21 March 2011

A full day to start the week. Charlie Danger. A consultant to Ability Net, came to give me my last training session in voice activation. This time we cracked the question of adding media to the blog which was one of the main purposes of the training in the first place. The problem has been, however, that with the three different laptops, three different operating systems invariably the Voice Commands are slightly different each time making the whole process convoluted and more complex. In the event, the session went extremely well and Charlie was very helpful in finding ways around some of the more difficult problems which I face. All I have to do now is to be a good boy and follow his written directions and not to lose patience and resort to using my one remaining finger!

Looking at the bigger picture the situation in Japan is still extremely serious following the earthquake and subsequent Tsunami. The confirmed death toll today exceeds 8,000 with several thousand more missing. As if that was not enough, everyone is holding their breath about the possibility of the nuclear reactors overheating and exploding and thus emitting radiation into the atmosphere. With several million people living in Tokyo only 150 miles away there is obviously a great deal of apprehension about the whole business. Most expatriates have already been shipped out.

I have just received a copy of the report following my recent assessment at Addenbrookes. I must say it was a very comprehensive summary of all aspects of my present condition, which is circulated to my GP and other interested parties. Jo also included a copy of a Living Will which I had discussed in detail with the MND coordinator, Jo,, on my recent visit, so that in the event of a crisis that leaves me unable to communicate, my personal wishes are respected. Basically, if I am a vegetable unable to speak or communicate in any other way and breathe without invasive surgery, then I would far rather fade away at home.

In times of stress you soon find out who your true friends are. So I have added an anecdote which I call Honestly, Humility and True Friendship. Click Seeds and read it for yourself

20 March 2011

It is still incredibly cold, even for March. A severe frost overnight but rescued during the day with an azure blue sky and bright sunshine. Unfortunately it seems it may get colder again next week which might mean I shall once again be robbed of the opportunity of returning to my Tuesday visits to the geriatrics at Worlington. I really cannot risk catching cold and therefore must wait until the temperature is at least in double figures.

The new painkillers, taken against the muscle and joint pain at night, looked promising, although, of course, it is early days yet. Originally I was taking 2 75 mg Rheumatac Retard tablets (Diclofenac Sodium M/R) together with 1 10 mg Omeptazale (Gastric Resistant Capsule) +1000 MG of paracetamol, which, surprisingly, were not very effective. I have now added 1 500 mg Naproxen and the early indications are that this combination is affective. However, I will report back after a week or so in case this is helpful to other MND patients who also suffer from muscular and joint pains in bed at night.

A truly sporting weekend. Four matches in the World Series cricket and the final three games in the Six Nations Championship in rugby. Being an unashamed anglophile I will only comment on those games which affected England and, what’s more, only on the two sports being played that really interest me. Apologies to the football, rugby league and other fans who saw their games as even more important than those I mention.

In the cricket Bangladesh were severely thrashed by South Africa who scored a modest 244 runs fot 8 wickets, but even this was far too good for Bangladesh who were all out for 78. This puts South Africa as head of their group and has ensured England’s place in the quarter-finals. In the rugby England needed only to beat Ireland to take the Grand Slam. To our shame we were beaten once again by Ireland (24-8). First cricket, now rugby, what is the world coming to!? This defeat robbed England of the Grand Slam-not having beaten all five of the other teams, but also of the Three Nations cup-wins – which would have been won by defeating Scotland, Ireland and Wales but still left them overall winners of the championship. With Italy’s defeat by Scotland it left them bottom of the championship table and therefore winners of the ‘wooden spoon’.. T piece of trivia that was mentioned during the commentary was the origin of the wooden spoon was what was awarded to the student who scored the lowest marks in the maths final examination in Cambridge in the 16th century.

To take the stress out of your day sit back and enjoy and hopefully your stress will vanish – To watch the fountain, click on the link below.
It was done by the same people who did the Bellagio Hotel in Vegas.

When it starts, click the “full screen button” at the bottom right of the “small screen” next to the time of the video (4 minutes).

Be patient and wait for the fountain to do its thing, and listen to the gorgeous duet performed by Andre Bocelli and Sarah Brightman.

http://www.wimp.com/dubaifountain/

18 March 2011

Today’s highlight was a visit from our dear friends Nancy and Brian Osborne. I’ve known Brian for the best part of 30 years since we both played golf together in the Chartered Surveyors Meeting at Sunningdale. We subsequently paired up to play in the East Anglian  Foursomes at Hunstanton, Norfolk, but to be honest, we never worked well as a team. The competition was played as a  Stableford (points scored against par) on the Saturday and people being pair off, in flights, from the highest to the lowest for match play on Sundays. Brian and I were you be so bad we were always knocking somewhere near the bottom flight, so much so that a whole new terminology was coined amongst the regulars asking whether you were AC or BC (after Cato or before Cato). You don’t have to be a rocket scientist to work out that if you were BC you must’ve played extremely badly on Saturday. The point being that the lowest flights went off very early in the morning. Anyway we played together in this for many years and met a great number of lovely people and it really didn’t matter that we never won many trophies although I do have a vague memory of having won our flight one year. One of our better years, I believe, when we were around halfway in the field of 14 flights.

Having known them both so long I fondly recall the birth of their twins, Tom and Kate, of whom have very fond. They both turned into a lovely children, or should I say young adults, and their parents can be justifiably proud of the way they’ve been turned out to stop Young Kate is currently in Uganda spending some months , between school and university, helping out in a impoverished village. Tom, who is a very keen and promising triathlete-he was one of the three swimmers in the Great London Swim, earlier this year – 3 Miles from Mark – which raised something in the order of £15,000 in two separate appeals for the MND Association- is doing a design course at Nottingham Trent University. They have another lovely older sister Anne. who is very talented and making her way in the fashion world. Mother Osborne, Nancy, is an extremely keen gardener and has recently been engaged as a researcher into various plants which will form the subject matter of the book being written by a friend of hers. The mere fact of being asked to undertake this task is a reflection of the high esteem in which she is held in this field.

The Osborne’s, following a now ‘beginning to be well-established routine’, kindly brought their own lunch and we ate it in my study, on our laps, which saves the whole exhausting business of transferring me through the house into the breakfast room. It works very well.

On the medical front, having tried antihistamine for my runny nose for over a week now, to no obvious beneficial effect, we are switching today to an anti-congestion,Otrivine, and, on the advice of the Papworth consultant, will try that for a week or so and then switch to Rhinacrom to see which is most effective. I really would like to crack this one as a runny nose morning and evening, particularly at bedtime when I have to wear the respirator, really is not amusing. I will report back for the benefit of any other sufferers.

My copy of Outlook turned up today and I was able to install it with the assistance of AbilityNet. It wasn’t so much as a problem of installing the actual software as importing my address book, with which I needed assistance. It turned out to be quite a complicated affair. Thank heavens I shall be back to some form of sanity after having to live with Microsoft Live Mail the past few weeks. Even this latest version of Outlook is slightly different from the earlier one so again: I will have to learn new tricks.

17 March 2011

In the event, we spend a very quiet day yesterday having our celebratory champagne dinner in the evening. Smoked salmon mousse to start with, followed by one of my favourite dishes, Lamb Shank with mixed roast vegetables, and finishing with, again with one of my favourites a raspberry pannacotta. We exchanged gifts. As is our usual practice’ my lovely’ produced some small thing she had found at one of her many antique fairs, for   which I was happy to pay, and give to her. At least, this way, she gets something she really loves. Apart from a handsome bottle of lime aftershave from Trumpers, apparently my present is still in the post.

At my recent MND assessment I had suggested to the specialist physiotherapist in attendance,  that maybe it was time for another visit my local physio, Mel. She came this afternoon and seemed quite pleased with my walking and approved of the number of excursions I made, but warned that if I got exhausted I should cut down the number of times I make these walks.. One of my main problems now is that my left foot, being the weaker of the two, occasionally gets caught on the edge of a carpet, or  the very small step that I have to negotiate. Mel, came up with a solution. Apparently there are some soft material foot sprints which raise the front of the foot and she is going to try to provide a pair of these for me by next Wednesday. Incidentally, I got it wrong in my report, on  my recent assessment, when I suggested that the first lady I saw was one of Dr Chris Allen’s junior registrars.

She was apparently, a dietician but having noticed my football like stomach made no suggestions on the food front so I can only assume she was satisfied with what I am eating and drinking!

England had us all on the edge of our seats yet again in the deciding match. In the World Series cricket, against the West Indies. Having knocked up a very modest score of 244 there was doubt the minute the West Indies took the field that we were unlikely to survive, particularly as the one of the West Indian openers, Gayle, demolished the early English bowling, scoring fours and sixes with ease. It really looked as though the whole thing was a foregone conclusion. However, as they have done so many times in the past, England came back from the dead up with a flurry of wickets and won in the end  by 18 runs. It just needs Bangladesh now to be beaten by the West Indies and somehow England will have slipped in to the quarter-finals.

16 March 2011

Today  is our 48th wedding anniversary. Last year I alluded  to my Autobiographical notes, where the full story of the event which led the girl who said, after I have proposed to her, if you were the last man on earth I wouldn’t  marry you, is recorded. As I have recounted this extraordinary love story many times before to my friends I believe, now is the time, to tell my readers, for in itself, it is inspirational, if no other reason to demonstrate how tenacity often wins out in the end. To be honest I had intended to wait until my dear mother-in-law was no longer with us as the last thing I would want to do was to upset her about the way her husband behaved on that occasion. However, as she is now fast approaching her 100^th.birthday and will probably outlive me, added to which as there is no danger of her reading this blog. I feel this is probably right time to tell this love story, whilst I am still able

In my Autobiographical Notes I included a short account, addressed to my eldest grandson Fred, of how I met his grandmother and subsequently married her. Here is what I wrote

…..so to the time that I met your grandmother, Alice.

She came to Aden, in the southern Arabia – where I was living at the time-  for the christening of her nephew William Garton-Jones. Major John  Garton- Jones, married to Alice’s sister Mary (Mouse) had been posted there and were living in the Ma’alla straight.

My first sight of Alice was when she appeared down the steps of a small twin engine turboprop aeroplane at Aden airport. Smoke from the engines drifted away to expose this slim angelic blonde creature in a safari suit . My heart missed a beat and I knew there and then that we were destined to have some form of relationship, possibly marriage.  This vision appeared the following Saturday, at the Polo club, on the arm of one Captain Bob Ackworth – a friend of mine to whom I lent my Alfa Romeo for the duration of this young lady’s visit. 

Three weeks later, after attending a farewell party on board ship, I found myself standing next to Alice on the quayside waving Bob’s regiment off to Hong Kong.  The least a gentleman could do was to offer this poor girl dinner, which I did and our courtship started there and then. Having said that, despite a number of romantic excursions, my advances were in vain. Indeed, when I proposed a week or two later, the dear girl said that ‘if I was the last man on earth she would not marry me’.

 She then she returned to Kenya, where she was working at the time, and I continued my courtship by audiotape, speaking to her every day on my tape recorder with classical music playing gently in the background only to swell up from time to time when I ran out of words.  This creature was so unimpressed  by my heartfelt communications that, I learned much later, to my chagrin, that having no means of her own to hear these tapes, they were played, each Saturday morning, to the amusement of all and sundry, publicly in the local record shop.

When a final fling two-week Safari failed to win her over (see under Travel & Excursions.) I began to get the message and to lose heart I suppose it was six to nine months later that I found myself in London for a few days before I went on a long anticipated three-week skiing holiday.  I went to the Albert Hall to purchase tickets for a concert. 

I then remembered that Alice lived close by, in Albert Court Mansions, and decided to call. She was living with sister Victoria and seemed pleased to see me.  After exchanging the usual pleasantries she said how sorry she was that we couldn’t spend time together as she was about to leave for  the weekend to go home to North Wales. She then asked me if I would care to go with her. I could think of no good reason why not as I was not due to go skiing until the following Friday.  I hired a car and off we went. 

When we arrived at Llanfendigaid, her parents home in Gynedd, Merioneth, North Wales, Alice insisted that we went straight out over the fields, down to the sea, for a walk.  Her parents were out so there was no need for the usual courtesies and nothing to stop us going straight off.  I pointed out that I only had my tropical suit with me, having come straight from Aden. There was a fierce  icy wind blowing.  Alice told me to help myself to a hat, coat and scarf from the pegs in the hall, which I thankfully did.

We had our walk and when we returned and found the parents were still out I went up my room to unpack. A short while after I heard a strange noise coming from the downstairs hall.  I peered cautiously over the back staircase and saw, what I believed to be a red-faced goblin dancing and chanting in the front hall. I had never been to Wales before that but had heard strange stories about Celtic folk. I called Alice and told her what I had seen. She went  to check and returned to inform me that the goblin, as I put it, was her father Col. Edward Nanney-Wynn.

Apparently, the Colonel had returned home and, having a particularly sensitive nose, had detected tobacco smoke. He followed his nose to his favourite cap which stank from the smoke from my pipe which I had smoked on our walk.  He was so livid that he had thrown the hat  onto the floor and was stamping on it, chanting “bloody tobacco” .

 You can imagine that I was devastated.  I had not even met the Colonel and yet have managed to severely upset him. I told Alice that I clearly could not stay and I started to repack.

A few minutes later the Colonel came up and we were introduced; we made our peace. However, the atmosphere was somewhat strained, particularly over dinner that evening

After the Colonel and Mrs.Nanney-Wynn had gone to bed after supper, Alice and I adjourned to the study where we sat, until the small hours, chatting and listening to music. At around 2 a.m.  the Colonel burst in demanding to know “ What on earth is going on here”. Did he expect us to be up to no good, I don’t know?. However, so put out was Alice, that she said “It’s alright Daddy, we are getting married”.  “Is that right”, asked the Colonel, ”Yes sir,”  said I, equally nonplussed.

The Colonel left to inform Mrs. N-W. When he was out of earshot I admonished Alice  but all she could say was “I had to say something”. That much was even clear to me. After all here was a man who could stamp on his own favourite cap over a little tobacco smoke.   However, I was not entirely comfortable with this sudden unexpected turn of events. Alice then said “ You still want to marry me, don’t you?” “,Well”, I said, “I suppose I did, but I had rather given up on the idea”. When both dressing gowned parents returned to offer their congratulations and inform me that the announcement would be in the following day’s Times, it seemed churlish to voice any reservations.

When the excited parents had left once more I told Alice that it was fine by me but there were certain problems. For example, I was due to go on a long anticipated three week ski holiday, desperately needed after a long spell in the heat of the Yemen. The only day we could get married would be Saturday 16 March, the day after I was due to return to the UK. The reason for this was that I had to be back in Aden early the following week  in order to pay my staff. Un-phased by this, the lovely girl said fine she would organise everything and we would be wed, as I suggested in three weeks time. It only remained, at least for me,  to draw up my list of guests.

We returned to London early the following week during which the Colonel arranged a small dinner party to which my mother was invited. It was on this occasion that the first hint of indecision manifests itself.  Your grandmother burst into tears and fled from the dining room. The Colonel followed her only to come back some half an hour later and say that the wedding was off. This was the first of a number of similar scenes over the next few days.

 So much so that before I left to go skiing the following Friday I made it clear to Victoria, Alice’s youngest sister, and my best man Quentin Seddon that I would be back in three weeks time and if the  wedding was still on we would get married on the Saturday, if not well, sobeit. I did return, as promised only to be told that Alice had had to be restrained on more than one occasion from sending a telegram informing me that the wedding was off. 

The wedding was due to take place at the fashionable church in Brompton Road, Holy Trinity, Brompton  and even to the point of taking our vows Alice’s family were not certain that she would ever go through  with it.

 Indeed I have pulled my mother-in-law leg over the following years because she never even bought a new hat for the occasion. However, Alice did say yes at the vital moment and we were wed. It was a wonderful wedding.  How it had all been achieved in three weeks I’ll never know. There were four adult bridesmaids, were in yellow gingham tops with yellow velvet skirts, and two two-year olds,  William Garton – Jones as a page boy, paired my goddaughter Amanda Prytz. The theme was spring and the bridesmaids and William were dressed in daffodil yellow gingham and velvet.

After a thumping good reception at the English-speaking Union in Charles Street, to which something in the order of 300 guests had been invited, we flew off for a very short honeymoon in Cairo and Rome.

 I could only spare three days as, explained earlier, I had to be back in my office on the following Tuesday in order to pay the staff.

Poor Alice, it must have been a bit of a shock even to her system to be suddenly whisked from the high life in London to Arabia. For example, when we arrived back at my flat in Khormaksar, my ‘boy’ (servant), Ahmed open the front door and, seeing me, fell to his knees wrapped  his arms round my legs and kissed my feet.  If the truth be known this was because he had once before been deserted by an expatriate. and I believe was genuinely pleased to see his meal tickets back.  However, I waggishly  suggested to my new bride that now she was in Arabia this is the sort of welcome it was my right to expect!

So, that was 48 years ago. I will not pretend that every minute of it has been marital bliss. I think the first 10 years were the trickiest, however, after that things have only got better and better and now I cannot imagine life without ‘my lovely’. I love her more than I did the day I married her, and I am only too aware that I fail to say so often enough and in my eyes, she is as beautiful as ever she was.

14 March 2011

The weekend papers and the daily News is still full of the disastrous earthquake and tsunami in Japan. It looks as though there will be at least 10,000 dead. I have the deepest sympathy for the victims of this calamity although, to be absolutely frank, I’ve never warmed to the Japanese as a race. They do, as we all know, have  facial similarity to the Chinese and indeed use the same Chinese characters in their writing but that, to my mind, is where the similarity ends. Where the Chinese, that I have met, have been warm and kind-hearted I have not had the same feeling towards the very few Japanese that I’ve come across. I may be very unfair to the Japanese as a race like only speak as I find.

I’ve only been to Japan once, to my recollection, and that was to Tokyo to stay a cousin of Alice’s, Robin Hare-Duke, the British Council. Robin and Yvonne had five children, four boys and a girl, all, except young Giles, were reaching that age when the hormones were rising and they were interested in the opposite sex. As a result three of them married Japanese and I’m sorry to say that, certainly in at least two of the cases, it  really didn’t work out. I do remember sitting with the young Giles, as he was then, watching sumo wrestling on the television, and the young lad explaining the finer points of what seemed to me to be a ridiculous struggle to buy one extremely fat man trying to push another equally morbidly obese man out of a small ring. These monstrously overfed giants enjoyed the same hero status as our top footballers.  My only recollection of the city itself was of an extremely busy anthill type of place with wires and poles everywhere carrying electric cables. This, no doubt was terribly distorted view of perhaps one street or other other of course, and was over 50 years ago. AI believe Tokyo is now a very beautiful modern city. Fortunately it was spared in this latest disaster.

What a pity there the modern world engulfed the traditional Japanese method of building exquisitely lightweight bamboo paper buildings, which of course would be unaffected by earthquakes or if they were, easily reconstructed.. Even palaces were built that way before it became necessary to start building massive stone and brick concrete tower blocks, albeit on a sort of rubbery springs which was meant to save them against the hundreds of minor earthquake they suffer from every year.

When Robin retired they came to live relatively close to us in the Sudbury, Suffolk near the beautiful Cavendish. Sadly neither of them lasted very long time and the young scattered to various parts of the world and even two of those have subsequently died.

13 March 2011

A really lazy weekend mainly watching the World Series Cricket in India and in between the Six Nations Rugby. Again, another nail-biting finish in the match between India and South Africa with  South Africa pulling off a totally unexpected win. In the rugby, a rare, if not a first time, win for Italy against France.

On Saturday afternoon my brother and sister-in-law, John and Anne Garton Jones (he of the Birfum, South Arabian, incident. see the St Valentine’s Day, 14 February 2011 entry). We had a thoroughly good ‘grumpy old men’ discussion about modern life and concluded that we had both probably lived through one of the best periods in history in terms of inventions,  scientific and health advancements and  67 years of peace

11 March 2011

Another international  disaster. This time a massive earthquake in Japan. Something in the order of 9 on the Richter scale.  Another instance of the movement of the tectonic plates. Japan is renowned for the number of earthquakes from which it suffers but most of them are fairly minor and the buildings are constructed with this in mind. However, in this case the earthquake was very severe, something like the third worst ever recorded, and the worst ever suffered by Japan. This was  followed by the inevitable tsunami and thousands have died. What with the massive flooding in Queensland and and the earthquake in New Zealand this year has not started off in the most promising fashion.

I scarcely like to switch from such a massive disaster to my own personal condition. My suffering cannot even begin to match that of the people in Japan but the object of this blog is, of course,  to follow what is happening to me in order to assist other MND sufferers and their carers. I mentioned my recent MND assessment when I told them that my arms and legs were getting weaker. I really can no longer lift my legs, a few inches  horizontally off the bed during my morning exercises, so today I stopped attempting to do so. I am also finding it difficult to turn over in bed despite the new WendyLett sheets, I’m just too weak. We’re going to buy satin sheet for the top sheet to see if that makes any difference. I am finding the walking, or rather dragging my feet one after the other, leaning heavily on my frame, is becoming a real trial and I just wonder how much longer I will even attempt it. I shall await the visit of the local physiotherapist and take her advice. My only reservation being, as I mentioned before, that if I do give up even the small amount of walking I do then it means using a hoist and much more work for ‘my lovely’, something I must avoid long as possible. Whilst I am having a moan I might just were mentioned that the last few nights have been very uncomfortable with the painful shoulder. On a scale of 1 to 10 think I am beginning to rate it as 8/9. The trouble is having had such a bad night I wake up in the morning feeling quite quite exhausted.

Let us complete the misery of this particular entry by mentioning yet another defeat by the English team in the World Series Cricket in India. This time they were beaten by Bangladesh after getting them for to 159  for 8. At that stage it looked as though the match was all over and that England would romp home, however, the two tail-enders hung on tenaciously and hit the winning runs in the penultimate over. Unless England can beat the West Indies, in their next match, they will be packing their bags to come home.

Kit came round to date this afternoon and we play another game of chess and then watched the end of the cricket together. Of course, I lost again. My biggest mistake was losing an early pawn. (When I first dictated this passage it’s spelt the word pawn as porn, so it shows you how carefully one has to read and voice dictated passage!) I have decided that next time Kit comes we will make it more of a lesson than a game, as it really is too one-sided at the moment. However, it was a pleasant interlude