24 August 2010

I arrived at the golf club today, having been driven by Kit, and need to find that ‘my lovely’ had forgotten to include my bag of tricks this for eating and drinking.  She discovered before I did and poor old thing went to enormous expense in sending them by taxi as she knew how much I relied on them.  Actually, I could have managed if someone had been prepared to feed me and I have been provided with a straw for drinking. However,’ my lovely’, being characteristically generous would not even consider inconveniencing me that way and to hell with the expense. What a girl!  The weather was  sunny but with  a chilly breeze.  Certainly autumnal.  This year seems to be a repeat of last  year when we had our summer in April and May.  I am really concerned because I have three days at Lord’s starting on Thursday with two guests each day.  It does not take much rain to stop play and with me being stuck in a wheelchair it’s not likely to be much fun..  I do hope I’m wrong as this test match could be a nail biter.

 

 

23 August 2010

My 2 mnthly check out at Papworth Hospital today after sleeping, last night attached to the Oximeter which, I understand, is designed to measure the amount of saturated oxygen in the lungs whilst one is asleep.

On the whole the results were fairly predictable. A general deterioration all round with a rather more serious drop, from 74% to 64% in my FVC. All of this indicates that I will almost certainly require some form of oxygen intervention sooner rather than later. I specifically raised with the doctor the business of flying to Thailand and he advised me to try not to sleep and also not to lie at lower than a 45° angle. I explained that the help on traveling business class was to have a flat bed. As the flight from London to Dubai is approximately 8 1/2.hours, with the two or three hour gap between the next onward flight to Bangkok, again another 8 1/2.hours, it is difficult to see how I am goinging to be able to keep awake for the 36 hours or so from door to door. In the past I’ve always had a generous supply of champagne before taking a couple of sleeping tablets and then lying flat for a few hours sleep. I would like to think I can do the same again.

The problem, as explained to me by the doctor, is that the amount of oxygen at 35 to 40,000 feet is around 15% lower than normal. Then, when you sleep you breathe more shadowly,again taking less oxygen, so with someone with weakened lung muscles there is a danger of a buildup of carbon dioxide. Maybe I can persuade the airline to let me sleep with an oxygen mask. I shall ask the doctor what he thinks about this idea.

I also raised the question of the possibility of having a diaphragmatic insert to assist my breathing. The Dr. explained that this was something that wasrecently invented in the US and he suspected that not many more than 40 such operations have taken place there. Apparently a hospital in Sheffield has begun attempting these procedures but again the operation is very new and in his opinion unproven. However, he will bear in mind the fact that I would be prepared to consider being a guinea pig if the opportunity arose and, indeed, I needed such invasive assistance.

21 August 2010

As my computer has decided to behave itself again I am attempting another entry.  There has been a complete shambles over the election of trustees to the  MND Association.  I submitted my application form, supported by two trustees,  well before the closing date of 11^th. of June.  I completed the form online  and then pressing the ‘Submit’ button at the bottom of the form.  I naturally assumed that this had been received but I never actually got a formal acknowledgment. I suppose, in that respect, I was at fault, although at the time I was fully engaged in other business. 

You can imagine my surprise then when I received a ballot form on Friday that did not include my name.  Fortunately, I was able to to check on my computer and confirm that I submitted my application at 12.01 on 6 June.. Naturally, I contacted the Association and this started the hare running.  I must say they took the matter very seriously and acted very promptly, taking advice from solicitors, auditors etc..  I felt very embarrassed at having caused this disruption in their normal working programme and, of course, the added expense of seeking advice. However, clearly something went wrong which needs to be avoided in the future.

After several discussions with the Vice Chairman of Trustees, I decided it was in the best interests of the Association if I  withdrew my application and hope, without any guarantee of course, that I might be to  co-opted at the first available opportunity whilst I am still strong enough to make a contribution.

. More bad news, England lost the third test to Pakistan by four wickets.  Having said that, it will make the fourth test, at Lord’s, starting next Thursday,  more interesting. With England being to 2-1 up in the series, it leaves the intriguing possibility of Pakistan achieving a drawn series, I believe, for the first time ever.

20 August

Utter frustration, there is a 30 sec. delay between me dictating  and the text appearing on the screen. For this reason I shall await the return of my newer laptop, hopefully, on Monday, before making any further entries. In the meantime, I thoroughly recommend reading the account of the Swedish trip – 1Aug-14 Aug

19 August 2010

Not a very auspicious start to my 77^th. year.  I managed to fall off the bed, at 5 a.m., banging my head heavily on the floor.  It ‘my lovely’ almost 1 hour to get me up and back into bed, using a series of low chairs and the rising mechanism on the NHS bed No harm done except for a grazed shin.  Later in the day my legs gave way in the hall and again I crashed to the floor.  This time we had to elicit the assistance off to build a working opposite to get me onto my feet again.  I hope that this is not the beginning of the end for my legs and that they were both just freak accidents.

18 August 2010

Another milestone. I made it !! It Is my 76 birthday today.  The sun is shining and the weather is fine, unlike yesterday when I went to the geriatric golf day and spent much of the time sheltering, from the drizzle,.in Griggs’ buggy.  Today, however was to be entirely different – a sunshine day.  Both ‘children’, Miles and Chloe, came down from London to celebrate the occasion. Smiler,  very kindly shouted us lunch at the Axe and Compass’  in Arkesden – very good it was too. We then sat, in the garden, in the sunshine, chatting with me smoking one of my best cigars, before ‘my lovely’ produced a scrummy chocolate birthday cake. Jane (the sheep) kindly called in, to wish me a happy birthday, and so joined us for tea.

I also had a number of telephone calls, during the day, wishing me a happy birthday, as well as half a dozen e-mails on the same business. How very kind of people to remember and take the trouble.. Personally, I am very bad on that score and tend, lazily, to leave such things to ‘my lovely’, who, unlike me, is brilliant and never forgets anyone..

As well as the splendid lunch and tea I was showered with presents including, from ‘the children’, another really good, ‘hands free’, telephone with enormous buttons, which makes it easy to use with my useless hands. Kimberley, Smiler’s wife sent me lots of delicious things to eat. Sadly, she could not be with us as she was working, as was my son-in-law, Karl.

Apart from her other presents, ‘my  lovely’ gave a bottle of Pol Roger which she insisted on opening for in the evening. I didn’t resist too much! Thus, rounding off a memorable day.

16 August 2010

I spent a very busy day catching up on all the things that had built-up whilst I had been away.  I also contacted AbilityNet who have arranged for the tea soaked laptop to be picked up tomorrow and repaired.

The most exciting event today was booking my flights, and those of the good doctor, to Bangkok for mid-October.  Michael is adamant that we go whether or not by then I am wheelchair-bound.  The resort in Hua Hin is fully prepared for this eventuality so we have decided to go for it.  I just pray I do not go to much further downhill in the meantime.h

15 August 2010

Although it is Sunday, and his mother-in-law’s 30th wedding anniversary, my good friend Duncan Rix, came around to sort out my computer for me.  Although he managed to get the picture the right way up there is undoubtedly damage to the keyboard so it will have to go back to Toshiba.  In the meantime I am reverting to my laptop to maintain this blog.  I spent what time I had left today editing all of the corrupted entries made in Sweden.

14 August 2010

After the good doctor had gone to the airport to fly back to Sweden, I spent the morning struggling with my upside down,  tea encrusted, laptop.  It was all very exhausting and in the end I abandoned the task.

I think this of  an appropriate  point at which to mention my current physical state at the end of this holiday.  I believe my right arm is very slightly weaker as there were occasions when towards the end of a meal I needed to be fed.  Legs, again, maybe just a little bit weaker but I’m still managing quite well with the gutter frame.  The main difference is in my breathing.  Real exertion is starting to leave me slightly breathless.  I will know better on this score when I go to Papworth Hospital next month. 

Having said that, despite being advised by the doctor following my last visit to Papworth, that I should ask the airline to provide oxygen, the good doctor said, not to bother, nor did I.  Apparently, he observed me during the two flights breathing slightly faster than normal but nothing to worry about. Apart from that not much change

13 August 2010

This morning was spent with the good doctor packing for both of us before leaving around midday for the airport.  The transition from the farm, the flight and drive home, picked up by Barry, all went without a hitch.

The good doctor only staying overnight, was soon on his way back to Sweden for another five days, with son William, before returning to  Australia, via Heathrow, London.. As I said before, a restless soul but one who has been magnificent to me,  looking after me like a mother hen without the slightest outward sign of irritation.  What an extremely  lucky man to have such a splendid friend.

Having said all that, there is no place like home and more important, nowhere I would rather be than with my lovely’.

On the day I arrived in Sweden, I included, on my blog entry, a quotation from George Bernard Shaw which I thought that my readers would find inspirational and in some degree reflected the good doctor’s attitude to life and therefore was appropriate for me to quote. As I continued with the delightful break, only made possible by the unselfish attention given to me by Michael, I cannot resist including yet one more quotation which I found on his desk.

This one from Friar Aengus Finicane, former chief executive of Concern,  which I gather is an organisation set up to help impoverished Africans. He wrote

“ Do as much as you can,

  As well as you can,

  For as long as you can,

  For as many as you can”

I think that sums up Michael’s philosophy as well. He helps so many people and I am very fortunate to be included amongst them