The progression of MND is relentless, though sometimes it can seem obvious and other times it is rather like watching your children grow up, they physically change, but we never really notice until they out grow their shoes and clothes. MND can be like that, the changes can be so gradual that you don't notice them at first.
The speech therapist popped in to see Chris the other day. She wanted to see the Tobi Eyegaze in action as Chris was the first of her clients to get one. When she went to leave, Chris did what he always does when someone leaves, he gets up to say his farewells. Getting up out of the armchair he usually sits in is a little tricky, on our sofas in the lounge it is really tricky. He managed to stand up after some effort and then promptly fell back down again. We had a giggle about it and he tried once more, successfully this time. This evening we were sat in the lounge on the sofa's again and Chris really struggled to stand up out of the chair. I tried to help, but wasn't much use, but he did eventually manage to stand upright, only to fall back down again like before. Again we laughed about it while he tried again. He then looked at me, smiled and said 'I've had it haven't I?' and I said 'No, not yet, not by a long shot.', but there was this recognition in him, that things are slowly getting worse.
Chris hasn't used his wheelchair much in the house yet, partly through stubbornness and partly because space is tighter here. Our new home has a more spacious layout and everything is on one level, so will be easier to get around in. I think once we are over there him using the wheelchair will help give Chris more independence and be comfortable for him. He is starting to get sore shoulders and I think that is partly due to the chair he spends most of the day in. It is quite firm and it may be that which is making his shoulder blade area sore. We will have to keep an eye on that.
Inspite of the obvious progression, Chris still smiles, I don't know how or why, but he is cheerful most of the time. He rarely complains and has never said 'Why me?' He had a lot of self blame at first that he must have done something to cause it, but after numerous talks from the MND professionals, he quickly realised that he hadn't. No one really knows why some people get it and others don't other than something causes a genetic problem within the motor neurones.
So life goes on. We are preparing for our move and looking forward to seeing Chloe next week when she comes home for a few days break. We will always wish things were different, but they never will be. Thankfully we have learnt that we don't drive each other nuts spending so much time together, well that has to be a blessing don't you think? OK, maybe some of the TV programmes Chris has revisited, well he never had much time for TV as a busy farmer, drive me nuts sometimes, but I just go off and do something else for a while.
These subtles changes invade Chris's body slowly and relentlessly, but we are grateful the progression isn't horrendously fast, so there is always something to be grateful for and hopefully he will be able to keep smiling for a very long time.
