People who have seen Chris about tell me he looks so well and that he seems to be talking OK. He does look well, when he was MND free he worked all hours God sends doing a physical job, ate like a horse and was close to being classed as under weight. Now he only works 3 or 4 hours a day uses a scooter outside of the house, does no physical hard work and is having extra calories via milk shakes and the PEG feeds and he is now the heaviest he has ever been. It is ironic as most people lose a lot of weight with MND, Chris was skinny to start with and the medical professionals told us how important it was to get his weight up as a buffer for later on. I also think him getting diagnosed early helped too. We caught the weight loss before it took hold.
I keep getting told that Chris's speech sounds OK too. I joke with Chris that people must think I am making it up. Early in the day it isn't too bad and I've noticed that he also makes a point of not talking too much, but if we have long conversations the words just get stuck, I try guessing and then we laugh about it. Late in the evening his speech is much worse, because of tiredness I suppose. I videoed him yesterday evening as his speech was really bad. The pitch had raised and he sounded really drunk. The difference between am and pm is quite dramatic. The video was just for us as a record, something to look back on. We had a giggle about it, but his speech problems are very real in spite of how he may seem.
Of course anyone outside of the family wouldn't know this, why should they? They won't see the choking attacks he has everyday. I say choking, because it is not a cough and a splutter, he genuinely can't breathe at all and sometimes it is quite spontaneous without any obvious cause. This then involves me pushing his head to the ground and slapping his back to try and clear things. It is scary for both of us. People don't see him holding on to walls and furniture as he walks around the house, they don't see him struggling to use his fingers to do up buttons or hold a knife properly. They don't see him struggle to balance because his core muscles are getting weaker, they don't see him attached to a PEG pump all night so he can keep his nutrition levels up. This is our reality of living with this disease.
I've said before that Chris is brave and he is, but part of that is denial, burying his head in the sand, call it what you will. Neither of us are brave when our guard comes down. People will ask him how he is and I'm sure Chris will say he is doing OK, yet really he hates what this disease is doing to him and stealing from him. There are times when we hold each other and cry, but we try not to let those moments in too often. We try not to live in fear of a future that has yet to come.
People lose their lives everyday to dreadful diseases like cancer, but it is the inevitabilty of the MND disease process that scares me, knowing what Chris will have to eventually go through breaks my heart. I hope those worst days are a long way off yet.
Things are never quite what they seem, that goes for all of us I know, but one thing is for sure, there is no going back from MND, no getting better, no remission, no cure. We could dwell on that, even get angry about it and at times we do, but MND, a terrorist of the body, the enemy, really will have won then. We are trying our best not to waste energy on what the future will most surely bring, but to enjoy the here and now as best we can.
