Posted by DMC on Mar 25, 2009 in
Diary I had a ‘remote assist’ call today with Abilitynet, the computer assistance arm of the MND Association. The senior assessor, who made the call, was extremely helpful and will be sending me some aids to improve my use of voice activation. She is now ‘on the case’ and as my hands grow weaker will provide all the assistance I need so that I can continue to work.
I should also mention that I received a call from Steve White, an MND sufferer himself and regional organizer on the charity side. The MND Association are very good about checking up, on a regular basis, with their members, just in case there is something with which they need assistance. I’m very grateful.
Tags: Abilitynet, MND Association
Posted by DMC on Mar 26, 2009 in
Diary I had my quarterly assessment with Dr. Allen and his charming support nurse, Joanna Sassons at Addenbrookes today. I asked the doctor to take an educated guess as to when I’m likely to lose the use of my hands completely. He thought perhaps six months for the left-hand, and shortly after that the right-hand.. I asked whether he could confirm that I was suffering from flailing arm syndrome and he said that he believed that I was. He guessed that I would lose the use of both arms with his 12 -18 months.
Legs seemed OK and Dr. Allen was sanguine that it would be a few years before these would be seriously affected. Similarly my diaphragm was okay therefore no breathing problems at present.
I discuss the various research projects which are being carried out at present or the results of which have been recently publicised. In particular, the effect of the protein Nrt2 on MND patients. The results of an American study were published on the 10th December 2008. Unfortunately it is early days yet as to whether this protein will assist MND sufferers. The researchers concluded that “if we can find drugs that can activate Nrt2 to a high-level we could potentially have an extremely potent therapeutic for neurodegenerative diseases”. So not much hope there in the near future.
We next briefly discussed the research into the therapeutic qualities on the Lithium for MND sufferers. I had a copy of the paper The Lithium ALS Worldwide Study: Six Months Update, published November 16, 2008. the key points of which concluded that contrary to the findings of the Italian study (Fornai et al), lithium alone or lithium plus riluzole was not found to be effective at slowing the progression of ALS over the six-month study period. The report continued “based on these results we find that low doses (150 mg/day) of lithium might be used primarily for the relief of painful cramps, but that lithium should not be recommended for most ALS patients”.
Finally, I raised the question of stem cell research of which there appears to be quite a lot going on. Whilst the earlier research reports are encouraging it is clearly still very much early days in this technology. In effect laboratory researchers are just learning how to encourage stem cells to develop into living motor neurons, providing a unique resource for studying them. This month has been a breakthrough in the creation of induced pluripotent stem cells (iPS) from adult human skin cells which could speed the research. Undoubtedly there will be some breakthrough in the future but whether it comes early enough for me is questionable.
One good thing to come out of the assessment was that Dr. Chris Allen, learning of my disappointment over the bionic gloves, very kindly offered to put me in touch with a professor in Oxford who he thought might be interested in developing the idea.
In the meantime, on the general front, I must say Alice she has been absolutely marvellous. Almost daily she turns up with some new piece of equipment or gadget to make life easier for me – a foam rubber armchair, to making easier sitting up in bed; a special tilt top tray to hold my book; a new lightweight dressing down as the old one was too heavy for me to lift; and so on.
I am obviously going to have to rely that can do to help my book while I’m reading in bed heavily on her over the next few months. I could not have a better nurse.
I received the following report of my recent visit to the MND support unit, a few days later.
Consultant report.
Professor Cato is slowly getting worse in terms of function in his upper limbs especially the left arm but the right is also declining in function now. His lower limbs on the other hand are functionally normal as are his bulbar muscles.
He mentioned various interesting aspects of his disease that I am going to look into for him but all in all he is coping very well with his progressive disability although obviously getting a bit pessimistic about what life will be like without upper limb function.
We will keep him under review and the report from the MND care team follows below.
Management plan
Decline in arm and hand function. Computer access more difficult .
Contact has been made with Ability Net for computer access assessment
Basic hand splints provided by Physio to trial for wrist support. -Dr Allen advised not worthwhile cutting Dubitrons.
Leg cramps – start on Quinine Sulphate
Phlegm to back of throat – if this becomes more problematic a suction unit can be order via the MND association tele: 08457 626262 on loan (District nurses please assist with demonstration and supply of disposables)
Psychological support can be accessed if needed via local hospice service – Prof Cato to contact coordinator if referral required.
Tags: Abilitynet, Addenbrookes, bionic glove, flailing arm syndrome, lithium, Nrt2, quinine sulphate, Riluzole
Posted by DMC on Mar 28, 2009 in
Diary Three useful gadgets arrived today on permanent learn from AbilityNet. A carrot shaped vertical lever mouse with a left kick button on the top. Pretty easy to use and certainly easier than my built-in laptop mouse.
There also appears to be a foot controlled version with which I’ve yet to get to grips. They also sent me a nice web cam which will, no doubt, make it easier for my ‘remote assist’ video conferences. All very generous of the MND Association. They have also promised – but yet to arrive – an e-book. I believe it initially contains 160 classics or most popular novels.
I’m getting really excited about that because I’m finding it more difficult to hold books and turned over the pages, which makes what should be the joy of reading irksome.
A good thing to come out of the ‘remote assist’ conference with AbilityNet was the encouragement and assistance given to me in utilizing my voice activation programme (Dragon) more effectively. Over the years I’ve been quite lazy in combining manual with voice activation. Now I must train myself to do as much as possible and, in the end, everything by voice.
Tags: Abilitynet, gadgets, MND Association, voice control
Posted by DMC on May 5, 2009 in
Diary All went according to plan with the good doctor and Alice put him on an early train to Stansted Airport this morning.
I went to London to the Arbitration Club lunch and committee meeting. I just managed it, but had some difficultly in filling the car with petrol. I almost had to ask somebody else to squeeze the pump handle for me. I suspect it will not be too long before I have to give up driving myself altogether.
After lunch I met with Richard Morris who has very kindly set up this blog for me and hopefully we will go live in a day or two.
Some more equipment came today from AbilityNet, including the E-Book which I’m looking forward to getting into.
I am due to spend the next four days at Lords watching the West Indies test match, I just hope I will cope okay.
Tags: Abilitynet, Arbitration Club, e-book
Posted by DMC on Jul 1, 2009 in
Diary One of my readers, for whose opinion I have the highest respect, suggested that this blog would be more useful to patients and carers if I were to be more honest about my feelings. I’m perfectly happy to do so but, of course, do not want to fill these pages with doom and gloom. That’s why I usually concentrate on the jollier aspects of life.
It would be totally dishonest if I did not admit that I am anxious much of the time about my condition, most particularly, I suppose, in bed at night if the fasciculations are very active. One lies there knowing one is going downhill, but how fast? Beyond that I do not believe that I am seriously depressed.
The worst aspect of this condition is the overall sense of weakness and increasing frustration in being unable to do things with one’s hands. Yesterday, for example, I almost failed to get out of the train because I could not exert enough pressure on the door ‘open’ button, which I eventually managed to do with my elbow.
The other great frustration comes in handling paper. Sorting out files and so on and the absolute impossibility to grip single pages. I can still manage my laptop with my hands using the middle finger of my left hand to operate the mouse. In addition, I have a lever Point It! mouse, kindly provided by AbilityNet, which I also use. When the hands go I shall have to revert to a foot operated mouse which will also be provided by AbilityNet. Having said I manage with my laptop, again I find the process extremely frustrating. Everything is so much slower now.
Beyond all of that I live day to day and do not give too much thought as to how I might end up. If I did well on this I’m sure I could become extremely depressed. It is for that reason that I include, in this blog, urbane details of unaccompanied visits to London, Lord’s, the golf club and the like. Not to impress the reader about how sociable I am but just to demonstrate my physical ability for activity.
I hope that this satisfies the reader who wanted to learn more about my emotional state of mind.
Tags: Abilitynet, emotions
Posted by DMC on Jul 14, 2009 in
Diary Despite the late night in Cambridge I managed the early start necessary for me to get a lift to the golf club for my weekly walk around with the geriatrics.
My legs are still working reasonably well, if somewhat more leaden than they used to be. I cannot say the same about my hands and arms, they really do get weaker by the week. The right hand, although it started going downhill much later than the left has been far more aggressive, the fingers are like jelly, cannot be straightened and are beginning to curl towards the palm.
The wrists in both hands are weak and I really need the wrist splint on my right hand in order to lift a spoon, cup or glass to my month. (A straw for drinking has become a useful adjunct.) The only digit which still works reasonably well, and which I can straighten, is the forefinger on my left hand – useful for prodding the laptop. Adjusting heavy bedclothes is becoming impossible with my hands, elbows and legs taking over.
Washing in the shower has become more difficult, I can only really manage by dint of the long handled sponge. I can still raise my hands to head height, with bent arms but cannot straighten them, so things like washing my hair or brushing it has become difficult .
I manage reasonably well in the office, largely through voice activation, once ‘my lovely’ has plugged in my laptop, but handling papers and lifting, even medium weight, books is difficult. AbilityNet kindly provided me a seven hole USB stand so most of my equipment can activate it by just plunging this stand into the laptop.
On the lavatory front I am pleased to report that the miracle of the AUS continues and I am able to pee normally, my main difficulty being adjusting my dress afterwards. However, there is usually a friend who is prepared to accompany me and do the necessary or, for example, at Lord’s I was able to enlist the assistance of one of those splendid St. John’s Ambulance brigade. On the whole I find people extremely kind and generous and prepared to help although, wherever possible, I try to avoid asking anyone to put their hand in my pocket for my mobile phone, wallet, or whatever and generally carry them loose in a large linen bag, which makes them more accessible.
I suppose the overall prognosis is that I am getting steadily weaker, week on week, but once up and dressed can manage to lead a relatively normal life with a little assistance here and there, provided I do not fall over, – which I have done once or twice – and then find it almost impossible to get up unaided. So on the whole I would say that my lovely wife and I are managing, but for how long?
Tags: Abilitynet, golf, weak hands
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 Nov 16, 2009 in
Diary The new lap top and software, supplied by the generosity of AbilityNet, arrive today. Hopefully, I will not have to wait too long for someone to come and install it and give me the half day instruction which has been offered. In anticipation of this new installation I have now given away my old PC and Tower and in future will just rely on my two laptops. It was a wrench to see such an old friend go but I’m sure it’s the right decision.
Tags: Abilitynet, laptop
Posted by DMC on Jan 18, 2010 in
Diary We received a very welcome telephone call from Richard today. He has been released from hospital with a relatively clean bill of health. At least that’s his version of it! (They’re a tough breed these old naval types). We will just have to keep our fingers crossed (and everything else!)
Jodie, from AbilityNet, came today to instruct me in the further use of voice activation on my laptop. I really must try to avoid the temptation of using the one finger that still works and see if I really can carry out the whole process by voice. He also set up my Sony E reader which will be fine as long as I can still press the buttons.
However, I gather that there are a number of new types of E-readers coming onto the market in the next few months which, hopefully, will be able to be operated by voice or foot.
Speaking of gadgets I have certainly not given up on the idea of my own feeding device or bionic gloves. I have been given some new contacts through the Disabled Living Foundation and at least one of these is looking promising.
Tags: Abilitynet, bionic glove, ereader, gadgets, stroke
