20 January 2012

I have a confession to make. When I first started this blog a little over four years ago, my objective was to share with other MND sufferers and their carers, in effect, how I would die from MND, making the best of every day that I had left. I had no idea how long this journey would be or how I would cope with vicissitudes I would have to cope with on the way. At the time course, I did not know whether I would fall into the first group 50% who died within an average of 14 months, or the second 50% who would go within five years. Then there was that of one in a thousand who could last longer. I said jokingly that I would take that one I’m now over four years-the first symptoms of the MND showing themselves in September 2007-and I suppose I have every expectation of exceeding the five years.

The confession I refer to was that although I have attempted to maintain a blasé and cheerful outlook on this dreadful disease, and what it’s doing to me, it has not always been easy. As time has gone by and I have become more and more immobilised to the point now that I only have a little use of my arms – my hands both of which are curling up – are useless, I do tend to get rather low in the evenings. This is not surprising as the key symptom of MND is apparently extreme exhaustion. So from around 7 .00 p.m. onwards, until I go to bed. I’m usually feeling pretty low and slightly depressed and there are times when my frustration bubbles over and I want to scream and shout and I sometimes do!

My regular readers may think I lead the life of O’Reilly, I’m always going on about all the wonderful things that happen to me; the friends who call; the lunches at the Cricketers; the outings to golf and Lords ;this champagne and so on, and I fear that, in some respects, this might look like showing off. It really isn’t. It is, what it was always intended to be, merely a demonstration of someone continuing to do a number of things that he did before he was diagnosed with this disease. I was setting out to show that there is an alternative to sinking into a deep depression and curling up in the corner waiting to die.

Of course, it helps enormously if you have an angel of wife as I do. She looks after me wonderfully well, particularly in the personal little things she has to do for me which I have always dreaded for the potential lack of dignity. She even puts up with my occasional outbursts of frustration because, as she says, she can fully understand how awful it can be to someone who has always been very active. I suppose living with someone for half a century has the benefit of a deep understanding between you. Many’s the time when we comment on something and the other says they were thinking about the same thing themselves. In fact, without her. I wonder how long I would be prepared to carry on.

I say all these things because in themselves they may be a comfort to the reader who perhaps thinks that when they gets low and depressed, that they are different from me: not so. There are certainly times, fortunately not too often, when I begin to wonder whether I am nearing the end, so far, in terms of my quality of life, and then wonder how best I could put an end to it all. If I stop eating and made it clear in my living Will, that I was not to be force fed, how long would it take me to starve to death and would it be painful, or can I be sedated? Fortunately, these morbid thoughts are rare but my confession to you all is, that like you, I am human

As I say these episodes, which Churchill used to describe as’ his black dog’, are usually infrequent , in my case, mostly in the evenings. Having said that, the following morning I’m usually as perky as ever and have forgotten how low I got the night before. So I revert now to the objective of this blog, Carpe Diem.

I seriously wondered, due to the rather serious nature of today’s entry, whether I would skip the addition of a diversion but I happen to find this particular one which, I hope demonstrates and I still have a sense of humour and, I believe, is a desire to this subject matter on the entry. Click here to read about the Patient Grandfather.