Robin, as a CALS, I wanted my husband with me as long as possible. At some point, I finally realized that I needed to let him drive the train. We had some crazy adventures during his progression, but we had means to do what he was up for, and I was at a point in life where I could devote myself to him 24/7. Only you can determine what quality of life means to you, and the people around you will determine how much support you have. Even knowing that he was dying, my husband wrung whatever he could out of every day for almost five years. As tired as I was, some of our adventures were the absolute high points of my life. Then one day he knew that it was over and he let me know that it was time to remove the vent. YOU get to chose. If what you are giving up on is a cure, then I get it. If you can adjust your expectations and find new ways to enjoy the time you have at each stage of your progression, then you may have much longer left than you think. I think acceptance was important to his ability to shift his expectations, but this was a guy who mastered the art of stupid wheelchair tricks only after he finally got into that chair and realized how much freedom he reclaimed in that act.