So sorry for your loss. Now at least he is free from all the constrictions of ALS. You will be with him again one day in the future. I realize this is my view but hopefully it will help you at this difficult and sad time for you and your family.
Just a note to tell you Rilutek is now available in Generic Riluzole. It is much less expensive.
It delays the progression some, especially for Bulbar. Be sure and take as directed.
I wanted to respond to another post of yours that was closed about time limits. You apologized for going online and searching. I think that is best way to educate yourself, don't feel bad about that.
OK that worked. PBP is considered a form of ALS. I read of a study where 87% develop full blown ALS. She may not have noticed eating problems since she is eating soft foods. I'll write more tomorrow. It's late.