Approximately 21 months ago, I was diagnosed with Bulbar Onset ALS. My journey started when I was trying to order a lettuce-wrapped burger for my wife and couldn't say the word “lettuce”. This prompted a visit to my doctor and then one to the stroke clinic at the local hospital where I was diagnosed with having had a stroke. Fast forward six months, I noticed sporadic worsening of my speech. This prompted another doctor’s visit, who then remarked “I don’t think you’ve had a stroke and it’s quite possible that you didn’t have a stroke six months ago”. After several tests to rule everything else out, I was diagnosed with ALS. I began my journey to learn more about ALS and what this would mean for me. I very quickly came to the realization that ALS is terminal. There currently is no cure.
With Bulbar-Onset ALS, I will first lose my ability to speak - this is already happening. Next, I will lose my ability to eat. While I am losing function with my speech, I am also losing my ability to use my arms.
I am grateful to the ALS Society of Alberta for helping me by supporting me with equipment loans and resources during my ALS journey. I wouldn’t be able to live my life to the fullest without access to this support (equipment loans, and resources). I’m starting to learn how to use eye-gaze technology to help me communicate. I use a cane and a walker right now to get around and I’m starting to think about a wheelchair. While I can still walk, I very soon won’t be able to use my cane or walker due to the loss of arm strength, so I’ll have to start using a wheelchair sometimes when out in the community for my safety.
I will be turning 60 years old this June 10th, and I have had a life jam packed full of different experiences, I’ve been fortunate to travel the world many times over, I’ve experienced a great love, I’ve done lots of things, so I am ready for what’s coming, I have made peace with it. I have no regrets, and I am going to live what little time I have left to the fullest.
I am not sitting around waiting for everything to be taken away from me, I am living my best life with what little time I have left. I am attending concerts, comedy shows, and hockey games. I have a restaurant bucket list, created by a community on Twitter that has rallied around my wife and I, of all the restaurants that I must eat at before I must switch to using a peg tube. I’ve been slowly eating my way through Edmonton! I’ll be spending weekends this summer at the lake with my wife, dog, and friends. It will most likely be my last summer.