I finally got an answer to my frequently asked question :how has Stephen Hawking managed to survive into his sixties in spite of his being completely paralysed and he was first diagnosed in his twenties? I went to Kings and saw Julia Johnston and Dr Burnham. Between them the answer was : after he nearly died of pneumonia some years ago, Hawking realised that people don't die of MND, but of ilnesses they are vulnerable to because of MND. such as chest infections leading to pneumonia. Chest inflection is risked by a person with MND eating and drinking when the muscles which control the swallow are weakened. He therefore cut out all risks and went nil by mouth, and takes all nutrition and fluids through a tube into his stomach [PEG]. The advice is that I do likewise, but have little tastes of things I like. The other thing Hawking did was have a trachioctomy to enable a breathing machine to help when his chest muscles gave up, but Dr Burnham said I should be ok for a long time with a breathing aid that is non invasive at night ,and as and when required when I am resting. Dr Burnham is in Professor Shaw and Al Chelabi's team, and when I said from my conversations with him I was confident there will be a cure within ten years she was fairly positive about that, saying they are making great strides in that direction. The way I see it, it's worth me adopting that regime of very little by mouth to try and hang in for the long term. If I can stand life without talking, eating and drinking, that is.