ruled out stroke and called in a neurologist. Right away, I knew. Of course the neurologists are very careful before issuing a diagnosis – they finally did so in August – but I knew.
Since then, my disease has followed the predictable path: as I write this in April of 2021, I have completely lost the ability to speak. I can drag myself a few steps with the help of a walker, but I have fallen a few times. I have trouble chewing and swallowing my food. My breathing and my upper body functions have so far been only slightly affected, but of course I realize it's a matter of when, not if, these too will fail me.
Reading this, you might think that I am miserable. In fact I'm not. I am 75 years old, and I have carried the ALS gene all my life, without knowing. For many people with this gene, the disease manifests itself at a much younger age. If my fairy godmother had said to me when I was 50 “Buddy, I'm sorry but you have ALS. But, you know what, I'll give you another 25 years so you can see your children grow up and establish their own families and careers, so you can enjoy your grandchildren,so you can travel the world with your wife who you love so much, so you can find enjoyment and recognition in all aspects of your life, how about it?” I would have gratefully accepted!
I am actually lucky that the covid restrictions have coincided with my illness: I can participate in the meetings of my fraternal organization and I can play duplicate bridge with my friends because these happen online. If there were no covid, I would be cut off from these activities.
My condition has been immeasurably alleviated by the support of my wife Meredith, my children Nycole and Roland and my granddaughters Jillian and Jessica. I would be remiss if I didn't especially thank the ALS Society of Alberta and the Alberta Home Care program. They have both been amazing, not only supplying me with things like a wheelchair, a walker, a transfer bench, an iPad with the “Predictable” program and many other aids, but doing so in a friendly and unbureaucratic manner – they never let me feel like I'm imposing, although I must be!
One photograph shows Meredith, me, Mikael Backlund, Roland and his partner Allison at a Flames game. I am very grateful to Mikael for making this possible,we had a great time. The other has me on Beechey Island in Nunavut, a stopover on our cruise through the Northwest Passage, which had always been a dream of mine.