Posted by DMC on Jan 2, 2009 in
Diary Back in November when I was getting really worried about by weakening hands and wondering how on earth I would manage to operate my artificial urinary sphincter, I dreamt up the idea of a bionic glove. The purpose on this glove would be to give me a ‘grasp’ once the strength has gone from my hands.
Pursuing this idea, I contacted a medical professor in Cambridge but he was more in the experimental medicine field than robotics. He suggested I tried the Bath Institute of Medical and Engineering but here again this wasn’t quite their scene. However, the director of operations was very helpful and mentioned the name of a professor at Washington University, USA, who is apparently the world expert in exo-skeletons.
It took me a couple of months to contact this professor personally but once I did she expressed a degree of interest. She has undertaken to put the idea to one of the non-profit sponsors, hopefully within the next few days. If she gets a positive response then hopefully she will do attempt to develope something for me quite quickly, knowing that I’m living on borrowed time with my hands.
Because everyone’s hands are different and she was concerned about the glove fitting properly, I scanned, back and front of both hands and e-mailed the pictures to her. I think he was amused at this rather unorthodox form of communication.
I am holding my breath for a positive result as this could be a very exciting development which will not only help me but others with medical conditions which result in weak hands.
Tags: bionic glove, gadgets
Posted by DMC on Jan 20, 2009 in
Diary I went on pretty much as normal over these intervening months but with progressive weakening of my hands and muscle wastage of the arms. Both hands were very weak with the right-hand fractionally stronger than the left.
I could no longer manage buttons or zips or any action that required the use of my forefinger and thumb together. For example, I could not manage to lift a heavy file with either hand. I sometimes had to ask a shop assistant to help me remove my wallet in order to pay for a purchase. On one occasion I asked a policeman if he would be kind enough to tie my shoe lace which had come undone in the London Underground. All of this was extremely frustrating as it was not only a weakness of the hands but also an overall body weakness which did not auger well for the future.
Having said that I did manage to go to China in October to deliver my annual lectures to CUPL and enjoy a week, on the way home, in Hua Hin, Thailand, in the company of my doctor friend, Michael Long. In the week before the lectures I went on a mountain trek in southeast China and on one occasion found myself stuck at the top of a mountain faced with a 7.5 K walk down, while suffering from extreme pain with what was ultimately diagnosed as a hernia under the pipe work of my artificial urinary sphincter. This was successfully operated on in November prior to a fortnight with my good friends the Brinton’s in Dubai.
In December I played my last game of golf at Royal Worlington as my hands could no longer sustain the weight of the golf club. I resigned as a playing member after 32 years – a very sad day.
Over the intervening months I have been very fortunate in establishing a good relationship with the mechanical engineering division at Addenbrookes Hospital where we have worked on a number of gadgets to assist me to lead a near normal life. I designed a remote-controlled electronic device located on a thigh strap to operate the control pump, of the artificial urinary sphincter (AUS) in my scrotum. In working with the engineers, on developing this device, I managed, through clumsy handling, to knock out the control pump of the device (AUS) altogether. In other words, I found that it was permanently open. This was very alarming as I then expected to find myself incontinent and faced with the prospect of having to resort to leg bags again. The day on which I discovered this I went to bed, having put a rubber sheet on the bed, wearing a nappy overnight. I was pleasantly surprised in the morning to find that I had not leaked, as I thought I would. The following day I wore normal underclothes with no protection and again, no significant leakage.
It seems that a minor miracle had occurred. The medical explanation was that the artificial urinary sphincter was acting, in conjunction with my own pelvic muscles, and retaining the urine. As I write this state of affairs has now prevailed a couple of months and I pray will continue. The point being that my hands are so weak now that there is no way that I could grasp my scrotum in my left hand, locate the control pump and operate it by squeezing it with my right hand.
Without this miracle I simply would not be able to venture far from home, as I would require assistance to go to the lavatory. There are clearly limits on what you can asked even your best friends to do for you. I can see the headlines now, Professor arrested after a accosting stranger in public lavatory.
What of the future? I’d now deeply into finding gadgets to enable me to lead as normal a life as possible. The MND support unit has said that I may lose control of my hands altogether within two or three months, followed by my arms.
Heaven knows how I will manage when I reach that stage. I am already looking at gadgets to help me continue to use my laptop as well as ways of continuing to feed myself, although even this may ultimately prove impossible. Will this mean I can no longer attend meetings of the Arbitration Club, in London, for example, or will I get my colleagues to feed me?
One problem I have solved is how to deal with wiping my bottom when I no longer have the use of my hands. I have found a foot operated unit, that can be fitted on top of my own lavatory pan, which will initially wash my bottom, after I had done my business and then gently dry it with warm air. At least I will be spared the indignity of reverting to babyhood in that area.
Tags: Addenbrookes, China, Dubai, gadgets, golf, Thailand
Posted by DMC on Feb 9, 2009 in
Diary Off to Australia, to stay with the same friends as last year and then onto Thailand, with Dr Long for a week, on the way home. Apart from requiring some assistance with dressing, provided my hands do not significantly weakened further during these intervening weeks, I should manage. After that I can only take it week by week. There are a lot of people out there willing to help, – occupational therapists, computer experts the MND Association, etc. but at the end of the day, much of it will be down to me personally.
In the meantime I have been busy designing gadgets which will not only help me but also other people with weak hands – arthritis sufferers, stroke victims, people with Parkinson, etc. My latest idea is for a feeding frame which can be very inexpensively mass-produced and, which I believe, will be of great interest to hospitals, care homes etc. or to anyone having care of infirm geriatrics.
While I was in Australia I had a videoconference with my team leader of XXWorks and she appeared to be very enthusiastic and encouraging. It is an exciting project.
Tags: Australia, feeding frame, gadgets, Thailand
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 Apr 1, 2009 in
Diary A very nice man came today and demonstrated the ‘washing and drying’ the lavatory (The BioBidet). Alice and I were both very impressed. Apart from the basic functions that are all sorts of sophisticated adjustments one can make to it included a heated seat – if that appeals!
It operates by hand held remote-control unit and bearing in mind my weakening hands I tested pressing the buttons with my toe and this seemed to work quite well.
I ordered one of these units on the spot – cost a reasonable £480. (I had already ascertained from the medical Social Services that I would not qualify, through means testing, for them to provide this for me.)
Tags: gadgets, lavatory
Posted by DMC on Apr 6, 2009 in
Diary The Bio-Bidet unit arrived today. I must now contact my plumber and my electrician to have it fitted on top of my existing WC pan.
Tags: gadgets, lavatory
Posted by DMC on Apr 20, 2009 in
Diary Great excitement. My wash and dry lavatory is being fitted today.
Tags: gadgets, lavatory
Posted by DMC on Apr 21, 2009 in
Diary Went to Worlington. Walked around the golf course and lunched with my old mates. They were all very kind and welcoming and said how nice it was to see me there. No problem with my legs at this stage doing a three and a half hour walk, resting from time to time on my shooting stick.
Most of the members at only too ready to help untie my golf shoes and tie my shoe laces; to help me remove a sweater and to cut up my food at lunch.
I introduced the members to my new cigar holder. I had it made from a 15 inch high wooden toilet roll holder with a spring clip on the top. I bought a cheap plastic holder in London, the other day, and jam it into the spring clip and can therefore smoke without using my hands. I only smoke two small cigars each day but I do enjoy one with a drink after walking around the golf course.
Tags: gadgets, golf
Posted by DMC on Apr 23, 2009 in
Diary After an overnight stop with my mother followed by a day in London – meetings and lunch – this is a good moment to take stock.
The first thing I have to say is that the miracle concerning my artificial urinary sphincter (AUS) continues. In other words, I can urinate naturally without squeezing me control pump and still no significant leakage. As much as anything else for this reason I am still coping and able to go to London by myself and manage to do so today without falling over!
I usually start the day doing 20 minutes of gentle exercises which I have done for over 30 years.
I find I can no longer plug in my razor or my electric toothbrush as the socket is above my head. I’m still managing to shave OK with my electric shaver but only by lying down on the bed – the shaver itself is quite heavy. Somehow I don’t think it will be too long before someone else has to shave me and operate my electric toothbrush.
After breakfast in bed I then take a shower which I can manage myself – just – but I do need a hand with the drying. I can manage my legs and lower parts but my wife has to help me with the rest of it. As I can still raise my arms above my head I can manage to get my vest and shirt over my head, although I must admit it is becoming a little bit of an effort and it only possible by me throwing up my arms high into the air. From that point on, my lovely helps me finish dressing, particularly with my socks and trousers. If I’m wearing a tie, say, to go to London, these I have pre-tied and they just slip over my head. There is no way now that I could possibly tie one myself. We finish up with my lovely brushing my hair which again, although I can get my hands up to my head I cannot comfortably work around even with the long handled comb that I bought.
For meals I now have a selection of spoons and forks with a large rubber handles which I made myself from hollow piping – so much cheaper than buying the ready-made ones. ‘My lovely’ has bought me some two handled, lightweight plastic tumblers – mugs that I can also use with a straw as I am finding it difficult to lift a heavy cup up to my mouth. I travel about with my own special cutlery and two handled lightweight cup, even in the smart restaurants. I eat most things with a spoon and can manage quite well, provided someone cuts up the food for me. What I really need, and I will make one if I cannot buy one, is a shover. In other words instead of using my finger to push things onto the spoon I can do it more elegantly with a special piece of cutlery. I am sure I’ve seen such a thing in a infants feeding kits somewhere.
The other thing, that has made eating a little easier, is a wrist splint that was provided by the hospital, which I put on before eating. It just gives that little extra support. The MND unit have also provided a very expensive and complicated looking armrest which is clamped to the side of my armchair sidetable. It certainly does help by taking the weight of the arm but for the moment I seem to manage OK with just the wrist splint.
Once I am up and dressed I can pretty well cope by myself, spending the day in the office, with the occasional hand to plug things in, lift heavy files out of the filing cabinet or to trim paper etc. I’m spending most of my time, at present, trying to finish my autobiographical notes whilst I still have some use on my hands. Frankly, although I rely heavily on voice activation, I do not fancy this amount of work when I’m trying to operate a mouse with my foot.
When I get into bed, at night, I’m able to sit up and read comfortably as my lovely has generously bought me a sort of rubber armchair which sits on the bed. Having said that it is becoming more difficult for me to position myself in this ‘armchair’ not being able to use my arms to push my body back. I can manage it by wriggling inch by inch but it does take me a few minutes.
Heavy books I find almost impossible to handle so we place them on a sloping bed tray and hold the pages in position with an elastic band. The e-book should be here shortly so that might make reading a little easier.
Tags: dressing, e-book, eating, gadgets, lavatory, reading
Posted by DMC on May 1, 2009 in
Diary A red letter day in more than one sense. Most important of all I picked up the third prototype of my feeding frame. My larger elastic waistband trousers arrived and so did my kilt. I collected the feeding frame late afternoon and therefore I’ve had no time to examine in it detail.
The larger elasticated waistband trousers are a great success. With a bit of a struggle I can get them up out over my shirt and vest and now easy to push down. Each as they are basically to wear in my head office in the summer when I shall just wear a loose shirt and no vest these trousers will make life easier for me. The kilt I shall try on tomorrow.
The other important event which took place today was that I crystallized my SIPP, or in plain language I decided not to risk any further collapse in the stock exchange and sent my forms off to the pension provider to freeze my SIPP so that I can take my 25% tax-free lump sum. Much less than it would have been 12 months ago but nevertheless still worth having.
Reverting, for the moment, to my feeding frame, I have been horrified by the cost of specialized equipment for the disabled. For example, an adjustable table — not so very different from the one that I bought for £120 is offered from a different source for around £900. Similarly, which a device to catch cigarette ash can cost over £300, when, with a little ingenuity, it’s possible to make something that does the same job for a few pounds. Viz, touch my hands-free cigar holder made from toilet roll holder.
Ever since I was diagnosed with MND and started to require specialized equipment I have searched the net for some central source of second-hand gadgets and equipment at reasonable prices. No such place appears to exist. If it did I would very much like to hear about it. If it doesn’t, why don’t several of the big organizations get together and jointly fund a central distribution depot. The Disability Association together with other associations for MND, Stroke victims, MS and ME sufferers, and the like, could spearhead this initiative.
All of these associations are uniquely placed to know when one of their own dies and could discreetly approach the surviving partner offering to remove all the specialized equipment that has been purchased to make the life of the patient more comfortable. Most surviving partners would be only too pleased if this were done swiftly so as to remove daily reminders of their loss. I’m not suggesting that this equipment should not be paid for, although I’m sure, that in some instances, the surviving partner would be only too happy to donate it to a good cause. If a non-profit-making body, such as I suggest, was set up, this equipment could be sold on, at a modest profit, to another deserving patient, who might well not be able to afford new equipment at the exorbitant prices being charged by some of these so-called specialist equipment bodies.
Tags: feeding frame, gadgets
