Stephen-WinthropMy Story

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.