Tuesday 16 September 2014

No.88. Holidays and 'speech' days.


I'm amazed at how well Chris's PEG area has healed. Everyone was right, it is so easy once you get the hang of it. I haven't done the plunging thing yet as the nurse said to wait three weeks, but apart from that all is good. I think Chris's tummy must have been swollen too as the PEG clip doesn't seem as tight as it was. No wonder Chris is feeling more comfortable. He has been going outside for a couple of hours a day now. I think it keeps him sane.

I thought I'd see if we could get the wheelchair and mobility scooter in the car, plus Chloe and us, for the holiday. Well they went in, but we wouldn't fit any luggage in as well, so we settled on taking just the wheelchair. It's a bit like when the children were young in a way, you have the equipment to take and the planning of suitable places to go. We are going to Somerset for a week and I am hoping it will all be as flat as we hope Somerset is. If not Chloe and I are pretty good at pushing Chris up a hill in the wheelchair together. Many hands make light work. 

The MNDA have a campaign at the moment about improving the provision of communication tools for when the voice is lost. We have been told in Cornwall that we have access to the top of the range speech recognition aids. NHS England have chosen the south west as the first area for this to be rolled out. They should get on and do it in the rest of the country. I reckon they chose the south west as the amount of people with MND would be less and therefore cost less. There is quite a wait to be assessed so Chris has been put forward for an assessment now, even though he is still understandable at the moment. Someone comes down from Devon to do it.

In the evenings I do have trouble sometimes understanding what Chris is saying, it is always worse when he is tired. I am dreading the day when he can't talk anymore. He is more fortunate than some in that he will have access to the right equipment, but it can never be the same. Conversation is instant and in the moment, there has to be some delay, even with the best of technology. MND steals the very things that make us function as human beings, the ability to walk, talk, eat, even breathe eventually. Mother Nature must have been having a really bad day when she decided to dump this bloody awful disease on the human race.