15 October 2012
Another week, but one based on the old time of 2 ½ hours, from outside carers, per day. I can understand that it might take a few days shuttling people about in order to add the precious extra hour, we have recently been awarded and adjusting our times so as we get the full benefit from them. I must be honest, I still watch the clock for the last hour or so, before I go to bed, as this is the time that I begin getting edgy and uncomfortable for no other reason than my ‘jug of energy’ is exhausted. However, I do not want to do what ‘my lovely’ suggests, and go to bed an hour earlier, leaving the possibility that I would wake up an hour earlier and have to live with the pain in my joints for that extra hour.
Without any way wishing to be cruel. I do believe all the carers, who have to use the sling hoist on their patients several times a day, should allow themselves to be put in the same position as, their patients and go through the process, from bed to commode; from commode to wheelchair and from wheelchair to lounge chair, including making the odd mistake with the length of the sling, just to give themselves some idea how vulnerable their patients are. This, in their healthy state, leaving them to imagine what it would be like if, on top of everything else they felt weak and unwell.
The promises of sponsorship, for the Ben Nevis climb, are still dribbling in. I am pleased to report that the initial target of £2000 was exceeded some little time ago and hopefully we will now manage to break the £3000 barrier. For those of you who intended making a donation and never got round to it, it is not too late. The book does not close for another month or so. If you have lost the form, then may I suggest you can make an online donation through http://www.justgiving.com/sarah-emily-perkins. In anticipation may I send you our combined thanks.
I received an email today from the wife of a much beloved MND sufferer, very sadly, no longer with us. The substance of the email was to record that a group of the patient’s friends got together and organised a concert at Aldeburgh and to date have raised over £5500. I think these events are wonderful in that they celebrate the life of the loved one in a manner which contributes to towards the research being carried out, to rid us from this horrid disease. I have been extraordinarily fortunate in my friends giving their time and effort in running such events. The Great London Swim and now this Ben Nevis Climb.
Following our last visit to Papworth when it was noted that I was suffering from high blood pressure, Dr West very kindly loaned her personal blood pressure monitor to us, so we could take regular readings over two or three days. Having this information would enable her to decide what course of action to follow.
Working on the basis that in a healthy person’ normal’ systolic pressure would be 140 and the normal diastolic pressure would be 90, our results have shown my systolic to range from from 70 to 105. Heaven knows, what conclusions Dr West will draw from these results. We received a telephone call yesterday from Papworth telling us they will be dropping off an instrument for us to make some recordings for them. I suspect it is the finger clip that I wear at night to monitor the amount of oxygen in the lung blood. I seem to recall Dr Michael Davies saying that provided this did not fall below 90 there was nothing much to worry about but as we were wavering about in the low 90s perhaps he is being ultra-cautious and attempting to pre-empt any problems which might occur from this particular symptom.