21 February 2008

Posted by DMC on 21 February 2008 in Diary |

No breakfast and gallons of water later I was sent for an abdominal ultrasound scan and some liver tests. Following the test I understood from the radiologist that there did not appear to be anything abnormal, at least not with the liver.

Between the early-morning tests and the evening consultation with the neurologist I went out and had a cracking lunch of lobster and champagne, at Sheekey’s, one of my favourite restaurants, with my dear old friend Geoffrey Hanscomb. That put me in the right frame of mind to hear the worst, whilst still hoping for the best.

That evening, ‘my lovely’ (Alice, my wife) met me at the Café Rouge for a little more champagne and a light snack before our meeting with the neurologist for the moment of truth. I had previously told him that whatever he had to say, provided I had more than a month to live I intended to go to Australia whatever. I was, of course, putting on a great show of bravado whilst at the same time feeling very apprehensive.

In the event, the Dr. confirmed, what I had feared all along, that all the indications were that I was suffering from some form of Motor Neurone disease (MND) or something allied to it.

This is what I had suspected, having looked up the symptoms on the Internet. I read that MND refers to a group of diseases which affect the motor neurones which are the cells that control voluntary muscle activity such as speaking, walking, breathing and swallowing. The prognosis, in any event, was not good. There are broadly four various types of MND.

Most cases of MND progress quite quickly with noticeable decline over the course of months. Symptoms may present in one region and they will typically spread. MND, it said, is typically fatal within 2-5 years, with around 50% of patients dying within 14 months of diagnosis. One in five patients may survive for five years and one in 10 for 10 years.  Mortality normally results when control of the diaphragm is impaired and the ability to breath is lost.

The worst of the four forms of MND being ASL – that is when MND is the presence of both upper and lower motor neurones.

The other three are primary natural sclerosis (PLS) ; progressive muscular atrophy (PMA) and bulbar -pseudobulbar palsy – spastic and progressive bulbar palsy -spastic and flaccid, appear to be less serious inasmuch as one might live a little longer. No treatment is currently effective for any of these conditions. Although the use of a drug (Riluzule) , in the case of ALS, can extend the lifespan of a patient by 2-3 months. None of which is, what you might call, terribly encouraging.

Nor was the consultation with the neurologist very encouraging. Although he was unable to definitively confirm the precise form of MND from which I was suffering he was encouraged by the fact that it did not, so far in any rate, seem to be affecting my throat and he therefore suspected that I was suffering from one of the lesser forms. In other words, I wasn’t going to die tomorrow and it may well be years rather than months. At this point he was awaiting the outcome of some of the blood tests which apparently take three weeks for culture the to grow, but he did say that he would be surprised if any of them showed anything significantly different from his initial diagnosis. He did however, want me to see yet another neurologist, one of world leading authorities on MND, Professor Nigel Leigh at Kings College Hospital, for a second opinion.

Funnily enough having received the neurologist’s diagnosis I felt more optimistic, at least I had some idea what was wrong with me and possibly what is going to happen to me but, at this stage, I don’t know when. In the meantime I have been put onto Riluzole for 56 days to see what effect, if any, they have on my liver function.



21 May 2008

Posted by DMC on 21 May 2008 in Diary |

I had my first consultation today with the Cambridge MND support unit. A nice Dr. Chris Allen, heads up the unit with a charming and helpful support nurse co-ordinator, Joanna.

Dr Allen noted the increasing weakness in my hands and arms but observed no sensory symptoms or problems with speech or swallowing. He did however observe a degree of muscle wastage. In the interests of research, he very kindly agreed to prescribe Riluzole in addition to that which I already receive from my GP, which meant I could take a double dose, although the evidence as to whether this is likely to be beneficial is sketchy.



26 March 2009

Posted by DMC on 26 March 2009 in Diary |

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.

Consultant report.

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.

Management plan

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.

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28 April 2009

Posted by DMC on 28 April 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!!

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4 September 2009

Posted by DMC on 4 September 2009 in Diary |

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,  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.  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,  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 ‘my lovely’ brings in the first morning tea.  I listen to the Today programme and then start on my pelvic floor exercises and back stretching.  These exercises, done in bed.  Take around 15 minutes. These pelvic floor  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)  (Full details of all of these exercises  can be found  by downloading the .pdf  link in the 13 May 2009 entry).

Between these exercises and a second cup of tea I usually manage to shave.  This I can only do lying down, due to the weight of the electric razor, and now need both hands.  Being right-handed this task has become increasingly more difficult but I’m still managing to get a reasonable shave.  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.  Again these take around 15 minutes.  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 the  floor and holding that position for six seconds.  This I repeat five times on each side.  To-date I can still raise both limbs and hold them but only just.  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 ‘my lovely’ bought for me, wedged in with  pillows.

Getting myself in an upright sitting positions in this ‘chair’ has become more difficult since we recently removed the  board under the mattress which was causing me to wake up with a stiff back in the mornings.  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.  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 ‘my lovely’ 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.  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 ‘wash and dry loo’ in the hope that I will not need to go again anywhere else during the day.  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.  This enables me to wash parts I could not otherwise reach!  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 ‘central parts’, after a fashion, which enables me to retain some element of dignity but beyond that Alice does the rest.

‘My lovely’ usually puts out my clothes, the night before and helps me to dress, although  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.  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.  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 ‘my lovely’ 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 longhi’s (skirts!) which I have had made.  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 essential  mineral supplement which is meant to give you ‘get up and go’. 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).  At bed time I take two further 50 mg. Rilutek, two sleeping tablets (Zopiclone 375 mg) and two 5 mg. Diazepam.  This ensures that I usually get around three hours unbroken sleep followed by catnaps until the early morning.

Once I am dressed  I am then ready to go to my office – 20 yards or so from the house – which is usually around 9.15,  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 ½. 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 ports  and  a single connection to the laptop which Alice makes for me. At 6.00 ‘my lovely’ will bring a small whiskey which I then have with a small cigar. My daily treat. Once lit by Alice I find that I can best smoke the cigar from my own invented cigar holder, a wooden lavatory roll holder  with the spring clip on the top (cost £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.  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.  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 do  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.  Thank goodness that they are in good shape.

(A  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. 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 ‘frozen’ 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,  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 be  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.  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.  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.  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.  I have several two handled the lightweight tumblers, for drinking each fitted with a lid with a mouthpiece and a hole for a straw.  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 equipment  they  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 ChampionI 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.  Some of them are able to be repeated after one ignores those of a sexual or racist nature.  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.

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