We have no Lance Armstrong -- someone who battled the disease, won and went on to wage war on ALS. No ALS support group has ever had a guest speaker who used to have ALS. Everyone who's ever had ALS died from it unless something else got them first. In that way, ALS is sort of like old age, only faster and meaner. In simple terms, ALS progressively turns off the muscles. It can take months or years, but (barring some other complication) eventually it turns off the diaphram. Neurologists are some of the most highly educated and trained professionals in our society. ALS is up the neurologist's alley. Here's a thumbnail of the state of our knowledge about ALS: (1) we don't know how to diagnose ALS (there is no test; ALS is diagnosed only by ruling out everything else it could be); (2) we don't know what causes ALS; (3) we don't know how ALS works; (4) we don't know how to prevent ALS; (5) we don't know how to stop ALS; and (6) we don't know how to cure ALS. There was a study released in 2010 that even questions whether Lou Gehrig actually had Lou Gehrig's Disease. Awesome. The public knows little about ALS. This is a true story: I saw a doctor last week who had a medical degree hanging right there in her office. She read my medical history questionnaire, looked up and said "ALS -- I don't know what that is". It's no wonder the public knows so little -- there hasn't been reason for a bunch of research scientists to hold a "breakthrough" press conference in over a decade and a half, and that was to announce the FDA's approval of Rilutek, which FDA concluded offered two extra months of life to the average test patient.
I have been married to the love of my life and my best friend (same woman) for 23 years. I have three perfect kids, most of whom are teenagers and love me anyway. I worked for the same law firm for 25 years. I race bikes. I ski. In July 2010, I learned I have ALS. I'm one guy; it was too late to go to medical school and become a neurologist, but I wanted to do something to help. I came up with two goals: (1) help raise a little money to encourage the scientists to keep thinking, and to help people who have ALS get by; and (2) do a bit to help raise awareness about ALS. That's the reason this blog was hatched in 2011. Things have changed since then. I had to retire. My bikes became trikes. I took my last turns on skis. It has also been an unlikely adventure. I became a member of the United States Paralympic Cycling Team, which introduced us to amazing people and took us on a world tour. It has brought our family and our friends closer. This is a story for my family; and it's a story for you. Enjoy the ride. -- please participate by scrolling to the bottom of the 1 Day to Tomorrow page where you will find a guestbook to post comments, questions, threats and insults.
This story has more parts, so please read on . . . Cheers!