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6 June 2012

Posted by DMC on 7 June 2012 in Diary |

Last evening, Prince Charles did a one hour television programme in tribute to his mother. A homely affair looking at old photo albums and reminding us that to all extents and purposes they were like any other small growing family enjoying the ordinary things in life.

In the middle of all of this excitement that good Michael arrived, en route to Australia to see if he could give Alice a hand. He came at an auspicious point when I was struggling with the medical profession to understand what is now causing these panic attacks over the breathing

From the magnificent to the mundane. I must return to the question of my night’s sleep, to keep informed those other fellow sufferers and their carers, just where we are in this process.

My night’s sleep was back to normal after the broken night, the day before yesterday, however, I had a rather rude awakening yesterday. Since these four incidents of spasms, which have occurred when I have been deprived of air, we are acutely conscious of the possibility of it happening again and therefore take extreme caution when using the respirator

The morning of the day before yesterday, we went through our usual routine of sitting me up on the edge of the bed, wearing the respirator. Then ”my lovely” undid the straps and left the respirator running until I indicated that I was happy to have it removed. She did so, but still left it running at the side of the bed. I was just about to tell her to switch off the airflow when I I felt the beginning of one of these great surges of adrenaline and, just had time to tell her clamp the mask on again quickly, which she did. I experienced a full surge as I had on the previous four occasions but quite quickly calmed down having the respirator in place. After three or four min. I suggested she removed it, which she did, quite normally with no further ill effects..

What on earth sparks these panic attacks, which frighten the life out of me? If indeed that is what they are. I will drop a line to Doctor Michael Davies, from Papworth, as this is something we failed to discuss in depth on my recent visit.

Our routine, this day, long since established, followed it’s normal pattern. Michael upstairs in his sitting room, sending messages to various members of his family, or Skyping them if they are online: Young Tom in Brooklyn, USA; William in Paris; Kate on her course in Denmark and Penny heaven knows where. But what a great way to keep in touch with your family and let each one of them know what is going on.

Me, downstairs in my study, which is located beneath Michael”s sitting room so I am able to call out for help or assistance without even resorting to the alarm. As usual, I devoted the best part of the morning to the daily blog entry and answering the various e-mails I might have received in connection with an earlier entry. Before you could blink it was 12 o’clock which is time for the carer from Ross Nursing to come in and check up on my needs and that usually marks a point in time when I should rest after four hours on the computer.

By the time the Ross Nursing carer had finished it was 12:30 and time to consider lunch (already prepared and left in the ‘ fridge) the eating and drinking of which Michael dealt with, with the minimum of fuss. And in the background, Judge Judy, spelling out her form of equitable justice. Not following the normal definition of natural justice, i.e. giving each party an opportunity of presenting their case and answering the case made against them. Certainly, the judge gave the parties some sort of opportunity of stating their case but just how much seems to be just purely arbitrary.

She has read the papers and clearly holds of view as to the reliability of one party or another before she even starts case. Good television demonstrating a sensible approach to clearing up smaller cases. Clearly, the parties must have entered into some form of exclusion agreement (that is, excluding any rights of appeal they might normally have, in favour of a full and final settlement, between the parties, based on Judge Judy’s findings. (For those readers who are not the faintest idea what I’m talking about. tune into ITV plus one or 114 Free Stat. Or whatever your local station is and see if you find the judge as an absorbing as her apparent audience of 10 million viewers.)

The afternoon sped away as quickly as the morning with me now relaxing, having got up to date with my blog and e-mails, by listening to music, reading or perhaps watching a film. This merged into the five o’clock ritual of opening a bottle of champagne, admittedly much earlier than one would normally consider but with a Ross Nursing carer due at 6.00 a.m, if we were to enjoy it, we were bound to open the bottle a little earlier than we would have liked

The carer dispatched after preparing me for bed, led us to suppertime. Everything just that much earlier than we would have done in the pre-MND days. Again, a regular routine during which I am expected to swallow a large number of painkillers, relaxants, anti-inflammatory pills etc. We then tried to find something to watch on television, which ended at 8.30 – the scheduled time for the last of my carers to call, hoist me and wheel me through to the bedroom , leaving ‘my lovely’ to do all the little things to ensure my comfort in being bedded down. In the meantime, Mick had hopefully found some fascinating programme on the television, which would take him to until his bedtime. Thus, another day would have passed, not exactly action packed but more important, without mishap.

Fortunately, there is enough variety, during any seven day period, to make one grateful for the stead fastness of what most people would label, a quiet day, but, in our case and in particular on this day, it marked the end of the formal proceedings to celebrate the Queen’s Diamond Jubilee, much of which, we had the privilege of watching – events 2 to 3 years in the planning.

I think it appropriate to finish this celebratory section of blog entries with what had been described as wonderful photographs. Certainly, some of them might qualify as wonderful, which I wonder? Click here to decide for yourself.


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