Posted by DMC on May 31, 2009 in
Diary The last two days have been absolutely glorious English weather – azure blue cloudless skies, a temperature in the mid-20s and a cooling breeze. I have taken advantage of it to indulge in one of my favourite pastimes au naturel au jardin, behind a suitable screen, of course, however I wonder what my friends think when they ring me on the mobile and hear the loud sound of birdsong!
When I was in the garden the telephone did indeed ring but it took me so long to get up from the grass that I missed the call. I then realized how very weak my arms had become. It took a great effort to get on to my stomach and lever myself up on my elbows. The one good thing is that I no longer suffer from cramp. The quinine which was prescribed a couple of months ago seems to be doing the trick.
Whilst I was relaxing in the garden one of the programmes I listened to was Gardners Question Time. One of the contributors mentioned a gardening book written in the 17th century which recommended sticking feathers into the ground around your vegetables in order to scare off the birds. Not one of the great gardening experts seem to have heard of this idea. It struck made that here was a commercial opportunity. Strike a deal with the poultrymen who prepare pheasants for the oven. Purchase from him the birds tail feathers. (I’m not aware that they have any other use at present, hats en masse, being no longer de rigueur). Package these feathers up in bundles of six and sell them in garden centres as Keep the Birds off Your Veg (Direction – just put them in the ground here and now amongst your precious plants). If I was a little younger I might even follow through with the idea.
Tags: gadgets
Posted by DMC on Aug 7, 2009 in
Diary A nice young auxiliary nurse, Kelly, came and cut my fingernails. What is even more encouraging is she has agreed to pop in every 3/4 weeks to repeat the process. However, she accepts that this is not an ‘as of right’ service provided by the NHS, so I have now written to my MP on the subject.
My back scratcher, which I have had bent to a 135° angle as my arms are not strong enough to reach behind my back, was returned to me today. However, I can see now that the ideal angle, for someone in my position, would be probably one closer to something like 30°. I shall experiment.
Lunch at the Axe & Compasses, Arkestan with John Power and Michael Reynolds, who has recently ended an eight year marathon at LSE to earn his doctorate – well-deserved.
Tags: friends, gadgets, grooming
Posted by DMC on Sep 3, 2009 in
Diary Yesterday I went to the Saffron Walden Community Hospital for my six-weekly toenail session with a very cheerful podiarist, Sarah. In view of my driving difficulties I asked if they did home visits but apparently 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, 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. Apparently an engineer will come to the house and set up the equipment sometime towards the end of October. This division all the NHS cover us or environmental services other than those connected with computers. This is the province of AbilityNet.
Tags: gadgets
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 11, 2009 in
Diary Lunch at home today with 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 ‘kindle’ (e-reader). Of course, I have the Sony version which I have yet to activate. I understand 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 “I 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.
Tags: gadgets, weak hands
Posted by DMC on Oct 3, 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!
Tags: feeding frame, gadgets
Posted by DMC on Oct 9, 2009 in
Diary A good day. Lunch with one of my oldest friends, 92 year old Geoffrey Hanscomb, at my favourite fish restaurant in London, Skeekey’s. When I say oldest I mean the one I have known longest. GAH gave me my first holiday job, 60 years ago and we have been good friends ever since.
I started with my favourite scallops and crispy bacon on a thin bed of mashed potato. Then, on dear Geoffrey’s insistence, I had lobster thermidor. The chef kindly extracted all the meat and served it as a sort of risotto, which was easy for me to eat with a spoon. I then finished with a crème brûlée, the whole lot washed down with a couple of bottles of decent champagne between the pair of us. Spread over three hours there was no obvious signs of intoxication and I’m pleased to say, no ill effects from yesterday tooth extraction – could it perhaps have been the liquid anaesthetic!?
I must say the staff at the restaurant were very helpful. When I arrived I went to the disabled loo, leaving a senior member standing on guard outside waiting to assist me to adjust my dress when I finished. (I no longer bolt lavatory doors since I found myself unable to get out recently). When it came to eating, the waiters were happy to fix my wrist supports and provides straws so that I could drink without lifting the glass. Is it really true that drinking champagne through straws, or indeed any wine, makes it more alcoholic?
I say a good day because before walking the length of Charing Cross Road to the other side of Leicester Square Underground Station, both before and after lunch, I went to PC World, near Liverpool Street Station, to look at their scanners – my old HP Scanjet has given up the ghost after around 20 years – changed an electric toothbrush, which I bought recently from Boots and visited the Carphone Warehouse to get my mobile phone topped up in readiness for China. I really felt that I had achieved quite a lot. I even managed to stay awake, on the homeward train journey and get out at the right station where I was picked up by my lovely.
Tags: gadgets, lunch, travel
Posted by DMC on Oct 12, 2009 in
Diary Gavin from Able2 – such a kind helpful young man – called in today to adjust the articulated arm support which I use when I’m eating. It elevates my hand to my mouth which makes the whole process of eating less stressful. This arm support is, of course, an alternative to my own feeding frame. The difference being that its cost is, I am told, around £800 ( but provided free to me by the NHS) against, what I hope will be a cost of no more than £200 if the feeding frame ever gets into full production. I am pursuing a very interesting line of inquiry at present, in connection with the furtherance of my ideas, but cannot disclose a name until I have something positive to report.
Tags: eating, feeding frame, gadgets
Posted by DMC on Oct 15, 2009 in
Diary Lunch in London, at Mercer’s, in Threadneedle Street, with my publishers, Informa Group, and Professor Robert Merkin, who is collaborating with Dr. Julian Critchlow, on the Fourth Edition of my large tome, Arbitration Practice and Procedure – Interlocutory Hearing Problems. It was good to meet Robert at last as he is one of the other big names in arbitration publishing. I’m confident that between him, and Julian, they will do a good job of the update.
Recently I’ve been having difficult in holding my cutlery which I have fitted with cellular foam tubing – so much cheaper than the specialist cutlery with thick handles. However, I’m finding these foam handles are slippery and therefore hard to grip with my weak hands. So I conceived the idea of applying some sort of pimpled surface, rather like you can get on a table tennis bat.. I thought I would be able to walk into a sports shop and get some of these table tennis bat covers and then, cut them up and stick them on to my cutlery handles. However this did not prove to be the case.
I then had a brain wave of ringing my friend John Gray, the erstwhile CEO of Gray Nicolls, the famous cricket bat manufacturers, originally from Cambridge. (He was the chap who gave me a wonderful week on his magnificent yacht in Elba last Summer). He got straight onto the case and telephoned son Nick in Australia, where some of the bats are now made. Nick reminded dad that they used pimpled surfaces on their wicket keeping gloves. Nick then contacted their factory in India, where this material is made, and a small batch is on its way. Wow, ‘ow’s zat,! I shall report further when it arrives.
Tags: gadgets, weak hands, writing
Posted by DMC on Oct 18, 2009 in
Diary Packing and final tidying up before the trip with a nice lunch at the Axe & Compasses in Arkesden. I had a phone call today, from my friend John Gray, re the pimpled material, about which I rang him only three days ago and which, through his son in Australia, he arranged to have sent from India. Can you believe it the package has arrived!! Amazing. In view of the impending postal strike, scheduled to start later this week, I think Royal Mail may have to look to their laurels.
The other big excitement today was having my fingernails cut by the social services nurse. She made it clear that they were doing me a favour so I will be very interested to learn the outcome of Sir Alan Hazlehurst enquiries – following my letter to him on the subject- to the Essex County Council about the provision of such a service to all elderly citizens of this County.
Tags: gadgets, grooming
