My name is Tony Conway, and I have ALS.
If we're going by official titles, then I should say that I have Amyotrophic lateral sclerosis, or Lou Gehrig's Disease for you baseball aficionados.
Folks at Johns Hopkins Hospital are still completing some tests, but Dr. Rothstein was pretty confident in his diagnosis. My holding out hope for a different diagnosis would seem like wasted energy at this point.
It's hardly surprising that a blog address "ihaveals" should be available; I can't imagine too many people being prepared to write about this, but I see some value. It's helpful to me -- a release -- to write about the things going through my mind, and, who knows, maybe someone else out there who suffers from ALS will find it valuable.
Anyway, today is day two of my Rilutek/Riluzole regimen. I'm told it's the only FDA approved drug out there for ALS. Dr. Rothstein was abundantly clear: this isn't a cure, it just slows the process down.