About Me

Well, I am 52 years old, born smack in the middle of the post-WWII baby boom. I was diagnosed with ALS/Lou Gehrig's Disease in January, 2004, but I can think back to at least one full year before that and can say that my symptoms started way back then. However, if you really want to get technical, I think this was probably brewing as far back as ten years before that, with transitory stiffness here and there, unexplained choking episodes, clumsiness and tripping over who-knows-what, and even moments when my usually articulate speech would suddenly and inexplicably momentarily "hang up", stutter, and even totally tongue-tie me. And about 10 years ago, my primary doc diagnosed me with a late-onset asthma, and my dentist told me my jaw stiffnes was TMJ (tempro-manibular jaw disease). My increasing fatigue and muscle aches led me to ease up on my workouts; my sweating was attributed to menopause, as was my weight-gain when I stopped working out altogether. This all led to depression, when I was too tired and too overweight to do anything about it---- again, menopause was blamed. Finally, a few really bad falls, slurring speech, and a limp led me to a specialist, tests, another specialist, whom I told what I had self-diagnosed, and praying he would say "oh no, don't be silly". He didn't. Instead, he squirmed and told me I should hang out a shingle, that he wanted to rule out a few more things, any of which he prayed it would be. It wasn't. He never said the words-- he couldn't. I did. And the rest is history, as they say. I was told there is no cure, that research has been promising, which it really isn't. They have only theories about what causes it-- the environment, perhaps a virus, a genetic disposition. I will die. We all will, but I will die sooner than I thought I would. I will never have to worry about how life will be when I'm 80, I may not even live to 55. I gave up a teaching career and my independence. I have become a member of a community I never dreamed of joining -- the disabled and thus, a disenfranchised poorer class.