I went to London today to the Law Court Branch of the Arbitration Club Lunch.Â I drove to Bishop’s Stortford but on the way decided to fill up with petrol.Â Unable to lift the lever releasing the petrol cap and also being too weak to squeeze the pump, I asked a kindly lookingÂ customer for assistance when he had finished filling his own tank.Â Unfortunately, between the time of asking and his coming to assist I had managed to topple over backwards so, in fact, I had disappeared from his sight from the other side of my car.Â Fortunately for me he decided to investigate and found me lying prone.Â This is theÂ fourth time this has happened so I suppose it must be something to do with loss of balance or weakness of legs which I must mention to the MND team when I see them next week.Â After this kind gentleman had helped me up and filled up my tank, on the way out I got him to push in my safety belt and turn the ignition key â€“ both of which I find now almost impossible to do myself.Â By this stage he looked rather quizzical. I’m sure he was wondering whether I should be allowed on the road at all (or whether he was even on Candid Camera) however, IÂ assured him that once I was on the move I was quite safe.Â I’m not sure that he really believed me.
At the Arbitration Club lunch one of the lady members was only too happy to fit my wrists supports and to cut up my food.Â On the whole I find most people are immensely helpful provided they are approached in the right manner.
I also took advantage of this trip to London to go into the Chinese Embassy to apply for my visa. What a performance.Â There was no way that I could get it in one day and therefore have to get back next week to pick it up, at the exorbitant cost of Â£64.50p.
Yesterday I went to the Saffron Walden Community Hospital for my six-weekly toenail session with a very cheerful podiarist, Sarah.Â In view of my driving difficulties I asked if they didÂ home visits but apparentlyÂ you can only get that if you are bedridden.
Today, a very helpful occupational therapist from the Environmental Control Equipment Division of the NHS, came today together with my own occupational therapist, Corrine, to discuss what sort of equipment they could provide for me,Â if and when I lose control of my hands altogether.
We sorted out quite a sophisticated looking package through which I will be able to turn on lights change channels on the television, switch on the radio, all by pressing a remote control or using a foot control.Â Apparently an engineer will come to the house and set up the equipment sometime towards the end of October.Â This division all the NHS cover us or environmental services other than those connected with computers.Â This is the province of AbilityNet.
Today a courier arrived with an oximeter for me to use in preparation for my visit to Papworth Hospital next Monday. I believe that they are testing for any possible weakening in my diaphragm which will ultimately affect my breathing. All I have to do is to wear a clip,Â overnight, on my forefinger, attached to the oximeter. The machine apparently records and stores information concerning the amount of oxygen in my blood whilst I am asleep.Â No doubt, I will learn more when I go to Papworth next Monday.
As this is now passed the second anniversary of my first noticing the weakness in my left hand i.e. the onset of MND,Â I have decided to carry out a complete reappraisal of my daily activities in preparation for my quarterly check-up at Addenbrookes next week. I think the easiest way I can do it is to work from bed to bed — morning to evening.
I am almost always awake just before six when â€˜my lovelyâ€™ brings in the first morning tea.Â I listen to the Today programme and then start on my pelvic floor exercises and back stretching.Â These exercises, done in bed.Â Take around 15 minutes. These pelvic floorÂ exercises, I am convinced, help me to continue to pee normally in conjunction with the Artificial Urinary Sphincter, in other words the miracle continues.(See May 2008 /January 2009 entry)Â (Full details of all of these exercisesÂ can be foundÂ by downloading the .pdfÂ link in the 13 May 2009 entry).
Between these exercises and a second cup of tea I usually manage to shave.Â This I can only do lying down, due to the weight of the electric razor, and now need both hands.Â Being right-handed this task has become increasingly more difficult but I’m still managing to get a reasonable shave.Â Once I lose the use of my hands altogether I wonder whether I will be able to clamp the razor into some gadget, or other, and then move my face about against it?
20 minutes or so before my breakfast is brought up I am out of bed and doing my floor exercises.Â Again these take around 15 minutes.Â The most telling one, from my point of view, is lying flat on my stomach raising one arm and the opposite leg and arm inches above theÂ floor and holding that position for six seconds.Â This I repeat five times on each side.Â To-date I can still raise both limbs and hold them but only just.Â I shall know when my arms have weakened further when I can no longer raise them and my legs from the floor, and hold them there, so this will be a good indicator.
I then get back into bed and await my breakfast tray. This means sitting up in the large rubber arm chair which â€˜my lovelyâ€™ bought for me, wedged in withÂ pillows.
Getting myself in an upright sitting positions in this â€˜chairâ€™ has become more difficult since we recently removed theÂ board under the mattress which was causing me to wake up with a stiff back in the mornings.Â It is the weakness in my arms which makes any movement in the bed more difficult. Not only that but pulling up the bedclothes has to be affected with a combination of legs, elbows and clenched fists.Â A pillow is about the heaviest thing I can lift between my clenched hands, having no grip strength in either hand.
Over my coffee I frequently attempt the Times No.2 crossword puzzle although my writing has become so illegible, with a floppy, virtually uncontrollable, right-hand which can take two or three minutes to get into position to write a single letter, I have decided, this very day, to abandon the attempt and rely on Alice to write in the answers.
I usually get up around 8.15-8.30 when I clean my teeth with a sophisticated electronic toothbrush. This required a certain amount of manipulation with my hands which I am finding increasingly more difficult but if I get to the point when I cannot use this device myself it will not be too difficult for â€˜my lovelyâ€™ to do for me. It should certainly be easier for her than with a traditional toothbrush. Alice has to plug in the toothbrush (and the shaver unit) as I find it extremely difficult to raise my hands high enough and then exert the necessary pressure.Â She also has to change the heads on the toothbrush, morning and evening, which I don’t seem to be able to pull off for myself. The other job which has to be done for me, once a month, is to remove my pills from their blister packs into lidless small plastic medicine bottles from which I can then tap out the necessary dosage.
I then go down to my own bathroom. I start each day by using my wonderful â€˜wash and dry looâ€™ in the hope that I will not need to go again anywhere else during the day.Â On the whole it seems to work pretty well although I still finish off with a baby wipe, however this manoeuvre is becoming increasingly difficult. I have a special loo book which I read during this process as it tends to take a little longer than it would under normal circumstances.
I then step into the shower and can still manage to wash myself reasonably well with a sponge on the long handle.Â This enables me to wash parts I could not otherwise reach!Â Until very recently I was still able to get my hands up and squeeze out some shampoo and make some sort of effort to wash my hair but over the last few days I found this more difficult and so Alice now does it. I can still dry my lower â€˜central partsâ€™, after a fashion, which enables me to retain some element of dignity but beyond that Alice does the rest.
â€˜My lovelyâ€™ usually puts out my clothes, the night before and helps me to dress, althoughÂ I can usually get on my own underpants, particularly those with the three loops that I have had sewn onto them. Alice usually does the rest of the dressing.Â Certainly buttons are beyond me but I can make a shot with my trousers having had all the zips fitting a key ring; the clips and buttons removed from the top and substituted with Velcro and a cloth loop which I can usually drag across.Â All of my ties have been pre-tied and just have to be slipped over my head and pushed up to the collar by Alice.
If I am going to London or for an important appointment â€˜my lovelyâ€™ even finds me a fresh rose for my button hole, which it has always been my habit to wear.
On days when I am not seeing anyone or going anywhere, other than my home office, I may well wear one of the longhiâ€™s (skirts!) which I have had made.Â They wrap around my waist and are held in place with Velcro and have a cloth loop at each end to facilitate the process of putting them on. Wearing these makes the business of going to the loo, that much easier, on those days when I left on my own and there is no one to help me adjust my dress afterwards.
The myths about the whiskey and aspirin, reported above, leads neatly into me cataloguing the other medication I take daily.
I start the day with two 50 mg. Rilutek washed down with a Berocca tablet, which is, in effect, a vitamin and essentialÂ mineral supplement which is meant to give you â€˜get up and goâ€™. Heaven knows if it does any good, but it certainly can do no harm. In the early evening I take one Cod Liver Oil and Garlic capsule and one 375 mg. Quinine Sulphate pill (for cramp).Â At bed time I take two further 50 mg. Rilutek, two sleeping tablets (Zopiclone 375 mg) and two 5 mg. Diazepam.Â This ensures that I usually get around three hours unbroken sleep followed by catnaps until the early morning.
Once I am dressedÂ I am then ready to go to my office â€“ 20 yards or so from the house – which is usually around 9.15,Â where I will happily spend the rest of the day until around 6.30 – 7 o’clock except for a lunch break of around 1 Â½. hours when I usually watch the news or something else on television. Once Alice has plugged in my laptop I can manage pretty well in the office except for turning over pages which I do with the aid of pimpled rubber finger stalls. She pops in, on from time to time, to see if I need any help, for example, to get files from the filing cabinet or to do some filing.
In the office I have a Belkin unit into which all of my gadgets are plugged as it has seven USB portsÂ andÂ a single connection to the laptop which Alice makes for me. At 6.00 â€˜my lovelyâ€™ will bring a small whiskey which I then have with a small cigar. My daily treat. Once lit by AliceÂ I find that I can best smoke the cigar from my own invented cigar holder, a wooden lavatory roll holderÂ with the spring clip on the top (cost Â£2.95) , which saves the cigar from slipping through my fingers, and burning holes in my clothes or the carpet, as it did in the past.Â This then is my typical day seven days a week except for those days when there are things happening, or I’m not working in the office, which are not infrequent, as will be seen from the rest of the diary.
The days that I spend in the office are almost always working on my laptop.Â Either dealing with e-mails, updating my blog, sending business letters, revising lectures etc. Up to this point of time I can honestly say that I have not been short of things to doÂ although the laptop has become more difficult to use due to my weak hands but fortunately the forefinger on my left hand seems to have become rigidly fixed almost horizontal which means that I can still operate the mouse with this finger.
What I find most difficult is picking things up; paperclips, sheets of paper, pens, etc maybe I can get some device for the purpose. I did it quite heavily on my teeth for a number of tasks.Â Thank goodness that they are in good shape.
(AÂ 57-year-old fellow sufferer from Chelmsford has told me that he contracted MND 18 years ago and it has only affected his lower limbs and he plateaued out at that some years ago.Â I realise that this chap is a very exceptional case and that every patient is different but the MND documentation does mention the possibility of the disease plateauing which, from this example, gives us all hope that we might function longer than we expected.)
AbilityNet have been very kind and provided me with a lever mouse which for the moment I have no need to use as I am still able to use the â€˜frozenâ€™ finger on my left hand to poke the laptop. They have also generously provided me with an e-book, onto which I can download books,Â purchased from say, Waterstones, and downloaded onto my computer. This is something I will have to rely on more and more as most books are too heavy for me to handle. The only problem is going to beÂ to turn the pages which requires me to press a button on the e-reader, maybe I can get a foot or large hand control button from AbilityNet.
I’m very fortunate that I have been operating voice activation (Dragon Naturally Speaking Preferred) for many years now so that most of my work on the laptop is made that much easier as there is no way I could really achieve half of what I do, key by key, using one finger.Â Most of the time, the result on the screen is pretty accurate but occasionally, for no apparent reason, it writes gobbledy gook.
The other area with which I require assistance is eating and drinking.Â I have two good wrist supports into which I can slip a spoon or fork in the right-hand and a shoover in the left-hand.Â With the assistance of my feeding frame I can usually feed myself once the food has been cut up, most of the time using a spoon or spearing lumps with the fork. I have found, for instance, that eating sandwiches cut up into small pieces, is best affected by using a fork.Â I have several two handled the lightweight tumblers, for drinking each fitted with a lid with a mouthpiece and a hole for a straw.Â Most of the time I find that a straw is the easiest way of drinking.
What with the environmental people here yesterday (see 3 Sept. entry) and a visit scheduled for September 25th from an AbilityNet consultant to see what other equipmentÂ theyÂ can provide me with to make my life easier, I must say that I am extremely fortunate with my backup team.
With all this heavy medical discussion I have decided that it’s time I added another anecdote — see World Monopoly Champion — I have also persuaded my good friend Richard to add one more section to this Blog which I have named Jokes. The point is that I receive some splendid jokes from two particular individuals, one in this country and one in the US.Â Some of them are able to be repeated after one ignores those of a sexual or racist nature.Â So it seemed to me that it would be rather fun to share with my readers, some of these really good jokes, however old hat some of them might be. If they give any of you a chuckle on a day when you’re feeling low then they will have achieved their objective.
The second of theÂ 7 one-day series against Australia at Lord’s today.Â I’m so disgusted with England’s performance that I will only say that we lost by a street and did not distinguish ourselves in any area of the gameÂ However, cricket aside, I had a lovely day and met many friends both in the ground and on the Harris Lawn.
I made my long-awaited visit to Papworth Hospital today.Â I was there for nearly 4 hours undergoing a variety of respiratory and expiratory tests as well as having a chest x-ray and a lung blood test. Basically they were testing my FVC (Forced Vital Capacity) and checking my diaphragm for any deterioration in my breathing.Â I came out reasonably happy with the result having been shown to be 87% of the predicted FVC for someone on my age, weight and height. (With less sophisticated equipment the Addenbrookes team made it 93% in June).Â Papworth want to see me again in December and repeat all the same testsÂ and from the differences, if any, will be able to tell me roughly what they consider will be my â€˜slope of deterioration.â€™
Arbitration Club lunches,Â yesterday it was the Mother Club and today the Oil and Gas branch, both mercifully within walking distance of Liverpool Street Station. I was also able to pick up my visa from the Chinese Embassy before the Tuesday lunch.
The third of the one day matches against Australia today, whichÂ again, resulted in an ignominious defeatÂ for England.Â We have the agony of yet a further four matches -too many to my mind.
My quarterly assessments with me MND team atÂ Addenbrookes today. A little earlier than usual in order to clear me medically to go to China. However, I made it clear that whatever they said I would stillÂ be going. In the event, I got the all clear to fly – no likely breathing problems.Â The overall prognosis was not too bad. Although Dr. Alan could not rule out flailing arm syndrome neither could he be certain, at this stage, that that would happen to me.
It is quite possible that the deterioration of my hands and arms could plateau out, although personally I feel they get worse week on week.
I drew attention to the strong fasciculations in my legs which never seemed to cease but after examination the good doctor was not concerned and said that they could go on twitching for years — frankly he admitted that he could not predict, if and when, I would begin to lose the use of them.
AnÂ open-air lunch at the Great Duxford antique centre with the Gordons.
Lunch at home today withÂ a fellow MND sufferer and his carer. It was a very useful session in swapping ideas how to cope with our very similar disability — weak hands and arms.
One thing he had which I did not was a â€˜kindleâ€™ (e-reader).Â Of course, I have the Sony version which I have yet to activate. I understandÂ that a new kindle is to be launched at the end of the year, an Asus, which, it is claimed, will knock spots off the other version available, so I shall probably wait for that.
In yesterday’s papers it was a reported that the Lord Chief Justice, Lord Phillips, sympathises with terminally ill people seeking to end their own lives. In what he described as his personal view, Lord Phillips said â€œI have enormous sympathy with anyone who finds themselves facing a quite hideous termination of their life as a result of one of these horrible diseases, in deciding they would prefer to end their life more swiftly and avoid that (prolonged) death as well as avoiding the pain and distress that might cause their relatives”.
A poll published in The Times in July revealed overwhelming public support for a change in the law to allow medically assisted suicide.
This follows the debate on assisted suicide which was brought to a head in July after Debbie Pretty, who has multiple sclerosis, won an historic judgment from the House of Lords.. David Winnock, a Labour backbencher is attempting to change the law through a Private Members Bill.
The last day for me of the cricket season at Lord’s todayÂ – the fourth, of what had turned out to be aÂ disastrous -Â 7 one-day series against Australia.Â Sadly, the result for England was no better than the earlier three games…
However, it was the most beautiful summerâ€™s day and I had a great time with my chums, bothÂ in the ground, watching the cricket or chatting and drinking with them on the various lawns.
A sort of personal medical day. It started with the auxiliary nurse coming to file my fingernails. She was followed by a medical engineer adjusting the geared arm support attached to my eating table (kindly supplied through my Addenbrookeâ€™s Hospital MND NHS Unit)Â Finally, an optician, from Glasses Direct came to check that the replacement glasses sent by them, at no cost to me, were fitting properly.Â Having previously been very unhappy with this particular firm over the last order of glasses that I purchased from them, I have been very impressed over the way they haveÂ handled my complaint, and will certainly use them again.