14 January 2010
My quarterly MND assessment at Addenbrookes Hospital today. Really there was very little to discuss other than the obvious deterioration of hands, arms and particularly legs. As usual I pressed Dr Alan to predict the rate of deterioration. Unwillingly he agreed that I would almost certainly eventually lose the use of my hands followed by my legs but could not predict when – although he thought possibly within a few months. In fact, I’m doing better than he predicted last March where he suggested I might lose the use my hands by the end of the year i.e 2009, but then, as he says, he always opts for the shorter timescale. This way anything longer is a bonus. He thought we would have a better idea at the next assessment in April. By then I will have paid another visit to Papworth hospital, so the respiratory side of things will also be clearer.
Seeing the deterioration in my legs and the difficulty I had rising from the chair, the doctor kindly agreed to write and start the ball rolling about the possibility of a chairlift. These things can tend to take some months to sort out so it’s not too early to plan ahead.
9 January 2010
I have another truly inspirational video for you, The Amazing Young Man. You absolutely must take time to watch this video from beginning to end. Â I guarantee that this phenomenal young man will put you in a better frame of mind as a result. If this does not move you, then nothing can. It should make you thankful whatever you have.
6 January 2010
The Siberian weather continues, with overnight temperatures as low -16°C, with another snowfall overnight in some places in the UK as much as 35 centimetres but not so bad here at home.
The test match is also Siberian from the English point of view. South Africa declared at 447 for 7 leaving it almost impossible for England to win and most unlikely to survive for a draw.
With all the excitement of Christmas I do believe that I have forgotten to mention a milestone in my life. My dear wife insisted that I gave up driving in November. She accepted that I was safe on straight roads but very suspect when it came to bends, which is not a good recipe for safe driving. I gave up without a struggle as I realised that she was right. The problem was not so much grasping the steering wheel, as my fingers curled naturally with the MND, but it was the weakness in my arms, in particular the right one, which locked from time to time and would have made it difficult for me to swerve in an emergency. I would never have forgiven myself if, as a result, I was responsible for an accident. In the event Alice sold my lovely old Rover for such a small amount of money I’m ashamed to mention it, but at least it went to a friend.
Another great escape for England in the test match. In a nail-biting finish, our number 11, Onions, survived the last 17 balls, to achieve a draw, which means that England cannot now lose the series.
5 January 2010
The severe winter weather continues so the golf course is closed. In any event, I would not have been tempted to walk around the course in the freezing weather, instead I spent a little longer in bed listening to the first day of the second  test match, against South Africa, which started with the almost daily predictable drama we have come to expect, the loss of two of the remaining English wickets in the first over. Fortunately Prior and Onions managed to drag the score on so that we were only left with a deficit of 18 when South Africa opened its second innings.
The great excitement today was Anthea coming to do my use nails, both feet and hands. Although I had a perfectly good arrangement at the Saffron Walden Community Hospital with a charming poderist for my feet, hands were not part of the deal thus my taking the matter up with the Deputy Speaker, Sir Alan Hazelhurst. (Our local MP). He is still battling away in the background for the Essex County Council to provide a fingernail service for Essex residents. I believe he is winning but in the meantime ‘my lovely’ decided that the whole business of driving to Saffron Walden etc. was just too much of a fag and has made arrangements for me to be topped and tailed at home, of course, at our expense. I suppose we are one of the lucky ones and can afford it but I will still battle away to get this service providing free for others who are not as fortunate as we are and can afford it.
4 January 2010
We are in the coldest winter spell for over a decade, possibly longer. Having said that the sparkling frosty landscape is set off by absolutely beautiful blue skies, more reminiscent of Switzerland than grey dreariness are a typical English winter’s day.
In the second test match against South Africa, England had a great start with two wickets for 12 runs but let South Africa off the hook by allowing them to finish last evening on 276 for 6. This morning saw a dramatic half-hour or so with the last four South African wickets falling for 12 runs. England then went in, with its tail up, but this immediately changed when we lost a wicket with the second ball. After that followed the inevitable English collapse, we then regrouped and managed to end the day only 55 behind with three wickets in hand.
I wrote to the MND Association, following up on earlier letter, concerning the provision of a leaflet to be given to newly diagnosed MND patients. What I said was that rather than individual patients collecting information piecemeal, as indeed I have done, could not the Association take the lead and design and provide a template, for such a leaflet, to be distributed to (hospital assessment) teams to be completed by the hospital OT.
What I have in mind is that this leaflet will not only include simple cheap practical DIY suggestions but will also list all the organisations that cover that particular patient’s needs. The name address and contact details, for example, of social services, the district nurse and so on. It should also include details of what the  patient is entitled to such, as Attendants Allowance or perhaps a Blue Badge. Also, what, for example, AbilityNet can, or may, provide and how to start this process. What the NHS will provide free and what they might provide that will be means tested. A list of useful websites …….and so on.
I know that all of this information is available from other sources but to bring it together in one bespoke document for each patient would be an enormous help and indeed could make an early substantial improvement in that patient’s quality of life.
Perhaps the Association could run a one day training courses for specialist OT’s who form part of MND Assessment team’s. Not only could they be briefed on the problems that MND patients are likely to face, and suggest some practical solutions, but could also deal with this question of putting together a specialist leaflet that each patient.
New Year’s Day
Well, we’ve made it to another year. Traditionally this is the time when one makes New Year resolutions, dieting, drinking less, exercising more etc. I had no intention of doing any of these things instead I intend to pursue last year’s policy of Carpe Diem (Live for the Day).
Today saw another milestone in this blog when we exceeded 150,000 hits
New Year’s Eve 2009
Michael left early this morning to spend the New Year’s Eve celebration with his family in Sweden. A brief but happy visit.
A visit to Addenbrooke’s Hospital this morning for a fitting for lycra gloves. It seems that they have no experience in trying out these ‘second skin’ gloves for MND patients. It will certainly be interesting, both for the hospital and for me, to see if they do any good. I go for a fitting on 21 January.
I received a report from Papworth Hospital today following my visit on 7 December.
Basically all seems well and there is no evidence that there is any bulbar (throat) involvement in this stage. There was a slight concern over my overnight oxygen saturation, measured on the Oxyimeter, Â which they will check again on 29 March when they say that they should then be more certain of my trajectory.
Today, was a red letter day for my blog when it passed the 150,000 hits mark, this despite, being still horribly out of date with the last entry, in effect, being 28 November but, as I said earlier, all the information is with Richard, Â so hopefully it will be updated very soon.
Alice and I are very boring about New Year’s Eve. Unless we are invited to a party we tend to treat it like most other evening, perhaps spoiling me with a glass of champagne, otherwise reasonably early to bed as usual.
30 December 2009
A handsome win by England in the Test match against South Africa, by an innings and 98 runs, one of the best result since winning the Ashes.
The good Dr Michael arrived mid-morning from Ireland and joined me, Roger Goodwin and Paul Newman at the Axe & Compasses for a most enjoyable lunch.
29 December 2009
Tuesday, geriatric golf day. Frankly too cold, with sleet and snow threatening, for me to spend three hours wandering round the golf course. History. The prospect was enough to keep me in bed listening to the test match in South Africa where England have acquitted themselves well, declaring with a lead of 232 and ending the day early, bad light having stopped play, having taken six South African wickets for 76, leaving South Africa trailing by 154.
27 December 2009
Chloe and family gathered up their hordes of booty and left shortly before lunch, leaving a void but restoring the house to its normal tranquillity. Next year they will be elsewhere. Where will we be I wonder! I have personally have wonderful Christmas only slightly marred by the realisation that I am increasingly finding it difficult to rise out of a low chair evidencing the increasing weakness of my legs. They actually gave way on the way to the church leaving me flat on my back on the church path, but then that might have been the ice, it will certainly before drink time.
The grandchildren seem to have taken my disability in their stride without the necessity for any great explanation. Dear Lara, for example, seeing me struggling to turn a page of a book I was reading, popped over and slotted it under the keeper peg of the book stand on which it rested. When it came to meals the children quickly accepted that grandpa was going to dress up like a clown, with an apron, wrist supports, a removable wipeable sleeve and would be eating with a bent spoon, with a funny handle, and with a long ‘shoover’ projecting from his left hand for pushing food onto the spoon.
D. Mark Cato
D. Mark Cato