Sunday 5 October 2014

No.99. Another day with MND

I forgot to say that Chris's PIP application has been accepted, so that is one less thing to worry about. I shall get on and claim Carer's allowance now.

Chris knows a DJ on BBC Radio Cornwall called Duncan Warren. They got to know each other when Duncan was a DJ at The Barn Club in Penzance many years ago. He is going to compare the fashion show that is being held by two of Chris's cousins to raise money for MND and he would like to interview Chris on the radio. It will be great publicity for the show, plus raise loads of MND awareness too. I might see if I can get someone from the local branch of the MND to support him during the interview as he is worried his voice will run out of steam.

Chris seems to have lost his appetite lately. He went out for a couple of hours yesterday afternoon and came in for tea feeling quite hungry, but he struggled to eat it. I think the effort of eating is just too much sometimes. Just as the PEG being fitted came at the right time, then so will the the pump and night feeds, which will arrive on Wednesday. I'm a bit scared of using the pump correctly and Chris is a bit wary of sleeping with it working, but I guess, like the PEG, it will soon become part of his normal daily life.

I hate how MND infiltrates and consumes everything.