Suze, with this particular disease there are no last minute reprieves. All one’s muscles keep on getting weaker (atrophy) and the base of the brain atrophies until it can’t keep going anymore. Time from disease onset to death seems to typically be about 10 to 15 years of steady deterioration. I think it’s a very cruel disease because one can see what is coming and be helpless to stop it. My friend can’t hold her head upright anymore without aids. Speech, swallowing, etc all become difficult. My friend is managing to stay positive throughout though I don’t know how she does it.