Progression is a funny thing, it is very inconsistent. It is different with everyone I know. With Chris he started with the limp, but that seems to have stayed at the same level and other things have taken over. He says his hands are getting weaker and his swallow and voice are still deteriorating as is his balance.
What a strange disease this is, random in it's choice of victim and random in which parts it will affect first.
When Chris was first diagnosed we were on edge, waiting for something different to happen, would he be able to walk at all by Christmas? We still won't know the answer to that one till Christmas comes. It will be a different Christmas for sure if only from the change in Chris's diet and the foods he now can and cannot eat.
It will be a Christmas though where he will be spending the day with his family for once, how that irony sticks in my throat. I'd gladly swap this Christmas for all the past ones though, no matter how much I complained at the time. I'd gladly swap the huge meals he used to have, Christmas or otherwise, for the meals he will have to have this year or having to watch him choke on more and more foods. I'd gladly spend Christmas Eve without him as I always have before because of the farm, how I would get cross with him. I would always feel last on his list, but I would rather that than him have to spend this Christmas Eve night attached to a feed pump.
They say to be careful what you wish for, this was what I wanted, to have a husband who worked 'normal' hours let alone part time, to be able to spend lots of time together, to actually go to bed at the same time, all those things I wished for, but not this way, not ever. I'd gladly go back to before without a second thought it if meant Chris could be well again. This isn't fair, not on him, not on any of us.
Chris is not the only one to have his life changed forever by this dreadful disease and he certainly won't be the last. What MND has done to him will not get better, there is no cure, no real hope in the here and now. We could fill our life with anticipation and dread waiting for the next sign of deterioration, but we try not too. We are not super heroes nor are we brave, we are just coping the best way we can the same as everyone else in this position. We can't totally ignore this disease because it infiltrates every part of your life, it changes things for ever so we have to adapt in order to survive, but that doesn't mean we have to like it.
So I can try to ignore MND, but it's like that person on the coach that keeps kicking your seat, you can only ignore it for so long before you explode and you have to face it head on.
Wishing, ignoring, it changes nothing, we just have to accept it and get on with life. We can still laugh and have fun though and we are going to make sure this Christmas will be a wonderful one, in spite of everything and especially in spite of MND.
