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23 April 2009

Posted by DMC on 23 April 2009 in Diary |

After an overnight stop with my mother followed by a day in London – meetings and lunch – this is a good moment to take stock.

The first thing I have to say is that the miracle concerning my artificial urinary sphincter (AUS) continues. In other words, I can urinate naturally without squeezing me control pump and still no significant leakage. As much as anything else for this reason I am still coping and able to go to London by myself and manage to do so today without falling over!

I usually start the day doing 20 minutes of gentle exercises which I have done for over 30 years.

I find I can no longer plug in my razor or my electric toothbrush as the socket is above my head. I’m still managing to shave OK with my electric shaver but only by lying down on the bed – the shaver itself is quite heavy. Somehow I don’t think it will be too long before someone else has to shave me and operate my electric toothbrush.

After breakfast in bed I then take a shower which I can manage myself – just – but I do need a hand with the drying. I can manage my legs and lower parts but my wife has to help me with the rest of it. As I can still raise my arms above my head I can manage to get my vest and shirt over my head, although I must admit it is becoming a little bit of an effort and it only possible by me throwing up my arms high into the air. From that point on, my lovely helps me finish dressing, particularly with my socks and trousers. If I’m wearing a tie, say, to go to London, these I have pre-tied and they just slip over my head. There is no way now that I could possibly tie one myself. We finish up with my lovely brushing my hair which again, although I can get my hands up to my head I cannot comfortably work around even with the long handled comb that I bought.

For meals I now have a selection of spoons and forks with a large rubber handles which I made myself from hollow piping – so much cheaper than buying the ready-made ones. ‘My lovely’ has bought me some two handled, lightweight plastic tumblers – mugs that I can also use with a straw as I am finding it difficult to lift a heavy cup up to my mouth. I travel about with my own special cutlery and two handled lightweight cup, even in the smart restaurants. I eat most things with a spoon and can manage quite well, provided someone cuts up the food for me. What I really need, and I will make one if I cannot buy one, is a shover. In other words instead of using my finger to push things onto the spoon I can do it more elegantly with a special piece of cutlery. I am sure I’ve seen such a thing in a infants feeding kits somewhere.

The other thing, that has made eating a little easier, is a wrist splint that was provided by the hospital, which I put on before eating. It just gives that little extra support. The MND unit have also provided a very expensive and complicated looking armrest which is clamped to the side of my armchair sidetable. It certainly does help by taking the weight of the arm but for the moment I seem to manage OK with just the wrist splint.

Once I am up and dressed I can pretty well cope by myself, spending the day in the office, with the occasional hand to plug things in, lift heavy files out of the filing cabinet or to trim paper etc. I’m spending most of my time, at present, trying to finish my autobiographical notes whilst I still have some use on my hands. Frankly, although I rely heavily on voice activation, I do not fancy this amount of work when I’m trying to operate a mouse with my foot.

When I get into bed, at night, I’m able to sit up and read comfortably as my lovely has generously bought me a sort of rubber armchair which sits on the bed. Having said that it is becoming more difficult for me to position myself in this ‘armchair’ not being able to use my arms to push my body back. I can manage it by wriggling inch by inch but it does take me a few minutes.

Heavy books I find almost impossible to handle so we place them on a sloping bed tray and hold the pages in position with an elastic band. The e-book should be here shortly so that might make reading a little easier.

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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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5 November 2009

Posted by DMC on 5 November 2009 in Diary |

After a good  night’s sleep, Mick and  I spent the day in my office beginning to catch up with more e-mails,  thank you e-mails to all those wonderful people who had been so kind to us on our visit etc. neither of us being prepared to recognise that there is anything approaching jet lag.  However we decide to give  the communal fireworks party in the nearby village of  Newport, a miss.

At this stage I think it is a convenient time to assess my physical condition and how I managed on this trip.  Of course, the good doctor attended to most of my personal needs.  He insisted on sponging me down in the shower, dressing me, collecting my food, cutting it up and occasionally even spooning it into my mouth.  Once up and dressed and fed the only other thing I needed help with was lavatorial and, being a doctor,  none of this caused him  any concern. As he said himself he has seen more bottoms and I have had Sunday lunches.

I can still managed to shave myself after a fashion with my electric razor.  I have always shaved in bed, in any event, so lying flat on my back and planting the razor in my  right hand behind the permanently curled fingers and clasping that hand with my left hand, which like the other, is half permanently curled, I can move the razor around my face and neck.  I don’t end up with a very professional job but probably just enough to avoid me looking like one of those young (apparently) sexy unshaven male models which we see on most advertisements today!

The shower at home is over a bath which I have to step into, this I can manage at present but I wonder how long it would be before we have to dispose of this lovely deep cast-iron old-fashioned tub and replace it with a rather nasty walk-in shower.  Teeth is another thing I am still just managing  – after ‘my lovely’ has applied some toothpaste to the brush – by virtue of my fancy electric toothbrush, which tells me when I have spent 30 seconds on each quadrant!  My only difficultly is turning the brush in my hands which I can do in a rather clumsy fashion but maybe at some stage this task too will be have  to be handed over.

Beds can be a slight problem particularly my lovely’s antique four-poster which is rather high off the ground.   I’m now using a stool to get in. I know ‘my lovely’ is keen to replace it with some sort of orthopaedic bed but as I have slept in it for the best part of 50 years and my darling daughter Chloe was born in it and my little grandchildren have crept into it in the early hours of every Christmas morning, when they have spent Christmas with us, eagerly anticipating opening their Christmas stockings, as I hope they will again this Christmas – their parents not wishing to know at 5 a.m. in the morning – I am loathe to get rid of it. I have no difficulty in turning over and to some extent adjusting the bedclothes using my legs and elbows. I do  find it virtually impossible to pull up the duvet around my neck which can be a little annoying when it’s rather chilly.  The other thing I find difficult is moving the pillows. Even the lightest down pillow is too heavy for me to lift other than clenched between my two-fisted hands.

Talking of beds, for as long as I can remember I have kept a large pile of cut paper by the side of the bed with a pen on which I would records notes or ideas which came to me during the night. I did all this in the dark when my ‘my lovely’ still slept with me. Now, sadly as I can no longer write so I have recently turned to a Dictaphone which, although I have some little differently in pushing the record switch, enables me to continue this rather bizarre habit.  Some of my very best ideas have come to me in the early hours of the morning after my two or three hours deep sleep.

Although the good doctor sat at the back of the hall, during some of the Beijing lectures, I insisted that he went sightseeing for two of the three days but I did have  a student with me who turned the pages of my lecture notes and pressed a key, on my laptop, to change the PowerPoint slide where marked. So this side of things went very smoothly.

There’s no doubt, however, that I have weakened during the last month both  in my arms and legs. For example, on returning home, and resuming my morning exercises, I can no longer raise my arm from the floor when lying flat on my stomach. More than once, on this trip,  I found myself in a squat position unable to get up.  On one occasion, in Hua Hin,  I got stuck in a tuk tuk unable to move forward or back. It took the driver and the doctor a bit of shoving and pushing to get me into an upright position onto the seat. On another occasion, when I dropped my plastic room card and attempted to recover it, I found myself wedged against the door practically on my knees, again unable to move. My right arm now occasionally locks rigid and I have to throw my weight into it to bend it. One night I managed to fall out of bed and hit my cheek on the bedside table when reaching for my water.

Once on my feet however, in an upright position, I am able to walk fairly normally albeit a little more slowly than before.  It will be interesting to see how I manage to walk around the golf course next Tuesday.

I am still able to use my laptop as the forefinger and middle finger of my left hand seems to have frozen in an almost horizontal position which is very handy for operating my mouse or switching lights on and off. I have to be particularly careful about shutting doors. On several occasions I have had to ring through to the house to get ‘my lovely’ to open my office door which seems to jam on the cill. Bill, our carpenter, is coming shortly to fit a new cill to overcome this problem.

When away from home, if I use a toilet for the disabled, I usually get a friend, or the attendant, to stand guard outside so I do not have to lock the door and then I usually ask them if they will be kind enough to assist me to adjust my dress. Most people are obliging and do not seem to mind.

I have decided that my driving days are over as I cannot risk having an accident if my right arm locks solid. This means that I shall shortly dispose of my car although I have no high hopes for getting a good price in this current market.

‘My lovely’ has now taken over the duties performed by the good doctor, washing me etc. where, prior to this trip I was able to manage myself.  At all mealtimes I now wear a full-length apron as eating has become a rather sloppy affair, frequently dropping food from the angled spoon, into my lap.  At home I have my articulated arm rest which still enables me to feed myself, albeit rather clumsily. I am working on the design of a sling which will go  from foot to foot, around the back of my neck, connected to the wrist of each hand, which I’m hoping will enable me to raise my right hand to my mouth when I am eating away from home and do not have the articulated arm rest.

Drinking is now done almost entirely in my two handled lightweight mug using a long straw. Smoking is still possible by clamping the cigar, into the spring clip screwed to the top of the freestanding cigar holder which I designed and had made by my carpenter.

Lastly there is the problem of signing my name.  This had to be done on several occasions during this recent trip on arrival and departure cards. In many instances the good doctor had to forge my name. He obviously didn’t want to get embroiled in an hour long discussion and I imagine there must be some system that enables an illiterate to make his mark. I have already given ‘my lovely’ authority to sign my cheques so I am completely at her mercy over my money- I just hope she doesn’t run off with the milkman!!  But how do I cope in other circumstances when she is no longer with me? I can give her a general power-of-attorney but when she is not physically standing next to me how will the person to whom I’m speaking and who is demanding my signature, know that I have authorised the pre-signed cheque?  Clearly there is a procedure as I’m not the first person to find myself in this position, so I must make some enquiries.

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10 December 2009

Posted by DMC on 10 December 2009 in Diary |

On Friday I went to London and had lunch with two old friends in a rather smart London restaurant. I met them at their office and before we left to go to lunch I asked the senior partner to accompany me to the disabled lavatory to give me a hand. I managed to undo my trousers and gain access in order to have a pee and cover myself up afterwards to a reasonable degree, by using the loops I had had sewn onto my underpants, but after that I needed help in adjusting my dress — my hands are simply too weak to pull up and adjust my trousers. The senior partner was very jolly about the whole process and there was no loss of dignity involved.

When we got to the restaurant my hosts donned on my apron,  fitted with my two wrist supports -one fitted in with a shoover, another little gadget I designed and had made – the sort a baby uses to push food onto its spoon – and a new  ‘invention’ of mine,  a wipeable cloth sleeve for  my left arm. I thought up this one because I’m having difficulty raising my right hand to my mouth with a spoonful of food. However, if I assist the arm by pushing it up with my left one, I can feed myself- thus the need for the sleeve, to protect my clothing, against  any food which spills off the spoon.

Having had this new sleeve idea that got wondering — why did I have to think of it and why couldn’t I have been told by somebody else. I am not the first person to have weak hands or arms from MND and there must be thousands of others who have experienced the same difficulty and have come up with solutions. Where are these recorded?  Why for example was I not given a leaflet with lists of practical suggestions on which other sufferers and carers have come up with. They may well exist and if so why have I not told?

I look on the MND Association website and find a Hints  &  Tips section which refers to a number of  support organisations. Yes, you can be directed towards branch groups and volunteer bodies to assist  you but, at the end of the day, it is the MND sufferer, or the carer, who has to come up with a question and seek the answer, or reinvent the wheel. My GP is always happy to refer me to an organisation, or consultant, provided I initiate the enquiry but she does not have any knowledge at all about MND, nor indeed it seems does anyone else in the practice.

I note, from the Association’s web page, that there is somebody called a Regional Care Advisor (RCA). Personally I’m not aware of such a person unless it is the lady who runs my MND assessment unit at the hospital. I would have hoped that this RCA was the person who gets an MND patient seen quickly by one of the many other services available to assist. The problem is when it comes down to it an MND sufferer has no greater right to a speedy referral than any other patient, despite the fact that his/her lifespan might be extremely short, and such referrals have to be made through the GP. An appointment with a physiotherapist, might take six weeks. Presently, I am trying to get a consultation with the Orthotics Department at my local hospital but am told  there is a 35 week waiting list. Once I have had a consultation, and perhaps persuaded them to make the lycra gloves, which I believe could be of great assistance in extending the use of my hands, this may take  several months and therefore, at the end of the day, not provide the help I need now.

(Postdate entry -12 Dec. It seems that I maligned the NHS . Having spoken to the consultant on Thursday I received an appointment but this morning for New Year’s Eve.)

AbilityNet – for whom I have the highest regard for their generosity in providing equipment to assist sufferers to use their computers  – take far too long between initial consultation and the training they provide to use the equipment. In my case 4 months or so. Bear in mind, we are told, on being diagnosed, that we have a potential life span of 2 to 5 years and that  50% of sufferers die within 14 months of diagnosis (this cheerful fact being confirmed by Henry in the documentary – see below).

Where is all this gripe lading to. I am only too aware that there are thousands of kindly people who are trying to help, not least the MND Association, however, what I’m suggesting is, there is not enough early hands-on assistance given. Maybe the RCA should make an appointment  soon after diagnosis to go through various practical assistive  options.

While I am banging the drum I will make one more observation. I noted from the MND website that there was a programme on Channel 4 on 4 December entitled Into That Good Night (inspired by  Dylan Thomas’s poem – Do Not Go Gentle into That Good Night). This programme featured, amongst others, Henry, an MND sufferer, but it was only by accident that I came across it, as I happened to be looking for something on the MND Association website, and discovered the programme.  I wish I hadn’t. I found the film perturbingly depressing. As the press release said ‘it provides a rare insight into what it is like to live with the knowledge that you might soon die.’ How inspirational is that ? To be fair to Henry, the MND star in this film, I felt that he did not provide any comfort to other sufferers whatsoever,  quite the opposite.

We saw little more than just his face which most of the time was utterly miserable or crying and learned how frustrated and angry he was by being visited with this disease. Frankly, I do not think that such a programme did anything to advance the awareness of MND or how one can cope with this insidious disease . Apologies to Henry, I’m sure he did his best, but he certainly wasn’t ‘going gently into that good night’. I’ do not read Dylan Thomas’s, ‘Rage, rage, against the dying of the light’ as  literally meaning the need to express anger and rage. This, I think, is best illustrated by the penultimate verse of this poem:

Grave men, near death, who see with blinding sight

Blind eyes could blaze like meteors and be gay

Rage, rage against the dying of the light

I’m given to understand by an unimpeachable source that Thomas was really talking about ‘enrage’ at his father’s death, not rage at all. However,  Enrage, enrage against the dying of the light would not scan properly.

Of course, we are all frustrated, that is a perfectly normal reaction, but the message to get across is to get the best out of what you’ve got left. That is the whole purpose of this blog. I too was told of the 2 to 5 year death sentence and the possibility of dying within 14 months but then I was also informed that one in 10 can  live for 10 years, or more, so I immediately raised my hand and said I will have that one. My gripe is therefore with the MND Association for publicising this in the first place. I know I will not make myself very popular by taking this stance but I shall be interested to learn other people’s viewpoints. Maybe I am alone in the way I think about such matters.

Then we have one of the MND Association’s leading patrons, David Niven, whose only contribution seems to be,“ Whatever you do, don’t get this bloody awful disease” A pretty pointless comment. As if any of us have a choice. However, there appears, on the MND website, a great number of far more positive and inspirational comments,  from many other sufferers but the problem is the writing is too feint to read and does not stay long enough on the screen. Perhaps something can be done about this so that we could benefit from the experience of these brave and positive people.

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