Posted by DMC on Mar 6, 2009 in
Diary Returned home today having had a great time. I managed, just, with Michael’s help and some understanding stewards on the aircraft.
Apart from resigning from the golf club I have also resigned from my last arbitration. It was a very heavy case and likely to go on for some months. Being unable to write legibly, without great effort, I could see no way that I could run a hearing with two heavyweight lawyers appearing before me. It’s not so much a question of giving up as readjusting. I am, after all, approaching 75 so I suppose that it is no shame to want to take things a little easier. As President of the Arbitration Club I shall continue to attend lunches in London as long as I am able to adjust my dress after going to the lavatory. I’ve had 40 pairs of trousers fitted with Velcro, instead of buttons and clips, and fitted my zips with key rings.
At least, to date, despite continuing violent fasciculations, my legs are still working perfectly well and I’m able to walk several miles at a time. I am now well over a year since diagnosis so it doesn’t look as though I’m going to expire in the average 14 month timescale.
(Indeed, one doctor said that fasciculations were observed in a medical check-up as far back as 2005, so it may well be that I am already some years into the disease although it did not manifest itself until 12 months ago.) Anyway, I was told that one in 10 MND sufferers can live for 10 years, so I told the doctors I would take that option! So we will see.
Tags: arbitration, Arbitration Club, golf, lavatory, prognosis, velcro
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 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 Apr 29, 2009 in
Diary Great excitement today my BioBidet was wired in by the electrician. It works wonderfully well and I can operate the remote control with my toe. The only drawback, I suppose, is having to sit there for around three minutes for the warm air nozzle to do its drying job.
I have been giving some thought as to how I will manage to go to the loo when I’m away from home and have lost the use of my hands, for example, when I want to walk round the golf course with the other geriatrics on a Tuesday. So, today, I purchased a kilt, from eBay. What I have in mind is wearing this in the summer, au naturelle, so to speak, and therefore having nothing to put down or up. Whether this will work I can only tell when the garment arrives and I can get in some practice. It’s no big deal either way, as the cost was quite modest but if it works, that will be great, it will give me more freedom in the summer, at least!
Tags: lavatory
Posted by DMC on May 30, 2009 in
Diary An update on my wash’n’dry loo. It works like a charm but unfortunately for me, being such an impatient soul, the whole process takes a little longer than I would normally like – the dry takes three minutes!
However I have is this problem licked as I can speed read one chapter of Kingsley Amis’s One Fat Englishman in the time it takes!
Tags: Add new tag, lavatory
Posted by DMC on Dec 14, 2009 in
Diary Another scrummy lunch today – pity my poor waistline. This one was at the Coq d’Argent, No.1 Poultry, in the City. My hosts were Mark Jenkins and Simon Walker -stockbroker and wine merchant. I arrived early and decided it would be prudent to visit the loo and elicited the assistance of an elderly waiter who didn’t look too happy at the idea of accompanying me to the lavatory. He was even less enthusiastic when I asked him to stand guard outside, as I could not lock the door, and then come and assist me to adjust my trousers. He did, but with poor grace. Ah well, win some, lose some. At least we were able to have a civilised finish to lunch and smoke a cigar on the terrace under large mushroom heaters.
This was the second time that I had worn my full regalia. My full length apron, decorated by my grandchildren’s primary school, my two wrist supports, the wipeable sleeve protecting my clothing on my left arm and my new 12 inch long shoover. Looking a little like a clown I thus managed to feed myself with a spoon, once the food had been cut for me.
The boys had strict instructions from ‘her in doors’ that they were to ensure that I caught the 4.28 and to see me onto the train. This they kindly did but unfortunately they marched me along the platform, each supporting one raised arm, before planting me unceremoniously in an empty seat in front of three bemused passengers who were clearly convinced that I was a legless drunk unable to walk unaided. Then, when I enquired, whether any of these three passengers were going as far as Audley End, in the hope that one of them would kindly give me a nudge, if I fell asleep, I was met with three distinctly disapproving stares. However the lady in the middle begrudgingly nodded, and as we reached that station, thrust her elbow into my ribs.
Tags: lavatory
