It is weird how this disease affects everyone in a different way, but it is usually when the chest muscles are affected that life expectancy really takes a dip. That is why we are so relieved that Chris's are still OK. I think I read somewhere that involuntary muscles are the last to be affected, but I'm not sure how true that is. The rest of Chris's body has been affected all over, with the fastest progress being with his voice and hands. We always forget that the tongue is a muscle too. I quite often have to ask him to repeat what he is saying now, sometimes his speech will be fairly clear other times much worse. It doesn't seem to frustrate him...not yet anyway.
It really did him good to see Duncan yesterday, remembering good times. Chris and I even first met each other at the Barn Club, though we didn't get together till 15 years later. He got a little melancholy after, but that didn't last, especially when he went out on his beloved farm for a couple of hours.
Chris is so brave, he never complains, though I know his heart is breaking over the future he will miss and he did admit once about worrying about me when he is gone. Mostly though we try to live each day as it comes, but it is hard not to get scared when the reality of MND is in your face every single day.
I think all those who have this awful disease, show us all what true courage really is. It is bad enough watching someone you love go through this let alone to have this hateful disease itself.
Hopefully we will raise a little more MND awareness with this radio interview and it will get a few more bums on seats at the fashion show. Every penny raised is one more step nearer finding a cure one day.
