Since diagnosis in May his voice along with his swallow have deteriorated and since his last really bad choking episode I now puree all of his main meals. He has whatever we have, but just puréed. Now puréed food doesn't look that appetising, so I tell Chris to think of his meals as thick soups, today he had roast chicken 'soup', including roasties, stuffing, veg, gravy, the lot. Him being a sweetheart, after I asked him how it tasted and I do taste them first myself to make sure they are ok, he just smiled and said 'I'll get used to it'. I don't want him to get used to it, I want him to be back the way he was.
He can still eat sandwiches with soggy fillings and the crusts cut off, malt loaf, smooth yoghurt, ice cream, Readybrek, oh and yes Mars Bars. He still has choking episodes, even with the puree, but nowhere near as bad. I sometimes think meals are more of a chore for him now than a pleasurable experience. MND is cruel in so many ways.
At times now I find myself not understanding what Chris is saying too. The people are coming back in the new year to set up the Tobi i PC and software which will help him to talk in the future. Hopefully he will have got the hang of it by the time he eventually loses his voice, which is sadly inevitable.
Now though we are looking forward to Christmas and family celebrations. Chris may not be able to eat his Christmas dinner the way he used to, but he will have it, just in a different way. We will have lots of fun though and try and forget about this bloody awful disease for a while.
He apologised the other day for being a nuisance, Chris could never be that. I will gladly do whatever is necessary to make his life as happy and comfortable as it can be. I know if the roles were reversed, he would do the same.
It hasn't yet taken his lovely smile and sense of humour or his fortitude against this fearful thing called MND. How I wish we could turn the clock back, but we can't, so all we can do is make the most of everyday and hope that the future will bring a cure.
