I began to experience muscle twitches in my left arm midway through 2011. But who hasn’t had a muscle twitch? I ignored those symptoms for over a year until they started to get worse, and I noticed that my left arm (and yes, I am left-handed) had grown weaker than my right. Many months of doctors’ visits and testing ensued, and in November 2013 I learned that I have ALS. I had known three other people who had succumbed to this disease, including a college classmate who died soon after our 20th Reunion. Words cannot describe what it’s like to tell your two teenaged kids that you have a disease with no known cure.
I now know that I have a slower progression of the disease than most ALS patients. This just gives me more time: more time to fight the disease, more time to participate in clinical trials, more time to raise money to help find a treatment or a cure, and more time to hopefully be a member of that first generation of ALS patients who were there when the major breakthroughs occurred.
Stephen sat down with an interviewer from the local access channel, described his childhood, his growing up, and his philosophies about living: https://vimeo.com/243782291