I almost didn't want to cross the finish line. It was very emotional, and quite poetic. I could see the finish line and, just like life, the end had come too soon.
From what we've been told and read, life expectancy for those with bulbar onset ALS is typically 1 to 3 years and I am 11 months into a diagnosis. So, I have a general window but I like to say,"we'll see." Everyone is different. I have met people who knew others with ALS who died within 7 months of diagnosis.
We didn't have time for invitations so we put out on social media that we were getting married, gave the date and the place, and said that people were welcome to join us. We rode our bikes up the mountain and had about 50 people ride with us. Another 50 to 75 drove up and met us at the wedding spot. It was amazing. After the wedding, when everyone had gone back down, it was just my son—who was my best man—my wife and I left. We were the last three.
Kyle Brown was able to use the late John Blais' Ironman number. Blais competed in Ironman in 2005 with ALS.During the race, I had some difficulties. By the time of the competition I was losing hand strength; the strength in my fingers and wrists. It makes it hard to tie or put on shoes, do zippers, open bottles, or use the brakes or shifters on my bike. But I had all my family there: my siblings, their kids, my parents, my wife and kids. And that helped.
But I almost didn't want to. It was very emotional, and quite poetic. I could see the finish line and, just like life, the end had come too soon. Physically, I feel pretty good. I'm still in way better shape than most people. I still train; I ride my bikes and I run. I am trying some experimental treatments, though part of me is still a little in denial about this disease.
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