I heard Chris gagging again last night as he was brushing his teeth, then I heard him choke really badly. He was sat leaning over the bathroom basin which was probably a good position to be in. After back slapping and half a lorazepam it settled enough to get him ready and into bed.
The choking then set off his throat spasms. I gave him the iPad to communicate with me as he was having trouble speaking and he asked for the second half of the lorazepam. Fifteen minutes later he was still struggling to breathe, he felt that the tablet hadn't dissolved properly. I said we would give it fifteen more minutes and then I would dial 999. Luckily he started to relax a bit and managed to drift off to sleep. We have a riser bed so at least he was fairly upright.
I wouldn't say his breathing is perfect this morning though he is sleeping. As I sit and watch him I can see the fasticulations in his neck, the muscles forever twitching, all over his body in fact, not just in the neck.
He seems to be able to get away with..just..brushing his teeth in the mornings with only a little gagging, but he is much tireder in the evening. Even though he doesn't eat or drink now apart from his two Lindor chocolates a day, he still needs to keep up his oral health. Last night shook him up so much though that he is not going to brush his teeth at night now. If he is careful he can use the recommended Corsadyl daily mouthwash, so I think he will just use that now instead.
The choking and the spasms are not just distressing for Chris, but they are distressing for me to watch. I feel so helpless and trying to judge the situation, what should I do? That is scary too. Yet again the visit to see the ENT team next week can't come soon enough.
Maybe the public are more aware now of what MND is. The fact that it causes muscle wasting, that people with it will eventually not be able to use their legs or hands, talk or breathe, but no one really knows what this disease is all about unless you are living it. Those things don't just happen, it is like taking the bolts out of a bridge from all over one at a time and waiting to see what will collapse first, which bit will creak and hang on, which bit will fail, how long will it hold up till the whole damn thing goes.
But my husband is not made of steel and bolts, he is a living, breathing person and I am watching this hateful disease stealing the life from his muscles and him, bit by bit and it is one of the cruelest things I have ever had to watch.
MND has changed our lives in so many ways, not just in what it is doing to Chris either, it will never be the same again. As much as Chris wants to fight and wants to live, how do I bare to watch what this disease is doing to him, how does he even begin to cope with it?
We will keep fighting, keep hoping for a cure, even if the reality is it will probably be too late for Chris, we have to, what else can we do? We need to believe that future generations will never have to endure this awful disease.
MND really is the most hateful disease imaginable.
