No.82. Always there.

We try very hard to not think about MND, to try and live normally, but as time goes on that is more and more impossible. There are the obvious changes in Chris and the reality of the things he can no longer do, plus everyday there seems to be visits or letters about visits or like yesterday, letters from the DWP about Chris`s PIP application. It seems never ending. I`ve said before that MND is all consuming and it really is.

Chris's letter from the DWP said that he had to have an assessment for PIP. I was sure his MND nurse said he wouldn't need one with a diagnosis of MND. I asked my 'MND' family for advice again and that prompted me to email Chris's neurologist and MND nurse. Fortunately Chris's MND nurse got back to me very quickly and she said all the necessary forms have been sent and that he shouldn't need an assessment and to ring them. I did and a very nice man on the phone went through Chris's records and found that those forms had just arrived, they must have crossed in the post I suppose and that the appointment would be cancelled and the forms would be dealt with within 48hrs, so that is hopefully, one less thing to worry about. I won't fully relax though until it is confirmed in writing.

I've also had to rethink Chris's meal regimes. Chris has always been skinny, but has an appetite of a horse. That's a farmer I guess. He still loves his food, so much so that he has almost spent most of day eating, so determined was he to eat the same amount, eating is so slow now, but since the PEG has gone in we've discovered that he can't eat the volume of food he did before. Too much and it has a way of escaping from around the PEG!! The PEG nurse advised little and often, so we are both getting our head around that. I think the small meals will be easier once the night time feeding starts. Such a lot to adjust to, but I'm sure it will be second nature soon. I have bought him looser, stretchier trousers too, such a shock to Chris, he was never a trackie bottom man.

We had a quite a few laughs yesterday too and Chris isn't so sore so thankfully it didn't hurt him so much!

Later today we are off up to the middle of Cornwall as the Cornwall branch of the MND association are having a lunch get together. It will be nice to meet other people in a similar position, though of course we wish no one had this awful disease. Chloe is coming with us as well as Chris's sister and brother-in-law and his dad. It will be quite a trek for us, but we are quite looking forward to it. It will be nice to get away from home for a while. 

Whatever we do though MND is always there.