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9 February 2009

Posted by DMC on 9 February 2009 in Diary |

Off to Australia, to stay with the same friends as last year and then onto Thailand, with Dr Long for a week, on the way home. Apart from requiring some assistance with dressing, provided my hands do not significantly weakened further during these intervening weeks, I should manage. After that I can only take it week by week. There are a lot of people out there willing to help, – occupational therapists, computer experts the MND Association, etc. but at the end of the day, much of it will be down to me personally.

In the meantime I have been busy designing gadgets which will not only help me but also other people with weak hands – arthritis sufferers, stroke victims, people with Parkinson, etc. My latest idea is for a feeding frame which can be very inexpensively mass-produced and, which I believe, will be of great interest to hospitals, care homes etc. or to anyone having care of infirm geriatrics.

While I was in Australia I had a videoconference with my team leader of XXWorks and she appeared to be very enthusiastic and encouraging. It is an exciting project.

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27 April 2009

Posted by DMC on 27 April 2009 in Diary |

Smiler’s birthday – 45 years old – 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 £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 34”. (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.

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1 May 2009

Posted by DMC on 1 May 2009 in Diary |

A red letter day in more than one sense. Most important of all I picked up the third prototype of my feeding frame. My larger elastic waistband trousers arrived and so did my kilt. I collected the feeding frame late afternoon and therefore I’ve had no time to examine in it detail.

The larger elasticated waistband trousers are a great success. With a bit of a struggle I can get them up out over my shirt and vest and now easy to push down. Each as they are basically to wear in my head office in the summer when I shall just wear a loose shirt and no vest these trousers will make life easier for me. The kilt I shall try on tomorrow.

The other important event which took place today was that I crystallized my SIPP, or in plain language I decided not to risk any further collapse in the stock exchange and sent my forms off to the pension provider to freeze my SIPP so that I can take my 25% tax-free lump sum. Much less than it would have been 12 months ago but nevertheless still worth having.

Reverting, for the moment, to my feeding frame, I have been horrified by the cost of specialized equipment for the disabled. For example, an adjustable table — not so very different from the one that I bought for £120 is offered from a different source for around £900. Similarly, which a device to catch cigarette ash can cost over £300, when, with a little ingenuity, it’s possible to make something that does the same job for a few pounds. Viz, touch my hands-free cigar holder made from toilet roll holder.

Ever since I was diagnosed with MND and started to require specialized equipment I have searched the net for some central source of second-hand gadgets and equipment at reasonable prices. No such place appears to exist. If it did I would very much like to hear about it. If it doesn’t, why don’t several of the big organizations get together and jointly fund a central distribution depot. The Disability Association together with other associations for MND, Stroke victims, MS and ME sufferers, and the like, could spearhead this initiative.

All of these associations are uniquely placed to know when one of their own dies and could discreetly approach the surviving partner offering to remove all the specialized equipment that has been purchased to make the life of the patient more comfortable. Most surviving partners would be only too pleased if this were done swiftly so as to remove daily reminders of their loss. I’m not suggesting that this equipment should not be paid for, although I’m sure, that in some instances, the surviving partner would be only too happy to donate it to a good cause. If a non-profit-making body, such as I suggest, was set up, this equipment could be sold on, at a modest profit, to another deserving patient, who might well not be able to afford new equipment at the exorbitant prices being charged by some of these so-called specialist equipment bodies.

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27 May 2009

Posted by DMC on 27 May 2009 in Diary |

My golfing mate Peter Southwick came this morning to look over the feeding frame. Like the nurse and occupational therapist who came recently he was kind enough to say it was a very good idea. He came up with a couple of very good suggestions for improving the design which I shall certainly follow. After that the question of how we marketed it after testing it in situ perhaps, in hospital or a care home.

It has been pointed out to me by my good friend Richard Morris, the blog designer, that I wanted to have click links to my Bionic Gloves and the Feeding Frame but I have decided that these will not become active until I have refined both products.

After Peter left I went up to London and had lunch with two of my sons’ contemporaries, both of whom I know extremely well and who were kind enough to shout me an excellent lunch which included some splendid wines, as Simon is in the trade. I disgrace myself coming home by falling asleep and missing my station. My darling wife, as always giving, did not make too much fuss about picking me up.

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1 June 2009

Posted by DMC on 1 June 2009 in Diary |

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 – 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.

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2 July 2009

Posted by DMC on 2 July 2009 in Diary |

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 ‘I was doing very well’. 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.

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31 July 2009

Posted by DMC on 31 July 2009 in Diary |

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.  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.

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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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16 September 2009

Posted by DMC on 16 September 2009 in Diary |

This evening, my lovely and I went to the Fenwick Elliott Garden Party on the roof of Derry & Toms. in the High Street Kensington.

It really is a very beautiful garden which brought to mind  the Hanging Gardens of Babylon which I imagine could have been similar. I was fortunate enough to visit Babylon in 1959 when I was working briefly in Iraq.  Of course, the gardens themselves no longer exist but at least I was able to see where they were supposed to have been.

I was extremely fortunate  in being able to walk down the recently excavated main street of Babylon, with its relief lions on the high flanking brick walls, where Nebuchadnezzar rode down in triumph, in the 12th century B.C,. having defeated the Assyrians.  I was practically alone, as it was long before this became one of the great tourist sites in the world.  An awe inspiring experience.

Fenwick Elliott’s, as usual, gave  great party with wonderful food but the venue was rather spoilt by a high chilly wind – so much for our Indian Summer! Sadly, this proved to be the first occasion when I found it almost impossible to get the spoon, in my right hand, up to my mouth without assistance from the other hand.  Just evidence of a continuing weakening.  Unless I can devise some portable adjustable support system I may have to start restricting my public eating appearances.

I have not given up on my feeding frame and have a number of leads which I’m currently pursuing to have it manufactured, marketed and distributed, However, where I originally thought it that this would be portable I have subsequently decided that that is simply not practicable, so I will have to think of something else for the occasional meal out.

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3 October 2009

Posted by DMC on 3 October 2009 in Diary |

For those readers who are interested in the progress of my gadgets — an update.

You may recall that I attempted to enlist the help of three knights of the realm who, by virtue of the previous posts they held, were very well connected with the City of London. I say were, because they are now all retired and some of their contacts, no doubt, are only lukewarm if alive at all! My intention had been, that through these three erstwhile City giants, to try to get a personal introduction to a senior director or chairman of an appropriate company who I could try to interested in one or other of my ideas. Having had little or no success with that particular approach, albeit that all three of my friends could not have been kinder or more helpful with their suggestions, I decided on the direct approach myself. After all however ‘important’ the person I contacted was, they couldn’t eat me.

I got onto the Web, found the contact details and telephoned the PA of one of the cleverest inventors in the UK who listened to me and kindly promised to try to get me a brief interview with the great man.

That was a couple of weeks ago. In a follow-up call yesterday she told me that I am still ‘on the list’. So I don’t give up hope. That particular contact was in connection with the feeding frame which is in the most advanced state of all the three ideas — at least it is in its fourth prototype.

The second of my ideas, the bionic gloves, I have decided to try to find someone within the giant GEC organisation. I think that these will be just up their street if I can get to the right person. A big if.

The third idea and perhaps the best of all, I have told very few people about because it is the simplest and easiest to put into production and therefore the most easily copied. This I am pursing through my good friend Peter Southwick and one of his contacts.

So, I have not gone to sleep on any of these ideas. Watch this space!

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