I am honoured to be the Ambassador for the 2021 Betty’s Run for ALS, especially as it is the 25th anniversary. As the Ambassador, I want to be the voice for those that can’t speak, those that can’t leave their homes, and those that are struggling much worse than I am. I want to represent and speak for all of us in Alberta living with ALS that I have had the pleasure of meeting over the past year and a half.
When I reflect on my diagnosis, and how I have managed to deal with it in a positive mindset, I think back to when I was just 14 years old. I had a pack of matches with a saying written on it: ‘It doesn’t matter how long you live, but how’, and I have tried to live my life by that motto ever since. Finding the bright side of life is generally what I try to do – even when diagnosed with ALS in August of 2019, I made the doctor laugh by saying, “Doc, I find that hard to believe since I never played professional baseball.”
My diagnosis came in a roundabout way, after medical appointments that were intended to investigate a severe leaky heart valve. The astute doctor noticed a twitching in my arm, which led to a referral and the diagnosis of ALS in August of 2019. Looking at a potential diagnosis of months to live, my wife of 49 years Doreen and I lived life to the fullest – a family reunion, a trip to Orlando, and a trip to Vegas among other events.
The ALS Society of Alberta, and Michelle Savard in particular came into our lives then, offering support, mobility equipment required for travel, and advice on how to move forward. Then COVID-19 hit, and while our travel plans were curtailed, I was given the chance to participate in the ALS Society’s virtual support groups. Through these, I have met so many people that I am representing as ambassador – people with different backgrounds, and at different stages of the disease. Meeting these people and becoming friends with them online has given me a new perspective, and I am in awe of the determination and strength of all these Albertans.
As this year’s ambassador, I am passionate about educating society about how devastating this disease is, telling not only my story, but those of the 300+ Albertans currently living with it. About the incredible support we receive from the Society, and how imperative the funding of that is to us living with ALS. About the expense of equipment for day-to-day mobility and communications that we would have to cover personally for if not for the ALS Society providing it free of charge. And so importantly, about the rapid degeneration that occurs physically with ALS, and how we are desperate for research funding to find a cure.
Doreen and I have travelled the world, visited 68 countries, and have lived our lives trying to continuously learn new things and take on new challenges. ALS is certainly the biggest one I have faced, but I am focused on facing it with humour and positivity. I have never complained about all of the wonderful things that have happened to me, so I refuse to complain now about the bad. I thank you for your support of Betty’s Run in 2021 – it is needed so much for myself, and all those I am speaking on behalf of this year.
