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14 March 2012

Posted by DMC on 15 March 2012 in Diary |

Yesterday was meant to be my second visit this year to join the geriatrics on the Tuesday golf day and have lunch at the club. The weather forecast was for a sunny day with a temperature of around 15°. In the event, having spoken to Ollie’s wife Debbie neither of us were happy with the weather forecast so I cancelled it. Just as well I did as it turned out to be a miserable overcast day. Well, there’s always next week and with any luck from now on with the weather improving week by week I should be able to get back into my weekly visit to the golf club.

I hate whingeing on about my personal complaints but do so in the hope that any other patients suffering from the same symptoms will either benefit from my experience or vice versa.

Anyway the point of mentioning this was that I had another miserable night with a fair amount of pain in my knees, my left hip and left shoulder. As in the past the same pain has been in the other hip and shoulder I cannot help feeling that it is a problem with my joints which surely cannot be unique to me and must have commonly exhibited itself in other MND patients. I will certainly raises again and my next assessment.

While I’m having a good moan I may as well mention two other matters. The first involves a sebaceous cyst on my right shoulder. I complained about this, to the local GP, three or four weeks ago. I was given some antibiotic which appear to have had no effect in the meantime this cyst appeared to be going septic and we’ve been trying out for 10 days or so to get the Dr to come and deal with it but without success. Now Alice is on the war path and is determined to get someone here today or tomorrow who can take some positive action. I have had these sebaceous cysts before, usually on my back, and unless they are regularly squeezed to expel the trapped oil, they usually grow too big and the only solution then is to cut them out.

The other problem I have, which will resonate with most MND patients, is the pressure cushion on my NHS lounger chair. The one I have at present is not too bad except for the last couple of hours of the day by which time, sitting on two bones, as I do, it becomes very uncomfortable. I have asked my occupational therapist, for at least a month now, to provide me with something better , for example, something like Roho cushion I have on my wheelchair.

Talking of sharing experiences when the ‘miracle’ of my Artificial Urinary Sphincter occurred (see yesterday’s entry) I contacted the college (or society) of urologists offering to submit a short paper on my experience which I thought would be of great interest to them. My thinking went this way. If one could have the valve partially open by accident then would it not be possible to fix it in that position deliberately and thus fit the device to patients who were incontinent. What a relief it would be to them no longer having to wear an external leg bag but none of them seemed at all interested but were unable to offer me any reasonable explanation, why no. I would have thought it was a wonderful option to offer elderly people who were becoming incontinent. I even tried the American Institute of urologists that met and blank wall the too.

This afternoon, presumably after analysis early-morning phone call, Dr Lord appeared with a practice nurse and proceeded to cut into the sebaceous cyst and evacuate all that had accumulated in it by squeezing. It was not a very comfortable experience but hopefully that will cure the problem although, my experience in the past has been the only way to get live such a large cyst is to literally cut out the flesh. After she had finished the Dr dressed the wound and said it should be kept dry for five days and that the district nurse would drop in next Monday to have a look at it.

Do you remember, as a child, you adding being particularly naughty and wanting to get back into your parents good books by doing something that was show them that you are contrite

I certainly remember the odd occasion when I have down some job rather like tidying   my room, wash ing the car or done something quite out of the ordinary for me ,in the hope that I will be forgiven my previous transgression. Click here to see an example of this entitled The Perfect Daughter.

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