Wednesday 16 July 2014

No.31. MND is always there.

The physios came today (there`s two as one is a student). I`m not sure if it is the same everywhere, but they come and see Chris once a month. They brought another set of leg  braces with them. Chris has one set in his wellies and these other ones are for `best`. He finds them comfortable and they help to support his dropped feet which is good. They also get him to blow into this little gadget to check his lung function. I think that`s because later on his chest muscles will get weak and also choking might mean him inhaling something and he might get an infection. Thankfully at the moment his lungs are in good health. They also asked Chris how he was physically, he said he was the same, but I had to step in on that one. When he comes in from the yard now, he works his way around the room holding on to things, I joke that it is very `ape` like. Also, if I cuddle him when he is standing up, I can feel him start to collapse, so standing in one spot is getting harder. At least the mobility scooter is helping him get round the yard. They also brought a tap turner to help Chris with the taps,which he now finds tricky, but it didn`t fit our taps. I`m sure we can find something else that will work with ours though. They also showed Chris how to do the Heimlich maneuver on himself in case he chokes when I`m not around. That is a scary thought! On that point the speech therapist phoned and she said she would contact Chris`s GP to get the referral process started for the stomach peg. Reality bites again.

Gosh, MND just seems to have taken over our lives in so many ways. People tell me not to think too far ahead, to live in the moment, easier said than done, for me any way, I am one of life`s worriers. The people that come into our lives to help Chris, are a constant reminder that he has MND. The changes that are happening to him bit by bit remind us he has MND. Tomorrow he has to have a blood test because he has MND, on Friday we pick up our new car which we had to change because Chris has MND. I don`t even want to imagine what it is like for those MND warriors farther on in this journey.`

Thankfully Chris is making the most of his life and just getting on with it as best he can. He is much braver and stronger than I am. In spite of all this though and in spite of myself, Chris and I now spend some quality time together, just being normal, having fun and laughing a lot. Those moments are precious moments and we both look at life now in a different light. petty things don`t matter so much. So sitting with a glass of malt and watching rubbish TV, like we did tonight, well that was just a teeny bit of heaven.