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
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 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
Posted by DMC on May 2, 2009 in
Diary Al. and I were in fits of giggles this morning trying on my ‘skirt’ (kilt). It looked very weird until we to took the tacking out of the pleats. Unfortunately the 38 inch waist may prove to be too big certainly if I lose any weight, which is my intention.
Kilts are not easy to take in, so I’m not quite sure what we will do. Anyway, I shall risk the ribald comments and amusement from my fellow golf club members and wear it the next time I go to the club, which will be on Tuesday 26th May, as I’m in London for the next two geriatric golf days.
My good friend Dr. Michael Long, arrives today, from Melbourne Australia. He’s spending the bank holiday with us and leaves for Dublin on Tuesday. I think I will get him to give me a hand with the feeding frame which needs adjusting for height.
We have a nice itinerary planned out for him. Dinner at home tonight with friends; lunch out to the pub in tomorrow with some other friends and possibly a street market and Morris dancers at Thaxsted on Bank Holiday Monday depending on the weather.
Whilst waiting for Michael to ring from the airport I spent a couple of hours in the first warm sunshine we’ve had this year. Happily dozing in a deck chair listening to classical music on my iPod.
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 May 10, 2009 in
Diary I managed Lord’s quite well Alice took me to the station and the travel was okay. I now tend to keep my travel card in a plastic pocket hanging around my neck as I find it almost impossible to get my hand in my pocket to produce it. I did have a bit of a struggle carrying the bag with a bottle in it, and little else, from St. John’s Wood underground station through to the Warner stand in the Ground, a distance, I would guess, of around one mile. It was simply that the weight of the bag was almost too much for me, which is indicative of my weakening arms.
One thing I did learn today and that was the easiest way to eat a sandwich. My weakened arms means that I have to use both hands to get it to my month. I now have the sandwich chopped up into small bite-size squares, stab it a fork and, with the assistance of my wrist splint, can manage with my right hand alone.
The cricket was great, an excellent win for England against the West Indies and particularly encouraging to see new boys Swan and Onions doing really well, not to mention Bophara. I look forward to the Ashes in June. I think we will give the Aussies a good run for their money.
I spent Friday night at daughter Chloe’s in anticipation of taking son-in-law (and nephew Tom Grand) for the Saturday match, which sadly did not take place, the match being all over on the third day. So we went out to lunch in East Dulwich instead.
Tags: cricket, eating, travel
