Chris has also been having more choking attacks. It mainly happens when he tries to eat something he shouldn't, but who can blame him, this man who used to have such a large appetite and love his food so much. It took ages this lunch time to properly clear his airways, I always fear I am going to hurt him with so much back slapping. Tam was there too at the time and she cried, partly because it frightened her and partly because she said it was so unfair that Dad couldn't eat like the rest of us anymore. It really took it out of Chris too for a while, I think it scares him too. He is losing his appetite slowly, partly I suppose because his diet is more limited now and partly because eating can sometimes be scary. The problem is when he does have no appetite it really depresses him. Eating is such a primal thing and a source of pleasure for all of us and it is also an important part of human interaction too, something we all take so much for granted. Eating truly is a need in more ways than one.
I am glad Chris had the PEG fitted when he did and that he managed to get his weight up to a more normal level. He was always bordering on being underweight prior to MND and this extra 7lbs he has gained has given him a little buffer. The funny thing is it has only gone on around his tummy, the rest of him is still skinny, and the muscle wasting is starting to show on his arms and legs. He has grooves appearing along the muscles. It is most obvious in his hands, the wasting between his thumb and finger on both hands is very noticeable.
His balance is slowly getting worse too. I always thought it would happen that he wouldn't be able to walk as his legs would be too weak and I expect that will happen one day, but I never thought that he might not be able to walk because he can't hold himself upright any more. Imagine when you were a kid and you used to spin around to make yourself dizzy and you couldn't stay upright, well it is a little like that for him now. Once he gets going he can stay upright as long as he can hold onto something or has his walking stick.
Chris doesn't give up though, I know he will keep going for as long as he can. We all just get on with it, what else can we do? This is how it is now, so when he can't get up from a chair without wobbling, we laugh as I grab him and when he can't get his words out, we laugh about that too as I try to second guess him. That might sound weird, but we'd both rather laugh at this disease than cry because of it, for now anyway.
