It gave me a new kind of importance and focus to living fulfilling happy life instead of goofing around (although I see goofing as an integral part of human life too) when I realized that there's a really high chance of getting ALS in twenty years.

Hal's attitude is a really admirable. However, for me, one of the key requirements of living in respirator is to ability to communicate with other people. Is living worth of it, if you are not able to communicate with outside world, and you know that you never will.

It's tough question, and in ALS, you have to make a decision when you still are able to communicate, when you still can nod or move your finger to say that I've had enough.