I am over protective, I am a control freak, ask my kids, but I try very hard not be. When Chris is practising his Eye gaze I now set the computer infront of him on his table and I leave him to it rather than watch over him. He is doing just fine too, getting better at it everyday.
Chris has just spent 1/2 hour getting his overalls on to go outside. He needs to get out on the farm, on his scooter, to be useful in someway, even if it is just tidying up. I try not to worry as it is so cold, what if he falls and gets chilled, what if he hurts himself? but I have to resist those thoughts. His mental well being is as an important as his physical well being, in fact more so in some ways and that means he needs to get outside, that was his life prior to MND and it was a life he loved.
We were relieved to have a phone call from the wheel chair people in Cornwall yesterday. They said they had a cancellation for next Tuesday. Chris has his respiratory check up next Tuseday afternoon and the wheelchair appointment is in the morning in Truro too, so that fits in just perfectly. Let's hope it goes well. Getting an EPIOC wheel chair (indoor/outdoor electric), will give Chris back some independence too. We will be able to get out and about a bit when the weather gets warmer, shop together, silly stuff like that.
Some rays of sunshine break through this dark cloud of MND sometimes though. As I've said before, Chris loves his whisky, especially a good malt, but after that bad choking episode he settled for having whisky in Baileys as it was thicker and was less likely to cause choking. For Christmas I had bought him a box of three miniature malts. He was thrilled to discover that sipping from one of these bottles meant he could still drink a malt whisky. The small opening on the bottle means he can only take tiny sips and that means no choking too. He was a very happy man when he found that out. At least Chris has that small pleasure back again.
It is a year since Chris was prompted to go to the doctor about his limp. A late night walk up to the village to retrieve some escaped sheep had really frightened him as that annoying limp he had, well it had suddenly made his legs become like jelly and he said he had really struggled to walk back up the drive. I made an appointment the next day. When he came home from the GP and said he was being referred to a neurologist I just knew. I already knew a little about MND. Chris had been complaining about his hands feeling weak, he had been have really bad cramps and I had noticed his speech was a little slurry. A quick check on line confirmed my fears, though I didn't let on to Chris, not straight away anyway. I was so hoping I was wrong, let it be something else I thought, but all the tests that were lined up, well they were to rule out MND. We were grateful that Chris was diagnosed within three months, I know that is not always the case with everyone, but we were not grateful to hear that diagnosis though. How our lives have changed. We knew that day that life would never be the same, but until you have to live it you have no idea how it much that change will be, to be given a death sentence, but to not know how long, you quickly learn not think about that. It will drive you insane else and just spoil the here and now.
So MND progresses, Chris slowly loses his independence and is more dependent on me. I will do my best to be there for him every step of the way, but he is the one living this horror, fighting this battle and my heart breaks a little more for him everyday.
