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 3, 2009 in
Diary I went up to London today, to have lunch with my nephew, James Grand. Unfortunately the trip started badly. The train came in to the station at Audley End, I was the last to leave the waiting room and was unable to open the door quickly enough – it was just too heavy. By the time I managed to get the door open the train was about to depart. In my anxiety I dropped my bag, spilling out all the contents. To compound everything I then tripped over them and fell flat on my back. The kind man who stopped to assist me, said that he saw my head bounce on the concrete platform – however no harm done. By this time though, the train driver, possibly fearing he would be delayed, closed the doors and pulled out. I had to wait half an hour for the next train. Not a good start to the day.
I further compounded my problem by going into White’s Club and sitting there for 20 minutes before I realised I should have been 20 yards down the road at Boodles.
Tags: travel
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 8, 2009 in
Diary Received the following e-mail from the Washington professor today:
“Mark,
Sorry to take forever to get back. I totally understand and wish we can take this opportunity. If I had more resources/time on my hand, I would. I think your idea is wonderful and you should not give up on pursuing it with some British folks who may be able to help. There is a wild guy who calls himself Cyborg in the UK (I am off-line typing this at a park so can’t Google and find his info) who may be able to help you with this type of requests.
Best.”
I will now have to pursue the Oxford professor connection before trying Cyborg (whoever he is).
Tags: bionic glove
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 22, 2009 in
Diary Al. drove me up to Church Stretton to see my 92-year-old mother, who was in good form, if a little forgetful. We had a lovely trip stopping at some nice pubs on the way up and on the way back.
On our homeward journey we stopped off at Whitley Court, Great Whitley – a fabulous preserved ruin and very beautiful church. Unfortunately I felt distinctly off-colour. Quite exhausted and my legs felt leaden. Whether that has anything to do with the MND I know not. I must asked the doctor next I see him.
Tags: travel
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 27, 2009 in
Diary Smiler’s birthday – 45 years old – he has been taken to Venice for a few days by Kimberly.
Went to Addenbrookes Hospital today to see the latest prototype of my feeding frame. They have very nearly got it right. After agreeing one at two minor adjustments I hope to pick it up later this week. I’m still very excited about this having universal appeal.
Some cotton trousers which I had purchased from the Internet, for the grand sum of £9.99 per pair, arrived today. I bought them because I thought the elasticated waistband would make them easier to pull up and down. Sadly, I had not realised how my girth had expanded over the last three months or so, now 38 inches, whereas over the last 20 odd years it is has been no more than 34”. (The trousers were sent back for a larger size). I suppose the point is, that before the MND I was going to the gym three days a week and played at least two rounds of golf. Now, I just have one weekly walk round the golf course and have not changed my eating or drinking habits. Clearly, I must increase my exercise, perhaps by a daily walk now the weather is improving. The problem is that up to now I’ve been very busy trying to complete my autobiographical notes, before my hands disappear altogether. I am glad to say that this job is all but finished.
Tags: Addenbrookes, feeding frame
Posted by DMC on Apr 28, 2009 in
Diary Walked around golf club again today. I drive myself to my friend’s house, 3 or 4 miles away and he takes me to the club from there. I can manage to steer the car quite safely as I can still care of my fingers around the steering wheel and a car, being automatic, I then need to worry about changing gear. I do have a little trouble knocking the seat belt although usually somebody is on hand to push it in for me. I did have trouble the other day when the steering wheel locked and I had to call on a passer-by to come and wiggle the ignition key about for me. I don’t think I could manage to drive any great distance. The DVLA already hold my license, aware that in foreseeable future I will be banned from driving altogether.
I managed 15 holes and then felt a bit tired. One of the doctor members very kindly gave me some powder which he says has helped his wife enormously. She has had MS for the last seven years. He also has a niece with a muscle wastage complaint who is also taken the same powder. Its trade name is Ambrotose and it is described on the jar as an immune support formula. It is a Food Supplement containing Plant Polysaccharides.
The ingredients are listed as: arabingelactan; aloe vera inner leaf gel powder; rice starch; gum ghatti; tagacanth; vegetarian glucosamine hydrochloride; vegetarian algie extract powder. Whether it will do any good or not remains to be seen but my friend is convinced it will slow things down. What it costs I have no idea but I’m pretty sure there’s no way I will get it on the NHS. I will try it for a month or so and then decide whether to continue with it.
This might be rather a good moment to list the other things I take on a daily basis apart from the Rilutek.
I start the day off with a Berocco drink. Berocca is described as Tailored vitamins and essential minerals for hectic lifestyles I have been taking this for around 18 months. It is basically a high dose formulation of B & C vitamins plus other essential minerals. In a nutshell it provides between 70 and 80% of one’s recommended daily dose of vitamin B12, vitamin C: Thiamin; Riboflavin and a few other essential minerals. Does it give me that ‘get up and go’ oomph, perhaps? I would have to stop for a while to find out, but why bother. At least I’m certain it is doing me no harm.
Pills include Nifedipine for Raynauds syndrome; quinine tablets, recently prescribed by the MND doctor to prevent cramp; a large cod liver oil and garlic capsule, to ward off colds and a .75 m.g. daily aspirin, as recommended by my Australian doctor, to ward off heart attacks. Having listed this lot out it makes me sound like a hypochondriac, which I’m certainly not.
On the way home from the golf course I called in at my bank and added Alice as a signatory to my accounts as I’m finding it difficult to write and therefore difficult to sign my own name. I’m sure after 46 years of marriage I can trust her not to raid my account!!
Tags: Ambrotose, golf, quinine sulphate, Riluzole
