I managed OK after my fall yesterday, so no real harm done.Â However I’m rethinking the two visits that I was going to make to the Arbitration Club, in London in London next week.Â Keith Kirkwood was originally intending to accompany and assist me but now, unexpectedly, has to go to New Zealand on business and I’m not sure that I could trust anyone else who has not had the experience already.Â Also Keith’s absence is a blow for the 20th Anniversary Dinner all the Arbitration Club, scheduled for the 23rd September, because he is the organizer and todate, apparently, he has only received 56 firm bookings.Â For the 15 years of I ran the dinner I never failed to fill the 225 places in Drapers Hall.Â There is still another three weeks so I suppose I might be being a little pessimistic but I have every confidence that KeIth has, and is, doing his very best to fill the place.Â
Readers will remember the saga of getting the Essex County Council to agree to provide a fingernail cutting service for the elderly of the county, through the good intervention off Sir Alan Haselhurst MP. In mid-July I received a letter from the Essex County Council which in essence said that the matter was not as straightforward as we were led to believe when told that this service would be introduced.Â
I telephoned the Official concerned yesterday but as told, in true bureaucratic style, that there is still some negotiating to do with the Patients Can’t Trusts [PCT's] before the service will be up and running.Â The big problem to resolve is whether or not the podiatrists will be able,or indeedÂ allowed, to cut fingernails as well as the toenails.Â No doubt this will require a number of committee meetings!.
The other episode with which I had to deal with today was the unsatisfactoryÂ business of my Â visit to the community hygienist to have my teeth de-scaled, which turned out to be a fiasco. (See 12 & 26Â July entries). As instructed, today I telephoned the Tooth Fairy (Teeth Commissioner) to whom my private dentist has already reported the facts.Â By the sound of itÂ there will almost have to be a public inquiry before I get my teeth seen to.Â Again maybe I’m being a little pessimistic but we will see.
No sign yet of my laptop.Â I must say I am disgusted with Toshiba for charging almost Â£400 to deal with the slight spillage of tea on the keyboard.Â I do not know precisely what the ‘repair’ involved except I did hear mention of a system board.Â Even so the cost of these components to Toshiba must be minimal and to charge an amount which exceeds the price you would pay for a brand-new computer with 320 gigs of hard disk and three gigs of RAMÂ seems to me to be scandalous..Â But then what choice does one have?
Apologises to my readers for this whingeing, rather negative, entry but then, as we all know, it’s good to get these things off your chest.
Today, I finished the draft of the speech which I started yesterday, for the 20th Anniversary Dinner on the Arbitration Club, on 23rdÂ September.Â This was a rather poignant undertaking as this dinner will be my swan song, almost certainly from formal occasions, of The Arbitration Club, of which, for the next two years or so, I remain, The Founding President.
Yesterday, I updated my profile on me Patients like Me webpage.Â It was alarming to see that my Forced Vital Capacity (FVC)Â a year ago was 93% and is nowÂ 64% having dropped 10% in the last couple of months.Â When it gets below 50% it is considered to be’ severe’.Â My overall condition is measured by the FRS which covers a whole raft of information, but is described generally as -Progressive rate percentile which is now at. 32.Â Two months ago and it was 34 and is considered to be severe when it drops below 25.Â In summary, the doctor at Papworth Hospital acknowledged that ‘overrule the trend has been one of a gradual decline’. The next visit to Papworth on the 8 November will be an interesting one in the meantime Carpe Diem...what else can I do?!
5 September 2010
We went out to lunch today to a modest local cafÃ©.Â We sat outside, braced against the autumnal chill, so that I could smoke a small cigar.Â When it came to ordering lunch it had a Fawlty Towers ring about it as, from a very limited menu our first two choices ‘were off’. I felt like asking the poor waitress if they could make me aÂ Caesar salad !! (You have to be a Fawlty Towers aficionado to appreciate that reference) Never mind it was an outing which caused us a great deal of fun and laughter.
I then went back and spent the afternoon watching England play Pakistan in the first of the 20/20 series which England won by 5 wickets with 17 balls to spare. Actually, I was quite impressed with the performance of the Pakistan team considering the black cloud of corruption that is hovering over them.. I couldn’t help reflecting on the attitude of society which gives predominance to a minor cricket match, over the misery of the millions of poor souls suffering from the floods in Pakistan
To cap my day, in checking through my bank statements I noticed that my last three quarterly pension payment from Canada Life (Formerly Equitable Life) were approximately 30% lower than they had been in previous years.Â Why do these things always happen on a Sunday when it is impossible to contact anyone for an explanation?
6 September 2010
I got to the bottom of the swingeing reduction in my pension payments, by ringing the Inland Revenue.Â Apparently, it’s all to do with a tax change resulting from my SIPP (Self Invested Personal Pension)Â kicking in last August.Â Just to cheer me up the tax inspector told me that an assessment was on its way for underpayment of several thousand pounds.Â This, on the day when it was announced that the Revenue had made errors inÂ millions (?)Â taxpayers assessments which will result in them having to makeÂ substantial refunds.Â I just hope it turns out that I am one of them.
Still noÂ Toshiba so I decided to go into battle direct with them rather than getting through the MND Association.Â It will be three weeks tomorrow since the laptop wasÂ returned to them with a promise to try to turn it round within 10 days.Â I spoke to a customer services agent who explained that the 10 day offer is subject to’ unforeseen circumstances and availability of spares’..Â The spares for this bog standard laptop were apparently not available and had to be ordered from Germany.Â In the first instance the customer service agent was unable to give me any idea when those spares would be delivered and the repair affected.Â As the spares are basic components I find this very hard to accept, and told him so.Â As I did not hear back from the customer services agent, as he had promised (no wonder he refused to give me his family name) I called again this ofternoon to be informed that the sparesÂ had arrived and I could expect the laptop to be returned ‘shortly’, but could not be given anything more definite than that..
The lovely OT, Sarah Moss, came to demonstrate the hoist today but unfortunately the battery was not sufficiently charged so she will return for the demonstration on Thursday.Â This was a precaution on my part as I have a sinking feeling that we may need to use it sooner rather than later.Â We also discussed the electric wheelchair which I have already driven and presumably is being retained for me.Â ‘My lovely’ is anti-as I think she believes I will use it like a go-cart and knock down some poor innocent child in the street.Â However, I’m glad to say that Sarah was on my side and agreed that it would give me a degree of independence which the manual wheelchair would not.Â Alice was quite reasonably concerned that I would not be able to control the direction of the chair with my dead hand and weakened arm.Â However, as I was aware, and Sarah confirmed, I will be able to control the direction using my chin, or someÂ means. other than my hands, which I think placated Alice.Â I think we will probably have the wheelchair delivered shortly and ramps fitted at the front door and the step up from the bedroom to the bathroom so that we are ready when the necessity arises.Â The only area remaining which causes are some concern is the bathroom.Â At present I can be lifted by ‘my lovely’ from the loo using the lifting belt but it is not going to get any easier and that could come a time when this will be too much for one person. (Only last week, Jane there Sheep had to call for help from outmanned in the kitchen from the local pub. Jane claims it is more difficult for her and for Alice as she is not so tall.). Â There is also the business of the shower.Â At present I can stand leaning on the but gutter frame when I wheelchair-bound I will need to use the special plastic bathroom chair, provided by the NHS, butÂ how to get in and out of it?.Â The solution for both of these potential problems could be a horizontal hoist which Sarah is going to look into.Â Again not immediately necessary but better to be prepared.
Whilst on medical issues I should mention that I received today a long letter from the NHS dental service concerning the unsatisfactory nature of my visit to the Saffron Walden Community Hospital dental department in July.Â I now have to make a formal complaint which I am prepared to do for the benefit of others who might find themselves in the same position.Â They have also kindly agreed that I can have a domiciliary visit to have my teeth descaled, for which I am truly grateful…
Another geriatric golf day. I very nearly didn’t go because of the appalling weather forecast, however, in the event, we had wall-to-wall sunshine all day. I rode with Griggsy who played a single against my good friend John Gray. It was a happy three hours and we sat outside the clubhouse, before lunch, enjoying my favorite cigar, Monte Christo No. 2. After the severe shock I received last week in collapsing at the entrance door of the club, I was much happier today as, our secretary Scott Ballantine, was on parade and his superior strength gave me a great deal of confidence each time he picked me up going and coming from the clubhouse. He has very kindly raised the problems of access with the club Council, who have generously agreed to install a ramp at theÂ Mens entrance. Hopefully, not specifically for me, as I’m sure there will be other members who will need to take benefit from this in the not too distant future..
We had two lifting problems today. One, before I left for the club, in the early morning, to get me off the loo, and the second on arriving home, when Jane ‘the sheep’ and Kit were simply not strong enough to raise me to my feet. On both occasions we called on the young man opposite, Luke, who is building his own house, who willingly came to our rescue. Having said that we cannot possibly continue to rely upon this young man’s goodwill. We believe thatÂ a hoist system in the bathroom, currently being considered by OT, will solve that problem, and, indeed, the difficultly we will have to face when I can no longer stand, that of getting me in and out of the shower chair. In the meantime ‘my lovely’ has come up with a clever solution which I do not intend to spell out here..
Barry Pritchard, from the Springboard Housing Association, came round this ofternoon with Neil Butler, the builder who installed our wet room, to check out the minor defects which he happily agreed that he would remedy in the near future.
England won the second on the 20/20 series cricket against Pakistan byÂ a comfortable five wickets, having bowled out the opposition for 89. A fitting end to the international cricket season. Finishing with England on a high with their next challenge being the Ashes in Australia.. However, it does rather concern me that there was as much mediaÂ coverage about this cricket match as there was over the abect misery being suffered by the millions in Pakistan today, as a result of the floods.
Some very good news for my friend Kit’s daughter, Rosamund Lupton.Â Her first novel was published on theÂ 2 September, in the UK, and in the first week, WH Smiths apparently sold 22,000 copies.Â I gather that the book has already been translated and published in a number of other languages and that negotiations may well proceed for TV and film rights.Â A genuine success story for this first time novelist.Â The book incidentally is calledÂ Sister and, although ‘my lovely’ has bought a copy, I shall probably get one online and read it on my laptop.Â Congratulations to Rosamund.
Today I was supposed to be at the Law Court Branch meeting of the Arbitration Club to witness the handing over of the Certificates to the successful swimmers in the Great London Swim Event.Â But, for the reasons given in an earlier entry about the difficulties in travelling on the train, I had to forego that pleasure.Â However, the most important aspect of the whole affair is that these three brave souls raised over Â£6000 for the MND Association plus another Â£8000 for the Heaton-Ellis Trust, which is funded by the MND Association to carry out research into this insidious disease.Â So, a good result all around..
I spoke today to Guy Smallman, HDTI, Coventry University, about the progress of my recently patented healthcare product.Â Although the first people he showed it to were not interested in pursuing the idea he has at least two further major retailers who are certainly giving it serious consideration.Â I should know something more positive within the next couple of weeks.
Thank goodness my electric UpEasy cushion was returned today, or rather a new replacement for the one sent for repair.Â It’s amazing how Â one comes to rely on these gadgets. I often wonder how I managed before..Â Of course, the problem now is that we depend a great deal upon electricity.Â I shudder to think what will happen in the winter if we suffer from the usual number of power cuts.Â Who knows where I might be suspended, in midair on a chair or hoist.Â The longest electricity cut we had last year lasted for 27 hours.. At what stage does one call 999?
After completing my work I treated myself to a lazy day and watched the first of the 50/50 over cricket matches between England and Pakistan.Â I suppose after 60 years of work I’m entitled to the odd hour or two off!Â England performed reasonably well with no-one in particular shining with the bat except hero Davis with his 87 and possibly Trott with his 59..Â England finished with a workmanlike 275 all out from the 41 overs, rain reduced match. Â Ajmal. the Pakistan bowler took a creditable 4 wicket for 58.
Pakistan were up against it from the beginning having been.. bowled out for under 100 three times already on this tour. For a while it looked as though they were in with a good chance but inÂ the end only Â managed 250 for 9Â and England won comfortably by 24 runs
It seems that I might well have underplayed of my friendâ€™s daughterâ€™s book Sister. I suggested that she sent details to my friend in Dubai, Jeremy Brinton, who is managing director of Magrudy’s, who runs 13 book shops in the UAE.Â He may well be interested in stocking this book -nothing ventured nothing, nothing gained. This is what she wrote:.
.Â Â Â Â Â Â Â Â Â Â ‘…about our daughter’s novel, a psychological thriller. It is her debut, called SISTER by Rosamund Lupton. She has been extremely fortunate to be selected by Richard and Judy to be one of the eight Â Â Â Â Â Â books chosen for their new Book Club this autumn, and SISTER is the first title to be promoted for two weeks. In the first week (2nd September when it was published – 8th September) WH Smith has Â Â Â Â Â Â sold 22,000 copies, and in the first three days there were sales of 15,695 overall. This put her 12th in the Bookscan paperback fiction list for the week 29th Aug – 4th Sept which is a great start. She has also been translated and published in Holland, Germany and France (so far the Book Club edition only), and the USA will be publishing it early next year. BBC Radio 4 have chosen SISTER to be the Â Â Â Â Â Â Â Book at Bedtime reading from 20th September for two weeks.’
Still no sign on my laptop so yet another call to customer services at Toshiba.Â I ascertained that the repairs, so-called, had been carried out (probably not more than 15/20 minutesÂ to replace standard component parts) and that it will be dispatched within three working days.Â Bear in mind that Toshiba were told almost a month ago when they picked up this laptop, that it was from a disabled person who totally relied upon voice activation for written communication.Â Even at this late stage you would think they could have expedited the return, but no, it all has to grind through the system.Â I am not impressed, indeed, even whenÂ I informed the customer services agent that I had catalogued the whole sorry saga on my blog, which is read daily by a round 2500 people, throughout the world, they did not seem to concerned.
My OT, Sarah Moss popped in as ofternoon with a new gutter frame.Â The original one had developed a rather alarming bend in one leg, no doubt from a me leaning heavily on it when negotiating steps.Â She has made an application to Social Services for some sort of hoist for the bathroom which, at the end of the day, I cannot see how it can be turned down, bearing in mind that before very long I will have lost the use of both arms and legs, and even if I resorted to a commode, how would I get up from it?Â My only fear is that Social Services will consider the proposition but only after an assessment onÂ site which may well take several months, which is something ofÂ which I do not have a superfluity.
I wonder how many of my readers noticed the nonsense included in yesterday’s entry?Â One young man, Tony, in China did and sent me a rather cryptic, if slightly cheeky, message ‘Happy Teachers Day !!!’ which, at first, foxed me but then led me to review the latest entry.Â What had happened was that the telephone had rung whilst I was dictating it.Â I failed to notice that the microphone was still alive and accordingly it picked up snippets of conversation and inserted them into the entry.Â What one has to do is to instruct the microphone either ‘to go to sleep‘ or ‘to stop listening’.Â Most of the time it obeys and the little phallic like icon will move from erect, to 45Â°.Â On the other hand, sometimes seems to have a mind of its own and takes no notice.Â Anyway the nonsense, or gobbledy-gook as I call it, was only there for four hours, thanks to Tony, so hopefully not too many people noticed it, or if they did see it they might have thought it was my rather eccentric style!Â Who knows? I therefore plead in advance, forgiveness and understanding for any errors or omissions in my entries.Â I’m sometimes too lazy to check them carefully.
I suppose I should reiterate what a lifesaver the voice activation system is for me.Â My hands are practically useless now and certainly I cannot hold down more than one key at a time, which is necessary in giving the computer a command.Â For example, to bring up the Task Manager it is necessary to pressÂ three keys at the same time, Control, Alt & Delete. I can do this through by means of Sticky Keys, which enables me to press one after the other in sequence.Â My problem is that as I still have one rigid finger on my now, almost dead, right hand, I am too lazy to attempt to correct the inevitable errors in the dictation by voice — I still prod at the keyboard.Â Although, Dragon Naturally Preferred 10, is a wonderful programme and can give you around 98% accuracy, speaking at your normal rate, occasionally it does misunderstand what you say and requires correction.Â Although in theory one just has to say correct, whatever word it is that is wrong and you are offered a choice of five alternatives and can select one by saying ‘choose…’, the word you want is not always there.Â No problem, you just say ‘spell that’ and having spelt it, say OK and the word is replaced.Â This works most of the time but, as was the case today, the system totally misunderstands what you were saying and might, for example, insert a table, or something similar.Â In trying to delete the unwanted insertion by voice can be a bit of a nightmare, thus myÂ resorting to the finger.Â However, I have been assured by AbilityNet, the ComputerÂ Aid arm of the MND Association, that I can be fitted with a prodder, either from my chin or forehead, once my arms or hands have given up the ghost for good.Â To this end I have asked for another training session to prepare for that eventuality rather than waiting for the day I wake up and find I can no longer manage.Â Better to practice whilst I still can use my finger if I get frustrated.
Yesterday, was the ninth anniversary of the unforgettable tragedy the 9/11 destruction of the twin towers in New York with the appalling loss offer life.Â
It might be considered apposite that it coincided with the last night of the Proms, which, ‘my lovely’ and I, listened to and watchedÂ with a great deal of pleasure, in the evening.Â Apart from some delightful Smetena,Dvorak and Vaugh-Williams there was the usual party atmosphere for the end of this two months season with all the fun and jingoism of Land of Hope and Glory & Jerusalem.Â To me, at any rate, it was precisely the time to sing such inspirational songs to celebrate humanity’s ability to survive such tragedies, be thankful for our blessings and look forward rather than back.
In a similar vein we have recently past the 70th.Â Anniversary of the Battle of Britain, the turning point in the last war, where countlessÂ ordinary people showed immense courage and fortitude.Â Again a reason for celebration.
Apart from the 12,000 PromenadersÂ in the Albert Hall, these final songs, including You’ll Never Walk Alone, were sung in combination with 30,000Â people in Hyde Park London, 8000 in Cardiff, and 6000 each in Edinburgh and Salford. (I hope I’ve got the numbers right).Â Probably one of the largest choirs ever to perform in the world.Â A happy note on which to go to bed, albeit conscious of the deep sadness still being suffered by the friends and relatives all the thousands of people lost in the 9/11 tragedy.. Always remembered.