13 June 2009

Whilst lunching in the garden today, listening to South Africa’s magnificent win over the West Indies, I managed to drop boiling hot soup onto my foot. Again, it was a problem of collapsing wrists. I wonder how long it’ll be before I cease to be able to confidently lift anything at all?

Tags: cricket, weak hands

16 June 2009

Sadly England were knocked out of the World Series, by the West Indies, last evening in a rain interrupted match.

I do believe my hands are getting weaker. I’m still managing to shave lying down but need both hands on the razor. Also can still manipulate my electric toothbrush, but only just. How long will it be before ’my lovely’ will have to do both for me?
The interesting thing is that it seems to me that my right hand is weaker than my left although it’s the other around with my arms. Whether this is because I constantly use the right-hand rather and the left I shall have to ask at my forthcoming quarterly assessment. I know the right-hand is getting much worse – it goes like jelly – and it can take several minutes controlling it on a stiff piece of card containing the daily crossword puzzle. Only then, once it is in position can I actually scrawl in the answers.

Alice already has to fill in my cheques for me and indeed sign them. I had better not fall out with her otherwise I might find my account cleaned out!

The occupational therapist has kindly fitted some rather hideous plastic caps onto our bathroom taps. The ones on the X shaped heads work well but the lever caps on the round headed taps are a little awkward.

All of this gradual weakening means that the possibility of me being able to go to China to deliver my annual course of lectures, in October, is probably receding fast. Obviously I will know better in early July after my assessment but to be honest, lovely people though they are, they don’t seem to have much idea about timescale. The standard explanation, usually given, is that everyone is different so it is virtually impossible to say how fast one will go downhill and in what direction. Of course, they can take an educated guess, and are usually prepared to do so if pressed. This guess may be reasonably near the mark, but I am still not convinced however that they could not be far more scientific about the whole process and do what I came up with in the early stages of my diagnosis: that is to carry out weekly, or monthly checks with scientific instruments, grip handles, strengthen levers etc. – which I know are available – and from that be able to plot some sort of ‘slope of deterioration’. These checks could be carried out by the patient, or their carer, at home, provided the equipment was made available. Even if the results were wildly different with every patient then they should question why, and perhaps ultimately be able to draw some conclusions from the differences.

Tags: China, cricket, prognosis, weak hands

25 June 2009

I am due to have my quarterly MND assessment on 2 July when I will finally be able to make up my mind whether I am likely to be fit enough to go to China and give my lectures in October. It all depends how much further my hands and arms weaken in the meantime. I noticed, particularly in bed last night, what difficulty I was having pulling back the bedclothes. I had to use a combination of closed fists and elbows. Also, getting up from the floor following my morning exercises, the only way I can now manage it is to get onto my elbows. Strangely enough my right hand is now more useless than the left but the arms are the other way around.

Feeding is OK as long as the food is cut up, I can use a spoon. Most drinking is through a straw as most glasses are too heavy for me, although I can still cup a wine glass. Driving is fine in my automatic as I can still curl my fingers.

My greatest fear is getting locked into a public lavatory – in the train or in someone’s offices. Locks with a circular knobs are the worst.

Tags: China, eating, toilet, weak hands

2 July 2009

Today I had my quarterly MND assessment at Addenbrookes Hospital Cambridge. Having explained the deterioration in my hands and arms the doctor was not surprised and said, on the whole ‘I was doing very well’. In other words, I am going downhill pretty much at the rate that they anticipated (although of course, he neither hinted at more, or said such a thing; it is just my own personal interpretation.)

My Forced Vital Capacity (FVC) – blowing into a little handheld device -was 10% down on last time, in the supine position. The support nurse did not think this was significant but she obviously was sufficiently concerned to say that I should perhaps go to Papworth Hospital for a more detailed check. I believe this test is one that indicates your overall rate of deterioration more accurately than any of the others. Having said that the doctor examined my tongue and told me that, at present, the disease was not attacking my throat, so I really don’t know what to think.

One good thing that came out of assessment was that the doctor agreed there was a possibility I could still go to China in October. In other words, my flailing arms may not have completely given up by then. He suggested a further assessment in early September when a final decision can be made.

A team of people came in to the consultation to look at the feeding device and appeared to be very impressed. They included a dietician, an occupational therapist, a physiotherapist, a lady running a hospice and the engineer. The frame still needs a tiny adjustment on the armrest but once that’s done I believe it might be possible to have it tested within the hospital itself and then perhaps trialled in an NHS care home.

Enough boring stuff I think it’s about time I added another anecdote. With the Ashes starting next week (cricket against the Australians for those few people in the world who haven’t a clue what I’m talking about), I have added to Anecdotes The Cricket Match, which I hope you all find amusing.

Tags: Addenbrookes, assessments, China, feeding frame, weak hands

14 July 2009

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

31 July 2009

The House of Lords have now given their judgment on the Purdy case where Mrs. P was seeking assurance that her husband would not be prosecuted if he assisted her suicide when the MS, from which she is suffering, becomes intolerable. Not unsurprisingly the Lords did not give such an undertaking, however, they did say that guidelines would be set down for such cases. These can be expected around September, so I suppose, in some respects, this is be can count this as a victory for the Purdys. Undoubtedly the mood of the country, and indeed the judicature, seems to be towards some sort of immunity from prosecution in strictly limited cases.  Watch this space.

On a more mundane level I went to Addenbrookes Hospital today be fitted with some rigid wrist supports. The occupational therapist made them there and then but I think they are going to take some getting used to. They are rather uncomfortable to wear and most of the time I can manage without them.

The great excitement about this particular visit, however, was that I picked up the feeding frame. I think we have got it pretty well right now and I shall try to out myself for the next week or so before attempting to trial it in hospital or a care home.

Tags: Addenbrookes, assisted suicide, feeding frame, weak hands

5 August 2009

The die is cast. I took the plunge today and booked the flights for me and my good friend, Dr. Long to go to China and then onto Hua Hin, towards the end of October. This, despite my trepidation at the rate that my hands and arms are giving up. Two and a half months is a very long time with such an aggressive disease. However, the good doctor has made it quite clear that he is only too happy to be with me 24/7 on this trip and do whatever is necessary. Sobeit. I had been led to believe that it was virtually impossible for someone of my age and infirmity to get travel insurance at anything other than a ridiculously high premium. However I am pleased to report that I did find a company today to cover my forthcoming visit to China and Thailand for what I consider a very reasonable premium of £122 which also includes cover for anything arising from my MND or prostate cancer, which I had 10 years ago.

I spent most of the day preparing my talk for the memorial address in Dublin on the 18th September. The trouble is it cannot be entirely light-hearted and has to have some academic interest which means the preparation of a number of PowerPoint slides. Easy enough in the old days but now with weak hands, a laborious process.

Tags: China, Ireland, Thailand, travel, weak hands

15 August 2009

Spent the last two or three days finalising the memorial address I am to give on the 23 September in Dublin.  To make it more interesting I have prepared 71 PowerPoint slides.  Quite an effort with my weak hands but nevertheless, thank heavens,  the task is now completed.

A last-minute invitation to supper with the W-P’s.  It was one of those rare beautiful summer’s evenings where we were able to eat outside.  Delicious food and a lovely way to spend the evening.

Tags: friends, weak hands

11 September 2009

Lunch at home today with  a fellow MND sufferer and his carer. It was a very useful session in swapping ideas how to cope with our very similar disability — weak hands and arms.

One thing he had which I did not was a ‘kindle’ (e-reader).  Of course, I have the Sony version which I have yet to activate. I understand  that a new kindle is to be launched at the end of the year, an Asus, which, it is claimed, will knock spots off the other version available, so I shall probably wait for that.

In yesterday’s papers it was a reported that the Lord Chief Justice, Lord Phillips, sympathises with terminally ill people seeking to end their own lives. In what he described as his personal view, Lord Phillips said “I have enormous sympathy with anyone who finds themselves facing a quite hideous termination of their life as a result of one of these horrible diseases, in deciding they would prefer to end their life more swiftly and avoid that (prolonged) death as well as avoiding the pain and distress that might cause their relatives”.

A poll published in The Times in July revealed overwhelming public support for a change in the law to allow medically assisted suicide.

This follows the debate on assisted suicide which was brought to a head in July after Debbie Pretty, who has multiple sclerosis, won an historic judgment from the House of Lords.. David Winnock, a Labour backbencher is attempting to change the law through a Private Members Bill.

Tags: gadgets, weak hands

26 September 2009

With the Irish commitment out-of-the-way my thoughts have begun towards the lectures in China and wondering how well I will manage even with the good doctor’s support – certainly, there will be no liquid lunches on those three days!

I suppose I started thinking about this as I sat, in a deckchair, in the warm sunshine, on the most beautiful of early autumn days. Alice had popped up to the shops and I needed to go to the bathroom. It took me the best part of five-minutes to get out of the deckchair – indeed, at one stage I almost gave up and waited for her to return. It was then I realised how weak my arms had become.

This lead me to thinking how, when I was having my shower this morning, I realised that it was becoming increasingly difficult to hold and manipulate the long handled sponge.

I told ‘my lovely’, as she dried me, that I would try to hang on until I got back from China, by which time I was pretty sure that she would have to wash me and even perhaps operate my electric razor and toothbrush. Good evidence of the weakening of my arms is that once the wrist support is attached to my right hand it becomes too heavy for me to lift without assistance from the other hand.

Tags: China, grooming, washing, weak hands