4 September 2009
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.