@njed I agree with everything you say Ed - 1000%. I had a very good friend who was diagnosed with ALS in his early 70s and lived for another dozen years. He had been a marathon runner and golfer and didn't drink and was in great shape. His decline was gradual but the last five years were truly horrible. I consider myself fortunate that all I have is PN. Have you ever tried IVIG treatments? Mayo recommended them last year but I am just now getting around to them here where I live.