It's been almost 6 years since my official diagnosis and I still seem to be beating the odds. The graph is of my progression over this period. It's very unusual progression because whilst progression can vary enormously between people the progression is usually more linear with any plateaus lasting months not years, whereas I have plateaued since 2010.
It's not totally representative of my physical state because during this time there have been subtle changes which have had much bigger implications. Losing the final, albeit miniscule strength in my hand, means I can't drive my wheelchair which is a massive loss; the combination of being unable to move without assistance and then having to laboriously type out where I want to go. The second bit can sometimes be impossible when outside in the sun. The other thing which has weakened is my neck which is making travelling in the car difficult. It's been several months since I have gone anywhere without my carer either driving or as a passenger to assist with lifting my head or adjusting my chin support or neck pillow. I think me and tracy are equally nervous about going anywhere without assistance.
I haven't had any checkup appointments at Kings Hospital for about 2 years because there seems little point and it's a big hassle to get there, so I emailed them last week with three questions. The first was, how often have they seen someone plateau for several years. Secondly, is it possible that my MND has changed to a less aggressive type than ALS (and how would I find out) and finally, is it worth doing a study on patients with prolonged plateaus to discover common factors. I hope to get a response this week.
Obviously on balance this is a good situation although it might lead to some financial implications if my remaining life policies expire before I do!!! And that endowment plan from my first flat 23 years ago might actually now reach maturity in 2015, paying out a fraction of what that slimey Norwich Union rep promised, instead of the full amount if my demise occurs beforehand.
The other aspect of my unusual progression is dealing with the change in thought processes. For the first year certainly, and probably for most of the 3 years that I declined, I found it difficult to put the thought of dying out of my head. After all, I was deteriorating at a fairly typical rate and did reach an FRS score lower than many people I knew who had already died. There wasn't any reason to think I would survive any longer than average either. It's obviously impossible to know for certain but I think I had come to terms with the inevitable. Something I certainly couldn't say now.
I am aware that I have accepted my current state of disability (however shit it is) as both normal and permanent. So I have to keep reminding myself that things could change at any time and I will have to go through the first year's emotions all over again. I guess it's no different to cancer patients that go into remission.
I am also aware that I am not the only person who this unexpected situation affects. I know from the boys point of view I am more use alive than dead, and maybe in the future they might exhibit some qualities from being exposed to the current situation. But one can't avoid the fact that family life has been decimated by this illness and in many ways my prolonged survival has made things more difficult. There are almost no family activities we can do together and there is no semblance of a normal relationship. We have already both agreed that next year's holiday will be without me and but hopefully I will be able to go on our next cruise in 2015. I don't mind because I know I wouldn't enjoy it.
So, reasons to be cheerful? I think probably yes, but there's no doubt it's not without some negative side effects which may become more significant in the future.