How am I still alive after 22 years with ALS?
It was March 2000 when ALS reared its ugly head and entered my life. I noticed some numbness that was originally diagnosed as Carpal Tunnel Syndrome (CTS). However, a visit to a neurologist "thought" I might have ALS. I had heard of Lou Gehrig's disease and knew the implications of the diagnosis. I was told most people succumb to the disease within two to five years.
At the onset of being told that I had ALS, I made a conscious decision to meet it head on and do what I could to help find a cause, treatment or cure. From 2001 to 2004, I made myself available for every study and trial I could enter.
It has been 22 years since I dropped my guitar pick on an early spring night. Those familiar with ALS know that walking, talking and breathing unaided in that many years are very rare. Many people ask, "How do you do it?" The honest answer is that I don't know. My best guess is I have an ultra-slow progression. I also try to maintain a positive outlook and good attitude despite living with ALS.
Although I was excluded from drug trials after 2004, I still wanted to help in some way and to be involved with finding a cause, treatment or cure for this disease. I became aware that 7 walks were scheduled by a local ALS chapter and my question was “had anyone ever completed all 7 walks?” It turns out I was the first to complete all 7 walks. After all walks were complete, my team had raised $104,000. Since getting involved with the Golden West Chapter, my fundraising efforts have exceeded $500,000. I have also done a lot of public speaking to bring awareness to ALS. I am currently on the Napa Valley Ride Committee and I am an ALS Champion. I will continue my efforts in the fight!
