30 August 2012

Mid-morning, Neill, the engineer looks after our alarm systems, came and installed a basic alarm system to my lounger chair. I now merely need to knock it and hear the recorded voice offering me the choice of going up or going down First impressions, on using this new simplified control system, is that it will work adequately without too much trouble as opposed to the other hand control unit which I found increasingly difficult to use. In any event the original control system is left in place for whatever carer is with me and they can still use it instead of using a totally unfamiliar system.

I was really impressed when, Dr West dropped in, unannounced, to check me over. I think this is the first time I have really felt that someone is taking an overall interest in my needs and requirements.

We have been trying out various adjustments to my medication to see if we can eliminate the edgy feeling that seems to come on in the late afternoon and stays with me, getting more agitated, until I go to bed. Dr. West proposed trying and attention seeking drug with which she has achieved some success with hyper active attention seeking children, ritiline (?)

We have recently added an additional amitriptyline with the night-time tablets and also increased the lorazepam from one to 3 times daily, all this in an attempt to alleviate the anxiety causing the edginess in the late afternoon.

Much this came about as a result of conversations I have had with Dr Margaret, from the Arthur Rank Hospice and Dr West, trying to get to the bottom of why I should suddenly start to feel anxious. I told both doctors that when I was originally diagnosed with MND,’ my lovely’ and I read a couple of papers about the disease and then just got on with living day-to-day. The long-time research into MND show that approximately half of those who contracted it died with him 18 months-I knew one young man who died within six months of diagnosis – and the other 50% within five years, with the exception of one in 10 surviving longer. When the prognoses were discussed with us in the early days I jokingly put up my hand for the one in 10 option, and said I will have that one. Well, that five years has now past and now we are in no man’s land. Does this mean that I could die tomorrow or six months hence. The point being that every MND patient is different and frankly, at this stage, the doctors have no better idea of when I’m likely to die then I have myself. As part of the overall discussions concerning the possible timing of my death , the question of whether or not I believed in God came into the discussion. Of course, if you believe in God you have the best of both worlds as you can, draw great strength from this belief during your lifetime and when you die if you were wrong you have lost nothing. Whereas the nonbeliever has no such believe, in his lifetime, from which he can draw strength and thus lessen his anxiety Although I was not consciously concerned about the possibility of death at any time, and I suppose there is the possibility that this also added to my anxiety, albeit subconsciously.

Having said all that I do not want my readers to be left with the feeling that I have suddenly and abandoned my approach of living for the day. This is still my primary objective but every now and then the weight of the unknown make it difficult to the chirpy every day. I have always promised my readers that I will turn it as it is, no holds barred. Without that complete honesty and openness between me and my readers, the whole objective of this blog would be lost.