Hi Gadget,
I'm sorry to hear what's happening. Still, though we all will have our "I guess my time is up" in whatever manner it happens, it still sucks when that time comes.
I hope your doc is wrong. It happens very frequently. But you are right, there are worse ways to die. I don't want to be trite, but many of my ALS patients were grateful, not for the diagnosis, but for the time for preparation and to make choices on dying-on your terms. If ya gotta go, at least you have some control.
My mother died with ALS, four years after diagnosis. Her slant on things was "When I can't shop anymore, then it's time to go". A week after her last shopping trip, all five of us daughters flew in to say goodbye. When the last sister came in, she climbed into my mother's bed and told her jokes. My mom, though she no longer could talk, laughed and laughed, then took a couple of breaths, closed her eyes and died right then and there, in my sister's arms. May you be so lucky.
Make the most of it. Though most of us on CRVL will never meet you, we are here, cheering you on. Take your time and do what you can do. We'll all meet up with you eventually.
Ted
