Feeling grateful.
I thank the Lord everyday for Chris's sense of humour and long may it last.
After working outside for a couple of hours the other day, he came in so tired that he couldn't stop yawning. Later I watched him try and get up off the sofa. I asked him if he needed help and he said no and then he put so much effort into actually rising that he left himself standing in a skiing position unable to move, we both looked at each other and just laughed. I helped him to straighten up and then he fumbled his way around by holding on to the sofa and then me, he was still smiling and laughing. He then spoke to me and did his best, unintentional, 'Grandad from "Only fools and horses"' impression and we laughed again. If MND could be cured by laughter and good spirits then Chris would most definitely be onto a winner.............If only.
Feeling scared.
I wote the above a few days ago. Since the above episode Chris has been a lot more tired, unbalanced and his speech is more slurry. When he went out onto the farm on Thursday he did some jobs he probably shouldn't have done and he got quite cold. It really took it out of him. I think he is starting to acknowledge that this disease is limiting what he is able to do and he is slowly getting his head out of the sand. He admitted that it makes him feel really miserable at times, which is perfectly understandable.
Feeling scared.
I wote the above a few days ago. Since the above episode Chris has been a lot more tired, unbalanced and his speech is more slurry. When he went out onto the farm on Thursday he did some jobs he probably shouldn't have done and he got quite cold. It really took it out of him. I think he is starting to acknowledge that this disease is limiting what he is able to do and he is slowly getting his head out of the sand. He admitted that it makes him feel really miserable at times, which is perfectly understandable.
We volunteered to help out at the church Christmas bazaar on Saturday, we did a small stall together, Chris took his walker/seat so he could sit down comfortably. It was nice for him to catch up with people he hasn't seen for a while, even if it was obvious some people felt a little awkward and I suppose that is normal. I think Chris always feels a little embarrassed in these kinds of social situations. It also hit home I think, how this time last year, apart from a slight limp, all seemed normal. He was really tired during the evening, but he fancied a Mars Bar later which he really enjoyed and it went down easily.
We are trying to make this Christmas really special and I hope there will be many more, but just lately I have found myself getting a little scared. Sometimes I think Chris's MND is progressing quite slowly, then I see a little more progression and it scares me. It is the unknown with this disease, plus the inevitability about it. Chris still takes the Riluzole, which is supposed to slow things down by about three months, I'm not entirely sure it has made that much difference, but I guess we will never really know.
I hate this awful disease, a cure may not be found in time for Chris , but I pray that one will be found in the not too distant future for others.
