16 April 2012

Posted by DMC on 17 April 2012 in Diary |

Another bright and sunny Tuesday, ideal for a trip to the golf club for the geriatric golf, except that the temperature, at best is going to reach 13°C with the threat of rain, which apart from anything else would drop the temperature by around 5°C. Clearly, it is not the day for me to visit the club. We have been fortunate so far in avoiding catching any infection from my carers or visitors, over the past two winters, so it would be crazy to risk it just when summer is upon us.

Talking of possible infections I had another choking session last evening. A tiny bit of salmon or salad’ went down the wrong way’ and I coughed and coughed with Alice beating my back with a vengeance. This went on for the best part of two hours. At one stage, we really did think it might be necessary to call for a paramedic to sort me out as there was no way that I could possibly have gone to bed with the respirator covering my face with this irritating blockage in my windpipe. In fact, ‘my lovely’ was quite prepared to sleep in her chair in the study if I had to stay sitting up. Fortunately after a great deal of effort I managed to dislodge whatever it was and calmed down again so that now the time I was due to go to bed there was no residual affect on my breathing. I really don’t and why I have these on choking fits as I understood from the MND assessment team that to-date it does not appear that my throat has yet been affected.

Paul’ the computer’ came to babysit a while Alice was out for a couple of hours today, standing in for ‘Jane the sheep’ who has caught a bug which she does not want to pass on to me.

It did give Paul and I an opportunity to further the idea of linking my laptop to the television and improve my voice link to my music library. I was particularly pleased with one macro command that we managed to add which allows me to move from headphones to my speakers (Bose) and vice versa just by voice, which may be handy, when I lose the use of my hand. We are now working on finding a particular composer or piece of music, again by voice only.

At around 12.30 today my old friend Brian Osborne came to lunch, with his 17-year-old daughter Kate, of whom I have grown very fond. She recently returned from a stint in Uganda with one of these youth overseas organisations. Kate and her friend spent some time in a village school, in the bush, teaching young children some simple reading and writing and to sing songs which they seem to enjoy more than anything. Kate, is one of those splendid young people who learned early on to put back something into society. In this instance, giving up part of her gap year before commencing university. She brought with her a large number of photographs and video clips of her time there. The children instantly fell in love with her and she with them. A good example to other young people.

I say came to lunch, it would be more correct to say that they brought their own lunch and another for me too. Smoked salmon and cream cheese sandwiches (my favourite) and a delicious quiche. They had strict instructions not to stay too long as it tires me out. With so many restrictions I wonder why people bother to come at all!

‘My lovely’ went out shopping leaving Paul ‘the computer’s ostensibly in charge. I persuaded him to wheel me into the breakfast room so I could have smoke whilst looking at Kate’s interesting pictures of her trip In any event, it is lovely to see them both again as I got to know the family very well as they invited me to use their day house in London, as a staging post, on my way to Heathrow airport, for many of my overseas trips, particularly if I had an earlier flight. So, over the years I have got to know the whole family very well. Nancy, Brian the twins, Kate and Tom and older sister Anne.

Dear Anne could not be with us and instead sent a charming newsy card. There are a very close-knit family and take great interest in what their siblings are doing and I know there admire the work that Kate did in going to Uganda. Sorry not to see Kate’s twin brother Tom and mum Nancy who had other things to do apart, from the fact that so many people would tire me out more quickly. Anyway, I happy interlude.

As this is normally my geriatric golf day and Brian was my old golfing partner I invite him and   another reader interested in golf to Click here for the 10 best caddie responses .


  • Steve West says:

    Mark, I wanted to drop you a note to ask if you have tried using an adjustable bed, one that allows the head and feet to be raised? Like you, I have ALS and my condition is similar to yours. I can’t turn myself in bed. I used to have to have my wife turned me every couple of hours. But, about a year ago we bought an adjustment period and I found that by raising the feet and the head I can get into the position that is comfortable and I can sleep through the night without being turned. It’s much more comfortable for me and doesn’t disrupt my wife’s sleep. You may have already tried this and you might have a hospital bed, but I haven’t seen you mention it so I thought I’d pass this along as a possibility.



  • DMC says:

    Many thanks Steve. I do have an NHS adjustable bed on which I sleep flat with two pillows. Like you, my dear wife, turns me every two hours but that is because of the severe pain I get in my shoulder and hips and even my heels and knees. Once I am turned over and the pressure is taken off that particular joint I can go back to sleep until the pain starts again an hour or so later

    I’m sorry I don’t understand what you refer to when you say that you bought’ adjustable period’. Having said that, pain or no pain, I am very surprised that you can turn with your feet and head raised. My problem is my legs are virtually useless but thank you for the suggestion.

    Best wishes


  • Steve West says:

    Sorry about the confusion, Mark.”bought an adjustment period” was a Dragon induced typo that I did not catch. I meant to say “bought an adjustable bed”. I can’t turn when the feet and head are raised, but the position is comfortable so I can sleep through the night.



  • DMC says:

    Thanks for the clarification, Steve. (I’m glad to hear you are a Dragon man. I have used this voice activation since the very first program came out something like 20 years ago and I remember paying the best part of £1000 for it and compared with today, it was rubbish) You say you ‘bought’an adjustable bed. Surely this was supplied by the NHS.

    In any event you managed to sleep through the night. I have never slept for more than three or four hours at a time so in that respect I know different to where I was before I had MND but now the problem is very painful joints, from which thank heavens, you clearly do not suffer. I have very recently been given a seven day slow release pain patch but as I’m only into the third day I will reserve my judgement but I will say, it looks promising.

    Best wishes


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