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.
I had my quarterly assessment with Dr. Allen and his charming support nurse, Joanna Sassons at Addenbrookes today. I asked the doctor to take an educated guess as to when I’m likely to lose the use of my hands completely. He thought perhaps six months for the left-hand, and shortly after that the right-hand.. I asked whether he could confirm that I was suffering from flailing arm syndrome and he said that he believed that I was. He guessed that I would lose the use of both arms with his 12 -18 months.
Legs seemed OK and Dr. Allen was sanguine that it would be a few years before these would be seriously affected. Similarly my diaphragm was okay therefore no breathing problems at present.
I discuss the various research projects which are being carried out at present or the results of which have been recently publicised. In particular, the effect of the protein Nrt2 on MND patients. The results of an American study were published on the 10th December 2008. Unfortunately it is early days yet as to whether this protein will assist MND sufferers. The researchers concluded that “if we can find drugs that can activate Nrt2 to a high-level we could potentially have an extremely potent therapeutic for neurodegenerative diseases”. So not much hope there in the near future.
We next briefly discussed the research into the therapeutic qualities on the Lithium for MND sufferers. I had a copy of the paper The Lithium ALS Worldwide Study: Six Months Update, published November 16, 2008. the key points of which concluded that contrary to the findings of the Italian study (Fornai et al), lithium alone or lithium plus riluzole was not found to be effective at slowing the progression of ALS over the six-month study period. The report continued “based on these results we find that low doses (150 mg/day) of lithium might be used primarily for the relief of painful cramps, but that lithium should not be recommended for most ALS patients”.
Finally, I raised the question of stem cell research of which there appears to be quite a lot going on. Whilst the earlier research reports are encouraging it is clearly still very much early days in this technology. In effect laboratory researchers are just learning how to encourage stem cells to develop into living motor neurons, providing a unique resource for studying them. This month has been a breakthrough in the creation of induced pluripotent stem cells (iPS) from adult human skin cells which could speed the research. Undoubtedly there will be some breakthrough in the future but whether it comes early enough for me is questionable.
One good thing to come out of the assessment was that Dr. Chris Allen, learning of my disappointment over the bionic gloves, very kindly offered to put me in touch with a professor in Oxford who he thought might be interested in developing the idea.
In the meantime, on the general front, I must say Alice she has been absolutely marvellous. Almost daily she turns up with some new piece of equipment or gadget to make life easier for me – a foam rubber armchair, to making easier sitting up in bed; a special tilt top tray to hold my book; a new lightweight dressing down as the old one was too heavy for me to lift; and so on.
I am obviously going to have to rely that can do to help my book while I’m reading in bed heavily on her over the next few months. I could not have a better nurse.
I received the following report of my recent visit to the MND support unit, a few days later.
Professor Cato is slowly getting worse in terms of function in his upper limbs especially the left arm but the right is also declining in function now. His lower limbs on the other hand are functionally normal as are his bulbar muscles.
He mentioned various interesting aspects of his disease that I am going to look into for him but all in all he is coping very well with his progressive disability although obviously getting a bit pessimistic about what life will be like without upper limb function.
We will keep him under review and the report from the MND care team follows below.
Decline in arm and hand function. Computer access more difficult .
Contact has been made with Ability Net for computer access assessment
Basic hand splints provided by Physio to trial for wrist support. -Dr Allen advised not worthwhile cutting Dubitrons.
Leg cramps – start on Quinine Sulphate
Phlegm to back of throat – if this becomes more problematic a suction unit can be order via the MND association tele: 08457 626262 on loan (District nurses please assist with demonstration and supply of disposables)
Psychological support can be accessed if needed via local hospice service – Prof Cato to contact coordinator if referral required.
Smilerâ€™s birthday – 45 years old â€“ he has been taken to Venice for a few days by Kimberly.
Went to Addenbrookes Hospital today to see the latest prototype of my feeding frame. They have very nearly got it right. After agreeing one at two minor adjustments I hope to pick it up later this week. I’m still very excited about this having universal appeal.
Some cotton trousers which I had purchased from the Internet, for the grand sum of Â£9.99 per pair, arrived today. I bought them because I thought the elasticated waistband would make them easier to pull up and down. Sadly, I had not realised how my girth had expanded over the last three months or so, now 38 inches, whereas over the last 20 odd years it is has been no more than 34â€. (The trousers were sent back for a larger size). I suppose the point is, that before the MND I was going to the gym three days a week and played at least two rounds of golf. Now, I just have one weekly walk round the golf course and have not changed my eating or drinking habits. Clearly, I must increase my exercise, perhaps by a daily walk now the weather is improving. The problem is that up to now I’ve been very busy trying to complete my autobiographical notes, before my hands disappear altogether. I am glad to say that this job is all but finished.
I had a session today with the boys at Addenbrookes discussing the final modifications for the feeding frame. I am really excited to see the finished result although I have already worked out a more simplified, cheaper version 2, once I am satisfied that this one works. The first thing will be to get it into a hospital to be used by an elderly patient for a week under observation.
On the way back from the hospital I filled up with petrol but for the first time I was unable to lift the lever which releases the petrol cap flap or indeed, when it came to it, squeeze the petrol pump – a confirmation of my weakening hands â€“ however, I was fortunate enough to enlist the assistance of a young Latvian customer who I think was slightly bemused until I explained my problem.
Talking of weak hands I have now had tape loops sown onto to all of my boxers and underpants, one on each side and one in the centre. Where the elastic was too strong for me I can manage perfectly well by hooking my fingers into the loops, thus continuing to maintain my independence in this area.
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 â€˜I was doing very wellâ€™. 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.
The House of Lords have now given their judgment on the Purdy case where Mrs. P was seeking assurance that her husband would not be prosecuted if he assisted her suicide when the MS, from which she is suffering, becomes intolerable. Not unsurprisingly the Lords did not give such an undertaking, however, they did say that guidelines would be set down for such cases. These can be expected around September, so I suppose, in some respects, this is be can count this as a victory for the Purdys. Undoubtedly the mood of the country, and indeed the judicature, seems to be towards some sort of immunity from prosecution in strictly limited cases. Â Watch this space.
On a more mundane level I went to Addenbrookes Hospital today be fitted with some rigid wrist supports. The occupational therapist made them there and then but I think they are going to take some getting used to. They are rather uncomfortable to wear and most of the time I can manage without them.
The great excitement about this particular visit, however, was that I picked up the feeding frame. I think we have got it pretty well right now and I shall try to out myself for the next week or so before attempting to trial it in hospital or a care home.
Today a courier arrived with an oximeter for me to use in preparation for my visit to Papworth Hospital next Monday. I believe that they are testing for any possible weakening in my diaphragm which will ultimately affect my breathing. All I have to do is to wear a clip,Â overnight, on my forefinger, attached to the oximeter. The machine apparently records and stores information concerning the amount of oxygen in my blood whilst I am asleep.Â No doubt, I will learn more when I go to Papworth next Monday.
As this is now passed the second anniversary of my first noticing the weakness in my left hand i.e. the onset of MND,Â I have decided to carry out a complete reappraisal of my daily activities in preparation for my quarterly check-up at Addenbrookes next week. I think the easiest way I can do it is to work from bed to bed — morning to evening.
I am almost always awake just before six when â€˜my lovelyâ€™ brings in the first morning tea.Â I listen to the Today programme and then start on my pelvic floor exercises and back stretching.Â These exercises, done in bed.Â Take around 15 minutes. These pelvic floorÂ exercises, I am convinced, help me to continue to pee normally in conjunction with the Artificial Urinary Sphincter, in other words the miracle continues.(See May 2008 /January 2009 entry)Â (Full details of all of these exercisesÂ can be foundÂ by downloading the .pdfÂ link in the 13 May 2009 entry).
Between these exercises and a second cup of tea I usually manage to shave.Â This I can only do lying down, due to the weight of the electric razor, and now need both hands.Â Being right-handed this task has become increasingly more difficult but I’m still managing to get a reasonable shave.Â Once I lose the use of my hands altogether I wonder whether I will be able to clamp the razor into some gadget, or other, and then move my face about against it?
20 minutes or so before my breakfast is brought up I am out of bed and doing my floor exercises.Â Again these take around 15 minutes.Â The most telling one, from my point of view, is lying flat on my stomach raising one arm and the opposite leg and arm inches above theÂ floor and holding that position for six seconds.Â This I repeat five times on each side.Â To-date I can still raise both limbs and hold them but only just.Â I shall know when my arms have weakened further when I can no longer raise them and my legs from the floor, and hold them there, so this will be a good indicator.
I then get back into bed and await my breakfast tray. This means sitting up in the large rubber arm chair which â€˜my lovelyâ€™ bought for me, wedged in withÂ pillows.
Getting myself in an upright sitting positions in this â€˜chairâ€™ has become more difficult since we recently removed theÂ board under the mattress which was causing me to wake up with a stiff back in the mornings.Â It is the weakness in my arms which makes any movement in the bed more difficult. Not only that but pulling up the bedclothes has to be affected with a combination of legs, elbows and clenched fists.Â A pillow is about the heaviest thing I can lift between my clenched hands, having no grip strength in either hand.
Over my coffee I frequently attempt the Times No.2 crossword puzzle although my writing has become so illegible, with a floppy, virtually uncontrollable, right-hand which can take two or three minutes to get into position to write a single letter, I have decided, this very day, to abandon the attempt and rely on Alice to write in the answers.
I usually get up around 8.15-8.30 when I clean my teeth with a sophisticated electronic toothbrush. This required a certain amount of manipulation with my hands which I am finding increasingly more difficult but if I get to the point when I cannot use this device myself it will not be too difficult for â€˜my lovelyâ€™ to do for me. It should certainly be easier for her than with a traditional toothbrush. Alice has to plug in the toothbrush (and the shaver unit) as I find it extremely difficult to raise my hands high enough and then exert the necessary pressure.Â She also has to change the heads on the toothbrush, morning and evening, which I don’t seem to be able to pull off for myself. The other job which has to be done for me, once a month, is to remove my pills from their blister packs into lidless small plastic medicine bottles from which I can then tap out the necessary dosage.
I then go down to my own bathroom. I start each day by using my wonderful â€˜wash and dry looâ€™ in the hope that I will not need to go again anywhere else during the day.Â On the whole it seems to work pretty well although I still finish off with a baby wipe, however this manoeuvre is becoming increasingly difficult. I have a special loo book which I read during this process as it tends to take a little longer than it would under normal circumstances.
I then step into the shower and can still manage to wash myself reasonably well with a sponge on the long handle.Â This enables me to wash parts I could not otherwise reach!Â Until very recently I was still able to get my hands up and squeeze out some shampoo and make some sort of effort to wash my hair but over the last few days I found this more difficult and so Alice now does it. I can still dry my lower â€˜central partsâ€™, after a fashion, which enables me to retain some element of dignity but beyond that Alice does the rest.
â€˜My lovelyâ€™ usually puts out my clothes, the night before and helps me to dress, althoughÂ I can usually get on my own underpants, particularly those with the three loops that I have had sewn onto them. Alice usually does the rest of the dressing.Â Certainly buttons are beyond me but I can make a shot with my trousers having had all the zips fitting a key ring; the clips and buttons removed from the top and substituted with Velcro and a cloth loop which I can usually drag across.Â All of my ties have been pre-tied and just have to be slipped over my head and pushed up to the collar by Alice.
If I am going to London or for an important appointment â€˜my lovelyâ€™ even finds me a fresh rose for my button hole, which it has always been my habit to wear.
On days when I am not seeing anyone or going anywhere, other than my home office, I may well wear one of the longhiâ€™s (skirts!) which I have had made.Â They wrap around my waist and are held in place with Velcro and have a cloth loop at each end to facilitate the process of putting them on. Wearing these makes the business of going to the loo, that much easier, on those days when I left on my own and there is no one to help me adjust my dress afterwards.
The myths about the whiskey and aspirin, reported above, leads neatly into me cataloguing the other medication I take daily.
I start the day with two 50 mg. Rilutek washed down with a Berocca tablet, which is, in effect, a vitamin and essentialÂ mineral supplement which is meant to give you â€˜get up and goâ€™. Heaven knows if it does any good, but it certainly can do no harm. In the early evening I take one Cod Liver Oil and Garlic capsule and one 375 mg. Quinine Sulphate pill (for cramp).Â At bed time I take two further 50 mg. Rilutek, two sleeping tablets (Zopiclone 375 mg) and two 5 mg. Diazepam.Â This ensures that I usually get around three hours unbroken sleep followed by catnaps until the early morning.
Once I am dressedÂ I am then ready to go to my office â€“ 20 yards or so from the house – which is usually around 9.15,Â where I will happily spend the rest of the day until around 6.30 – 7 o’clock except for a lunch break of around 1 Â½. hours when I usually watch the news or something else on television. Once Alice has plugged in my laptop I can manage pretty well in the office except for turning over pages which I do with the aid of pimpled rubber finger stalls. She pops in, on from time to time, to see if I need any help, for example, to get files from the filing cabinet or to do some filing.
In the office I have a Belkin unit into which all of my gadgets are plugged as it has seven USB portsÂ andÂ a single connection to the laptop which Alice makes for me. At 6.00 â€˜my lovelyâ€™ will bring a small whiskey which I then have with a small cigar. My daily treat. Once lit by AliceÂ I find that I can best smoke the cigar from my own invented cigar holder, a wooden lavatory roll holderÂ with the spring clip on the top (cost Â£2.95) , which saves the cigar from slipping through my fingers, and burning holes in my clothes or the carpet, as it did in the past.Â This then is my typical day seven days a week except for those days when there are things happening, or I’m not working in the office, which are not infrequent, as will be seen from the rest of the diary.
The days that I spend in the office are almost always working on my laptop.Â Either dealing with e-mails, updating my blog, sending business letters, revising lectures etc. Up to this point of time I can honestly say that I have not been short of things to doÂ although the laptop has become more difficult to use due to my weak hands but fortunately the forefinger on my left hand seems to have become rigidly fixed almost horizontal which means that I can still operate the mouse with this finger.
What I find most difficult is picking things up; paperclips, sheets of paper, pens, etc maybe I can get some device for the purpose. I did it quite heavily on my teeth for a number of tasks.Â Thank goodness that they are in good shape.
(AÂ 57-year-old fellow sufferer from Chelmsford has told me that he contracted MND 18 years ago and it has only affected his lower limbs and he plateaued out at that some years ago.Â I realise that this chap is a very exceptional case and that every patient is different but the MND documentation does mention the possibility of the disease plateauing which, from this example, gives us all hope that we might function longer than we expected.)
AbilityNet have been very kind and provided me with a lever mouse which for the moment I have no need to use as I am still able to use the â€˜frozenâ€™ finger on my left hand to poke the laptop. They have also generously provided me with an e-book, onto which I can download books,Â purchased from say, Waterstones, and downloaded onto my computer. This is something I will have to rely on more and more as most books are too heavy for me to handle. The only problem is going to beÂ to turn the pages which requires me to press a button on the e-reader, maybe I can get a foot or large hand control button from AbilityNet.
I’m very fortunate that I have been operating voice activation (Dragon Naturally Speaking Preferred) for many years now so that most of my work on the laptop is made that much easier as there is no way I could really achieve half of what I do, key by key, using one finger.Â Most of the time, the result on the screen is pretty accurate but occasionally, for no apparent reason, it writes gobbledy gook.
The other area with which I require assistance is eating and drinking.Â I have two good wrist supports into which I can slip a spoon or fork in the right-hand and a shoover in the left-hand.Â With the assistance of my feeding frame I can usually feed myself once the food has been cut up, most of the time using a spoon or spearing lumps with the fork. I have found, for instance, that eating sandwiches cut up into small pieces, is best affected by using a fork.Â I have several two handled the lightweight tumblers, for drinking each fitted with a lid with a mouthpiece and a hole for a straw.Â Most of the time I find that a straw is the easiest way of drinking.
What with the environmental people here yesterday (see 3 Sept. entry) and a visit scheduled for September 25th from an AbilityNet consultant to see what other equipmentÂ theyÂ can provide me with to make my life easier, I must say that I am extremely fortunate with my backup team.
With all this heavy medical discussion I have decided that it’s time I added another anecdote — see World Monopoly Champion — I have also persuaded my good friend Richard to add one more section to this Blog which I have named Jokes. The point is that I receive some splendid jokes from two particular individuals, one in this country and one in the US.Â Some of them are able to be repeated after one ignores those of a sexual or racist nature.Â So it seemed to me that it would be rather fun to share with my readers, some of these really good jokes, however old hat some of them might be. If they give any of you a chuckle on a day when you’re feeling low then they will have achieved their objective.
My quarterly assessments with me MND team atÂ 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 stillÂ be going. In the event, I got the all clear to fly – no likely breathing problems.Â 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.
AnÂ open-air lunch at the Great Duxford antique centre with the Gordons.
Horror of horrors, wisdom tooth extraction day. Went to Addenbrookes at lunchtime to have it yanked out. Not a happy experience particularly as they managed to break the tooth and leave a small part of the root behind, which meant a lot of poking, a certain amount of cutting and the loudest drilling that I’ve ever experienced. However, all was well in the end and I suffered little discomfort. I have a good set of gnashers, thank goodness, as they replace my fingers from time to time, so to lose a wisdom tooth is a serious loss.
The relatively new Jokes section of this blog seems to gone down rather well. So much so that I invite any reader to send me their best joke and after I have vetted it in firstname.lastname@example.org, provided it is neither racist or sexist, I would consider including it on the blog to share with the other hundreds of readers who log in daily.
Visit today to Addenbrookes Hospital to see Maggie the occupational therapist for some different wrist supports to assist me to hold my cutlery has my left hand has become very weak.Â Bill and Paul came to do a few odd jobs and amongst other things stuck my rubber (wicket gloves) pimpled material (provided by my good friend John Gray) to all of my cutlery, back scratchers etc.