17 September 2012
I cannot pretend that I did a great deal today. I’m still suffering from this overwhelming desire to close my eyes and to sleep. I am convinced that this is a result of adjustments to my medication that have brought me into the land of the sedated.
In one of my former lives I was chief executive of a nationwide housing Association in, which we had something in the order of 20 sheltered accommodation homes, most of which did something to keep their residents alert and interested in life. However, I must confess that after I took over, and worked my way around, visiting each of these homes in turn, although the majority well run, as I suggested, to keep me residents alert, there were a few where the clients appeared to be sedated, rather than just taking a short nap between activity. I know exactly what they felt like, having found myself in the same state these past few days.
The only explanation I can think of is the additional start lorazepam| (my ‘anxiety’ pill) I took yesterday. Although we were told I could take up to four tablets per day, but had only taken two on most days, yesterday I was feeling rather edgey at lunchtime and so took one additional tablet. I suspect that this was sufficient to make me feel sedated for most of the day. I shall certainly get onto Dr West to look, once more, at the balance of the various drugs to attempt that happy medium of keeping away, the pain in my joints and still taking sufficient to ensure a relaxed and painless nights sleep.
16 September 2012
Having spoken of the possibility of respiratory failure only in yesterday’s entry, I had a very uncomfortable period this morning during the passage from bed to chair and so on through to finally being dressed before transfer to my study chair. This was a typical situation of me being very uncomfortable, my inability to sit comfortably, naturally balanced without assistance of a third person. I assume that it is from one such panic attack that the Thomlinson respiratory failure could come. Leaving respiratory failure aside I must admit that my general state of mind and physical condition to be satisfactory.
I had failed to mention that our neighbour, Tom, dropped in yesterday just to kindly check out and see if there was anything he could do to help out. Although he did not stay more than an hour or so this made what, in the normal way, would have been a quiet day, into an extremely busy one. Thus, it can be seen what a little extra activity it takes to convert a quiet day in to a busy one. Although, in terms of pain control, we seem to have reached a happy state that I believe at a to higher-level of sedation,
Today, for example, my friend Edward Oliver came over at 11.00 to see me and discuss my tax return which he kindly assists me to complete as I have no use of my hands. Then the maximum time that such session can take is just under the hour, as the appearance of the carers at midday, assures a cut off period.
As many a tax return appears to have originated in fairyland, click here to see with which of the, husband or wife, your sympathy lies.
Having dealt with my return for another year, set me to wondering about the impression I have that have been caught in the net once , puts them in the same situation as the thousands of people who never submit a tax return, because they simply do not have a enough income enough to justify the necessity for such a return.
As many a tax return appears to have originated in fairyland, click here to see with which of the, husband or wife, your sympathy lies.
15 September 2012
My lovely’ and I were engaged in our early morning chat waiting for our carers to come in shower and dress me and from the way the conversation went in became clear to me that my family had been alerted to the possibility that I could be carried off at any time through respiratory failure. The reason I reached this conclusion was that having reached my birthday the next milestone was Christmas and we now need to book the B & B accommodation, at our gate, for Smiler and Kimberly. Alice is convinced that I will not only make Christmas but also have a fair chance of getting to our golden wedding anniversary in March. I’m not saying that ‘my lovely’ was treating the subject any differently from the rest of the persons involved, but, somewhere along the line, she had been made to consider this possibility of an instant demise due to respiratory failure. Certainly I understand why the family may have been given this warning that I too would like to have been involved in any discussion on the subject.
As I said the topic came up during our early morning chat but it could equally have been raised a week or two earlier, during the same relapse in the morning routine. Of course, I understand why, given this warning by the medical staff, the family seem to have taken it to heart and thus focused on the possibility and there reaction to it.
Anyway, talking of targets, it seems that the next one of any significance is Christmas, followed in 2 1/2 months by my ultimate target of reaching our Golden Wedding Anniversary on March 16. As things are going at this moment, I see no reason why assuming there is not an emergency, why I should fail to reach this target.
The Ross nursing contingent who come in to see me every day of the week are thoroughly aware of my concern. In fact, I often say to those in attendance, ‘ what would you do at this very moment in time if such an emergency arose? If I’m not happy with their response I quickly run through the procedure that I recommend, that of one carer going for the nearest nippy and the other telephoning for help. Even if the mask is hand held initially until the second carer can assist to secure the mask frame, this will appear to be the most sensible emergency procedure.
I am only too aware that I am becoming paranoiac and the likely onset of breathing difficulties do not exist , other than in my own mind. Having managed to find my way through this breathing failure I then have to face what quality of life I can expect to movement over the subsequent weeks or months which follow. All of the evidence points to a normal existence at whatever quality of life existed prior to any respiratory failure to be one of those moments of feeling sorry for myself. The whole weakness in my body really now can no longer be certain of holding myself available to face any emergency, both legs are virtually useless and can scarcely be moved and all. The same can be said of my arms, both handling limitations on the way in which they are bent. Both hands are completely useless. Add to that that the medication I now seem to live on seems to leave me semi- sedated all day and therefore constantly fighting off the urge to close my eyes and fall asleep, could leave, even the most optimistic patient a little low from time to time.
This being so and I would hope my readers would have a certain amount of sympathy for the writer of the message on the refrigerator. click here to read the message and remember to switch to landscape in the Page orientation .
14 September 2012
There has been a lot of who-hah in the national and international press, over the last week or two concerning the conduct of our young of royalty, specifically Prince Harry, the younger brother of our future King and the relatively newly Duchess of Cambridge, who, as things stand at present, will become our future Queen. The two incidents complained off comprise Prince Harry larking around the swimming pool without his trunks and the Duchess of Cambridge being photographed’ naked’. This last complaint has now, apparently, turned into a court case, the grounds of which are invasion of privacy.
If the case comes down purely to a matter of nakedness I personally see no cause for criticism, as a long time naturist who has enjoyed the sensation of sunshine over my naked body, for the past 60 years, or so . Those regular readers amongst you will no doubt recall several instances, of my dedication to this very un-British behaviour. The myriad of times when working at home behind a high windscreen, in the garden, from which I would make and take necessary telephone calls, leaving the recipient slightly perplexed at the strength of the birdsong in the background. Then, beyond the domestic scene, the numerous occasions, where I have enjoyed this pleasure, overseas, in public bathing parts of the beach especially dedicated to naturism.
In Prince Harry’s case it seems that this was no more nor less than some young men ‘ larking about’ in which our poor Prince fell victim to an overzealous paparazzi being rewarded with a long photo shots of the naked Prince.
The Duchess of Cambridge’s case was viewed quite differently and described by the editor of The Times that’ the Duchess has suffered a gross invasion of privacy. Self regulation, of the press can work but it requires ethical choices’. The Duchess of Cambridge was unfortunate enough to have had photographs of her sitting on a private balcony on holiday in Provence , which were subsequently reproduced in a local newspaper which has prompted the Duke and Duchess to sue the editor and owners on this newspaper, making it only the second time that the Royal family have indulged in litigation, in the last hundred years.
The photographs of our trainee Duchess are now instantly available to anyone with access to the Internet, which the Times editor suggests that this is‘ yet another demonstration of a profound new truth about modern journalism-that the sheer ubiquity of outlets online makes it all but impossible to prevent people from receiving what they are determined to see. Even in France, a country within draconian privacy law regulation has proved impossible to enforce’.
The editor then went on to suggest that self regulation of the press is, at bottom, a question of individual ethics and that a publication of these photographs is an invasion of privacy and the self-consensus of any reputable publication should lead to the decision not to proceed. This self-regulation is not as crazy as it sounds and this is the reason why no British newspaper has leapt to reproduce these pictures, the ethical choices I mentioned earlier only come into play here as the underpinning of self regulation. If self-regulation fails then the prospect of statutory regulation would seem to be inevitable.
The editor of The Times however suggests that it would be naive to some, that they will suffice in all cases to prevent widespread dissemination of images that cross the border between reasonably public and what is properly private.
The Editor suggests that this is the reason why it is wholly justified for the Duke and Duchess of Cambridge to take legal action. French privacy law prohibits the publication of pictures taken without the consent of the subject. The defence to the publication of these pictures,being that there were’ very nice … and the Duchess of Cambridge is very pretty‘ that there is no principled defence in this case. Every publication has to make a daily justification for the principle of free expression. In this case Closer-the magazine which published the photograph failed to discharge that responsibility. The Duke of Cambridge has already had to suffer the problems caused by the paparazzi which lead to the death of his mother. The Duchess has made a faultless start to her thankless task in the public eye. I agree with the editor of The Times that the Duke and Duchess deserve to have the paparazzi respect their privacy. In any event, I wonder at the fuss that these pictures have raised in the media because the subject concerned in each case was naked, to some degree or other, a state of dress, or rather undress, to be found on beaches designated for the purpose, on most civilised countries in the world.
13 September 2012
Yarn, one of the three carers from Two Counties, who looks after me throughout the night, reported to Alice this morning that I had had the best night’s sleep, possibly for years. I had slept for six hours showing very little need to be turned. So concerned was Yarn that there was possibly something amiss with my breathing, that he became tempted to ask Alice’s permission to wake me up. Fortunately, when he was on the verge of seeking her consent, I woke up and avoided embarrassment to Yarn. The point being that he seems to be an experienced carer who knows that the greatest danger I face at present, is dying through respiratory failure, so he was quite right to respond to any suspicious signs.
Better safe than sorry. There is no doubt that I am sleeping longer and deeper than previously although if you look at the amount of drugs I take, I suspect you would conclude that I am more sedated than asleep. This can be affirmed during the day when I’m feeling I could drop off to sleep at any moment.
Our excitement yesterday was the delivery of our new commode which we had been seeking for several months, despite being told by the social services that there was only one type of commode, which serves for men and women. It was only my persistence, which included a graphic description of the anatomical difference between men and women, which eventually produced a commode which was suitable for men only, and in our case, one that was narrow enough to get into our wet room.
The Report, was published today of the Hillsborough football disaster in Liverpool in 1989 and is where 96 men, women and children were killed , hundreds were injured and thousands were traumatised. The reaction of the fans seems to be now the truth has been established, justice can now follow. By justice, in this situation, it seems that it will manifest itself a series of criminal actions against some of the senior police, in charge that day, many of whom had subsequently retired. Also, it is anticipated that a number of civil actions against police officers will also follow. How justice will manifest itself this way, I can only guess, that the public are seeking compensation. In effect, money which will be paid out of the public purse. If this is the case, and we are faced with potential costs running into tens of thousands of pounds then they obvious alternative is to try to turn this into a class action and arrive at settlement figures and dispose of it once and for all.
This is the time of year when we get the ridiculous report on the National examination results. A level results, for example, introduced in 1951 had a pass rate of 70% until 1982. Since then this pass rate has risen year-on-year up to 98% this. The explanation given by teachers, examination boards and others maintain, that grades have improved over the years because students and better taught and are working harder but critics dispute that.
Confucius he say ‘All students who reach %100 pass mark, will pass!’ Click here more wise words from Confucius.
The big news story of the week concerns the assassination during a terrorist attack on a US diplomatic mission in the city of Benghazi. This event was all the more tragic because this man had worked hard to help overthrow Col Gaddafi and he clearly cared about the Libyan people.
The attack was provoked by the release of an American-made film that depicted the Prophet Mohammed, the founder of Islam, “as a villainous, homosexual and child molesting buffoon”.
12 September 2012
Getting down to the hard reality of life, I am thrilled to find that my voice is sufficiently strong in the morning to deal with my blog and it is only in the late afternoon, or early evening, that it has faded below the recognisable volume required to make this whole voice recognition process work at all.
Strictly though, as I understand it, the problem is not so much about volume, as to the amount of oxygen in your lungs when one is active during the day. If one is getting near to the point at which oxygen intervention, during the day, is necessary I suppose keeping an eye on the oxygen level at night, makes sense.
I was due about now for a review at Papworth hospital for non–invasive ventilation. When ‘my lovely’ complained about all the problems we had with the transport last time they suggested that they need not trouble me to attend the hospital but would be happy to arrange for me to have home monitoring. As a result they have cancelled my fellow up appointment and arranged for me to have home monitoring sometime short of Christmas. Clearly my doctor at Papworth seems less concerned than I am and is confident enough to make an appointment as far ahead as Christmas would seem to imply that the Dr is far less concerned about me surviving that long than I am myself.
To be frank, I suppose that with the increased difficulty in breathing I have over emphasised the question of how long I had left. Of course, none of my doctors will speculate on this period of time. They have said, in the past, that much depends upon the patient and his attitude towards his disease. With my positive attitude they have speculated that I could survive longer than the patient who is less determined to live. This is all very encouraging except that my breathing certainly has become more laboured and, I suppose, this has led to a dip in my confidence which in turn seemed to me to imply that I might not even survive until Christmas.
With that fear assuaged and my confidence returned, at least, I know that I have some chance that I will be able to continue to communicate with my readers by voice which hopefully will see me through to the end.
As one or two of my readers have noted that my recent entries display a despondent note and were not following my own objective of Carpe Diem I thought I would find something to demonstrate that I am not deeply depressed, or even likely o be today so, and to convince my readers that this is my state of mind, I will include something humorous to conclude this entry. The most appropriate material I have in my media library, fortuitously, seems to be some humorous quotations which would seem to fit the bill. Click here to enjoy them.
11 September 2012
It is about 10.30 in the morning. Yesterday a milestone was passed. Our Creda drying machine gave up the ghost. I cannot say precisely when we bought it, but it is certainly older than daughter Chloe (born 1967), in other words the best part of half a century. In speaking to the engineer, he made a classic retort that they don’t make them like this any more, and on this occasion the comment was apt and honest. They really do not make them like this any more.
The point being that for a period after the Second World War, when we were putting ourselves together again, we took a pride in our products and really did make them to last. Whether they were meant to last half-century or not, this particular machine has been extraordinarily reliable. Its replacement, purchased only yesterday afternoon (there is still some quality left in the old-fashioned store from which we purchased this replacement, ignoring all the special offers from the giant warehouses and sticking to the little electrical ‘white goods’ store with whom we have dealt for the last 50 years), is already humming away quietly in our laundry, having set out on a five year mission, after which we can expect it to fail, or put another way, give up the ghost.
I wrote, in this blog a couple of days ago about our first landing on Mars, this whole exercise being carried out with Nan-second accuracy. The same accuracy that can now predict the expected lifespan of one white goods or another. I find it sad to have slipped from one type of world, where products were made with pride and the ability to last, giving good value for money, compared with today’s attitude of an expected short life. With the catchword ‘ nothing to pay for four years’, tagged onto many a new product. There is scarcely a time when the average household is not paying for something new (a replacement) . This is an attitude which today’s young couple will not find difficult to accept as they know nothing better but there are still a few old fogeys around like us who still do value well made product and indeed expect it.
A period and mixed messages. There are undoubtedly autumnal signs in the air. What do the summer that we all long for during the never ending period of cold wet weather? He had appeared like a Sunbeam, in the forest, transient and if you are not quick you could miss it. Certainly autumn is upon us. Whilst the remnants of leather against willow skill echoed around the cricket grounds, over the next hedge can be heard the thumps and yells which accompany them, heralding the beginning of the football season.
The Paralympics are finished. Now it’s all about legacy. Certainly there can be no argument that the Games inspired many youngsters to start out on that long road to an Olympic stadium somewhere. Have they really stopped to think of the six hours a day, every day except perhaps Christmas Day, when they will be pounding the road or training in the gym for whatever event they are targeting to appear in some future Olympic Games.? Have they really got that stickability?
The person who I should perhaps now be referring to as an icon (‘my lovely’s’ bête noire description) for British tennis, that uninspiring but certainly up there with the best in the world, Andy Murray. Let us hope that he is on a roll which started by winning the gold medal at the Olympic Games, followed shortly by winning his first grand slam, the American US Open, at Flushing Meadows – certainly a great milestone in tennis when you consider that the last man to win this particular grand slam was Fred Perry, 76 years ago and Andy’s this first, of many, we hope,. I certainly recall an added spark of enthusiasm whenever the Wimbledon tennis started. But then some thing or other intervened, with an air of immediacy, taking precedence over the pledge not to allow anything to intervene in this schedule of training for the targeted Olympic Games, probably some eight years hence. So from the torrent of interest, now specifically called the Legacy what can we do to prevent this torrent from dwindling to a mere trickle. That then is the next task, to maintain the enthusiasm and proving that there really is a legacy from the Games.
10 September 2012
No English man’s diary would be complete without a running commentary on the weather. I don’t know whether this is an English trend or not but nevertheless it seems imperative to subject the reader to a description, of the weather, even down to the last drop of rain every month, which seems to produce some new record or other – the warmest; driest; most humid, etc.
To maintain this tendency then I have to say that the weather has been generally what one would expect at this time of the year pleasantly warm, with a light wind. Now that we are truly in the autumn the weather is beginning to run according to the season. The daytime temperatures now cooler and the nights themselves colder. Great golfing. weather…if only!
I was just trying to think whom it was to who came to see us yesterday. My problem now is that the days are so similar I really could not tell you what day of the week it is. I know they carry out such tests on people prior to the being committed to a mental institution and as things stand I would certainly fail. As my regular readers will recognise my world has shrunk significantly over the last few months. The significant change in mobility moving from the standing hoists to the sling hoist. With the former I could always get out in my electric wheelchair and this’ my lovely’ could manage that on her own. With the sling hoist, however, there is no question that this must be operated by two people. As there is not a person hanging around to assist Alice whenever I wished to move from my electric wheelchair to my study chair, so my world is turned on its head; another door slammed and permanently sealed against me
This morning, whilst being dressed, one of the carers casually asked me what sort of day I was looking forward to. Without being churlish I had to say that I really had no idea and confess to not knowing what day of the week it was. At least previously I knew that there was a fair chance that every Tuesday I would be dressed differently, my routine would change and I would be asked to the golf club to meet up with my pals and have lunch.
There was never any problem with this as Ollie could be trusted to take me there unaccompanied and when we returned in the afternoon’ my lovely’ was quite capable of moving me from the standing hoist to my armchair. Now this option is no longer available, the readers will have seen that this one excitement of the week has now been taken from me.
I am very lucky that there are a steady flow of people who still want to visit me, so we have set up a sort of routine. If it is a short visit then they are invited around 11 am accepting the visit would have to end before midday when the carers came in. Every now and then ‘my lovely’ would fit people in on a slightly longer visit, to have lunch, no longer at the Cricketers but in our garden or breakfast room. That then is the extent of the much broader life that I used to enjoy. I cannot say that I am miserable but more, I am grateful at still being alive and feeling reasonably well.
I receive a significant element of companionship from ‘my lovely’, starting with our reading session in the morning, the lunchtime break; our time together in the afternoon when I might manage to get ‘my lovely’ to watch a movie (strongly encouraged by me as I know that she will probably not often get a rest), to my favourite part of the day, after supper for a couple of hours before I put to bed. Having said that we are in discussion with Ross Nursing to change my bedtime from 8.30 to 8.00. If we are watching anything of interest, on the television, it will usually finish at 8.00 and the next programme will certainly go from 8.00 to 9 .00,, so we have the aggravation of watching many a programme, which we could catch up with on the following day ‘ on demand’ but rarely do, so this is a half an hour which we will happily relinquish particularly as it is a time when I can get very edgy. So, this is my shrinking world. Confined to my desk chair or wheelchair, totally unable to move without assistance. I am not seeking commiserations but trying to explain honestly what life holds for me at present and yes, I consider I still have a quality of life worth continuing with.
Here is a little joke for you. Not be taken too seriously. Click here to enjoy.
9 September 2012
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.
8 September 2012
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.