9 October 2012

Posted by DMC on 10 October 2012 in Diary |

Another beautiful crisp, sunny autumn day. The sort of day I would relish, in the past, when I was playing golf. I must admit sitting in my lounge chair and looking out on to the garden, I do feel envious of my friends meeting up for the Tuesday geriatric golf. Whilst I would like to think I could go on getting Ollie to take me mid-morning so that I could drive around on these days, before sitting outside the clubhouse, preferably in sunshine, before going in for lunch. The last one knocked me out so much that I suspect I shall have to adhere to the medical advice (reinforced by’ my lovely’) and give up this pleasurable pursuit.

This reminds me of two extremely difficult letters I must write shortly covering resignation from two clubs which¬†have given me an enormous amount of pleasure over the past 40 years or so. Firstly my membership of the Royal Newmarket and Mildenhall, Golf Club. This club has been dubbed the’ Sacred Nine’, and that is indeed an apt description; such camaraderie and special friendships are formed through being privileged to be invited to join these clubs. The second resignation will have to be that of Lord’s ( bearing in mind that it now takes something like 19 years on the waiting list to get in) it is not a decision taken lightly.

By resigning I shall not be tempted on another excursion. In any event if I did feel strong enough on some future occasion hopefully a number of my friends would be happy enough to take me has their guest.

There was a further issue arising from the recent assessment at Papworth Hospital, about which I feel I should be better informed. In acknowledging that my whole breathing pattern has deteriorated and up to now I had not required daytime intervention, Dr Davies is of the opinion that that state of affairs has now changed. What he suggested was that I should give myself a couple of hours in the morning and again in the afternoon, on the respirator. Pacing myself that way I would make better use of the energy I have at my disposal daily. It is the old jug half full or half empty syndrome.

Assuming one is given daily a half jug ‘of’ energy’, you could spoon it out measuring its use so that you maximise the benefit until it was time to go to bed. Alternatively, you could use larger spoons and ’emptying your jug’ at a greater speed leaving yourself a good part of the day lacking in energy. This measured use of the energy one has at one’s disposal is likely to lengthen one’s life, marginally but beggars the question whether or not a a few more months, perhaps in a vegetative state is to be preferred to a slightly shorter lifespan but one which is to all intents and purposes, free from too many side effects and hopefully little pain.

In order to consider the alternative uses of energy at my disposal or energy which could be enhanced artificially, it would be necessary to have accurate readings over a typical periods of time. Accordingly, I have agreed to blood temperature readings being taken at regular intervals, over say four days (using a blood pressure machine lent to us from Dr West). Only when the result of these tests have been considered by the Dr can we make any rational decision but at least by carrying out the tests we should be in a far better position to make a sensible decision on the best way forward.

Son Smiler came home for the night to do his regular check up on my condition. I suppose one of the plus factors of my having MND is that I see more of my children.

Another advantage about being able is that there are always a number of people coming forward wanting to give you advice. Click here to read what one brave soul wrote to our Prime Minister propounding his own solution to our economic troubles.

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