First of all let me introduce myself and the easiest way I could think of was to include a short profile which you will find here.
The following notes were never initially intended for a blog, but form part of the ‘Let me show you my scars’ chapter of the autobiographical notes that I have prepared for my family. Speaking of family I must warn the reader that my wife Alice is referred to in this blog as Al. Alice or occasionally as ‘my lovely’.
As the material was originally intended for the family it contains extraneous information which I have not bothered to remove as it makes the note less formal and more human. In any event I am including every day activities and social events so as to show to the reader what I can do one day and what I might find more difficult further down the track. I have also anonymized this version to eliminate the names, of the various doctors and consultants I have seen in connection with the MND, other than the two doctors and support nurse currently looking after me.
The purpose behind this blog is to give succour and comfort to other MND sufferers (and even those suffering from prostate cancer as I have a history of that built into the blog) – Caring through Sharing. Nil Desperandum and Carpe diem (Live for the day) and all that! I hope that some of my ideas and gadgets may give inspiration to others.
The main section on this blog is as you can see in the form of a diary. It starts at a time when I was initially diagnosed and records significant events in the progress of the disease as well as the effect on my day-to-day life.
I shall add to the diary from time to time when I have something interesting to say, or something significant has occurred. The diary itself is fairly lengthy but it is ESSENTIAL THAT NEW READERS READ IT in order to get the background to the subsequent entries. I should also add things that are not immediately apparently significant to other people maybe if one is suffering from MND.
In order to leaven the bread, so to speak, I have added an anecdote link and will, from time to time, pluck some amusing event or inspirational story from my autobiographical notes. I have started this link with two such anecdotes which you might find of interest.
Friends, who are only interested in checking on my state of health must excuse the mundane references to social events and the lavatorial activities. These are included, from a date around 18 months since my diagnosis, to give comfort to fellow sufferers. To show them what is still possible, perhaps with some degree of ingenuity, and therefore, what might not be possible in a few months time.
Then there is what I call the ‘readers page’ where you can share your ideas with me and other readers of this blog. I reserve the right to consider the content of any such contribution before it appears on this readers page. Any contribution should be addressed to dmarkcato@hotmail.com
I would be particularly interested to hear from readers who suffer from loss of use of hands. For example, arthritis sufferers or people who've had a stroke or even to thalidomide victims, some of whom have no hands and from whom, no doubt, I could learn a great deal. Well I hope we all get something out of this blog and I look forward to hearing from the readers.
Professor D Mark Cato
14 May 2009
PS 21 September 2009
This blog has been running now for around five months and the response has far exceeded my expectations. We have had around 65,000 hits to date, not only from the UK but from other parts of the world as well. Heart warming responses have come not only from other sufferers but also from carers. Even more exciting is the fact that the responses were not limited to MND patients. People connected with the terminally ill or friends or loved ones suffering from. long-term illness also seem to have found some inspiration from the blog. For this reason I have shortened the blog title to ‘Dying to Live’. in the hope that the content will continue to appeal to a wider readership.
In this regard than I ask each reader to consider passing on the blog address to their list of friends and relatives in the hope that someone, somewhere, will know someone who could benefit from the experience and draw comfort or support from the content or perhaps a little, much needed, momentary light relief from the anecdotes and jokes.
Latest Diary Entries
Duncan Johnston, from the publishers of the journal for the Royal Institution of Chartered Surveyors, came to see me today to do a small piece for the journal on my blog. I suppose the point is I’ve been a member now for almost 59 years, so that is sort of newsworthy.
Time I think thus the more extraneous material to amuse or delight you. You will find the following:
Anecdotes
Astronomers Select Top Ten Most Amazing Pictures Taken by Hubble Space Telescope in Last 16 Years – exquisite pictures.
Old Farmers Advice – amusing.
Jokes
Will I live to see 80?
Actual UK passport application letter
Why men should not write advice columns
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I went to London today to the Law Courts Branch Meeting of the Arbitration Club. One of our members, Keith Kirkwood, very kindly met me at Bishop’s Stortford Railway Station and taxied me from Liverpool Street station to the venue and back. It was very kind of him. I discovered something entirely new today. I was aware that taxies have been fitted with hydraulic platforms that can be lowered for wheelchairs and I did not know that the dickie seat by the door actually swings out over the pavement making it very easy to mount the cab. It then swings back and clicks into place during the journey. I shall certainly be happier taking cabs in the future as a result.
It was a good meeting and I was particularly pleased to see our long serving chairman Dominic Helps looking robust after a period of ill health.
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Ali very kindly dropped in today to massage the fluid out of my fingers and to manipulate my shoulder joints. This needs to be done on a daily basis so I suspect’ my lovely’, and Jane will have to muck in and help. It is so obvious to me that both of these operations are clearly helpful with weak hands and arms that I find it very hard to understand why my MND team have not recommended this to me some months ago. I can certainly take it up with them on my next assessment.
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Delicious lunch with Ali & Graeme Macrael. Going out for a Sunday lunch is such a civilised pastime, today sadly, greatly underrated.
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The Director of Public Prosecutions (DPP) has at last published some guidelines on assisted suicide. As a result, the Prime Minister suggests that this clarification under which those who assist someone to kill themselves may be prosecuted means that “the case for a change in the law is now weaker”. In other words the Prime Minister thinks we must resist the call to legalise assisted suicide .The DPP no longer considers that the prospect of prosecution is mitigated if “the victim had a terminal illness, or a severe and incurable physical disability, or a severe degenerative physical condition from which there was no possibility of recovery”. Significantly it seems that the naive assumption that a spouse who assists a suicide would always be acting compassionately has been removed and those who provide a Dignitas-style physical environment for suicide are more likely to be prosecuted. I am not sure how much further forward we are in this process but ultimately, I suppose, the matter will have to be decided by Parliament.
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A specialist neurological physiotherapist, Mel, came to see me today as a result of my enquiry concerning the possibility of exercises and massage helping to delay the weakening of my muscles as a result of the MND. I had read an article in the MND Association Newsletter from another MND patient who seems to have derived some benefit from physiotherapy, so I thought it worth a try. In the event, the physio made some useful suggestions for exercises and massage and is going to come next week and take me through them. Despite finding it difficult to get up from chairs she was fairly bullish about my legs and thought it would be some time before I would need a wheelchair, which is great news, if she is right.
Closely on the heels of the physio came an OT to measure me up for an electrically operated reclining chair, provided by the NHS. The only thing she has to check is that it can be in foot operated as I would not have enough strength in my hands pressing the electric button which operates it.
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In the event, the Daily Telegraph were true to their word and reproduced precisely what we had agreed to. So hopefully that is the end of the media frenzy. As a result of that article and the previous ones appearing in the Cambridge News and the Daily Mail, my e-mail box has been red hot with messages from all over the world, all of which, I’m glad to say, were complimentary and though some came from people with MND themselves and others from their carers, some from individuals who were just inspired by the blog which I found particularly encouraging. One, example, read as follows:
“Hi professor. i am a young guy in China, reading your blog is really help me a lot.
I awlays complaint when I am in some bad situation before, but now you make me know how to face trouble, how to have a positive attitude to our life. i really appreciate.
Now, I am definately sure nothing can beat me.
Anyway, we celebrate the Chinese new year (the tiger of the year) in our country. i wish you professor a good health like tiger, all the best in the new year.”
I have reproduced this precisely as it came to me, warts and all, but before anyone sniggers at this spelling and grammar, ask yourself how good is your Mandarin? What a wonderfully inspirational response this is. To think that this young man is not sick, dying or depressed but just inspired by the blog. It makes me feel very humble and certainly inspires me to go on writing it.
As a result of the two falls downstairs and being absolutely prohibited by ‘my lovely’ to make any further attempts to go upstairs, I have now slept in the sitting room for the last two nights. A strange sensation after the best part of 50 years in my beautiful four poster upstairs. However it was not as weird as I thought. The good thing is that I can still manage to get out of bed by swinging round and clutching onto an adjacent heavy armchair, If I need to go and have a pee in the middle of the night. This, instead of yelling for help from ‘ my lovely’. I’m spoiling her beauty sleep.
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As regular readers will know, I am off to my favourite hotel, the Anantara, in Hua Hin, Thailand in three weeks time with my good Australian doctor friend Michael Long. When I was last there I promised the Hotel Director that I would try to include a small video, on this blog, to show the world what a beautiful place it was. Thanks to another good friend, Monty, who made the superb DVD of the Athenaeum Dinner, this video has now been made, for tips on film taken by me over the years, and will shortly be included under the Video section, The Beautiful Anantara, Hua Hin, Thailand. Do look at it yourself and you will realise that I was not exaggerating.
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All hell let loose over the past two days as a result of the article in the Cambridge News. I have received calls directly or indirectly from The Daily Telegraph, The Daily Mail and the Sunday Times as well as calls from various BBC radio stations all requesting interviews. Whilst initially I acceded to the first request, that from The Daily Telegraph, ultimately realising how unhappy it was making ‘my lovely’ and my children, late last night, I rang the journalist and said I could not go ahead with the feature article. I have been too badly let down by the Cambridge News and whatever assurances she gave at the end of the day, with the best intentions in the world, she would not have complete control over the editorial substance or indeed sub-editing so I was not prepared to take that chance.
The problem is that there has been so much debate recently about the assisted suicide – almost every day someone confesses on the television at having ‘assisted’ a loved one ‘on their way’ because of unbearable pain or other – and the fact that very shortly a green paper will be published on the subject, has made this a hot issue and one which I suspect no national newspaper could ignore if I went ahead with a further interviews.
So, having given an undertaking to ‘my lovely’ and the children that that is the end of it, i.e no more media, I have weakened in one respect where one of the Nationals ‘were so excited about the blog’ that they have asked permission to publish some choice extracts with a promise of no accompanying editorial, other than a short introduction, and have offered to send me the precise extracts giving me complete freedom over any that I wish to delete (or indeed add) and control over the headline. I have said neither yes or no to this proposal but have promised ‘my lovely’ will have the final word, she will go through and decide on any deletions or addition. When she is completely happy I will also let the children see what is proposed and hear their views but I suspect they will agree with their mother.
What a business! I deeply regret having started with the anticipation of extending the readership of the blog to thousands more people, some of whom might have to derived some small comfort or pleasure from it and instead ending up with a great deal of aggravation.
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I have been very badly let down by the press. (See 17 February entry). ‘My lovely’said I was naive to give the interview, in the first place – and how right she was – but the journalist, Alice Ryan, seemed genuine enough and assured me she would honour the caveat that I laid down, before agreeing to be interviewed, that the emphasis was to be mainly on the blog and the benefits that I hoped it was conferring on others. To be fair, she did ring me and read out the entire text (against recognised journalist practice ) which I was perfectly happy was a fair representation of our discussion. The problem came in the sub-editing, which was precisely the point that I made to journalist that I wanted to have some control over. Instead, the editor included a rather poor photograph of me in colour, on the front page with the caption “ Why I’ll take my own life”. Then inside, we see a full page and a third of text, under another photograph, this one covering two thirds of the page, with the caption “ I’m dying – and I’m going to do it my way”. This is definitely not the way I put it.(why am I surprised!). What I actually said, after explaining the progress of MND and how one can eventually end up lke a vegetable unable to speak or move or swallow, was:
“…… when it gets to my throat, I’m going have a couple of bottles of Bollinger, soft music, my family around me, the old photos out, and I’m going to slip away, while I can still do it myself”
Having said that, these comments were only made in the context of the current debate about assisted suicide and form a miniscule part of the interview but, of course, as we all know, good intentions and beliefs do not sell newspapers but sensational and dramatic headlines clearly do. I am deeply disappointed as these captions are clearly depressive and go totally contrary to the objective of this blog, which strives, through logging my own experiences, and those of much braver people, to be inspirational and forward-looking and certainly not about dying. Let us hope not too many people see the article.
This whole episode reminds me of the story of the Bishop who, when he disembarked in New York was asked: ‘What do you think about the prostitutes in New York?’
The Bishop, slightly bemused and totally perplexed by the question, enquired, ‘Are there any prostitutes in New York?’ and it was his enquiry to the question that formed the precise headline to the report of the Bishop’s visit. Well, that’s newspapers for you.
To top off great day I managed to repeat the backwards tumble down the staircase that occurred two nights before. Again from the top step crashing to the floor below, taking ‘my lovely’ with me, who was following behind me halfway up the stairs. Amazingly again no broken bones but more bruises and scrapes. Alice got me back upright and I was forbidden ever to attempt the stairs again. Fortunately, only yesterday Alice had had the foresight to have a bed set up at the end of the sitting room, anticipating the need at some near date, but not, I suspect, quite so soon. I am clearly indestructible, as one of my good friends has said.
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I was meant to go to London to have lunch with my stockbroker Peter Long of Brewin Dolphin today, but he was tied up with some heavier corporate affairs, far more important than my piddling portfolio, no doubt, in any event, I was certainly not that keen to travel in this foul weather. Instead I spent the day marking Chinese examination papers.
We had rather dramatic event this evening when, going to bed I toppled backwards from the top step of the stairs, crashing my way all the way to the bottom, and managing to knock ‘ my lovely’ over on the way down. Very fortunately both of us were not badly hurt. Battered and bruised yes, but no broken bones. I certainly could easily have broken my neck. It certainly gave the old girl a bit of a shock, seeing me lying there all the heap. What caused the fall exactly I’m not sure.
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Being half-term, daughter Chloe came down with my three little grandchildren whom I had not seen since Christmas. Up to now I’ve made it my business to visit them every six weeks or so, in London, but with a journey time, there and back, of around five hours, is now becoming a bit of an effort, so I suspect that, from now on, they will make the journey to see me.
We went to Gluttons, in Saffron Walden, for lunch. There was some talk about going to the Museum after that but as they still have the Henry Moore sheep exhibition running and the children had seen it before, we spent the afternoon at home.
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Today I was interviewed by a delightful young journalist, Alice, from the Cambridge Evening News, which publishes the regional newspaper. I agreed to the interview with the caveat that the emphasis of her article should be to publicise the blog and its objective of helping others, and so far as it is possible; to downplay me as an individual. Inevitably, there will be some element of that but I truly hope that she does do not overplay that aspect.
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Today was a red letter day for the blog when the number of hits exceeded 200,000. It is now running in excess of 1000 hits a day, something in the order of 30 to 40,000 hits a month, so presumably someone, somewhere is gaining some comfort or benefit from it which, as I have explained at the beginning of the blog, is its main objective — to give comfort to the sick and the depressed in the hope that that in reading my story and dipping into the anecdotes, jokes and video clips of others who are worse off than themselves, who have magnificent overcome adversity, they will realise even a have something to be thankful for.
Since I have suffered from this disability I have found, on the whole, people are mostly wonderfully understanding and helpful. An example of this occurred today when Tim Reynolds, a partner in a major city law firm, who is, the chairman of the Arbitration Club, came to my office and devoted a whole day into assisting me to prefer some documentation in connection with the marking of the examination I set following my last visit to China in October. What a generous act from an important busy lawyer.
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Today two representatives from the Health and Design Technology Institute from Coventry University came to see me about some of the various gadgets I have invented to assist in daily living. I gave details of five different ideas, one of which was the Feeding Frame, which I’ve mentioned from time to time in this blog. I cannot disclose the nature of the other four ideas until I have had the opportunity to protect my intellectual property rights but in due course I will be able to tell my readers about these exciting idea. They were very encouraging about all five ideas and have gone away to prepare a proposal to develop the first of these with a view to getting it to point where I can disclose it to an internationally-based organisation who might find it sufficiently exciting to manufacture and distribute it, hopefully worldwide. I’m not holding my breath, but who knows.
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I don’t know about the Prime Minister, Gordon Brown being described, by Sarah his wife, as quite romantic for a man, I consider I have always been romantic. Today, I had delivered a beautiful bouquet of a dozen red roses for ‘my lovely’ which I gave her together with an enormous sloppy Valentine card. I’m sure much appreciated. On her part she had been to M & S and splashed out on one of their special celebratory St Valentine’s Day meals. Delicious and excellent value. I thought.
England had a lacklustre win against the Italians in Rome, in the 6 Nations Rugby championship. They will have to perform a lot better than that if they have any ambitions to win the championship.
A reader from Canada introduced me to a very funny lady, Jeanne Robertson. I have downloaded one of her monologues entitled ‘Don’t send a man to the grocery store’. If you enjoy that I suggest you log into http://www.itunes.com/JeanneRobertson and look at some of her other material.
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KUNG GONG XI FA CAI the message sent to 40 or so of my Chinese friends and colleagues being now or thereabouts, the Chinese New Year. Of course, if I’ve been really smart I would have differentiated between those who speak Mandarin and those who are Cantonese, who for them, I am given to understand, the greeting then would have been KUNG HAI FAT CHOI.
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Lunch today at my favourite restaurant, Sheekeys, off Charing Cross Road, with my dear old 92-year-old friend, Geoffrey Hanscomb. He was in great form with nothing more than the occasional touch of gout – in his case a medical condition rather than a by product of an excess of alcohol! I wonder whether this will be our last Sheekey lunch and which of us will go first? As his executor I really ought to hang around longer than he does. It is a bit of a struggle for both of us. I travelled by train to Liverpool Street station, underground to Tottenham Court Road and walked from there. Unfortunately, I started off down Oxford Street having got confused by all the hoardings put up for the Crossrail reconstruction of Tottenham Court Road Underground station. This added around 100 yards to the walk from Tottenham Court Road Station to the other side of Trafalgar Sq Underground Station. It is quite a stretch and was just about as far as I could manage with my legs. Anyway, I wonder how much longer I shall be able to walk that sort of distance.
Once in the restaurant, having arrived before my host, I decided to have a pee to make room for the champagne to come. This was accomplished by soliciting the assistance of one of the young waiters to stand guard outside the door of the disabled loo, as I can no longer manipulate the lock, and they once I had done my business, assist me to adjust my dress. He didn’t seem to mind but then what choice do I have. Similarly, when it came to ‘ dressing up’ with my two wrist supports, apron, wipeable sleeve and shoover, these were all put on in the best of humour by one of the Polish waiters.
When it came to going home, although ‘my lovely’ had insisted that I got a taxi, I was loath to do so, having had such a bad experience getting in and out of the taxi last week following and opted to travel by bus. I got back to Liverpool Street Station on the Number 23 bus but stupidly took the wrong turning and went down Duncannon Street, missing the main bus stop and found that I had to walk almost a complete distance of the Strand before I found a stop. When the bus arrived the driver, noticing my difficulty in stepping up, lowered the step which I thought was very decent of him.
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Nail day – feet and hands. Although I have these done privately at home, at my own cost, I am sanguine that between Sir Alan Haselhurst (the Deputy Speaker of the House of Commons and my local MP) and I, a free fingernail cutting service will shortly be introduced, by The Essex County Council, for all elderly people in Essex.
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I am beginning to have problems manipulating my electric toothbrush to clean my teeth. My hands are simply too weak to twist the brush in different directions. However I’m managing for the time being but I don’t think it will be too long before I have to get ‘my lovely’ to do it for me. Heaven knows how she will manage. She doesn’t really approve of electric toothbrushes.
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For all my diary entries, see Diary Archive ».
