Thank you everyone for your feedback. Of course I am getting a bipap and anything else that will ease the symptoms. And I look on the limited bright side of als. There is no unremitting pain. This may be a shitty disease but I don't suppose stomach cancer is a walk in the park. And the progression is gradual so I can make plans ahead of time rather than suddenly finding that I have to adjust to being blind or paralyzed. Its the other side of the coin that makes me wonder. I have been bedridden going on a year now. We tried a hoyer lift and geri chair. It was uncomfortable and tiring and the only benefit was that I could sit in anther part of the house..and do nothing. That really limits your world. What really fries me, though, is that I have lost all sense of privacy. I have gotten used to having someone wipe my ass, but I resent having my daily bowl movements discussed among my caregivers..sometimes right in front of me like I`was a potted plant even though I have asked them not to. I can no longer feed myself so mealtime is no longer a cNommunal event. Someone just stands and puts the things I can still swallow in my mouth here at my bed. I dare not try to carry on a conversation while trying to swallow. I can't scratch an itch; I can't pull the covers up when I'm cold; I can't move to reposition myself if I am uncomfortable. So far I can still make myself understood but am rapidly losing that ability. I am living and enjoying what I can but I can foresee a time when the effort to live and enjoy is just too damn difficult.[/QUOTE
I understand what you are feeling and I have similar thoughts. If you have a porch or patio you can enjoy some fresh air, or the warmth of the sun on your face, a pastel sunset, and a beautiful sunrise. I enjoy the unconditional love of a pet (actually 2 maltese which in my opinion are the most loving breed). You can enjoy a dvd movie that makes you happy, the smell of fresh flowers, the sound of birds singing, the laughter of children playing and so much more. I miss riding a motorcycle but I still have the memories of some great rides and that is more than most people have. There are lots of exciting things many PALS do as well including sky diving. When I was young and healthy I was to busy to enjoy the simpler pleasures of life. Maybe ALS is gods way of saying slow down and smell the flowers?