May 2008/January 2009

I went on pretty much as normal over these intervening months but with progressive weakening of my hands and muscle wastage of the arms. Both hands were very weak with the right-hand fractionally stronger than the left.

I could no longer manage buttons or zips or any action that required the use of my forefinger and thumb together. For example, I could not manage to lift a heavy file with either hand. I sometimes had to ask a shop assistant to help me remove my wallet in order to pay for a purchase. On one occasion I asked a policeman if he would be kind enough to tie my shoe lace which had come undone in the London Underground. All of this was extremely frustrating as it was not only a weakness of the hands but also an overall body weakness which did not auger well for the future.

Having said that I did manage to go to China in October to deliver my annual lectures to CUPL and enjoy a week, on the way home, in Hua Hin, Thailand, in the company of my doctor friend, Michael Long. In the week before the lectures I went on a mountain trek in southeast China and on one occasion found myself stuck at the top of a mountain faced with a 7.5 K walk down, while suffering from extreme pain with what was ultimately diagnosed as a hernia under the pipe work of my artificial urinary sphincter. This was successfully operated on in November prior to a fortnight with my good friends the Brinton’s in Dubai.

In December I played my last game of golf at Royal Worlington as my hands could no longer sustain the weight of the golf club. I resigned as a playing member after 32 years – a very sad day.

Over the intervening months I have been very fortunate in establishing a good relationship with the mechanical engineering division at Addenbrookes Hospital where we have worked on a number of gadgets to assist me to lead a near normal life. I designed a remote-controlled electronic device located on a thigh strap to operate the control pump, of the artificial urinary sphincter (AUS) in my scrotum. In working with the engineers, on developing this device, I managed, through clumsy handling, to knock out the control pump of the device (AUS) altogether. In other words, I found that it was permanently open. This was very alarming as I then expected to find myself incontinent and faced with the prospect of having to resort to leg bags again. The day on which I discovered this I went to bed, having put a rubber sheet on the bed, wearing a nappy overnight. I was pleasantly surprised in the morning to find that I had not leaked, as I thought I would. The following day I wore normal underclothes with no protection and again, no significant leakage.

It seems that a minor miracle had occurred. The medical explanation was that the artificial urinary sphincter was acting, in conjunction with my own pelvic muscles, and retaining the urine. As I write this state of affairs has now prevailed a couple of months and I pray will continue. The point being that my hands are so weak now that there is no way that I could grasp my scrotum in my left hand, locate the control pump and operate it by squeezing it with my right hand.

Without this miracle I simply would not be able to venture far from home, as I would require assistance to go to the lavatory. There are clearly limits on what you can asked even your best friends to do for you. I can see the headlines now, Professor arrested after a accosting stranger in public lavatory.

What of the future? I’d now deeply into finding gadgets to enable me to lead as normal a life as possible. The MND support unit has said that I may lose control of my hands altogether within two or three months, followed by my arms.

Heaven knows how I will manage when I reach that stage. I am already looking at gadgets to help me continue to use my laptop as well as ways of continuing to feed myself, although even this may ultimately prove impossible. Will this mean I can no longer attend meetings of the Arbitration Club, in London, for example, or will I get my colleagues to feed me?

One problem I have solved is how to deal with wiping my bottom when I no longer have the use of my hands. I have found a foot operated unit, that can be fitted on top of my own lavatory pan, which will initially wash my bottom, after I had done my business and then gently dry it with warm air. At least I will be spared the indignity of reverting to babyhood in that area.

Tags: Addenbrookes, China, Dubai, gadgets, golf, Thailand

16 June 2009

Sadly England were knocked out of the World Series, by the West Indies, last evening in a rain interrupted match.

I do believe my hands are getting weaker. I’m still managing to shave lying down but need both hands on the razor. Also can still manipulate my electric toothbrush, but only just. How long will it be before ’my lovely’ will have to do both for me?
The interesting thing is that it seems to me that my right hand is weaker than my left although it’s the other around with my arms. Whether this is because I constantly use the right-hand rather and the left I shall have to ask at my forthcoming quarterly assessment. I know the right-hand is getting much worse – it goes like jelly – and it can take several minutes controlling it on a stiff piece of card containing the daily crossword puzzle. Only then, once it is in position can I actually scrawl in the answers.

Alice already has to fill in my cheques for me and indeed sign them. I had better not fall out with her otherwise I might find my account cleaned out!

The occupational therapist has kindly fitted some rather hideous plastic caps onto our bathroom taps. The ones on the X shaped heads work well but the lever caps on the round headed taps are a little awkward.

All of this gradual weakening means that the possibility of me being able to go to China to deliver my annual course of lectures, in October, is probably receding fast. Obviously I will know better in early July after my assessment but to be honest, lovely people though they are, they don’t seem to have much idea about timescale. The standard explanation, usually given, is that everyone is different so it is virtually impossible to say how fast one will go downhill and in what direction. Of course, they can take an educated guess, and are usually prepared to do so if pressed. This guess may be reasonably near the mark, but I am still not convinced however that they could not be far more scientific about the whole process and do what I came up with in the early stages of my diagnosis: that is to carry out weekly, or monthly checks with scientific instruments, grip handles, strengthen levers etc. – which I know are available – and from that be able to plot some sort of ‘slope of deterioration’. These checks could be carried out by the patient, or their carer, at home, provided the equipment was made available. Even if the results were wildly different with every patient then they should question why, and perhaps ultimately be able to draw some conclusions from the differences.

Tags: China, cricket, prognosis, weak hands

25 June 2009

I am due to have my quarterly MND assessment on 2 July when I will finally be able to make up my mind whether I am likely to be fit enough to go to China and give my lectures in October. It all depends how much further my hands and arms weaken in the meantime. I noticed, particularly in bed last night, what difficulty I was having pulling back the bedclothes. I had to use a combination of closed fists and elbows. Also, getting up from the floor following my morning exercises, the only way I can now manage it is to get onto my elbows. Strangely enough my right hand is now more useless than the left but the arms are the other way around.

Feeding is OK as long as the food is cut up, I can use a spoon. Most drinking is through a straw as most glasses are too heavy for me, although I can still cup a wine glass. Driving is fine in my automatic as I can still curl my fingers.

My greatest fear is getting locked into a public lavatory – in the train or in someone’s offices. Locks with a circular knobs are the worst.

Tags: China, eating, toilet, weak hands

2 July 2009

Today I had my quarterly MND assessment at Addenbrookes Hospital Cambridge. Having explained the deterioration in my hands and arms the doctor was not surprised and said, on the whole ‘I was doing very well’. In other words, I am going downhill pretty much at the rate that they anticipated (although of course, he neither hinted at more, or said such a thing; it is just my own personal interpretation.)

My Forced Vital Capacity (FVC) – blowing into a little handheld device -was 10% down on last time, in the supine position. The support nurse did not think this was significant but she obviously was sufficiently concerned to say that I should perhaps go to Papworth Hospital for a more detailed check. I believe this test is one that indicates your overall rate of deterioration more accurately than any of the others. Having said that the doctor examined my tongue and told me that, at present, the disease was not attacking my throat, so I really don’t know what to think.

One good thing that came out of assessment was that the doctor agreed there was a possibility I could still go to China in October. In other words, my flailing arms may not have completely given up by then. He suggested a further assessment in early September when a final decision can be made.

A team of people came in to the consultation to look at the feeding device and appeared to be very impressed. They included a dietician, an occupational therapist, a physiotherapist, a lady running a hospice and the engineer. The frame still needs a tiny adjustment on the armrest but once that’s done I believe it might be possible to have it tested within the hospital itself and then perhaps trialled in an NHS care home.

Enough boring stuff I think it’s about time I added another anecdote. With the Ashes starting next week (cricket against the Australians for those few people in the world who haven’t a clue what I’m talking about), I have added to Anecdotes The Cricket Match, which I hope you all find amusing.

Tags: Addenbrookes, assessments, China, feeding frame, weak hands

29 July 2009

My good friend Dr. Michael Long arrived today with daughter Kate for an overnight stay. It was lovely to see them and we enjoyed a pleasant lunch at the local pub the Axe & Compasses.

The important thing to come out of this visit was Michael’s total commitment to assisting me to go to China in October to give my lectures. As a result I have now made a provisional booking, with my travel agent, which I hope to be able to confirm on Monday.

Tags: China, friends, travel

2 August 2009

After hearing from Michael, I was able to confirm the flights with the travel agent today for the trip to China and Thailand in October. I just hope I don’t deteriorate too much in the meantime as, at my age, it is almost impossible to get travel insurance at anything other than a ludicrously high premium and therefore I am at risk for the not insubstantial airfare, if, for any reason, I am unable to travel.

I very recently finished a fascinating look about China, given to me last Christmas by son Miles – it was a heavy book in both senses of the word, Jonathan Fenby’s History of Modern China –The Fall and Rise of a Great Power 1850 – 2008, published by Penguin. It took me a long time to read the 800 odd pages but it was well worth the effort and has given me an even better understanding of the functioning of modern China than I had even after my 10th visit.

I particularly liked Fenby’s description, towards the end of the book, of China’s system of government as one ‘of bureaucratic capitalism, underpinned by force and marked by exploitation, with little time for fostering human happiness in anything other than material terms, as the last major Leninist state, only with Chinese characteristics; as a nation whose impact is changing the world but which remains deeply unfathomable as it’s own rulers grapple with the problems of unprecedented size.’

China’s role, and that of India, on the world stage, in the 21st century, has exercised my imagination for some time. Consider this comparison of these two emerging giants:

Under five-year-olds are twice as likely to die in India than in China.

“To get rich, first build a road” Chinese Proverb.

This information may not be entirely up-to-date but it does give a fascinating insight into these two emerging economies. The socialist market economy of China and the largest democracy in the world.

Unfortunately, for the life of me I cannot remember where I got this information from. Perhaps someone can identify it for me and I will attribute it in a subsequent version of this blog.

Tags: China, Thailand, travel

5 August 2009

The die is cast. I took the plunge today and booked the flights for me and my good friend, Dr. Long to go to China and then onto Hua Hin, towards the end of October. This, despite my trepidation at the rate that my hands and arms are giving up. Two and a half months is a very long time with such an aggressive disease. However, the good doctor has made it quite clear that he is only too happy to be with me 24/7 on this trip and do whatever is necessary. Sobeit. I had been led to believe that it was virtually impossible for someone of my age and infirmity to get travel insurance at anything other than a ridiculously high premium. However I am pleased to report that I did find a company today to cover my forthcoming visit to China and Thailand for what I consider a very reasonable premium of £122 which also includes cover for anything arising from my MND or prostate cancer, which I had 10 years ago.

I spent most of the day preparing my talk for the memorial address in Dublin on the 18th September. The trouble is it cannot be entirely light-hearted and has to have some academic interest which means the preparation of a number of PowerPoint slides. Easy enough in the old days but now with weak hands, a laborious process.

Tags: China, Ireland, Thailand, travel, weak hands

1 September 2009

I went to London today to the Law Court Branch of the Arbitration Club Lunch.  I drove to Bishop’s Stortford but on the way decided to fill up with petrol.  Unable to lift the lever releasing the petrol cap and also being too weak to squeeze the pump, I asked a kindly looking  customer for assistance when he had finished filling his own tank.  Unfortunately, between the time of asking and his coming to assist I had managed to topple over backwards so, in fact, I had disappeared from his sight from the other side of my car.  Fortunately for me he decided to investigate and found me lying prone.  This is the  fourth time this has happened so I suppose it must be something to do with loss of balance or weakness of legs which I must mention to the MND team when I see them next week.  After this kind gentleman had helped me up and filled up my tank, on the way out I got him to push in my safety belt and turn the ignition key – both of which I find now almost impossible to do myself.  By this stage he looked rather quizzical. I’m sure he was wondering whether I should be allowed on the road at all (or whether he was even on Candid Camera) however, I  assured him that once I was on the move I was quite safe.  I’m not sure that he really believed me.

At the Arbitration Club lunch one of the lady members was only too happy to fit my wrists supports and to cut up my food.  On the whole I find most people are immensely helpful provided they are approached in the right manner.

I also took advantage of this trip to London to go into the Chinese Embassy to apply for my visa. What a performance.  There was no way that I could get it in one day and therefore have to get back next week to pick it up, at the exorbitant cost of £64.50p.

Tags: Arbitration Club, China, driving, visa

10 September 2009

My quarterly assessments with me MND team at  Addenbrookes today. A little earlier than usual in order to clear me medically to go to China. However, I made it clear that whatever they said I would still  be going. In the event, I got the all clear to fly – no likely breathing problems.  The overall prognosis was not too bad. Although Dr. Alan could not rule out flailing arm syndrome neither could he be certain, at this stage, that that would happen to me.

It is quite possible that the deterioration of my hands and arms could plateau out, although personally I feel they get worse week on week.

I drew attention to the strong fasciculations in my legs which never seemed to cease but after examination the good doctor was not concerned and said that they could go on twitching for years — frankly he admitted that he could not predict, if and when, I would begin to lose the use of them.

An  open-air lunch at the Great Duxford antique centre with the Gordons.

Tags: Addenbrookes, China, flailing arm syndrome

26 September 2009

With the Irish commitment out-of-the-way my thoughts have begun towards the lectures in China and wondering how well I will manage even with the good doctor’s support – certainly, there will be no liquid lunches on those three days!

I suppose I started thinking about this as I sat, in a deckchair, in the warm sunshine, on the most beautiful of early autumn days. Alice had popped up to the shops and I needed to go to the bathroom. It took me the best part of five-minutes to get out of the deckchair – indeed, at one stage I almost gave up and waited for her to return. It was then I realised how weak my arms had become.

This lead me to thinking how, when I was having my shower this morning, I realised that it was becoming increasingly difficult to hold and manipulate the long handled sponge.

I told ‘my lovely’, as she dried me, that I would try to hang on until I got back from China, by which time I was pretty sure that she would have to wash me and even perhaps operate my electric razor and toothbrush. Good evidence of the weakening of my arms is that once the wrist support is attached to my right hand it becomes too heavy for me to lift without assistance from the other hand.

Tags: China, grooming, washing, weak hands