Making It Possible #6 – Brad Bilson
My ALS journey began somewhere off the coast of Twillingate, Newfoundland, looking for icebergs and puffins in early June 2024. It was quite a chilly day and my hands went numb. I could not even zip up my pants after using the washroom. Eventually, they recovered but I thought to myself, “That was weird.”
Playing guitar started to get more challenging in the fall of 2024 and I started noticing it was taking longer to warm up my hands. Flexibility is key to playing guitar and I was noticing my playing was becoming sloppy. It felt like I was going backwards in time 35 years.
By January of 2025, I could not deny something was changing, so I started to go to physio for hand exercises and mentioned this loss of strength to the chiropractor. My GP sent in a referral for nerve conduction testing looking for the classic carpal tunnel or a pinched ulnar nerve. Then I started getting the muscle twitches in my upper arms. By August 2025, I received the life-changing diagnosis that I already suspected. ALS.
As a registered nurse for 20 years, you get good at researching things so I was not entirely surprised when I received my ALS diagnosis from the neurologist. Nonetheless, it was still frightening and you start to fear the unknown. “How long do I have?” “Will I suffer?” “Will I be capable of the things I want to accomplish?” I guess one of the biggest things for me was not being able to play my guitars at the level I was used to. That is still hard to accept today. I still play in my band but on bass guitar now. And I’ll continue to do that as long as I can.
Life has certainly changed for me. I loved doing house renovations and building my model railroad but those things have become a challenge for me now. Nonetheless, we must accept what is beyond our control. I do find comfort that I am still working, walking, talking and feel blessed that I remain able to do so. Although I have not needed any equipment so far from the ALS Society of Alberta, it is a huge source of comfort that they have our backs when the time comes. The staff are extraordinary and always have our best interests at heart. Meeting Mikael Backlund and receiving a signed jersey from him was an absolutely amazing experience! He is truly an angel. This was all made possible by the ALS Society of Alberta and the relationships they have nurtured with our Alberta hockey clubs.
While still navigating the reality of ALS, my most treasured support has been my brothers, my co-workers and especially my partner Erin. I am definitely in good hands and I’m lucky to have them at my side. We have been making the most of our time so far by going to lots of concerts and AJHL hockey games. We will throw in a Flames or Wranglers game every now and then too. I am also looking forward to getting out camping with our trailer soon. Erin and I have also booked a trip to Whitehorse in July as well. I think it is important to have these outings and make memories every single day. I truly believe that having a positive outlook will also slow my progression. I find hope in that. I refuse to let ALS dictate terms. Someday, there will be a cure as research progresses. Until then, there will be frustration, anger, heartbreak and tears. Be kind to yourself and understand you are allowed to be selfish to feel that way sometimes. After all, we are still human.
