Hello Ms. Pie Hope this fines you in good spirits, sorry that i that i come with sad news on 8-24-11 his sun had set. He was getting those rigors, and since then the pain was so intense for him they up his meds, my brother was not wanting to be kept alive on any machine and had a DNR just wanted to go when it was his time, however he didn't want to feel any pain in his last days so he pretty much was in a sedated state, before passing in his sleep. I didn't have much friends on this site but i knew he had afew like yourself so i did want to update those that i can. Sorry i don't have alot of information to share with others about this disease. My brother was diagnose the end of last year and i was still learning, but i will continue to fight thanks so much for your concern and friendship i will do my best to keep in touch with you. I'll be walking in the ALS walk coming to our city october 16 already have a team put together in honor of him to help defeat this disease.