Our normal morning routine was broken this morning by the arrival of Harriet, the head of Ross Nursing, who came to check up on how we were getting on using use the standing hoist. She had received a couple of notes of concern from some of the carers come here on a regular basis. – Indeed, she confided in me and some of the girls on our adamantly refusing to use that hoist has a consider the possibility of me injuring myself. Having observed a couple of lifts, on this hoist, Harriet agreed that we must move onto the sling hoist and she would ensure that all the carers who come here will be trained in its use
. The other issue, in which Harriet is involved, is obtaining a proper male commode (or a shower chair which doubles as a commode) . She seems confident that she will be able to produce one for us fairly soon. In fact, she is bringing someone with her next Monday to do an assessment. What on earth needs assessing I cannot imagine. I’m just another male built pretty much the same specifications as other males, so wanted to assess? I stressed the importance, once again, on the danger with the present commode of damaging the pump of my artificial urinary sphincter, located in my scrotum which gets knocked ever timely bucket is inserted or removed. I am sure that Harriet now appreciates the urgency.
In putting my affairs in order. I have given ‘my lovely’ enduring power of attorney, where previously my good friend and solicitor, James Barnett, had exercised this power in entering into a long-term agreement with my publisher. It now felt right at this power been transferred to Alice, I must say, I was asked to go through the paperwork before one of the office junior solicitors comes down next Monday take us through it. They do seem to be making a meal of it but, I have no doubt they have done such powers of attorney for a large number of clients in the past, and therefore the bespoke document, which we were asked to study prior to the solicitor coming to visit us, was perfectly in order.
On the sporting front I’m pleased to record the fact that our man, Andy Murray scraped through into the fourth round, at Wimbledon, by beating , the unseeded Cypriot, Baghdatis, though not without losing a set. This marathon match went on until 23.02 with the official ending time of 23.00 . Murray was penalised twice for the ball falling out of his pocket! However, it was a thrilling match, particularly the fourth set, where Murray closed out the match with a 6-1 finish. I think Murray will need to raise his overall game a notch or two, to the level he achieved in this fourth set of this match, if he really is going to be a contender.
My diversionary offering today is no relevance to any of this entry, but is a rather charming advertisement encouraging people to travel in groups! Click here to enjoy.
Two new dramas – everything which disrupts my daily routine now seems to be a drama! First of all, there was a new night sitter introduced to the team . I think it is all about Wendy being on holiday. Anyway, this new gentleman carer, Jan – believed to be of Dutch origin – apparently appeared around 10 o’clock-times when I was fast asleep. when it came to my first sightless contact with him, he seemed rather perturbed that I never actually saw any of my night carers because I wear an eye shade under my respirator. He has apparently told Alice that he will bring him a photograph of himself for me! Anyway, this young man apparently looked the part – white coat with the traditional upside down watch pinned on the breast etc . Jan apparently spent most of the night reading my blog, having started at the beginning in January 2008 , he got as far as August 2009 so he has some way to go. Having said that I am impressed that he should take the trouble to read this long diatribe so that he is more familiar with his clients needs.
The other drama concerned the new hoist. We were very fortunate that as this was the first time we really used this new sling hoist, that Craig, in whom I have the greatest confidence, was the first of the morning carers to be charged with this task. It was a real performance. At one stage I had to be swiftly lowered back onto the bed as I was so uncomfortable in the sling that I almost hyperventilated. The problem arises every time, how to take off or put on trousers! I suggested they might be much more comfortable in carrying out this procedure if they were to put the respirator on and then roll me from side to side to put the trousers on and use the same technique to get them off. We had another exhausting and prolonged session in the evening. Craig and Becky did a sterling job but attempted to remove my trousers whilst using the sling.
I think we all agree at the end of three quarters of an hour that the bed was the only place to carry out this procedure. We got there in the end, and I suppose it will get easier as I get more confidence in the carers, but this first effort was not a particular stress free one.
The sadness is that the move from the standing hoist to the sling is just another act acknowledged step to the inevitable end. At least with the standing hoist there was some evidence of physical control on my part. When the patient has to go onto the cradle hoist it is an acknowledgement that he really has little or no control left. Even on this first attempt with Craig this morning I almost panicked, and at one stage, feeling all crunched up and unable to breathe, knowing that this which can lead to hypoventilation I asked to have the respirator fitted whilst I was in the hoist.
Paul ‘the computer’ came for three hours this afternoon so that Alice could go to an antique fair. We were intending to spent the best of time working on my music library and attempting to work out some voice macro commands to make it easy to move about the library and find a specific piece of music but the special zoom camera that Paul had ordered (he thinks as to come from Hong Kong) had not arrived so he did his own thing on my second computer when I watched the tennis from Wimbledon.
As a result of the introduction of the sling hoist yesterday and all the ensuing chaos that it caused, we had the whole of the A team here this morning at 7.30. First of all the two Paulas from Ross Nursing turned up to give me my shower, dress me etc. Hard on their heels came Harriet, the boss of Ross Nursing and she brought with her a delightful lady, Anava Baruch, an occupational therapist (OT), the managing director of an organisation called Design for Independence. Anava’s main function was to sort out the most appropriate commode . Having been told by our own OT that there was no commode specifically designed for the male. Harriet, like me, is not a person will accept a ridiculous situation, who went into battle to find me a suitable commode, after I had met a dead end, with my own OT. Certainly Anava was not only knowledgeable and extremely helpful over the type of commode/shower chair I required, but also came up with one or two other very useful suggestions concerning my reclining chair and other details of equipment designed for the individual patient to lead an independent a life as possible.
In the middle of these four ladies milling around, Doctor West arrived to inspect the soreness in my groin. Having examined it. she expressed her satisfaction that it was clearing up nicely so she left. I went through the usual process of showering dressing, and ultimately being deposited in my study chair. This was all done using the sling hoist as opposed to the standing hoist that we have used for the past year. The point about that hoist is that as a strength in my arms weakens and my legs had given out altogether, I was seriously close to slipping through and out of the hoist altogether . Apparently a number of my carers had told Harriet, that they were not prepared to go on using the standing hoist.
The problem with the sling hoist his it is almost impossible to put trousers on and remove them, unless. you are prepared to do so. by lying on the bed. As I can only lie flat if I had my respirator on this made the whole business time-consuming.
As we are only given 2 1/2 hours a day care, there had to be some give on our side. Accordingly I have had to agree pro tem, not to wear trousers. There is always my kilt and the Velcro cotton wraparound that I had made for me in Thailand. All, of these goings-on made the morning visit of the carers a little later than usual but left me feeling a bit happier that we had good people on the case, in whom I have great confidence that they will achieve success in producing one or two new pieces of equipment, within a reasonable time span.
Another week, which I suspect will be like any other , except I will have to accept that having to use this new hoist combined with my worsening breathlessness, my physically active life is visibly shrinks. I’m beginning to assume the role of a genuine invalid – no trousers, until we can resolve the problem with the sling hoist; a comfortable-rug – purchased from the shop at Addenbrooke’s Hospital for £2.99. How can the Chinese, or anybody else for that matter, make a profit at that price? I’m not feeling sorry for myself just acknowledging the reality of my diminishing life. Whether I will manage to get to the golf club, on Tuesday, as regularly as I had hoped will depend on how I manage the next time I go. Certainly my days at Lord’s, are numbered. I just pray I make my birthday on 18 August. I suppose I still have the possibility of the odd lunch at The Cricketers next door . Otherwise, my daily routine will be predictably as follows. An early session with ‘my lovely’; breakfast and shaving before the carers come in to get me up, then hoisted onto the commode for my morning shower and to attend to any other urgent business! Dried, dressed and medicated I am then dumped into my study chair where I will be wired up on both hands and there I will remain until hoisted onto the commode at midday, should I require it. otherwise left seated in this chair until 6.30.
How do I pass the day.? Most of the morning, until midday, is taken up with this blog, answering e-mails and attending to other business matters. Then, after an early lunch. I have the choice of reading; listening to some uplifting music from my 6000 odd tracks transferred from my iPod or watching a film or documentary on my laptop. At six o’clock the carers appear once again to get me ready for bed after which I have my supper and what’s left of the evening will be spent chatting to ‘my lovely’ or watching something on the box until the 8.30 carer comes in to wheel me through to bed.
I suppose I shouldn’t complain as, unlike other invalids I don’t feel ill (except for the last two or three days when I have felt sick at suppertime.) Apart from anything else, my laptop opens a window onto the world from which I am able to find sufficiently interested entertainment for me not to get too bored., Last week and this, for example, I have had wall-to-wall tennis from Wimbledon. Thank heavens I do not get depressed. So that leaves me when I started, almost 5 years ago, determined to live for the day. (Carpe diem).
I hear from my Darling daughter Chloe about the achievements of my three lovely grandchildren and cannot help feeling a tiny bit envious of the 80 or 90 years ahead of them. I would love to know what scientific , technological and physical changes , what inventions and discoveries , will be made over this period of time .
We had an early morning call from a Chelmsford number asking about delivering a wheelchair tomorrow. We need another wheelchair like a hole in the head, as it is with two, already , one electric and one manual chair, plus two hoists, apart from the electrically operated bed and lounger, the place is beginning to resemble a showroom for Independent Living. We just hoped that the caller was actually referring to the new commode rather than another wheelchair. I gave Anava a call and she will check the Chelmsford people, otherwise it seems that the other matters are well under control. (Another call from Anava confirmed that it was a repair to one of the existing wheelchairs. I thought it was too good to be true that they had been able to act that fast on providing the new commode.)
With six or seven hoists, each day, my confidence is building each time it is used. Until I have experienced a smooth painless transfer by a particular carer, Alice stands by to put the respirator on should I get panicky as I swing backwards and forwards. We will soon reach the point that all my regular carers have passed the test and there will be no longer any need for Alice to be there with the respirator.
I heard, this morning, from the good Doctor Michael, who is prepared to reschedule his already tight programme to accommodate me and take me to Lord’s, provided I am still up to it. He plans to arrive here around midnight on the 17th, accompany me to Lord’s, leaving her home around 8.30 on the 18th and then fly back to Sweden or a 06.00 a.m. on the 19th which means getting up and leaving here around 04.00 a.m. I suppose that’s what a 57 year friendship is all about!
Mid-morning two ladies solicitors appeared acting on behalf of my Birmingham solicitor’s who I had instructed to draw up an enduring Power of Attorney in favour of Alice, to replace the one formally in favour of my personal solicitor, Dr. James Barnett. In view of my physical deterioration it seemed sensible to give this power of attorney to Alice but I had no idea, when we decided to make this switch, that it would involve so much documentation. The whole process now is much more orientated towards protecting the person giving the power of attorney. It is now recognised that there are two distinct areas where this power should be given. The first deals with the health and welfare of the individual granting it. Basically, it is all to do with resuscitation in the event of a stroke or something similar , which leaves the patient are unable to make rational decisions for himself. I had previously entered into a Living Will which made it clear that I did not wish to be resuscitated if there was a strong possibility that the quality of my life could not get back, after a reasonable time, to that enjoyed before the stroke etc. Specifically, I said I did not want to end up having a tracheotomy (a tube inserted in my windpipe in order to breathe.) or a feeding tube direct into my stomach – I like to taste my champagne, not just have it pumped in!
The second part of the power of attorney part dealt solely with financial matters. Obviously both rely entirely on trust between the giver of the power of attorney and the person in whom it is vested. I have no fears on either front or would not have gone through this convoluted process.
Apparently, it takes roughly 4 months after this signing session this morning, for the power of attorney to be effective. Heaven knows what happens in the event that one does not survive for those four months. Presumably, it would be as if none of this process had been entered into.
Watched our man, Andy Murray, battling his way into the quarter-finals, at Wimbledon. His Spanish opponent, seeded 5 against Murray’s 4, put up a really good fight and the score belies closeness of the game.
Talking of battling, here is a little history sent to me by one of my American readers. Click here to see it for yourself and bear in mind that I include it, with no comment!
This morning I rang stepfather Richard to see why we were not able to Skype each other. Apparently he has been having trouble with his server, Talk Talk, who, he tells me, have promised to sort it out today. I shall try again in the next day or two as my mother, in particular, seems to draw a great deal of comfort from the visual contact. We are hoping to get them both down here for the day late in August. That is, as long as my mother, does not play up. The trouble with Alzheimer’s patients is that they can be thrown out by a change of routine. For example, last weekend they had both been invited to stay with friends in London, who very kindly sent a car, to pick them up. With their suitcases packed and in the hall, awaiting the transport, apparently, my mother asked about the suitcases and was told they were going to London. On hearing this she refused to move. Poor Richard, he had no choice but to telephone his friends and apologise in telling them they would not be able to make it. This is not untypical of an Alzheimer’s patient and one must have the greatest admiration for the carer, under the circumstances, it must be very frustrating.
In a telephone call today, I told my mother that they were coming down to see us at the end of August and told her that we do not want a repeat of the recent refusal. She assured me that she was really looking forward to it and when it came to it she would come willingly. Sadly, 5 min after this conversation, she will have forgotten every word of it. We must just hope, for Richard’s sake, that she does not refuse to get into the car, which we shall send for them. Any carer with a partner in the advanced stages of Alzheimer’s has to be an absolute Saint with his or her patients stretched to the limit daily. Richard is certainly a saint, so far as I am concerned
‘My lovely’ took a telephone call from the Love film people who had previously asked if I was prepared to participate in a film on Channel 4 dealing with the topical issue of assisted suicide. When they made the original call to me. Alice had also spoken to the lady project director and made it clear, in no uncertain terms, that she was totally against our being involved in further publicity. Whilst being sympathetic with Alice’s reservations I told the Channel 4 people I would see them in order to discuss just what aspect of my blog they wished to use but by seeing them they could not take this as a commitment to appear in their film. This being understood the purpose of the meeting, which was originally scheduled for tomorrow, until the same caller rang out yesterday to say that they had decided against my participation.
Alice believes that they have been reading my blog on a daily basis and will have noted, over the last few weeks, the problems I’ve had with my breathing and simply did not wish to use someone who appeared to be severely ill, in making this film. So the scheduled meeting was cancelled.
My regular readers will recall that following the programme on the BBC, when Sir Terry Pratchett, who I believe is also suffering from Alzheimer’s, went to explore the possibility of using Dignitas in Switzerland. His quandary being that he can only go down this route. while he is still capable of making a rational decision. With Alzheimer’s. It is almost impossible to predict when that time will come.
Following the broadcast of Sir Terry Pratchett’s programme, (see entries for 22 February 2012 and 24 February 2012) I spoke to the producer and said that I thought I it was a pity that more time was not devoted to the alternative, the hospices. As I know little about such places other than a preconception that when you went into one, it was usually at the last stage of your life, when you would pass away painlessly and with dignity. I suggested to the producer of the original Pratchett programme that we should do a sequel which showed the hospices as an alternative to having to go to Switzerland to die. Certainly, the BBC did not reject the idea but on the other hand gave no undertaking, if and when, they might make such a programme.
After raising this serious topic once again, I think the reader deserves some light relief. I suggest therefore you click here for some of Frank Carson’s one-liners
My night carer, Lillian, reported to Alice this morning that I had had the best nights sleep since they have been employed. Looking at their logbook it appears I was only turned three times in the 8 ½. hours and suffered no pain at all during the night. Maybe we have struck the right combination of drugs in tandem with the night carer being there to turn me when I wake up. If so, long may it last.
Todate I have written nothing about the forthcoming Olympic Games. Despite the efforts of the public relation firms to whip up enthusiasm. One of their great successes was to arrange for the torch to be carried virtually from Lands End to John O’Groats – or in this case the other way round – taking in most of the major towns and villages en route. Somewhere I heard that the number of torch bearers, each of whom carries the flame 300 m, number around 8000.
Watching this progression on television I have been amazed at the enthusiasm that has been generated by this procession.
Almost every town or village through which the torch has been carried have made a great effort to turn it into a jamboree, with bunting and flags everywhere, and often with some sort of concert or event to celebrate the Olympic Games. Whereas in the past many of the citizens from the North, when asked about the Olympic Games, said,, quite frankly, they could see little gain in it for them and that it was basically a London event. The hysteria which has now been whipped up over the torch progress seems to have changed all of that. With something like 20 days before the opening ceremony, which thanks to the torch organisers, I believe will now be tuned into by the whole country, who have cleverly been convinced that it is their Olympic Games not just London’s.
Without wanting to sound like a Jonah I can’t get very excited about these Olympic Games, perhaps that will change once the day comes. I just pray we do not mess up our opening ceremony. After China’s fantastic opening and closing ceremonies, it was obvious that no one could ever compete with the Chinese, I believe they had something like 200,000′ volunteers’, so the clever thing for us would be to do our own thing. Nobody beats the British at ceremonials. The annual Changing of the guard on Horse Guards Parade ground or the Royal tournament. These sort of events demonstrate a degree of ceremonial perfection never matched by any other country, so I would like to see something on these lines included in the opening ceremony. Obviously there will be other aspects of being British but I just pray is not all football and idyllic sheep filled panoramic green fields.
I remember very little of the previous Olympic Games held shortly after the war, in 1948 or the 1956 Games held in Australia, where I was living at the time. Taking advantage of the many empty flights returning to their homelands. having flown hundreds and thousands of visitors to Australia, I opted for a cheap flight to New Zealand and spent three or four very happy weeks exploring both islands. I know that our firm in Melbourne was involved in looking after the Ethiopian team and as a reward the Emperor, Hale Selassie, sent a quantity of purple drawers (boxers) . i no doubt having some Royal significance in Ethiopian, n gratitude for our efforts. I think I was offered a pair, despite not having been one other helpers as there were sufficient for every member of the office staff.
Alice had invited two old friends to drop in for coffee this morning. Alice Everard, who lost her beloved husband George, just a year ago and Simon Cooke, whose wife Gillian, succumbed after fighting a very brave battle against MS, for what must have been 40 years or so. Alice and Simon have chummed. mutual companionship and have been on a number of overseas trips together. Having known both Gillian and George I can’t help feeling they would be delighted and thoroughly approve that their long-term partners and have found a companion.
Quite apart from anything else these lovely people brought me a bottle of champagne and a punnet of strawberries and raspberries picked from Simon’s beautiful garden.
Paul ‘the computer’ came round for three hours this afternoon and after fiddling with my laptop for a short while we both sat back to enjoy the men’s semi-final tenns at Wimbledon. Federer, who started as the underdog had a great win over the world number one Dvokovic. Then came the match. we’ve all been waiting for, our man Murary, seeded ,4 against the Frenchman,Tsonga, seeded 5. Murray won the first two sets convincingly bu lost his way a bit in the fourth set, which went to the Frenchman .He raised his game in the fourth set to take the match. We now have an Englishman in the men’s final for the first time in 74 years. The final on Sunday against Federer promises to be a great match to watch, particularly as Murray has beaten Federer on a number of occasions. Federer, on the other hand, is going for his 7th. win at Wimbledon, which, should he beat Murray, will put him in the record books as the greatest tennis player ever.
A quiet day for us, no visitors. Most important of all was that’ my lovely’ was able to take the a little easier and rest in the afternoon. We were given the perfect excuse in that it was a day of the Ladies Final at Wimbledon. I think, like so many other people, we were delighted that the final was not between the two William’s sisters, as in the past, they have not been great matches between these two giants of girls.
Venus was knocked out in the first round so we have Serena battling it out with the attractive looking Polish girl, Agnieszka Radwankska who, although seeded higher than Serena, was not the bookies favourite to win. In the event, the match turned out to be far less of anyone horse race than was predicted. Serena took the first set, comfortably and then Agni fought back with some great tennis to win the second set. In the third and deciding set. Serena managed to ratchet her game up a notch and although Agni was never tempted out of it until towards the end of that it, almost inevitably, Serena won the day. The public generously applauded her achievement in a fifth championship William, particularly in view of the health problems from which she had suffered over the last couple of years.
Readers may remember my foray into the world of assisted suicide and peripherally into the world of hospices. This resulted in my receiving a lovely long comment today from one of my readers who works in a hospice in the Isle of Wight. She was very much in favour of my idea of doing a programme about hospices in order make people understand their true purpose and in particular, they are not just places to go to die peacefully and painlessly.
This reader started her comment as follows:
Hello – I have followed your blog for a long time and usually ‘tune in’ first thing in the morning when I come to work – I work at The Earl Mountbatten Hospice, Isle of Wight. I just wanted to say it saddens me so much that people such as yourselves still don’t really know very much about the Hospice movement in the UK. It seems to me that there is still a great deal of work to do to bring the work of hospices into the minds of the general publi
For the full comment and my reply go to 5th. July entry and click on the Comment Icon at the beginning of the entry. It’s great to think that there are thousands of the Lisa’s out there who tune in to my blog every now and then said that the average daily requests are still running at around 3000. The total today is over 2 ½. Million
Competing for attention from the tennis is the4th. Cricket ODI against Australia at Chester-le-Street. which England won comfortably by 8 wickets, with 13 balls in hand.
Many of the comments I receive on this blog pass on details or tips from carers from their experience in their hope of helping other carers. In the same spirit readers can click here to see if this medical advice is of interest!
We had arranged, some time ago, that our good friends Julian Critchlow and his partner Lucy would come down to have lunch in the garden, anticipating a warm sunny day. However, last night I had one of my nauseous attacks and knew that if I felt like that the following day I would not be able to cope with a lunch party. Fortunately Lucy and Julian fully understood and were quite prepared to come down and spend half an hour or so with me. As it turned out the weather was changeable, chilly and wet. So we decided to confine the visit to my study. The only regret being that Julian could not smoke his very big cigars as Alice has a strict no smoking in the house policy In the 50 min or so. They were with us. I was able to offer Julian a glass of his favourite Bollinger -Lucy, doing the driving, had to miss out – which was gratefully received.
Talking of Bollinger, Julian with his characteristic generosity, brought me a very special bottle indeed. It is La Grande Annee, 2002 vintage Rose
I was also determined to extract answer from Julian as to when he realistically thought he could finish his element of updating my book, bearing in mind we are already more than 12 months past the original date promised to the publishers. Julian, with his hand on his heart, promised it would all be finished by the autumn. I tried to tie him down to my birthday on August 18, but realistically Julian could not commit himself to the date. Assuming Julian is right and the draft book is delivered to the publishers in say late October and early November we will be looking at a spring publication, somewhere around our Golden Wedding Anniversary, on March 18, 2013.
After lunch we turned on the men’s final at Wimbledon. I wonder whether anyone else has noticed it or perhaps the change occurred a year or two before and I had failed to notice it. When I am referring to is that we now have the
Gentleman’s singles final, whereas previously it had been ‘the Men’s‘. At the same time, I believe, that the female matches have always been shown as’ the Ladies singles, etc. Of course, if, as I believe was the case the commentators on record books referred to the Men’s matches as such, then clearly the matching gender would be Women’s matches, whereas I believe, as former as I can recall they have always been referred to as the Ladies matches. Someone must have noticed this anomaly and decided to correct it by referring to the Gentleman’s. matches.
I’m sorry that all sounds rather convoluted but quite simply, you either have Mens and Womens, or Gentlemen and Ladies, not, as I believe we had in the past, Men and Ladies.
As to the Men’s Final it turn out to be a gripping performance between our man, Andy Murray seeded 4 and the reigning champion, Roger Federer seeded 3. Andy Murray started off very much the underdog as no Britain has reached the Men’s final since Fred Perry, some 76 years ago. Murray started off magnificently breaking the Federer’s service on the first game. He went on to win the first set. Federer won the second and third sets with an epic battle in which both players showed us some of the finest tennis ever played at Wimbledon. Again the fourth set was strongly contested by both players but Federer cranked up his game by a notch and, in winning this set, notched up his seventh win of this championship. In the interview, which followed, an emotional Murray graciously praised his opponent and, no doubt, we hope that both will be back at Wimbledon next year and with Murray being five years younger than Federer, I believe is day will come. So indeed did an anonymous gambler, now unfortunately deceased, who placed a bet some, 5 or 6 years ago, at odds of 66-1, that Federer would win Wimbledon at least seven times. As a result he won something in the order of £150,000, which he had donated, in his will, to Oxfam.
Another greatly impressive performance was given by a couple of British lads who only got in to the competition as a wildcard, in other words they were not rated at all. But, in the end, it was these two young men who made history in winning the Men’s Double Championship, like the Singles, 76 years after the last Britons had won it. It is a strange phenomena that the Doubles matches and never attracted the following of the Singles. This is reflective in the prize money where the winning Men’s Double competitors won £130,000 each. Compare this with Federer’s winnings of £1,150,000.
After a surfeit of tennis over the last two weeks, another great event was competing for our attention. It was the procession of’ ‘the torch’ carrying the flame from Greece, from hand to hand, 300 m at a time, towards the opening ceremony in 18 days time. Was I was pretty blasé about the whole torch business, I must admit that I totally misjudged the brilliance of the interest this has sparked in all the towns and villages in which the torch was processed.
We are told that there were 8000 torchbearers who came from all walks of life, very few of them the known celebrities. No longer will thousands of people in the British Isles say that the Olympic Games were something happening in London, by their reaction, the turnout, the bunting and celebrations, which accompanied progress of this torch, thousands of Britons now feel part of the celebration for London in being chosen to put on these Games.
Yesterday, late afternoon, I had another nausea attack. It wasn’t too serious but came in waves. When it was time to eat my supper, I managed without too much difficulty and felt none the worse for it. Indeed the nausea did not return. Alice is intent on mentioning this to Doctor West, but frankly I doubt very much whether she will have a clue what is causing it and I certainly don’t think it is serious enough to be admitted to hospital for ‘tests’. I suspect, with MND, I should have the odd days when I don’t feel too well and so far I’m very grateful that these have been few. I went to bed at the usual time, feeling a little fragile, but am glad to report that I’ve fell asleep very quickly and passed a good night, with only three episodes of calling to the carer to turn me.
The last two or three weeks my anxiety level has increased. This is possibly because any movement of my arms and hands, as when I’m working on the laptop, causes breathlessness and I tend to panic for a few minutes afterwards. Then, unless I consciously calm myself down with deep breathing – so far as my diminished lungs will allow – I feel myself on the verge of hyperventilating. The more one panics the more one is likely to need intervention by means of the respirator. I know if we mention this to my GP I shall probably be given some antidepressants but I’m not overly keen on the idea as I do not want to be sedated in order to cope with day by day living.
Literally, as I was writing this paragraph the telephone rang and it was a Doctor calling from my GP’s surgery wanting to clarify some aspect of my medication. I took the opportunity of explaining to this Doctor the increase in my anxiety level which she will now discuss with Doctor West clarifying the other aspect of my medication. I was pleased when she said that they would not necessarily prescribed an antidepressant for the anxiety; there were alternatives.
There has been talk in the press recently about withdrawing the winter fuel allowance (£200?) to the better off or, at least taxing them on it. We would fall into that category and would very happily forego this allowance in favour of doubling it in favour of the really vulnerable elderly people who live on the breadline, to whom such an increase would be a godsend. No old person should have to dread the winter because of their inability to keep warm.
Whilst talking about taxing the better of on this winter fuel allowance mention was also, may about the possibility of treating prescriptions in the same way. In other words making the better of pay for them, or, at least, taxing them as a benefit. I have no idea what is the total cost of my repeat prescriptions but I do know that the main one, the Rilusole was something like £373 per week when we looked into it before. As I also have half a dozen people are more common medication. I suspect the cost to ask would be a little over £400 a week or, say, £20,000 a year, out of saving which have already been is taxed! I think you will agree that seems he little punitive. From my point of view, I’m not worry too much as I think the earliest they would envisage bringing this tax into effect would be 2015, by which time I anticipate I would have rotted in my grave but I do worry about other middle class patients who have worked all their lives and accumulated some savings, instead of spending up to the hilt each year on Spanish holidays and the like, who would be penalised for being prudent.
We have all suffered from public sector bureaucracy from time to time, so for your amusement I have attached some extracts from letters from various public bodies. Click here and see if you also find them amusing or through personal experience and frustration over something you have battled with, with such public bodies, they make your blood boil.