Today I go for my quarterly assessment, with my MND team, at Addenbrookes hospital. As in my normal practice I have made a list of matters to discuss with Dr Chris Allen. As usual I will press him, against his better judgement, to try to give me some prognosis as to when I’m likely to use lose the use of my arms, legs etc. I’m also extremely interested in his reaction to the recent lung tests carried out at Papworth Hospital, particularly as I am about to fly to Sweden and am not that keen to ask the airline to lay on emergency oxygen as suggested by them.
One issue about which I am curious is that the majority of MND patients complain that their principal symptom is fatigue. I usually have my first cup of tea and around 6 a.m. and am up and in the office no later than 8.30 where I stay until 6 p.m, with a couple of hours for lunch. I can’t say that I personally feel particularly fatigued by this, certainly no more than the average 76-year-old. For example, I recently spent four days at Lord’s, (for my overseas readers may not know this . Lord’s is the world famous cricket ground) Â leaving home at 8.30 and back around 7 p.m.. I spent the whole day obviously watching cricket, whilst talking and engaging in the very exhausting process of drinking champagne and eating. Not on any of these four days Â did I have a rest and yet I did not feel particularly â€˜done inâ€™ when I returned home. Ironically, long before I was diagnosed with MND, if it was a hot sunny afternoon at Lord’s, rumour has it that after a particularly good lunch I would nod off for the odd half hour! Every morning, as part of my daily diet I take a BerrocaÂ tablet, a mixture of vitamins and minerals etc, which is supposed to give you energy. I wonder if this is the answer in my case?
I heard recently from a fellow MND sufferer that he has had a tube inserted into his stomach so that he can be fed twice a day. He also mentioned one of his favourite sandwiches and this prompted me to ask him how he reconciled these two conflicting ways of being fed. He told me that he could still chew and swallow but it was a very slow and painful process so basically he relied on the feeding tube to sustain life. I also heard yesterday from a distant relative, whose sister is also an MND sufferer. In her case she has decided to cut down eating and drinking and to â€˜slip awayâ€™ that way. I can’t help feeling that this is the bravest and kindest way to go, having said goodbye to all your friends and relatives. However, I would be curious to know how common this is as a preferred choice to end things. I would have thought that once one has Â overcome the initial hunger pangs then it was a very peaceful way to go.
One issue that I’m going to raise with Dr Alan is the question ofÂ neurone stem cell research. I read something about it recently which showed promise and I wonder why we don’t hear more about it. I would certainly offer myself as a guinea pig if given the chance.
Whilst I am at Addenbrookes hospital I have been booked in for a bone density scan, presumably because my leg broke fairly easily when I fell off the train recently. In any event, whatever the result I don’t believe it’s very serious. Probably just a matter of taking some calcium on a daily basis. I certainly don’t want too many alarms today as it is now only just over a week before I go off to Sweden with the good doctor Long.
Some time ago, the MND Association, through their associated organisation AbilityNet, very kindly provided me with an E-reader. Up to now I have not used it as I have struggled along with a book on a book rest, with the pages being held back with elastic bands, but now the whole process of reading has become virtually impossible. I simply cannot handle the book or turn the pages. I then resorted to the E- reader but even this, I found, was not that easy to use, as with two pretty useless hands I could not really press the buttons to select the book and turn the pages etc. As a result I have asked the MND Association if I could have an iPad which is very easy to use. You can turn the page by dragging your useless hand across the touch screen, or, at worst, having say a mouse pointer strapped to your chin to achieve the same objective. The doctor has to fill in a form for the MND Association and we will see how it goes from there.
In the event, the assessment was taken by the team administrator Shelgah Smith with the OT and physioÂ in attendance. Although we discussed the issues which I had listed, at the end of the day Shelagh had little choice but to fall back on the standard response that every MND patient is different and they have absolutely no idea how fast one will go downhill or in what direction. She observed a change in my posture which demonstrated the weakness of my legs and increasing difficulties to balance. I mentioned the deterioration in my hands and how occasionally the right arm locks rigid. (This can cause some problems when you are eating, particularly for the person on your right, who might well end up with a spoonful of food in his lap!) I also noticed this morning, for the first time, that when shaving with my electric razor,Â in the purpose made pouch strapped to my right hand, whilst lying flat on my back in bed, that my left arm suddenly refused to straighten at all. Both of these symptoms must mean that I am experiencing an increase in spasticity. I can still wipe my nose by holding the handkerchief between my clenched fists. I can clean my teeth with my electric toothbrush because my fingers curl naturally around the holder and for the same reason I can still feed myself as the spoon fits neatly into my curled fingers. I can still curl all the fingers on my right hand towards the palm but with little strength, and the three last fingers on my left hand, although they are both are gradually curling inwards, the condition being exacerbated by Dubitrons syndrome, with the left hand being far worse than the right . However, many actions with my arms require me to fling them towards my head rather than raising them in a normal way.
There’s not much I can do about exercising my hands but I do have them massaged Â once a week and the fluid moved up and away from the hand. Each arm is then stretched toward the ceiling to loosen the Â shoulder joint.
The reader will recall that I started the day with exercises in bed. The pelvic floor exercises (necessary because of my Â artificial urinary sphincter — see earlier entry); the diaphragm exercises, to which I have added leg exercises tensioning and clenching the thigh muscles; raising my head and leg together in tension and holding each for five seconds, alternately, repeated five times and then finally resting one leg on the other straightening and holding it in position for five seconds, again repeated 10 times each leg. I finish stretching each arm, alternately, towards the ceiling and circling 10 times clockwise and 10 times anticlockwise before resting. This, I repeat, five times with each arm. Frankly, I have no idea whether any of this is doing any good but I work on the principle that they can’t be doing me any harm and, who knows it might just be extending the life of some of these muscles.
Sadly, there is no neurone stem cell research being carried on at Addenbrookes. In fact, Shelagh thought that the only research on it was being done in Edinburgh and this not yet on humans -so not much hope there. The bone density scan was quick and painless — results in four weeks time.