It is indeed a terrible condition and I cannot criticise what he wanted to do because I don't know how I would feel if I had the same thing. However, it does seem a waste. The only other person I have heard of with this condition is an ex-Middlesbrough footballer (and other clubs) called Gary Parkinson who can only communicate by moving his eyes but he has a life. Among other things he watches DVDs of footballers and gives his views on their abilities. I cannot help but admire the courage and determination of such people. They make me feel very humble.