It was the MNDA AGM and conference yesterday and they had a live stream on line, so Chris and I thought we'd watch it. It was only a hour in the morning and a hour in the afternoon. I confess I thought I'd find it boring, but it wasn't at all. It was really interesting seeing who the out going and incoming Chairs were and hearing about the fundraising and finances, which tends to go over my head as I'm not a 'numbers' person, but it was explained really well. I think they said that after expenses were paid they were left with a reserve of around £3,000,000. That really puts the nearly £7,000,000 raised in just over a month by the Ice Bucket Challenges into perspective, that's for sure. They talked about how important it was to to take the time and careful consideration needed, on how they spend that money.
In the afternoon a Doctor, I confess I have forgotten his name, but I think he works in research, gave a talk about MND and he also talked about the possible causes and the study of genetics. It was really fascinating, and he used amazing computer graphics to show DNA and genes at work. A lot of it was hard to grasp, but I think we got the gist of it. They have discovered that something goes wrong in the genes, but they aren't sure why. The environmental factors have never really been properly collated and the MNDA are setting up a register involving all the neurological and specialist units in the UK, to study those kind of things. They explained that this is a mammoth task, but they had to get the foundations right.
Although I wanted a day without MND I knew that was never going to happen, but this was really interesting and hearing what goes on behind the scenes actually made us feel really positive.
Chris has been getting a little bored. He doesn't do a lot out side at the moment, he is waiting for the PEG hole to heal properly as there is always the risk of it getting dirty out on the farm, despite wearing overalls. At the moment the PEG oozing, even though it isn't much now, seems to make his shirts dirty. It seems to be healing OK. I think I read that you shouldn't cover the PEG up with a dressing or anything.
He popped over to his dad's to check the post and he came back smiling as he always does when he's been outside. My farmer boy needs to be out in the fresh air. I do worry how he will be later on. I think we will always have to make sure he gets out side if he can, even when he is completely reliant on a wheelchair. He is going to go stir crazy else, for so many reasons!
So, the reality is we can't escape MND, so I guess we had better get used to it. MND is with us for life.
