No.67. Low mood, fear and great big smiles.

Yesterday Chris was in a low mood for a while, I think it was 'post sale' blues and the the sudden reality of it all, he was still very tired too. I adapted the usual Sunday roast for him, just pureeing the meat with gravy and giving him mash instead of roast potatoes. He uses the adapted cutlery without question now too.

Chris also said he was having trouble writing. He has always been very meticulous about keeping a diary, especially for recording work stuff. I think he would benefit from a laptop or tablet. He isn't at all computer literate, but I think he needs to learn. It will be his main communication tool one day.

I did get very cross with Chris yesterday. He went into a pen of four heifers to worm them, all by himself, a definite no,no ! He said they were OK, but if he should have fallen and they had been spooked, well it doesn't bear thinking about. 

I seem to be very tired lately, can you get tired from worrying? I spend most of my time worrying when he is outside and with good reason it seems. Chris can be a bit reckless sometimes.

I've heard that some people are getting irritated by the Ice Bucket Challenges filling their time lines. One journalist even wrote yesterday that they were 'Vomit inducing'. I think she was complaining about certain celebrities doing the challenges for their own gain. Well do you know what? I couldn't care less about that. As long as they mention MND/ALS and where to donate ,they can show off all they like. 

When I see challenges from ordinary people on my time lines, remembering someone who has MND or has been lost to it, my heart breaks a little bit more for them. It is also them shouting out to say 'Look, we also lost someone to this awful disease' almost like a collective, online memorial. For once their voice is being heard beyond their own community and family. I find it very moving .

This morning the funds raised on the Just giving page set up by two MND volunteers has just topped £549,000!! That is beyond incredible. They set a target of £500 in the beginning, this has gone beyond anyone's widest imaginings.

So.. these Ice Bucket Challenges may be irritating some, but for those of us affected by MND, it has given us one hell of a reason to smile. The hope of there being a cure being found one day is becoming a real possibility, maybe not for those who have it now, but certainly for future generations.

MND, you can run and you can hide, but we have the world on our side now. We are no longer alone.