"Sorry for the bad news. I lost my closest uncle to ALS about 7 years ago. He got it at age 47, but he lasted 9 years. The last 4 he was confined to a bed, but he really wanted to live and see his grand children grow up some.He used a computer controlled with his eyes to comunicate. It was slow but it worked. There is a lot of help out there if you look for it. Best Wishes."

9 Years? Wow. I have to believe that is highly unusual at any age. I think 2 years is the average.