6 March 2009

Posted by DMC on 6 March 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.

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16 June 2009

Posted by DMC on 16 June 2009 in Diary |

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.

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