As I`ve written before, Chris was a man who loved his food, though you`d never know it to look at him. He was always skinny, he only weighed 9 1/2st when we got married and had reached the lofty weight of 10 1/2st pre MND. At diagnosis we were told he needed to gain weight to give him for a buffer for later on so I set about feeding him up on every kind of high fat food and he successfully gained another 7lb.
Before MND, in his words, he worked hard and lived to eat.
As the MND progresses we are grateful that we listened to the advice given and that Chris had a gastric PEG fitted within 4 months of his diagnosis. I think if he hadn`t he would be heading towards weight loss now. During the past couple of months the choking and problems with swallow have definitely progressed, but along with that has come a loss of appetite. That could be because he is pretty physically inactive now compared to before, it could be because so many of the foods he used to love he can no longer eat, mash potato can get pretty boring after a while, no matter how I dress it up, the same with soups. He has gone off cheese which he used to love too. Every day is a test of our imaginations to think of tasty foods that are easy for him to swallow.
Chris was always a hearty three meals a day man, he had a fried breakfast everyday, but he never ate between meals. It is hard for him to get his head around eating in between meals, he has always been a man of habit. He gets 500 calories over night now in his PEG feed and he can have up to two milkshakes a day at 300 calories each, all fortified with protein,vitamins and minerals, so it takes the pressure off eating three meals a day. The trouble is he feels he has to and although most of the time he does still get some enjoyment from eating, I can sometimes see him forcing down his meals. The dietician said he can have more supplementation via the PEG as time goes on and I am slowly convincing him that he can actually eat what he fancies, rather than what he needs and he has asked me to get him some chocolate for starters and some different ice creams too.
There is emphasis, quite rightly, about losing the voice with MND, but this can also be coupled with not being able to eat, because of the difficulty in swallowing and the risk of choking. There are many things that sadden me about this disease and I am sure there will be many more to come, but it really makes me sad that Chris can no longer enjoy food like he used too. This is a man who could eat for three let alone two. It is one of the more unkind elements of MND.
In spite of this he still keeps his spirits up and I am grateful for that at least.
MND is one bloody cruel disease, slowly stealing the life of those we love, bit by bit, relentlessly and without reprieve.
