Posted by DMC on Jul 11, 2009 in
Diary My wretched power shower packed up a couple of days ago, but good old Derek, our plumber, will have it back in action again in a day or two. The point being that with my disability I really rely on this rather than the bath.
Incidentally, I tried a bath a couple of weeks ago, during the very hot spell ( our summer!), while Alice was in London. It was a hot day and I was sweaty and thought it might be rather fun. Unfortunately I found I could not get out, despite struggling for up to an hour. I managed to swing my legs over the side but all the twisting and turning was without avail, I was simply too weak to lever myself out I even let the water out in case I landed on my face and drowned.
I did panic a little as Alice was in London until late afternoon and this was lunch time. I had visions of her arriving home and finding me sitting there, blue with cold, probably hypothermic, and subsequently being ticked off like a small child. Fortunately I had taken the mobile telephone up with me and managed to reach it by the side of the basin. I dialled the directory enquiries for my neighbour’s telephone number and found her in. Even more fortunately her son was with her and he popped over and hauled me out. I never told Alice. She would kill me if she knew but as she never reads this blog she may never know, leastwise, until I am beyond being ticked off.
Reverting to the shower, I should perhaps mention that the only reason I can continue to wash myself is by using a 3 foot long handled sponge. A cheap and useful device which I can recommend for anyone in my position.
Not a great deal has happened since my assessment on 2 July. Although I still spend eight or nine hours a day in the office most of it seems to be on the computer, answering or sending e-mails; dealing with correspondence; updating my blog; editing my autobiographical notes etc. (this week with one ear to the radio listening to the first of the Ashes Test matches, in Cardiff).
Talking of cricket I do hope you bloggers have read my latest anecdote, The Cricket Match. There always seems to be a backlog of things to do.
I did go to London on the 3rd. to lunch with my stockbroker; walked round the golf club on the following Monday (with the geriatric crowd – Tuesday becomes Monday sometimes when there is a match which interferes with the normal arrangements); I attended the Arbitration Club in London on Tuesday and tonight we are going to the first of two dinners, very kindly being given in my honour, ostensibly for services to arbitration. So life is not entirely dull.
Tags: blog, washing
Posted by DMC on Sep 4, 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 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. 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.
Tags: Abilitynet, Addenbrookes, Berocca, Cod Liver Oil, Diazepam, dressing, exercise, feeding frame, gadgets, garlic, oximeter, quinine sulphate, Rilutek, Riluzole, shaving, toilet, washing, whiskey, writing, Zopiclone
Posted by DMC on Sep 26, 2009 in
Diary With the Irish commitment out-of-the-way my thoughts have begun towards the lectures in China and wondering how well I will manage even with the good doctor’s support – certainly, there will be no liquid lunches on those three days!
I suppose I started thinking about this as I sat, in a deckchair, in the warm sunshine, on the most beautiful of early autumn days. Alice had popped up to the shops and I needed to go to the bathroom. It took me the best part of five-minutes to get out of the deckchair – indeed, at one stage I almost gave up and waited for her to return. It was then I realised how weak my arms had become.
This lead me to thinking how, when I was having my shower this morning, I realised that it was becoming increasingly difficult to hold and manipulate the long handled sponge.
I told ‘my lovely’, as she dried me, that I would try to hang on until I got back from China, by which time I was pretty sure that she would have to wash me and even perhaps operate my electric razor and toothbrush. Good evidence of the weakening of my arms is that once the wrist support is attached to my right hand it becomes too heavy for me to lift without assistance from the other hand.
Tags: China, grooming, washing, weak hands
