In the last year I have had two complete shifts in my universe. In January of 2010 I was diagnosed with ALS. I had an estimated 2-5 years to live, and most of them would be unpleasant. There was no cure, and realistically no hope for a cure.
The second shift came when I received my first infusion of NP001, an experimental drug for ALS from a company called Neuraltus Pharmaceuticals. Over night my ability to swallow improved drastically and after a month on the drug my condition continues to improve as does my quality of life.
I am a 44 year old male with a wife and a 6 year old son. I was living the most wonderful life imaginable. Often my wife and I would say to each other "Life is too good". We have fulfilling jobs and the ideal home life.
Around July 2010 I noticed difficulty with my speech. It gradually increased December 2010 I began to experience facial twitching. While looking in the mirror I noticed severe tongue fasciculations. After a short search on google, I knew what I had. ALS.
I am a medical physicist working in radiation oncology, i.e., treating cancer with radiation. I have been more or less physically active for most of my life. I've run the NYC marathon twice and was just getting back into running.
I guess I would call myself a workaholic with a tendency to push myself pretty hard at times but I have always enjoyed it.
My wife, son and I on vacation in St. Pete's Beach, Florida.
Feb 04, 2011
Aug 07, 2013