My Mom and my father-in-law were told years ago, at about the same time that they each had congestive heart failure..... that at anytime they had 85% chance of a heart attack or stroke at any time. You know, "Go home and get your affairs in order, there is nothing that can be done." Neither of them was strong enough for any surgeries.
One lived 15 more years, and the other 20. My mom didn't pass because of it, but something else. My FIL traveled the "world" to visit each of his nine children, one being in New Guinea. He picked pineapples off the trees in NG and sunbathed on the beach there. He took his final visit in Florida with one of his sons, where they had a wonderful big breakfast together, he went to take a shower, and he quickly, painlessly passed right then and there.
I said all this to say this.... Don't let a diagnosed of ANY KIND, even ALS make you despair. Everyone has something to bear unless you are of the very young. Say, "Oh boy, I have this" but carry on. The key is to eat well, get plenty of sleep, don't tax your strength with over-exercising and wait and see. Change your attitude to positive and surround the people around you with the blessing of your presence. You can live out your life that way or being a pain in the .... How do you want to be remembered?
Certainly we want a cure for my husband. I couldn't love him more, but he's out there doing things and people remark to me "Are you sure he has ALS?" He has quiet-times, but doesn't sulk. We treasure each day and love having this forum. We wish we could have a reunion with all of you. What a party that would be!