7 September 2012
The good Dr Michael left early this morning for Paris en route for Sweden. He promises to return, if required, to assist Alice, before he returns to Australia in October, what a great friend and one shared with both of us. When Michael is with us I feel a tiny bit neglected as Alice dedicates herself to making Michael welcome and comfortable even to the extent of unrestricted access to my whisky!,
Chloe and my last evening just-in-time to give me a kiss before the evening carers left. I had hoped that Chloe and I could and original last few pages chapter X but, when it came to it there were entries out of order which I could not fix before she left. On this occasion then, we had a few hours when she can relax and think about herself for a change.
‘ My lovely’ and I felt as though we had been pretty busy over the last few days, so as a treat we put our feet are in the afternoon and watched some inane movie.
Looking through my media time library I found this batch of photographs entitled ‘ no words needed’, I share them with you in the same spirit that they were sent to me. Click here and enjoy.
6 September 2012
An important date almost slipped by without mention from me this, due to pressure of time, rather than any other reason. That day was September 1, the first day of autumn. How quickly that long for day fled by. During those indeterminable winters day when I watched the weather forecast regularly swearing to myself that I would resume my visits to the geriatric golf day’s, on Tuesday, provided the temperature was no lower than 15°C and the wind, if any, was light, then I would get Ollie to take me to the club, the end of summer came six days ago and the number of idyllic days for me to attend the club were very few. Now, we are in autumn, the days are getting perceptively shorter and soon the acceptable range of temperature and precipitation which I have set as my parameter for it going to the club. This then was reinforced by my emotive farewell yesterday.
The good Dr Michael left early this morning for Paris en route for Sweden. He promises to return, if required, to assist Alice, before he returns to Australia in October, what a great friend and one shared with both of us. When Michael is with us I feel my grade a tiny bit neglected as Alice dedicates herself to making Michael welcome and comfortable even to the extent of unrestricted access to whisky!
My lovely’ and determined yesterday that we would have acquired day-to-day after the hurly-burly of the last few days. Such a promise is all well and good provided that no external monitor is on your phone to phone you are a year the archive the and move your not only influence can come to bear on it. Just as I was completely my entry for yesterday, I’m reading it through prior to publication, it disappeared. Certainly the heading was there, Blog Diary X but the first 20 or so pages a complete blanks. As happened last time this occurred, a week or so ago, I went through all the places where that could have disappeared to but with no luck. However, I was not concerned, as that wizard, Paul’ the computer’ is due to spend a couple of hours year tomorrow afternoon and I believe that I am correct in saying that Paul has never failed to recover lost material yet.
5 September 2012
This was meant to be a quiet day after yesterday’s excitement . ‘ My lovely’ intended to go to London, taking advantage of the good doctors presence , but settled, in the end, for the Bishops Stortford. Michael I decided against lunching at the Cricketers and instead would lunch in the garden, weather permitting. In the end we ate inside as it was not really warm enough to sit outside.
One of the Prime Minister’s pledges, in this austerity climate, was to ‘get Britain building again’. In honouring this pledge it was announced today that homeowners would be allowed a two year period where they could extend and improve their property without seeking planning permission first.
It is common knowledge amongst economists and the construction world that the last thing to shrink in period of economic depression, is the construction industry. Generally the opposite is also true. The first thing to start the revival of productivity is the building industry. Obviously, if this idea works there will be plaudits all around. The upside of this idea is obvious but what are the drawbacks.? Under these new proposals homeowners will probably be allowed to double the amount of space that they can add to their properties, at present, without needing permission .
There is to be a long consultation on these proposals, beginning next week. If the new rules are approved they would come into effect by the end of the year.
If I can believe my source there are already a great number of cases waiting to be heard in the lower courts between neighbours, for one reason or another. Planning experts warned that the proposed “holiday” could lead to uncontrolled development and more legal action between neighbours. The chairman of County Homesearch said “allowing unchecked extensions could even detract from the value of neighbours property if it’s, of a low standard, ugly or not in is the keeping with the existing property”.
From your neighbours backyard to an event which could change the life of people living on this planet in a few years time, yet only warranted a few column inches somewhere in middle pages of the newspaper.
The event to which I refer is that, the Americans have just landed a craft on Mars which could really mark the beginning of space exploration. I recall Neil Armstrong’s classic words, on stepping foot on the moon 50 years ago;
“This is one small step for a man, one giant leap for mankind”
Armstrong’s achievement in landing on the moon, to my mind, equivalent to the backyard problems between neighbours as opposed to the wider spectrum offered through the landing on Mars.
4 September 2012
We woke to a beautiful morning. Being Tuesday a perfect day to visit the golf club and see my fellow members of the geriatric club. We left as usual with Ollie and his Friendly Wheelchair Service, arriving around 10.30 and headed off across the course speaking to various members that we met. Just before 12.30 we headed back to the golf club and joined those members who had finished their round and were sitting outside in the sunshine. Although I felt perfectly well, when it came to it I didn’t feel like a drink and did not want any lunch. Couple this with no desire for one of my small cigars and you can imagine that I was concerned. I stuck it out until 2.15 when Ollie, he of the Friendly Wheelchair Service, picked us up again for the journey home.
Then suddenly, it came to me in a flash. This was probably the last time I would come to the club. A club which had become part of my life. It is a very special club which quite apart from the wonderful course (The Sacred Nine) all of its members are hand picked that is to say voted in on the basis that the committee believe they will be compatible with the existing Worlington members. I could not begin to recount the pleasure that I had received as one of this happy band.
All the time that we were there members came up to greet me warmly and effusively. In When it came time to leave, one after the other day came up, many of them, I believe, now realising that this really was farewell and they may never see me at the club again. This was obvious to me as some of them gave me a bit of a hug, or a stroke or squeeze, more than a normal, simple goodbye. Many of them, I believe, realised that they were probably seeing me for the last time and, as a member who had played once or twice a week and taken a very active part in the competitions or special days, I might be missed,
For me this departure was very emotive. I had been a member this club for the past 38 years and it had become a very important part of my life. The members, almost to a man, were people I would happily call friends and as such I was now leaving a large piece of my life behind.
A SAD DAY
3 September 2012
Michael was up bright and early this morning and off to London to meet with four patients claiming from insurance companies or accidents in which they had been involved and for which Dr Michael will write an independent Opinion.
We are just all recovering from two weeks of wall-to-wall Olympic Games. I believe that, as a country, we acquitted ourselves very well. By that I mean the way we ran the games and how smoothly and without incident they passed off.
Now we are about to start again, this time for the Paralympics. Obviously they are more low-key than the main Olympic Games but nevertheless we have a fortnight of similar events. Personally I cannot get very excited about the Paralympics which readers might find strange coming from a man now spends his life in a wheelchair. My lack of interest derives from the handicapping of the participants. They are already is a row brewing over the length or the springiness of the metal leg substitute for amputees. At least, in this case one is comparing like with like, but the handicapping of competitors with entirely different physical or mental problems does seem to me to be almost impossible to be sure of being fair. I’m sure a great deal of time and effort has been put into attempting to handicap the competitors fairly but if it is working the way it was intended I wonder why, it seems to me, in the same people garnish the medals. How, for example, how does the handicapping committee handicap a competitor whose only handicap is that they had been diagnosed with Asburgers syndrome
For those Anglophiles amongst my readers, this is for you to play at any time you get nostalgic. Just click here.
2 September 2012
The good Dr Michael arrived at midday, for four days. This will give’ my lovely’ the chance to go to London and have lunch with son Smiler. He is en route for Australia and we do not expect to see him again until October or even November.
We could not expect Michael to operate the new sling hoist unassisted. This means that although Michael is here in it does not mean it is easier to get me in my wheel chair miss correct those in yesterday heelchair. Despite being a Dr it is doubtful whether Michael was ever called on to use a sling hoist unassisted, that is whether he was ever called upon to use it at all. Where, in the old days, when Michael was here, it meant that we could go out together, having used the standing hoist, but we are no longer in a position with the sling hoist.
Although using the sling hoist has its advantages over the standing hoist (which, in any event, I could no longer use as I have no strength in my legs) what people do not appreciate is the whole process of being hoisted up and down, two or three times within a short period, of say half an hour when you’re getting up and having breakfast etc., is how much energy that saps from the patient. At the end of it I am gasping for air. Obviously we want to defer the day when the respirator has to be worn continuously day and night. When it comes to getting up in the morning there will be no choice.
Neil, from Possums, came yesterday afternoon to fix the new control unit onto my armchair that we have been waiting for weeks. It comprises a simple large red plastic button. When this is pressed or struck a voice is heard warning the patient to be ready. Them the first option is offered ‘chair going up’. If that is what the patient wishes then he strikes the button again and chair will rise. If the patient wishes the chair to go down he will wait for the following command’ chair going down’. The red button can be located anywhere that it is convenient to strike it. My only problem is the weakness in my right arm does not make this as easy to use as it sounds. I will experiment even to the extent of locating it on the left-hand arm of the chair. Which, when I am using my articulated arm support, should be quite easy to operate.
We all have little habits which may well irritate our partners or even make them angry. Click here to discover one wife’s way of anger management.
1 September 2012
The weather is very fickle. As we moved towards the end of August we were told that it was the driest on record, then, in the last two or three days the torrential rain was such that the records were reversed and it became the wettest August for 100 years. This goes to show how meaningless records can be.
Dragon was still playing up and at one stage became so erratic and I had to call on Paul’ the computer’, who had been playing with the settings, which may have had something to do with it, combined with my hoarse, but weaker voice. Paul was so good. He happened to be round the corner in his brother Terry’ s works and was here in a flash and solved the problem within a few minutes. We are so lucky to have Paul who has a deep working knowledge of the software.
The irony is that all of this time I have been comforted with the thought that although I will lose the use of my hands and therefore not able to operate the keyboard, I should be able to continue doing my blog using voice only commands, what I had not reckoned on was that as my diaphragm muscles weakened, so would my voice. So far Dragon has continued to recognise my dictation reasonably well not perhaps as well as before my voice started to deteriorate but well enough to make it worthwhile continuing. But bearing this in mind the readers must expect this blog to fade out unless I can think of some way round it.
This would be a great pity as the blog’s ultimate objective was to follow me to the grave demonstrating to other sufferers that it can be achieved quietly, gently and painlessly.
Thus allowing them to draw comfort from my experience. For this reason it is imperative I find some way to continue this blog until the end
Who says that the day of the physical newspaper is coming to an end. Click here to see why a newspaper will always come in handy.
31 August 2012
I had an absolutely disastrous morning battling with Dragon. I think this is the worst it has ever been. What happens is that anytime during my dictation a word can split in half and the second part of that word will appear five or 10 lines above corrupting the original dictation as well as the part I am working at the time. As I say, a nightmare. However, I persevered to the end of this entry. I was just about to publish it when for some unknown reason it all disappeared. I went through all the usual ways of finding lost documents before having to admit, I was beaten. I called upon Paul the computer, my saviour in such matters and fortunately for me he was close by shopping at the local supermarket. Together we persevered and completed the days entry.
Recently,’ my lovely’ has taken to reading to me in the 5 to 10 minutes we have to spare after breakfast, before the carers come in to shower and dress me. Today we started on one of my son’s books about one of his ancestors (on his mother’s side) William Nanney-Wynn, the book is entitled A Perfect Patriarch. This book is about the Life and Times of William Nanney-Wynn, a prominent Georgian who lived in Merioneth in the 18th century. The foreword for the book was written by an eminent Welsh historian, Thomas Lloyd.
Feedback from my readers concerning the anxiety topic I have covered over the past week or so. In telling it as it is it seems that some readers feel I’m letting them down. The whole point of this blog is to trace my personal steps to the grave and to call, anything significant which occurs on the way. I thought the anxiety point was well worth while recording, as much for the benefit of readers as for myself. I shall be happy to receive any other comments from my readers to add to the debate
One of the things which may have added to my anxiety was the change over from the standing hoist to the sling type. With the former Alice and I could operate this on our own. This gave us more freedom to do what we wanted in terms of when we used it. On a pleasant summer’s day, for example, we could decide to put me in my wheelchair and spend an hour or so in the garden, where as using the sling hoist a requires two trained carers who are not always available when I need them alternatively, I could be put into my wheelchair either first thing in the morning or a lunchtime and stay in it until the next scheduled changeover. All of this therefore makes the whole process less flexible than it was before.
So, with all this aggravation I felt I needed something to amuse me. Click here and see if this does the trick for you as well as it did for me.
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.
28 August 2012
I had a problem getting up this morning. The two young girls who was sent round to shower and dress me were very competent and polite but no one simply not strong enough to allow me to relax and know I would come to no harm. Instructions from them to ‘hold on’ or ‘lean back’or ‘forwards’ were simply beyond my control and this being so I gave Harriet (head of Ross Nursing) a ring and she popped round 15 min or so later. I asked her in the would be possible to anarchy one of the few men that she employees, specifically Craig, whenever he was on duty. She fully understood the problem and pointed out that there were others in the same position as ourselves but she would see what could be arranged.
Paul’ the computer’ came for a couple of hours this afternoon whilst Alice was out shopping. Unfortunately there always seemed to me some small thing that needed attending to and by the time that is down and no time left to do the idea is about using the Camera Mouse in conjunction with Dragon. The problem we have encountered so far is that even using a point on the retinue of one of my eyes, the difficulty is to steady the movement of the mouse to the point where I wish to change a letter in a specific word. At present the mouse moves erratically around the point which we wish to make the change.
As compensation for the last two or three dreary entries, click here for a little tale which may appeal to those of a generation who do not venerate modern gadgets.