6 April 2012-Good Friday
The beginning of the Easter holiday and one of the most important days in the Christian calendar for those who believe. Although sunny and bright. There was a chilly wind so sadly I was prohibited, by ‘my lovely’ to spend time in the garden. I’m sure she’s right. Having come through two winters without catching a cold it would be crazy to risk it and this late stage. Chloe, Karl and family came down to lunch with Karl and the children leaving mid-afternoon leaving Chloe to spend some time with me and return home tomorrow. It’s a two-way win-win situation. Chloe can certainly do with some respite from her three children and her busy working life and it is lovely for me to spend a little time with her without outside distractions.
We had lunch almost as soon as they arrived, then children were out in the garden letting off steam. The boys playing football with their dad and Lara going through her ‘gymnastics’ routine, for the benefit of her doting grandparents –cartwheels, crabs and some rather floppy handstands. It was lovely for me sitting in the breakfast room watching all their antics through the French windows. Shortly after that they all went off to a shop, in the village, called Fish Fish Fish. Sebastian, being proud owner of an aquarium was able to find one or two bits and pieces to submerge in the tank to make it an ever more exciting place to live for the fish. On the way back from the Fish shop they spent half an hour or so in the adventure playground on the Jubilee field and then back for tea before Karl took the children home, leaving Chloe to spend a little time with us on our own. A happy interlude, particularly for me to see the children at regular intervals developing their own personalities.
Chloe bought some photographs and videos with her of recent activities by Seb and Lara which, among other things, included they are part in in end of term show.
First of all we heard playing any solo drum piece. I must say, I was very impressed with his maintenance of the rhythm throughout. I thought of a very accomplished performance from a nine-year-old. Apparently the audience gave him a wonderful standing ovation at the end of it but sadly, Karl and switched off the camera by that time. Then there was little Lara, at at seven years old, singing a solo piece from Oliver. Okay, so one or two of the notes were a little flat, but on the whole she did very well and what a great boost for the confidence to be able to stand up in front of the whole school and all the parents and perform so competently. I am very proud of both. Many adults I know would quake at the idea of speaking or performing solo in front of a large crowd people so augers well for these two that day and the confidence to do so. Provided they don’t lose it, it will prove to be a great asset in whatever you decide to do with their lives.
The other half of the family, Smiler and Kimberly, went off to spend a few days in our Welsh cottage. Fortunately they do not mind a bit of rain which can almost be guaranteed in Wales!.
The day did not start off terribly well as, when I was being showered by my carers , a painful reaction to the water on my sebaceous cyst led us to inspect it and we discovered that it had burst. As my appointment at Bishops Stortford hospital, to have it cut out, is not until the end of April, Carla, one of my carers, made a call to the district nurses to request a visit from them to dress it. They came mid-morning and I put it to them then it might be sensible if we were to try to bring forward the hospital date for it to be cut, otherwise we might risk the chance of it going septic. Whilst they did not think there was much chance under going septic unless I caught an infection, they agreed to consult with my GP, Dr Lort, about the possibility of an earlier hospital appointment.
The cricket season is upon us and it would be remiss of me not to mention the test match in Sri Lanka where we have seen some magnificent batting from the English team. The star of the show was Kevin Peiterson, who scored a superb 151, with six 6’s and sixteen 4’s giving Sri Lanka the task of marking up 181 runs just to pull even with England
For once I do not believe it appropriate end this entry with a joke. Is it time for reflection and considering the suffering of others. For example, we in England shuld all be thankful that we were not victims of an earthquake, tsunami, flood etc. To this end click here to see pictures of Japan, six months ago.
5 April 2012
After the most painful night I have ever had. I started the day off by sending along e-mail to Dr Mark Abrahams, the pain consultant at Addenbrookes, commenting on the increase of pain that now appears to be affecting my entire skeleton and requesting him to take the matter in hand. Even if the nerve block to my right shoulder had worked that would have only been one location of pain as hips, knees and ankles are also involved. It may be that the problem lies in the fact that I was referred to him through the Arthur rank hospice for palliative care which I understand is to make your remaining time more comfortable. So far as I’m concerned. I have not reached that stage yet and I want them to get to the cause of this pain rather than just dulling it with more painkillers.
Alison Lambie and another, Alice friends, were due to come and have coffee with her this morning, then at the last minute Alison had something crop up which needed her attention. Ahe other friend, whose name I shall withhold to spare her blushes, never turned up nor telephoned to say she was not coming. We can only assume that she had completely forgotten about the arrangement. Most of us had been guilty of such a lapse of memory at some stage in our life – have turned up on the wrong day for a dinner party or worse in my case where I arranged to play golf with to different people at the same time on the same day. Fine, as long as all parties keep a sense of humour and bearing in mind, but for the grace of God, there go I.
A hosepipe ban has been imposed upon a large part of Suffolk and Essex due to the lack of rain. Not only will this have a devastating effect on our gardens but a great number of small businesses will also be effected. The one they showed us on the news, that I felt sorriest for, was a grass turf farm, which is currently harvesting the turf for instant gardens on new developments and the like. Apparently the normal practice is to soak a newly laid lawn for 28 days, otherwise the grass will die. So presumably, if this, and other companies like them cannot get dispensation from this hosepipe ban, so will the businesses which rely upon the water die. As is normal in such cases a number of exempted categories were named at the same time. I was totally perplexed and no why Blue Badge holders were amongst them.
(The Blue Badge, for those readers who are not familiar with the term, is the exemption card given to the disabled so that they can park in specially designated parking spots.) What this has to do with a hosepipe ban I cannot begin to think unless, like the rest of the population, the disabled will be allowed to use a hosepipe to wash their car! This ban is the result of parts of this country having experienced the driest few months since records began. Not only is the lack of precipitation breaking all records but also the daytime temperatures seem to have gone haywire. Two weeks ago we were sitting in the garden having lunch, basking in temperatures around 24°C, warmer than it was in Barcelona. Yesterday in the same spot it was 8°C – much closer to the normal temperature we can expect at this time of year.
If, as it records showthat , our climate is changing., year by year – as seems to be the case where records for highs and lows are broken annually – then we are going to have to take much more seriously the question of wasting water from ancient pipes and the like -something in the order of 1,000,000,000 L a day is lost that way – and concentrate more of our decreasing rainfall in reservoirs. I have prophesied for years that it is not the fact that we have a finite amount of oil which should concern us – we are ingenious enough to develop a substitute for power production – but lack of potable water. It seems crazy that a little island like ours, completely surrounded by water, may one day face a lack of drinking water. (JG Ballard wrote an excellent book on the effect on the world of a total drought . The result was that whoever controlled the desalination plants, was King) Again, I have sufficient confidence in the ingenuity of mankind, to find substitutes for some of the processes which require vast quantities of water and then, I suppose, there will always be the possibility of desalination plants, an expensive option at this stage, but needs must. Interestingly, I heard only yesterday that somebody is developing plants that can be grown using seawater.
Speaking of the ingenuity of man, click here to see an excellent example, be sure to watch this on a full screen .
4 April 2012
I’m sorry to say I had another painful night. Fortunately I had a telephone consultation booked for today. That’s the good news. The bad news is that the so-called consultation turned out to be a nurse ringing to find out how I was. I just can’t get it out of my mind that there must be something more sinister going on. I was given to understand that the consultation was to be with Mr Abrahams, the Dr who carried out the nerve block on my shoulder. The letter that came to me concerning this appointment said that the ‘consultation’ will replace your face-to-face outpatients clinic appointment’.
When it came to it. I was telephone by a nurse who merely wanted to know how the nerve block had gone. It was not what I would call a consultation, particularly as the nurse was unable to comment on the any of my questions. The whole consultation can be summed up with the one sentence the nerve block did not work. So it seems and I’m now going to be referred back to the Arthur Rank Hospice. . I suppose my pain comes under palliative care which is what the Hospice specialises in. However, as I have an appointment in 10 days or so with my MND . I shall try to get Dr Chris Allen more personally involved. I’m not interested in increasing the dose of painkillers so much as I am to get to the root of the problem I also had to remind the nurse who telephoned me that the life expectancy MND patients is limited and as some months have gone by since I was first referred to the Arthur Rank Hospice I’m not very encouraged or indeed impressed. Accordingly I have written to Dr Mark Abrahams, copied to Joanna Sassons – the coordinator of my MND team at Addenbrookes – as well. As to Dr Margaret Saunders herself.
Talking of not being impressed, I received an e-mail from you Dragon people (Nuance) a few days ago, saying ‘we do like to witness your problems during a co-browser session. Until now we have not been able to do so since Dragon seemed to be showing almost no problems during the sessions’. This despite a lengthy exchange of e-mails between us over the last nine months, which have included more than once, the Dragon Log and Knowledge base.. This afternoon I was trying to close a session with the usual commands and instead of doing as I asked it. it Merely typed in the command into my text. So here is an instance where perhaps the co-browse with Dragon would be able to identify the problem. So I gave them a call, as I have been instructed to do when a problem arose, so they could co-browse and see what was a problem for themselves. They took control of my desktop but were unable to see why my commands have been misunderstood, so in effect, I was back when I started nine months ago.
On the question of the telephone calls I had merely made the point that at no stage is the caller warned that they are on a premium line. They agree that the message on the telephone states that the support is free but does not mention that the call will be free. Then they referred me to their website, which says, inter alia, ‘UK calls will cost 6 p per minute from BT landlines.”. First of all, I never look at their website and I asked when they added this warning? I suspect after I complained to the trading standards office. The place where the warning should be given is on the automated message which should say ‘that this support is free but the caller is being charged at a premium rate, of 6 p a minute, for UK calls. I’m not going to banging my head against a brick wall over this matter as they clearly intent to do nothing about refunding me for the 60/70 odd telephone calls I have made over the last nine months. Also it is obvious that they do not intend to doing anything about the non-recognition or mis-recognition of commands, so I guess I will just have to live with it.
I did promise to report back to any of my readers who might be interested in the outcome of the Roho cushion saga. I said previously that I would not be able to evaluate the improvement until I sat on it for 13 hours or so.
I’m glad to say there was a discernible improvement in this cushion since Sarah, the area manager, whose supplies these cushions, made the necessary adjustment to the amount of air in it. I will report once more in a week’s time to see if the improvement continues.
The threatened strike by the oil tanker drivers over the Easter holiday been removed so the panic buying of petrol has abated . Now the baggage handlers at Stansted Airport are threatening to strike for the three days of the holiday. Whilst apologising for any inconvenience this strike will cause to the travelling public. they hypocritically have chosen the three days which will cause the maximum inconvenience to the passengers
As this entry started off with a misunderstanding about the telephone consultation with the pain Dr. I thought the following embarrassing medical situations might be appropriate. Click here to see them.
3 April 2012
The first, of our two visitors today was Sarah Lahert, the Area Manager for Sumed International, the official agents for the Roho cushion that I have been going on about over the last couple of weeks. What it came down to was this the cushion, that my OT had kindly managed to extract from the NHS, proved to be 12 years old, lacking in its covering and was almost certainly well past its ‘ sell by date’. Sarah reckoned about five years was the average life for such cushions, perhaps a little longer if just one person had used it but over the years, if a number of different people sat on it, the differential pressure could affect the individual air pockets and render it unable to perform its function
I was especially pleased to learn that the other cushion, the one that they provided for my wheelchair, was top of the range and was probably brand-new. What surprised me was the wheelchair people did not give us any instructions or an air pump and a puncture kit, all, apparently necessary to maintain this cushion. Sarah adjusted the air pressure and showed us how to do it for ourselves. The overall effect was that the patient should feel as though he/she was sitting on a soft pillow. I must admit, after her adjustments, this cushion did feel softer and more comfortable (that may be because I was expecting it to!). The test will come after I have sat in it for 13 hours, when normally the last two or three hours the other cushion gets very uncomfortable.
Ideally one should have one of these cushions in the wheelchair and the other in the lounger but knowing how expensive they are (anything between £450 and £675, depending upon which supplier you went to). I think the chances of getting a second one remote.
So, it just means when I’m hoisted out of the lounger chair someone whips out the cushion and puts it into the wheelchair before I am lowered,
I must say you. I wish I’d known about this Roho cushion a little earlier. It’s like so many things that we have found useful or necessary. In many instances we have had to discover them for ourselves and then usually our team are prepared to provide them. This harks back to a suggestion I made to the MND Association, a year or so ago, that someone should prepare a little handbook of tips for new MND patients pointing them to various gadgets or anything that would enhance their quality of life, the Roho cushion being typical. Incidentally I love the name Roho it has very jolly ring about it and I am very grateful to Sarah for making a special trip just to make sure we were happy with one of the cushions. That’s service for you. I shall report back on my experience of sitting for long periods on this cushion.
My second visitor was Gavin from Able 2, a company that has a very large range of medical equipment, but the one I’m concerned with is my’ floating’ armrest. It is a wonderful gadget to which I clamp my left arm and by a series of spindles and complex looking joints, it relieves the weight of my arm and allows it to hover over the keyboard. The up and down movement of this arm being affected by a serious of heavy duty elastic bands. One of the joints had come adrift which Gavin kindly replaced and at the same time adjusted various other parts of this incredible piece of equipment to make it more effective.
Since the only use I have in my left hand now is one finger sticking out of the special plastic splint that my splendid OT (Occupational Therapist) Lynne Gates, had made for me, without this piece of equipment I very much doubt whether I could press any of the keys on my laptop as my fingers and my arms are now very weak. I must try to do more and more on my laptop using voice activation, as it should be possible to do around 95% using my voice. There are always one or two key sequences which I believe I might need help with otherwise, with patience (of which I’m not blessed with an abundance), I should be able to continue sometime to use my laptop to its full potential.
With these two visitors and the residual fatigue from the previous day, I was quite tired and did not achieve that much today. But then there is always tomorrow, so the saying goes!
As this entry seems to be all about good advice. I think the following valuable information concerning ATM machines would be helpful.the are Click here see if it applies to you
2 April 2012
The first day of a busy week, starting with my quarterly assessment at Papworth Hospital, basically for my lung tests. The day started badly with me sitting for almost 3 hours in my wheelchair in the hall waiting for the ambulance people to turn up. Not uncommon there had been a cock up over the times. Somehow, the ambulance people had got the idea that I was to be picked up at 11 AM lawyers which in, fact, was the time of my consultation. However, I did eventually get to the hospital and went through the usual process of, blowing sucking and sniffing the various instruments to compare with my results last time. The Dr who, as usual, was very charming and helpful, accepted that my breathing had ‘slightly’ deteriorated since my last visit. I thought this to be a bit of an understatement as the result of today’s tests showed my FVC dropping from 49% to 31%. Dr Davis assured me that this was not as bad as it sounds. He took another reading on a small portable hand-held instrument and said that the gap had already narrowed. Certainly he was not alarmed by the result, so why should I be. He was still of the opinion that I would not need daytime intervention on the respirator now but there could come a time when perhaps I could use the respirator to advantage in the afternoon whilst having a nap for an hour or so.
I told the Dr that I tended to go from month to month aiming at new targets such as’ my lovely’s birthday; the various matches at Lord’s; then my birthday in August; followed by Christmas and the major target of all, our golden wedding anniversary on March 16 next year. I told the Dr I had a very special bottle of 1963 port (which was an exceptionally good year) which I had every intention of drinking myself and not leaving it to my son-in-law!/
The other aspect of the Dr was slightly concerned about was the fact that I had lost just over 8 kg in weight in the last six months. I explained that my diet had not changed but the size of my portions were smaller as I really did not get very hungry. This appeared to satisfy him and he expressed no further concern on this point. The doctors stressed, what I have been told before, that it is the important to avoid getting any infection or catching cold. Presumably this is because my immune system has weakened.
I would say that the consultation generally was quite bullish and the doctor saw no reason why I should not reach our Golden Wedding Anniversary as this was a good target to aim at. He remarked that determination and focusing on objectives, such as my blog, was a significant factor in prolonging one’s life. So, all in all not a bad assessment.
I’m glad to say that the ride home following the consultation was fairly speedy but I have to admit that the these seven hours or so that the whole thing had taken and left me a little drained of energy. I had made a muddle over some of the dates for the blog entries, but simply could not muster up the energy or enthusiasm to sort them tonight.
Bearing in mind that I sometimes wish that things had not turned out as they have, reminded me of a little story which well illustrates the point. Click here for an object lesson!.
1 April 2012 – April Fools’ Day
Traditionally the day of the year when people play pranks on other people. Usually your friends but there have been instances where pranks have been played on people through newspapers or radio that have got completely out of hand.
The origin of April Fool’s day or All Fools Day is very is uncertain but it is generally accepted to have started around 1582 in France when the reform of the calendar under which Charles IX changed and the Gregorian Calendar was .introduced with New Year’s Day being moved from March 25 – April 1 (New Year’s week) to January 1.
Probably the most memorable radio prank was in 1938 (not strictly an. April Fool’s Hoax as it was in October, but the effect was the same). Orson Wells, a budding director at the time, who was to acquire fame as an actor (in Citizen Kane) had an idea for a radio production that he believed would strike fear in the homes nationwide in the USA.
In order to publicise his production of the adaptation of HG Wells’, War of the Worlds, he started an hour-long programme by creating a series of news bulletins describing a Martian invasion as it was supposedly happening. When a fictional reporter broke the news that astronomers were monitoring strange activity on Mars, chaos prevailed, bulletins rushed in from around the country reporting Martian sightings. The Secretary of the Interior in Washington, DC, urged people to stay calm, even as the Martians were allegedly destroying cities .In the final stage of the invasion, tripods descended upon New York City. “wading the Hudson like a man through a brook”. Thick poisonous gas suffocated New Yorkers, and the signals cut in and out to .indicate destruction.
After the broadcast an announcement came that the plot was the stuff of fiction. Wells intentionally withheld this reminder from the middle section of the show, so that anyone tuning in. .after the introduction, had no idea of the hoax. For a short period, chaos reigned. Even today it is said that Orson Welles caused the greatest prank in the history of the radio.
What might also have been considered an. April Fool’s hoax was the government’s announcement today that they were adding VAT to freshly baked food. This would catch most of the junk food suppliers and as all the details had not been disclosed, there was speculation verging on the absurd. For example, if you are in a bakery who have just produced a tray of hot doughnuts from the oven., if you chose to buy one at that stage you will pay VAT on it. However, if you waited until they had cooled down and were on display, presumably they would be Vat free. Unfortunately, this is not a hoax but as I have not seen a full report on this proposal I cannot really comment further.
The other matter which has caused quite a stir was the alleged possibility of the oil tanker drivers striking over the Easter period ( which, of course, is a time which would create most chaos and inconvenience the greatest number of people). However, we are now told that this was never a reality as the unions had to give seven days notice after balloting their members, and as a ballot had not even taken place, to organise things in order to strike over the holiday period would have been almost impossible
The trade union Unite made hay of this by saying that there never was going to be a strike over Easter as talks were continuing. However, before the unions came clean on this there were queues round the block for people trying to fill up their cars. Of course, the government took the brunt of the blame for the ensuing chaos.
The government also announced about this time that they intended to increase the passenger tax on airline flights. The short-term flights to Europe would only add a few pounds to the ticket but the longer flights were more serious from the passengers point of view. For an example a family of four flying to Australia would have to pay something in the order of an additional £260. The government justified this to some extent by reminding us that the airlines were not charged VAT on the fuel that they consumed. (I wonder why not?, There must be a very good reason as it would be a natural way of raising a lot of new revenue. I suppose if we were the only country to add VAT the airline fuel we would lose a great in a business).
Add to this the election of George Galloway, the self confessed friend of Hassan, and, so far as I know the only member of the Respect Party was swept into Parliament with a large majority by the Asian population of Bradford.
So with all of this you can appreciate it has not been a good week for the government although the Bradford by-election, which was a solid Labour seat, should have given Ed Milleband, the leader of the Labour Party, more of a headache.
31 March 2012
Started yet another section of my blog diary today. There is usually a reason for the change. This time I got tangled up in a lot of tables which had been inserted to cope with all the photographs of the Queen and the American Presidents. These tables affected subsequent entries and although I could remove them it seemed just as simple to start a new section. When I started this blog I had no idea that it was going to be anything like the length that it is has turned out to be. The entries now are considerably longer than they were when I started out and buried in them is the information specifically aimed for the patients and their carers. I chose some time ago to widen the subject matter when I realised that blog that was entirely dedicated to how I felt when I got up in the morning (shades of Proust) and my progress through the day, which would be insufferably boring without some comment on topical issues. So I tend now to wrap up the true objective of each entry with something else of interest either of national or international nature.
For example, a the last two or three days have been dedicated to ‘ would they, wont they’ go on strike over the Easter period. This was the original threat of the oil tanker drivers which we seem to get all too often. To be honest I do not know what this particular strike is about, except pensions is one of the heads of claim and no doubt the others are to do with working practices or wages. As I understand oil tanker drivers earn in the region of £45,000 a year so I would not have thought that they had a great deal to worry about on that score. Bearing in mind the parlous economic state that the country is in, the last thing we want is strikes about wages when most people are just happy to have a job. It always makes me writhe when their trade union representative comes onto the television and claims that they do not wish to disrupt the public too much and then choose a time for the strike like the Easter or Christmas holidays which is going to cause the most disruption to the public.
So with this strike threat hanging over us the population they have been rushing around like lemmings, from one petrol station to another, sometimes queuing, in a long line of cars for two or three hours, before they reach the pumps, in an attempt to fill up before the strike begins including keeping a jerry can of petrol for emergencies. All of this even before the tanker drivers have been balloted about the possibility of a strike. Yesterday, the unions made it clear that if there was to be a strike it would not now be over the Easter period. The main reason being that until the union executive decide to ballot their members they cannot strike for seven days after the result is known. So the mass panic was, it seems, premature and, of course, the opposition are blaming the government.
I had another three-hour session with Paul’ the computer’, yesterday afternoon when, amongst other things, I believe he has now resolved how I will be able to link my laptop to the television if I want to show ‘my lovely’ some programme, film or other.
This is such a good idea as there is so much rubbish on the television between 6.30 and nine o’clock, when I am forced to go to bed, that if I can use ‘catch up’ on my laptop, I will be able to show Alice anything she might have missed, as generally the best programmes tend to come on at nine o’clock in the evening.
I tried to make my weekly call to my mother and Richard only to find that they were completely without electricity and that I was the first person who had managed to get through on the telephone for some time. Not a satisfactory state of affairs for two nonagenarians but, in the usual fashion, Richard is not perturbed. Sensibly he has left my mother tucked up in bed until the electricity and plus the heating comes on again.
Talking of the best happening after nine o’clock click here to see that that is not always an .advantage.
30 March 2012
I had a really bad night again. Both shoulders knees and hips at some stage or another and frequently at the same time. I really must get to the bottom of the cause of this and will speak to the pain consultant during our telephone consultation, next Tuesday
We were pleased to hear from Richard that their electricity had been installed and thus the house was warm once again. There ought to be some liaison between social services and the electrical company identifying many elderly people at risk when there is a power cut. At least Social Security: could ensure that they get hot meal fire Meals on Wheels and keep an eye on how they manage to keep warm.
I fear the fortnight of beautiful well is coming to an end and we are going to be plunged back into winter next week where we enjoyed temperatures as I as 24°C, Tuesday of next week is forecast to be 8°C, a pretty dramatic drop in such a short time. The meteorological office is even talking of the possibility of sleep and snow next week which is what one would normally expect at this time of year except that we had been spoiled by this brief period of unseasonable weather. Anyway this has put pay to my Tuesday visit to the golf club.
Edward’ the tax adviser’, dropped in yesterday having checked over the monstrous tax demand that I received last week and sadly confirmed that it seemed to me okay. At least I will not have to find the money that they will merely deducted at source from this year’s pension.
Heard from and Anne and Geoffrey Waite, old Australian friends from the mid-50s who I stayed with at Barwon Heads, Victoria on my last visit they are coming to see us towards the end of May and will probably stay at the. Cricketers B&B at the gate. They have made a number of visits here over the years, the earliest being recorded by a photograph of hands little girl (as she was then) and a five-year-old miles, clamouring about on the climbing frame over the sandpit which was located close to the kitchen window. It will be great fun to see them both again and I any regret that I will not be strong enough to devote the time that they did with me in Australia, to showing them around and giving them a good time
29 March 2012
All’s well that ends well. After that flurry of telephone calls yesterday morning, the last one I received, in fact the last two, confirmed that the pressure cushion had arrived and indeed was delivered to me late yesterday morning. I was curious to know how this was achieved without Holly wheelchair knowing anything about it as they were supposed to be the suppliers, I know not but I am just thankful that this particular saga is now over, or so I thought. (The answer was that Holly’s did not provide this cushion but it had come out of the NHS store.)
I know other patients, and indeed their carers, will understand why he I am making such a fuss over a cushion. Quite simply sitting in the same position for 11 hours becomes very uncomfortable even for a fit person but for someone who cannot even shift the weight at all, it becomes extremely uncomfortable or even painful.
Anyway, when we unpacked this pressure cushion it was like nothing we are never seen before. Something like 144, 3 inch high, plastic tubes controlled by air from a pump valve at each corner. This one was not new, which is fair enough, and came from the NHS stock. However, as the Internet details explain it comes in 13 sizes so it a precise fit is quite clearly important. Also, if I had purchased it personally for £650, I would expect it to be fitted properly. As it happened my OT, who was working to a very busy schedule, kindly agreed to pop in and do her best best to fit it for me. This comprised adjusting the of some of the tubes after putting her hand under my bottom whilst I sat on the cushion. Not very scientific! Having sat on this cushion for a couple of hours I found it more uncomfortable than the previous one so had them swapped around again and will have to do battle tomorrow to try to get one of the right size.
Our visitors today comprised Ba and Rosemary, two old friends of Alice’s, who came and sat with me for an hour before the 12 o’clock call. It’s very nice of people to want to come and see me and check on my progress but it is a blessing that we are able to restrict the visit to an hour knowing that our carer would appear around midday. It’s not that I don’t enjoy their company, I do but if I have to talk from too long and yet exhausted and then start panting for breath.
After lunch, Lee, the aerial man arrived to check it out our satellite dish as over the last couple of days the pictures had been pixelated. After scaling the roof, he appeared holding l what looked like an expensive component and explain that it had been taped in position and the socket which received it was broken. (Or something to that effect which required emergency tape) I never thought to ask him who he believed was a person who used tape in the first place as the only person who had ever gone anywhere near it when it was installed was him!. As usual the guarantee had run out and we have to foot the bill. I asked him about the government advertisements telling old-age pensioners over 75 or disabled that, they can be switched from analogue to digital, free. Did this include a satellite dish I asked, and was told that it did not. If that’s true there will be a large number of elderly people who, not being able to afford a satellite dish will lose their television picture completely when analogue is finally turned off. I really cannot believe that to be the case. Apparently, according to Lee, we are entitled to have another TV point fitted, entirely free, due to our age of my disability. We might take advantage of this and have a point put in the skirting opposite the end of my bed, just in case. (I discovered later in the day, after speaking to the government body set up to deal with this that we could qualify for the whole package but could not have a single TV outlet fitted!) in I always using the 800 and
Having put in a call to my OT earlier. Lynne, kindly agreed to squeeze us in between other appointments and fit the new cushion for us. In the event this seemed to me rather a hit and miss procedure whereby she let some air out of a particular quadrant and tested it by putting her hand under my bottom. Not exactly scientific compared with the much less expensive cushion fitted to my wheelchair which was adjusted according to figures produced on a computer pad. I rang the local suppliers of the wheelchair cushion and was told that they do not provide anyone to come out and adjust either the wheelchair cushion or the cushion for the lounge chair. I then rang Roho’s head office and was told that that they do not have a local rep. who could drop in and check these two cushion over for me.
However, they would send me some more detailed sitting directions. In the event my OT rang, and learning that I was not happy with the size of the cushion she had delivered, said she would see what else was available and come back to me. In the meantime I am back on my wheelchair cushion, I hope temperately, fitted to my lounge chair. What is saga!! I never would have believed that something as prosaic as a cushion could possibly figure so largely in one’s life the day while that’s the difference between being fit and having a terminal illness.
I have always faced up to problems when they arise even, if in doing so, it creates more aggravation but in the end honesty is the best policy. Click here to see what happens when you try to avert your responsibility by not being honest.
28 March 2012
I had a call first thing this morning from the local surgery saying that an appointment has been made for me at the Bishops Stortford hospital to have my cyst dealt with. No date but at least we can now organise It ourselves.
Then later in the morning, a call from Papworth Hospital, confirming that I still intended to come for my appointment. I suppose from time to time they lose a patient between appointments are just wanted to make sure that I was still in the land of the living. Then they asked the sort of questions you would expect from a first consultation, not the seventh or eighth. What I be collecting the Oximeter or should they deliverer it the Friday before? When I asked if they could confirm they had arranged for transport, they said they had no record of such a request, although everyone lovely seven or eight check-ups and use their ambulance service. You would think the by now they could record it envelopes as a matter of form.
‘ My lovely’ was going to London for the day and set off just after the 7.30 girls arrived, in order to give herself a good full day. Amongst other things she met o ur daughter-in-law, Kimberly, at the Royal Academy to view an exhibition of the German painter, Johan Zoffany (1733-1810) and then they lunched together. She was concerned that I would have. Long period between the lunchtime call and the the time she got home, so she organised one of the Ross Nursing team to drop in 3.30, for which, as it happened, I was very grateful.
Shortly before this 3.30 call, Rita, one of the senior office personnel for Ross nursing, came to see me to discuss the last evening call. Most in the beginning we had a 930 call as the weeks have gone by I’m gradually getting more fatigued and so we decided to change it to 9 o’clock. Ross nursing were quite happy with this and it worked well enough for the first few weeks since then seems to run completely awry most nights now. Most times they turn up at 9.30, a couple of times, at 9.15 but rarely at nine o’clock. Apparently Ross nursing are run off their feet at present and simply cannot get near permanent nine o’clock slot. The problem is that 830 is really a little too early, for two reasons. Firstly, I do not want another hour in bed as I can only just put up with the pain in my joints for the current time and secondly, but not of great importance, is that if we are watching the programme on television it is most likely to end at nine o’clock and we would always miss the end of it. Anyway, Rita says she will do what she can but in the meantime I will just have to put up with the later time.
The saga of the pressure cushion for my NHS lounger continues I cannot remember with whom I initially raised it, it may have been my MND team, in any case I was told that the right person to deal with it was my Occupational Therapist. Accordingly I made the request to her some weeks ago. Two or three weeks ago I heard from someone from the Cambridgeshire Community Service, who assured me that he would find the right person to deal with my request and would ask them to ring me. Yesterday, a lady called Jane King . from PALS (Patient Advice and Liaison Service) telephoned me clarifying my request as it had not been made very clear to them from the Cambridgeshire community people. As soon as I confirmed it was for a pressure cushion they said that will be dealt with by a referral from my Occupational Therapist. So that’s where I was, weeks later when I started. In any event apparently the cushions are provided by the same people who fitted one onto my wheelchair, Holly Wheelchair service, so I telephoned them any to learn that they had not received a,, request for a cushion for me. I then tried to speak to my OT but the telephone was out of order, so I must continue the chase tomorrow morning.
I friends often ask me how I spend my day having completed my blog and dealt with my e-mails, which usually takes until lunchtime. The amount of chasing and telephoning I need to do dealing with various pieces of equipment or medical appointments is very time-consuming and somewhere along the line I’m told that I must take a little rest which I do if time permits.
Beware all men when you make in your will for your funeral. Click here to see how one scheming wife used it to her advantage!