(Just woken and the funds are £961,332.51. That's flipping amazing !!!!!)
Chris was still low yesterday morning, he said he felt nauseous too, but he made himself eat breakfast. It was pouring down with rain and I know he wanted to go out and do some work, but I suggested we go to PC World to have a look at laptops. It would get us both out of the house for a couple of hours. They didn`t have much there really, but it gave us an idea of what was available. On the way home the sun came out for a while and after Chris had rested he was itching to get back out on the farm.
Chris has to have a blood test today before his PEG surgery tomorrow to check how his blood clots I think. I was interested to read one of the MND scientists say they were researching when is the best time to fit a PEG and in which way. Just talk to the gastro surgeons, speech therapists and dieticians. Chris went this early because he was advised to by them. The gastro surgeon told us he wished everyone came this early. Surely it can't take too much to survey the professionals that deal with this on a regular basis.
When we got back I found out that the IBC fund had reached £700,000, that was unbelievable. Then our farrier left a post on my Face Book page to congratulate me on our picture being on the MNDA home page. I had no idea what he was talking about, so I had a look, there at the top were three scrolling pictures, Benedict Cumberbatch, Jose Mourinho and ours !! I haven`t the foggiest why they picked ours, but honoured all the same. There are others who are more deserving and have been raising funds and awareness for years, maybe our photo just fitted. Life is full of surprises and not all of them bad.
I think it is quite possible that the IBC fund could reach a million. That will mean so much more research and also training young people to be scientists to continue this work. Maybe there will be some money in the advertising budget to do a TV ad for the `Bake it` days next June. We could call it "The worlds biggest `Bake it` morning " and yes, if you get that, it was intended. Seriously though I guess research and support at ground level should really take priority.
I felt my own mood slipping again last night. I think I have thrown myself into trying to spread awareness and writing this blog as a way of dealing with all of this. I feel so helpless watching this disease gradually take hold of my husband. It really does break my heart to see this happening to him. I know I am not the only one going through this, but each of our pain is our own. It helps to know there are others who understand, but in the moment it can feel very lonely. I have no idea if Chris 's progression is fast or slow, we haven't asked, but he has gone from just a limp in February, to his speech, hands and swallow being affected. He can't walk very far, needs his food puréed, chokes easily, loses his balance when he stands up, can no longer drive the car and now finds writing hard. That doesn't seem slow to me, so much for Riluzole. Chris is really the strong one through all of this, he can't wait to get out and do some work outside, he tries his best to just get on with things and he also seems to accept these changes to his body without complaint. I know it frustrates him at times, because of the things he can no longer do, but he doesn't get angry, just a bit sad sometimes. Chris has true courage and he will always be the hero in my eyes.
