Phil, boy do I know what you mean about the bulbar crap! I deal with it but it so controls what I can do, yesterday I went to go outside and go for a walk (well actually a roll, what do you call a walk in a power chair anyway?) and only got to the end of the lane before I had to go back to my room and flush and suction for a half an hour and after that I was too tired to go anywhere. So it isn't just a matter of having wheels (which I do appreciate) it is the feeling of worry of being away from where I am comfortable in being able to clear my throat.
The not eating or drinking is so hard especially when food and drink is everywhere, I mean everyone but me eats! And I don't care what I put into my tube, formula, or real food pureed, whatever, it is still tasteless and boring. And the not talking is no fun either.
I guess I am not really helping to cheer you up or giving you any words of wisdom but please know that you are not alone in this. Misery loves company so here I am buddy.
I sure wish we could go out and find a big whitetail buck or just sit around a campfire and swap hunting stories. Keep on fighting, my friend, us bulbarians need each other.
Barry