I have always had to know about things, as a child I loved encyclopaedias, these days I trawl the Internet. Before Chris's diagnosis I knew everything there was to know about MND, I might not have understood it all, but I read it all, from symptoms to prognosis to the tests that are done and what they mean, the different types, you name it, I read it.
I watch Chris and the way he breathes and I get scared. His chest muscles are failing, of that there is no doubt and that scares me the most. We were told and I have read the same online, that NIV does not extend life with severe bulbar symptoms, which Chris has, it just makes life more comfortable and would help him be less sleepy. Try as he might the NIV has not been successful for him, it is not suitable for everyone. He finds it particularly difficult on a warm day to breath indoors, so 30mins pottering around outside in his chair, as long as it isn't too hot, which let's face it is a rare occurrence here these days, helps a bit. I put the fan on him indoors which helps a bit too, but of course that has a cooling effect so I have to wrap him up warm if we use that. He tends to sleep most of the afternoon these days too.
I have to know what I am dealing with, so I researched respiratory failure with MND. Palliative care relief aside I believe as the muscles get weaker, C02 levels build up and I think over a period of time the person gets sleepier and sleepier and eventually doesn't wake up and peacefully passes away in their sleep. Of course the added complication of a chest infection would exacerbate things even more. I am of course under no illusion that things will be exactly like this, it sounds a gradual if awful process, but time will tell.
So this is what I am watching now, once the person you loves get diagnosed with MND you are watching them die a bit everyday, but it seems all the more real now. I am getting in touch with the people in the know, to know what I should be doing or watching out for.
Chris is getting so much weaker too, trying to push himself up in his chair just to let me pull his pants down is impossible for him at times and it really hurts his weakened shoulder muscles. This hoist can't come soon enough.
There are times when I wonder if he will be here for Christmas, let alone next summer for Chloe's graduation, but you can never tell with this disease.
I don't want to lose him, but watching him suffer like this is unbearable.
I think back to just 18 months ago when he was still able to work on the farm, when he ate three hearty meals a day, when he could get in with the cattle and drive tractors, when he could still walk a long way through muddy fields, in spite of this funny limp he had, when we could get in the car and visit Chloe without too much thought, when we could hug and cuddle and I not literally take his breath away.
It just isn't fair and it is so bitterly cruel.
We know a cure won't come in time for Chris, but we both pray with all our hearts that there will be one soon so that others will never have to go through this nightmare.
