One cannot imagine a more perfect winter’s day to walk round a golf course although the temperature was little more than five or 6Â° with the sunshine it felt much warmer and what a delight to be out. Again, I restricted myself to 15 holes and as a result just managed to preserve enough energy to feed myself at lunch, albeit rather clumsily.
Went to lunch in London today, with my good friends Rowan Planterose and Danny Gowen.
Whilst I was writing my blog today I received a telephone call from Dubai and my dear friends the Brintonâ€™s – Jeremy and Susie. They were barbecuing with two other friends of mine, Roger Goodwin and Paul Newman, having spent the last three days at the Dubai Sevens. As I had been to this event for six years (only missing last December) and stayed with the Brinton’s, I must confess to a twinge of envy at not being with them. How kind of them to spare me a thought and raise a glass to their â€˜Ronnie Biggsâ€™ lookalike!
Last night I slept with the Oximeter clipped to my forefinger in preparation for the respiratory and expiratory lung tests at Papworth Hospital today. I went through the usual test and nothing much seems to change except the oxygen level in my lung blood has gone down from 95 to 92.5 which may or may not be as significant as the oximeter, which measures the level, can apparently, vary by up to 2%. However, having said that the consultant told me that they would know better in three months time when they measure the level again. Below 90 apparently is a point at which some ventilation intervention could be helpful. We will see.
Went on the usual walk around the golf course with the geriatrics today. Still wore my kilt and thermal draw is which I may have to abandon in favour of my plus fours, which I have just had adapted with Velcro and loops, as frankly, the kilt was getting a little bit chilly.
On Friday I went to London and had lunch with two old friends in a rather smart London restaurant. I met them at their office and before we left to go to lunch I asked the senior partner to accompany me to the disabled lavatory to give me a hand. I managed to undo my trousers and gain access in order to have a pee and cover myself up afterwards to a reasonable degree, by using the loops I had had sewn onto my underpants, but after that I needed help in adjusting my dress — my hands are simply too weak to pull up and adjust my trousers. The senior partner was very jolly about the whole process and there was no loss of dignity involved.
When we got to the restaurant my hosts donned on my apron,Â fitted with my two wrist supports -one fitted in with a shoover, another little gadget I designed and had made – the sort a baby uses to push food onto its spoon – and a newÂ â€˜inventionâ€™ of mine,Â a wipeable cloth sleeve for Â my left arm. I thought up this one because I’m having difficulty raising my right hand to my mouth with a spoonful of food. However, if I assist the arm by pushing it up with my left one, I can feed myself- thus the need for the sleeve, to protect my clothing, againstÂ any food which spills off the spoon.
Having had this new sleeve idea that got wondering — why did I have to think of it and why couldn’t I have been told by somebody else. I am not the first person to have weak hands or arms from MND and there must be thousands of others who have experienced the same difficulty and have come up with solutions. Where are these recorded?Â Why for example was I not given a leaflet with lists of practical suggestions on which other sufferers and carers have come up with. They may well exist and if so why have I not told?
I look on the MND Association website and find a HintsÂ &Â Tips section which refers to a number of Â support organisations. Yes, you can be directed towards branch groups and volunteer bodies to assistÂ you but, at the end of the day, it is the MND sufferer, or the carer, who has to come up with a question and seek the answer, or reinvent the wheel. My GP is always happy to refer me to an organisation, or consultant, provided I initiate the enquiry but she does not have any knowledge at all about MND, nor indeed it seems does anyone else in the practice.
I note, from the Association’s web page, that there is somebody called a Regional Care Advisor (RCA). Personally I’m not aware of such a person unless it is the lady who runs my MND assessment unit at the hospital. I would have hoped that this RCA was the person who gets an MND patient seen quickly by one of the many other services available to assist. The problem is when it comes down to it an MND sufferer has no greater right to a speedy referral than any other patient, despite the fact that his/her lifespan might be extremely short, and such referrals have to be made through the GP. An appointment with a physiotherapist, might take six weeks. Presently, I am trying to get a consultation with the Orthotics Department at my local hospital but am told Â there is a 35 week waiting list. Once I have had a consultation, and perhaps persuaded them to make the lycra gloves, which I believe could be of great assistance in extending the use of my hands, this may take Â several months and therefore, at the end of the day, not provide the help I need now.
(Postdate entry -12 Dec. It seems that I maligned the NHS . Having spoken to the consultant on Thursday I received an appointment but this morning for New Year’s Eve.)
AbilityNet – for whom I have the highest regard for their generosity in providing equipment to assist sufferers to use their computers Â – take far too long between initial consultation and the training they provide to use the equipment. In my case 4 months or so. Bear in mind, we are told, on being diagnosed, that we have a potential life span of 2 to 5 years and thatÂ 50% of sufferers die within 14 months of diagnosis (this cheerful fact being confirmed by Henry in the documentary – see below).
Where is all this gripe lading to. I am only too aware that there are thousands of kindly people who are trying to help, not least the MND Association, however, what I’m suggesting is, there is not enough early hands-on assistance given. Maybe the RCA should make an appointmentÂ soon after diagnosis to go through various practical assistiveÂ options.
While I am banging the drum I will make one more observation. I noted from the MND website that there was a programme on Channel 4 on 4 December entitled Into That Good Night (inspired byÂ Dylan Thomasâ€™s poem – Do Not Go Gentle into That Good Night). This programme featured, amongst others, Henry, an MND sufferer, but it was only by accident that I came across it, as I happened to be looking for something on the MND Association website, and discovered the programme.Â I wish I hadn’t. I found the film perturbingly depressing. As the press release said â€˜it provides a rare insight into what it is like to live with the knowledge that you might soon die.â€™ How inspirational is that ? To be fair to Henry, the MND star in this film, I felt that he did not provide any comfort to other sufferers whatsoever,Â quite the opposite.
We saw little more than just his face which most of the time was utterly miserable or crying and learned how frustrated and angry he was by being visited with this disease. Frankly, I do not think that such a programme did anything to advance the awareness of MND or how one can cope with this insidious disease . Apologies to Henry, I’m sure he did his best, but he certainly wasn’t â€˜going gently into that good nightâ€™. I’ do not read Dylan Thomasâ€™s, â€˜Rage, rage, against the dying of the lightâ€™ asÂ literally meaning the need to express anger and rage. This, I think, is best illustrated by the penultimate verse of this poem:
Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay
Rage, rage against the dying of the light
I’m given to understand by an unimpeachable source that Thomas was really talking about â€˜enrageâ€™ at his father’s death, not rage at all. However,Â Enrage, enrage against the dying of the light would not scan properly.
Of course, we are all frustrated, that is a perfectly normal reaction, but the message to get across is to get the best out of what you’ve got left. That is the whole purpose of this blog. I too was told of the 2 to 5 year death sentence and the possibility of dying within 14 months but then I was also informed that one in 10 can Â live for 10 years, or more, so I immediately raised my hand and said I will have that one. My gripe is therefore with the MND Association for publicising this in the first place. I know I will not make myself very popular by taking this stance but I shall be interested to learn other people’s viewpoints. Maybe I am alone in the way I think about such matters.
Then we have one of the MND Associationâ€™s leading patrons, David Niven, whose only contribution seems to be,â€œ Whatever you do, don’t get this bloody awful diseaseâ€ A pretty pointless comment. As if any of us have a choice. However, there appears, on the MND website, a great number of far more positive and inspirational comments, Â from many other sufferers but the problem is the writing is too feint to read and does not stay long enough on the screen. Perhaps something can be done about this so that we could benefit from the experience of these brave and positive people.
Lunch today, at the Groucho club in the Dean Street, with my old friend Dr Snowdon Barnett, poet and lawyer. I had an extraordinary stroke of luck. On the journey to London a neighbour and friend,who wishes to remain nameless, sat next to me on that train and finding that he was going Â to Oxford Circus kindly got off one stop early and took me all the way to the Groucho club, and even moreÂ kindly picked me up at 3.30 and brought me all the way home. What a good Samaritan. Certainly Alice was delighted Â as she was concerned that the combination of drink and weak legs might have got me into trouble after lunch. She could have been right.
A short interlude at the village hall today with the neighbourhood watch annual Christmas get-together over a glass of wine and nibbles.
Time for some more irrelevant material.
I have added a new anecdote My introduction to Golf and under the video section, the following
Switzerland some very beautiful pictures of this extraordinary country
Cell phone etiquette. A little rude but I think very funny.
Then the Photo section, I have added:
Sights you may not see in a lifetime. SomeÂ extraordinary photographs.
NASA some more spectacular photographs from outer space.
Chalk Man some unbelievable pavement chalk pictures.
A short while after I arrived in Australia one of my new found friends asked me if I played golf. Regretfully I had to admit that I did not. “That’s a pity”, he said, “because I belong to one of the finest clubs in Melbourne, Kingston Heath and I heard yesterday that they are looking for some new younger members.” Then he said, “Why not put your name on the waiting list anyway. It takes 7/8 years to get through and by that time you may well be playing golf and be happy to join.” So I put my name down, as he suggested.
3 months or so later, I received a telephone call from the Secretary of Kingston Heath informing me that, following a recent committee meeting, they had decided to admit a dozen new members, one of whom would be me.
Accordingly, I was to present myself three weeks ‘to play myself in’ with the Captain and another committee member. The point being, as I discovered later, that this ‘playing in’ was, in effect, an interview to see if I was the right sort of chap etc nothing to do with whether or not I was a champion golfer, although, having said that, I subsequently gathered that one was expected to have no worse a handicap than 18, ironically the same handicap as I play off today, as I write this, approaching my 70th. birthday.
As I say, I learned all this later on. Having thanked the Secretary and meekly agreed to the assignation I replaced the hand set and felt quite numb. The reason for this and my catatonic state was that, during the intervening three-months since my discussion with my golfing friend, I had done nothing to remedy my total lack of golfing experience. In other words, I had never swung a golf club in my life and yet was expected to present myself, three weeks hence, to play with, what would undoubtedly be, a couple of fine golfers, at what was, considered by some to be, the best golf course in Australia.
When I had recovered my wits, I realized that in order not to let down my friend, who had supported my application to join the waiting list, I would at least have to put up some sort of show. I seriously considered having my right arm encased in plaster and turning up for the match with the Captain pleading the excuse of a broken arm which was so bad that I had been told it could be at least the year before I would be able to use it again. This subterfuge would at least have given me time to learn to play the game. However, I decided that this would be a cowardly way out and so there was nothing for it but to learn to play in the three weeks left to me, or slightly less as it was by this time. After all, I thought, it can’t be that difficult as thousands of people play every weekend.
I purchased a secondhand bag of golf clubs and decided that I would present myself at the local recreation ground to complete my initiation and, possibly preserve my anonymity. I should explain, to those who are not familiar with recreation grounds in Australia, that this is where the general public play who cannot afford to join one of the expensive golf clubs.
So keen is the Australian working man to play golf that hundreds of them turn up at these public courses at sunrise, just off the 4 a.m., in the Australia summer. They pay a pittance and get to play on what are, inevitably, fairly basic and indifferent golf courses.
On this particular summer’s morning there were probably 100 or so golfing enthusiasts patiently waiting their turn to tee off. The system worked like this. On arrival, having paid the necessary fee, the aspiring golfer, places his ball in a metal race located near the first tee.
As the sun rises above the horizon the first ball is extracted by the local government employee who is charged with controlling the games. The ball is held aloft and the owner identified. A single player is then paired up with the next single player from the race and then the next pair until a four ball is made up.
So it was with me. “Dunlop 65”, he said. “Mine”, I said. “You on your own”. “Yes”, I said. “Next single, he said, and so I found myself on the tee, in front of this mass of humanity, with three other chaps, none of whom, of course, I had ever met before. We introduced ourselves and shook hands. My three companions drove off. It was then my turn. I teed up my ball, as I have seen the others do. I took my stance and proceeded to attempt to drive the ball towards the first green. My club whistled over the top of the ball leaving it totally unscathed. If you have ever heard 100 people take a sharp intake of breath you will understand my mortification. I steadied myself & tried again with the same result. Pandemonium broke out amongst the spectators. Following a third unsuccessful attempt to move the ball from the tee, to the delight of the crowd, the little man in charge, in the greasy trilby hat, came over and tapped me on the shoulder and refunding the modest fee that I paid, said, ” Here sonny, I think you had better go t’ the practice fairway”.
Blushing furiously, I bent down removed my ball and slunk off, realizing, as I left, that this game was a little more difficult than I had originally thought.
As a postscript to this unhappy event, I can report that, by dint of some considerable practice, I managed, three weeks or so later, to play myself into Kingston Heath. Six months or so after that I turned up once more to the same public course, in front of the same little man, and drove the first green. I doubt if he knew that I was the same rabbit who had failed so dismally on the previous occasion. But I knew, and that was all that mattered.
I remember one amusing incident shortly after I started playing. I came in one day to the locker room and saw a notice which said ‘Keep a Six off Your Card’. Having just completed a round with no sixes I studied this notice a little more carefully. A generous ball manufacturer was inviting golfers to send their sixless card in and receive the award of a free golf ball. I thought that was splendid and so sent off my card. After all it was true I had no sixes. I did have some sevens, some eights and even a nine but no sixes. I honestly did not realize that the idea was that you are not supposed to have taken any more than five shots on any hole. However I did receive a free golf ball with a rather amusing letter accusing me of being cheeky or words to that effect.
Another scrummy lunch today – pityÂ my poor waistline. This one was at the Coq dâ€™Argent, No.1 Poultry, in the City. My hosts were Mark Jenkins and Simon Walker -stockbroker and wine merchant. I arrived early and decided it would be prudent to visit the loo and elicited the assistance of an elderly waiter who didn’t look too happy at the idea of accompanying me to the lavatory. He was even less enthusiastic when I asked him to stand guard outside, as I could not lock the door, and then come and assist me to adjust my trousers. He did, but with poor grace. Ah well, win some, lose some. At least we were able to have a civilised finish to lunch and smoke a cigar on the terrace under large mushroom heaters.
This was the second time that I had worn my full regalia. My full length apron, decorated by my grandchildren’s primary school, my two wrist supports, the wipeable sleeve protecting my clothing on my left arm and my new 12 inch long shoover. Looking a little like a clown I thus managed to feed myself with a spoon, once the food had been cut for me.
The boys hadÂ strict instructions from â€˜her in doorsâ€™ that they were to ensure that I caught the 4.28 and to see me onto the train. This they kindly did but unfortunately they marched me along the platform, each supporting one raised arm, before planting me unceremoniously in an empty seat in front of three bemused passengers who were clearly convinced that I was a legless drunk unable to walk unaided. Then, when IÂ enquired, whether any of these three passengersÂ were going as far as Audley End, in the hope that one of them would kindly give me a nudge,Â if I fell asleep, I was met with three distinctly disapproving stares. However the lady in the middle begrudgingly nodded, and as we reached that station, thrust her elbow into my ribs.