This site has been strangely comforting for me - I say that because its awful to think that others have gone through what we did with dad but also makes you feel less alone. Because of how rare it is, I had no comparissons - we never knew when it would suddenly get worse, but that it did. And it was very very unfair - very cruel. But there are alot of people on here showing real spirit and fight just as dad did - he still used to make us laugh, although his humour did seem to become more child-like. I take my hat off to all of you. Our fight is sadly over now as dad passed away in January, but I'll never forget how he dealt with it in such a dignified and amazing way - just like everybody on here.
The day dad died I was playing hockey and my brother and mum were visiting him in hospital - he had pulled his peg tube out again. I rang my brother and he put the phone to dads ear - I told him about our match and he made the usual odd noises - as I was about to go, obviously unaware that it would be the last time I would speak to him, I told him I loved him and I could understand that he said it back - its always made me feel better to know the last thing we both said was I love you - always will dad xxx