I have to admit, sometimes it is lonely. There aren’t too many guys my age with ALS. It’s great hearing about other peoples experiences, but sometimes it is hard to identify with a 70 year old grandmother in Great Britain or a 55-year-old man from the East Coast. I can learn from them, but I often fall into the trap of thinking that nobody else has had to deal with this at such a young age
of course, that is not completely true. There are 20 somethings with ALS scattered around the world, but we are far and few between. Remarkably, one of the higher profile PALS over the past few years was a young man named Stephen Heywood. He was diagnosed when he was 29. In response, and with no medical background, Stephen’s brother Jamie quit his job and created a guerrilla-science research foundation. Finding a drug in time became Jamie’s all-consuming obsession. In two years, he built ALS Therapy Development Foundation from three people in a basement to a multimillion-dollar ALS lab facility. These are the people now of teaming with Augies Quest.
Stephen chose to keep on living his life as his family committed their lives to finding a cure. He went ahead and got married and didn’t let the disease control his life.
I can identify with that. That is why I am excited to see the movie So Much So Fast, which will be airing Tuesday, April 3 on PBS, Academy Award-nominated directors Steven Ascher and Jeanne Jordan capture the remarkable events set in motion when Stephen discovers he has ALS.
Here it will be on PBS at 8 p.m., but if you are interested in viewing it, check your local listings.
Indeed, with this disease, so much happens so fast. I have heard nothing but positive reviews about the documentary. It may give you glimpse into what life has been like for us