Posted by DMC on Feb 28, 2008 in
Diary On 28 February I flew off to Australia, determining to enjoy life while I could. The future was clearly pretty bleak. I stayed with my dear old friend (Dr.) Michael Long as well as spending a few days with some other old friends in Barwon Heads – Geoff. and Anne Waite.
One day, during this trip, I was invited to play golf at my old club, Kingston Heath. I was terribly excited about the idea having been a member there 50 years or so earlier.
Sadly it turned out to be a disaster. Not only was the temperature almost 40°C but after nine holes I was in such agony, from the pain in my groin that I could not move without severe pain. I spent the next hour sitting in one of the many wooden shelters on the course before I could comfortably move back to the clubhouse. Whatever the doctors say, hernia or not, there is something seriously wrong.
Apart from Michael being astonished at the violence on the fasciculations in my thighs there were no other medical ramification during this visit.
Tags: golf, pain
Posted by DMC on Jan 20, 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.
Tags: Addenbrookes, China, Dubai, gadgets, golf, Thailand
Posted by DMC on Mar 6, 2009 in
Diary Returned home today having had a great time. I managed, just, with Michael’s help and some understanding stewards on the aircraft.
Apart from resigning from the golf club I have also resigned from my last arbitration. It was a very heavy case and likely to go on for some months. Being unable to write legibly, without great effort, I could see no way that I could run a hearing with two heavyweight lawyers appearing before me. It’s not so much a question of giving up as readjusting. I am, after all, approaching 75 so I suppose that it is no shame to want to take things a little easier. As President of the Arbitration Club I shall continue to attend lunches in London as long as I am able to adjust my dress after going to the lavatory. I’ve had 40 pairs of trousers fitted with Velcro, instead of buttons and clips, and fitted my zips with key rings.
At least, to date, despite continuing violent fasciculations, my legs are still working perfectly well and I’m able to walk several miles at a time. I am now well over a year since diagnosis so it doesn’t look as though I’m going to expire in the average 14 month timescale.
(Indeed, one doctor said that fasciculations were observed in a medical check-up as far back as 2005, so it may well be that I am already some years into the disease although it did not manifest itself until 12 months ago.) Anyway, I was told that one in 10 MND sufferers can live for 10 years, so I told the doctors I would take that option! So we will see.
Tags: arbitration, Arbitration Club, golf, lavatory, prognosis, velcro
Posted by DMC on Apr 21, 2009 in
Diary Went to Worlington. Walked around the golf course and lunched with my old mates. They were all very kind and welcoming and said how nice it was to see me there. No problem with my legs at this stage doing a three and a half hour walk, resting from time to time on my shooting stick.
Most of the members at only too ready to help untie my golf shoes and tie my shoe laces; to help me remove a sweater and to cut up my food at lunch.
I introduced the members to my new cigar holder. I had it made from a 15 inch high wooden toilet roll holder with a spring clip on the top. I bought a cheap plastic holder in London, the other day, and jam it into the spring clip and can therefore smoke without using my hands. I only smoke two small cigars each day but I do enjoy one with a drink after walking around the golf course.
Tags: gadgets, golf
Posted by DMC on Apr 28, 2009 in
Diary Walked around golf club again today. I drive myself to my friend’s house, 3 or 4 miles away and he takes me to the club from there. I can manage to steer the car quite safely as I can still care of my fingers around the steering wheel and a car, being automatic, I then need to worry about changing gear. I do have a little trouble knocking the seat belt although usually somebody is on hand to push it in for me. I did have trouble the other day when the steering wheel locked and I had to call on a passer-by to come and wiggle the ignition key about for me. I don’t think I could manage to drive any great distance. The DVLA already hold my license, aware that in foreseeable future I will be banned from driving altogether.
I managed 15 holes and then felt a bit tired. One of the doctor members very kindly gave me some powder which he says has helped his wife enormously. She has had MS for the last seven years. He also has a niece with a muscle wastage complaint who is also taken the same powder. Its trade name is Ambrotose and it is described on the jar as an immune support formula. It is a Food Supplement containing Plant Polysaccharides.
The ingredients are listed as: arabingelactan; aloe vera inner leaf gel powder; rice starch; gum ghatti; tagacanth; vegetarian glucosamine hydrochloride; vegetarian algie extract powder. Whether it will do any good or not remains to be seen but my friend is convinced it will slow things down. What it costs I have no idea but I’m pretty sure there’s no way I will get it on the NHS. I will try it for a month or so and then decide whether to continue with it.
This might be rather a good moment to list the other things I take on a daily basis apart from the Rilutek.
I start the day off with a Berocco drink. Berocca is described as Tailored vitamins and essential minerals for hectic lifestyles I have been taking this for around 18 months. It is basically a high dose formulation of B & C vitamins plus other essential minerals. In a nutshell it provides between 70 and 80% of one’s recommended daily dose of vitamin B12, vitamin C: Thiamin; Riboflavin and a few other essential minerals. Does it give me that ‘get up and go’ oomph, perhaps? I would have to stop for a while to find out, but why bother. At least I’m certain it is doing me no harm.
Pills include Nifedipine for Raynauds syndrome; quinine tablets, recently prescribed by the MND doctor to prevent cramp; a large cod liver oil and garlic capsule, to ward off colds and a .75 m.g. daily aspirin, as recommended by my Australian doctor, to ward off heart attacks. Having listed this lot out it makes me sound like a hypochondriac, which I’m certainly not.
On the way home from the golf course I called in at my bank and added Alice as a signatory to my accounts as I’m finding it difficult to write and therefore difficult to sign my own name. I’m sure after 46 years of marriage I can trust her not to raid my account!!
Tags: Ambrotose, golf, quinine sulphate, Riluzole
Posted by DMC on May 26, 2009 in
Diary Geriatric golf day at Worthington. Due to the inclement weather few turned up but I did brave the rain and walked round 15 holes and enjoyed the OAP lunch with my old golfing mates after having given them much gratuitous advice during the round!
Richard Bamford had his beautiful black lab with him and I must say it made my heart ache for the loss of my own old lab., Woody. My lovely wife says that I may have another dog when I finally swear I have given up international travel (am I not there already?). I suspect it will be some tiny terrier as opposed to a lolloping lab but any dog would be better than none.
I must say there are all very good in helping me with my shoes, tie etc. and chopping up my food. Most all of them have had small children at some time or other and are used to that sort of thing. Legs still working O.K. I had intended to make this the unveiling of the kilt but decided that it was a bit chilly and breezy and would leave it for a warmer day. Perhaps next Tuesday.
Tags: eating, golf
Posted by DMC on Jun 2, 2009 in
Diary A red letter day, or rather a red kilt day. I gave it an airing (literally!!) for the first time at the golf club today. It did cause a bit of a stir, when I first appeared and I invited them all to have a good laugh but, to be honest, they were all absolutely wonderful and there were no ribald comments. As far as the functioning of the ‘skirt’ was concerned, it was as I had hoped. Most of the members were bright enough to work out for themselves the reason for this bit of cross-dressing.
Tags: clothing, golf
Posted by DMC on Jun 15, 2009 in
Diary An early morning start for another geriatric golf day. I managed to walk the course without too much difficulty. Too chilly for the kilt. In any event it looked like rain so how to protect against a soggy skirt?
Tags: clothing, golf
Posted by DMC on Jun 22, 2009 in
Diary Another beautiful summer’s day and walk around at the geriatric golf meeting. I managed the 18 holes with regular rests on my shooting stick.
Tags: golf
Posted by DMC on Jul 14, 2009 in
Diary Despite the late night in Cambridge I managed the early start necessary for me to get a lift to the golf club for my weekly walk around with the geriatrics.
My legs are still working reasonably well, if somewhat more leaden than they used to be. I cannot say the same about my hands and arms, they really do get weaker by the week. The right hand, although it started going downhill much later than the left has been far more aggressive, the fingers are like jelly, cannot be straightened and are beginning to curl towards the palm.
The wrists in both hands are weak and I really need the wrist splint on my right hand in order to lift a spoon, cup or glass to my month. (A straw for drinking has become a useful adjunct.) The only digit which still works reasonably well, and which I can straighten, is the forefinger on my left hand – useful for prodding the laptop. Adjusting heavy bedclothes is becoming impossible with my hands, elbows and legs taking over.
Washing in the shower has become more difficult, I can only really manage by dint of the long handled sponge. I can still raise my hands to head height, with bent arms but cannot straighten them, so things like washing my hair or brushing it has become difficult .
I manage reasonably well in the office, largely through voice activation, once ‘my lovely’ has plugged in my laptop, but handling papers and lifting, even medium weight, books is difficult. AbilityNet kindly provided me a seven hole USB stand so most of my equipment can activate it by just plunging this stand into the laptop.
On the lavatory front I am pleased to report that the miracle of the AUS continues and I am able to pee normally, my main difficulty being adjusting my dress afterwards. However, there is usually a friend who is prepared to accompany me and do the necessary or, for example, at Lord’s I was able to enlist the assistance of one of those splendid St. John’s Ambulance brigade. On the whole I find people extremely kind and generous and prepared to help although, wherever possible, I try to avoid asking anyone to put their hand in my pocket for my mobile phone, wallet, or whatever and generally carry them loose in a large linen bag, which makes them more accessible.
I suppose the overall prognosis is that I am getting steadily weaker, week on week, but once up and dressed can manage to lead a relatively normal life with a little assistance here and there, provided I do not fall over, – which I have done once or twice – and then find it almost impossible to get up unaided. So on the whole I would say that my lovely wife and I are managing, but for how long?
Tags: Abilitynet, golf, weak hands
