How Did I Get ALS?

“How?” and “Why?” were early questions I constantly asked myself. I had to ask myself because no one else was asking.

Tests were ordered and performed to see if I had the inherited version of ALS, and those tests came back negative. This was surprising to me because I believe that my grandfather passed away from incorrectly diagnosed Parkinson’s disease and undiagnosed Lou Gehrig’s disease.

A Lyme disease test that specifically checked for antibodies to Borrelia burgdorferi was done and that also came back negative. I was shocked since we had lost two of our employees at the ranch to ALS and ticks were prevalent around the property. This prompted additional research into the Lyme tests themselves where I learned that they don’t have the best track record for being accurate. I read of a much more accurate test that is not covered by insurance and is expensive. I have not yet done this test, but you can learn more about the research and test here:

Borrelia Bacteria and ALS Connection

So where do I stand now? That’s a great question that I still do not have, and may never have, an answer to. Originally, I convinced myself that my diagnosis was the result of Lyme disease, but I just can’t count out the number of brain traumas I have suffered over my lifetime. Years of football, getting bucked off of horses, and maybe a motorcycle accident all could have contributed to the onset. My first, and only officially diagnosed concussion came from getting knocked out in a basketball game when I was in 9th grade (I was called for a 3 second violation while unconscious?!?). Playing football in the 70’s, we practiced “form tackling” every day, which, in today’s game, would get you kicked out for targeting and fined in the NFL. Add in all the other crazy things I may or may not have done, and they all add up to a pretty fair argument that TBI (traumatic brain injury) could be a major contributing factor to my condition.

I’ve accepted that I will probably never have an answer to what triggered my ALS. I have also accepted the probable outcome. What I am not accepting of is letting Lou Gehrig’s disease take away my joy for life, today, tomorrow, or ever. I’ve been blessed with an incredible life thus far and I’m not ready to write the final chapter.

Since launching this blog, the outpouring of support along with the sharing of memories have solidified my resolve to keep sharing my joy and encouraging everyone else to find theirs as well – no matter the circumstances. On this note, one inspiring book that was recommended by a close friend that I recently read is Fight Back With Joy by Margaret Feinberg (more about this book in the “From the Library” tab).

My best friend reached out and shared this quote with me from Deion Sanders. I think it’s worth passing along.

And to end today’s blog post, here’s a song from Matthew West that I heard on my way to school this morning. It lifted my spirits and brightened my day. I hope it does the same for you.

Thank you all for your support. Take care and God bless.

Coach