May 2008/January 2009

Posted by DMC on 20 January 2009 in Diary |

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.

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