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.
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.
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.
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.
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
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.
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.
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.
Chloe left shortly after lunch having had a relaxed morning being unable to assist me to print the blog for the reasons I gave earlier. I spent a good part of the afternoon continuing to try to sort out the mess caused by the last few entries on the blog, that was after spending all of the morning and the early part of the afternoon struggling to get Dragon working only constantly getting up the message on my voice volume that it was ‘ too low’,
It suddenly occurred to me that as my voice grew weaker it would get to a point when I would not be able to dictate my blog at all. How ironic that would be when the whole purpose of this blog was to share my departure with other people suffering from MND and their carers. Without seeing it through to the end, the blog will only have achieved partially what I set out to do in the beginning. The more I thought about the more downcast I became. Quite simply I had never considered not being able to use this medium to my last gasp. As my genie was not available* I spent a pretty miserable evening wondering how on earth I could get overcome this problem. Maybe I could persuade one of the many voluntary groups within the area to give me a hand but I would be seeking a fairly heavy commitment. Alternatively, I could consider employing someone but then there was the cost to be considered. That itself, based upon the time taken today, would not be insubstantial. Some days I feel as though my departure will not be too long now. These are the days when my breathing is particularly bad and I can imagine dying from respiratory failure. Today was one of those days. Everything seemed to be against me. I went to bed low in spirits.
*The genie I was referring to was Paul ‘ the computer’. Whenever I have found myself in trouble on my laptop through tackling something too complicated or just dealing with an everyday problem,’ I rub my lamp’ (telephone) and my genie appears and almost always sorts my problem out for me in a very short space of time. I do not undervalue this is extremely important piece of luck in having conjured up this genie in the first place.
The way I felt after my visit to the golf club, a couple of days ago, following that to Lord’s, on my birthday, made me realise what a limited amount of energy I had to expend, on a daily basis and, once used up, any further effort would make me feel utterly fatigued.
The possibility that my blog could suddenly come to an end came home to me more forcibly now that I had time to reflect on the outcome of my visit to the golf club. What also came out of that visit was the probability that I would have to resign from the club. As, it would appear, that the likelihood of me going again was remote and, much as it would break my heart, there seemed to be no other sensible course of action. I then realised that using the same logic, the likelihood of me visiting Lord’s again, was even more remote. This then would mean another resignation, bearing in mind the immense pleasure I have received, for 30 years or so, from this membership and the fact that it takes 19 years on the waiting list to get in, made the thought of resignation even more painful. The only consolation I would have is that any of my friends I believe would be happy to take me to either club as a guest, so I need not miss out altogether. Whichever way you look at it, this was a watershed me.
These considerations would pale into insignificance if one compared them when they horrors of the world around them. That these personal matters were more likely to dramatically affect my life, or at least what was left of it, than the other world events. In any event, comforted by the knowledge that some friends would be happy to invite me has their guest, if I am strong to go, would make the letters of resignation not so painful to pen.
Looking at wider horizons, the Paralympics have just finished and by all accounts were a great success. It appears that, as a result of these games, the reception of’ the man on the Clapham omnibus’ is now less antagonistic towards disabled persons. It seems that statistics show that in greater percentage of the population is now more sympathetic to disabled persons than previously. When I say previously the attitude of this man on the omnibus was that many of them were lazy, good for nothing who were sponging on the state and many of them are capable of doing some work rather than living on state benefits I make no comment other than to say that I have seen a number of so-called disabled persons, sprinting for train, just having in one of the free disabled parking spaces, which certainly leads one to wonder.