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.

19 January 2012

Alice had great difficulty this morning in turning off the respirator. Somehow water got into it from the humidifier. She called to the emergency helpline who produced a new one. within a couple of hours. I must say I’m very impressed with this service but then I suppose if you literally rely upon a respirator […]

18 January 2012

On the matter of the problems with Dragon. I shall no longer comment in this blog as having decided to consider whether or not to take them to court, if I do the matter becomes ‘sub judice‘ and therefore I cannot comment on it. I will let the readers know the outcome. We seem to […]

17 January 2012

The tragic accident involving the cruise ship, Costa Concordia, off the coast of Italy continues to incite a lot of comment in the pree as more details of what actually happened are revealed. In a nutshell the blame is alleged to be that of the captain who apparently deviated from the authorised navigable channel to […]

16 January 2012

After spending nearly 4 hours yesterday morning Trying to complete my blog entry with more stops and starts than I care to remember, and much of it using my splendid finger to tap out words letter by letter, I decided that my patience ihad really had come to an end and that I would put […]

15 January 2012

We had two visitors last evening our old friends Jane and Kit Ode-Powlett .I’m sure they would not mind me mentioning that they were the perfect guests, arriving at 5.00 and leaving a few moments before the carers were due at 6.00. I really enjoyed our chat together but I have found that an hour […]

14. January 2012

Horrendous news. A very modern Italian cruise ship struck rocks somewhere near Sicily and keeled over very quickly killing half a dozen or so people and to date 70 others are unaccounted for. The captain has been arrested but to date we have no more news on that. It will certainly put off a number […]

13 January 2012

‘Paraskevidekatriaphobics – People afflicted with a morbid, irrational fear of Friday the 13th will be pricking up their ears about now, buoyed up by the seeming evidence that the source of their unholy terror might not be so irrational, after all. It’s unwise to take solace in a single scientific study, however, especially one so […]

12 January 2012

For an Englishman my overseas readers must admit I have pretty well kept away from mentioning the weather every 5 min, which we are reputed to do. However, I think it would be remiss not to mention that as I sit here in my study, I’m looking out of the window at a beautiful sunny […]

11 January 2012

Last night went fairly smoothly, Carla coming in, to turn me, at 1.00 a.m., 4.00 a.m, and again at 6.00 when she got up. She brought me my tea. just before 7.00 and we resumed our normal routine. It all went fairly smoothly and I was in my study chair, as usual, at about 8.10. […]