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25 May 2011

Posted by DMC on 26 May 2011 in Diary |

Michael rang up from Sweden last evening to tell us that he had arrived safely. He had a bit of a panic at this end before he left as he could not find his car keys. However, he had obviously left them in the box when going through security at the airport, on the outward journey from Sweden and they were readily available to him when he arrived, otherwise it may have taken him an hour or two to get some duplicate keys from the local Subaru dealer.

I really think that my limited walking days are almost over. When I returned yesterday from the golf club even, with George, the wheelchair taxi driver’s assistance, and Alice on the other side they could not get me up onto my feet so we had to resort to the hoist. This morning I finally abandoned the leg exercises in bed as they were becoming extremely difficult and I felt were not doing any good. I did manage to walk dragged my feet, using my frame, into the study but I suspect it will not be too long before I am wheelchair bound with all that that implies.

My ‘tummy rubbing ‘ lady, Karen, came to do her stuff this morning. Including, very kindly massaging the neck muscles to relieve any tension. Whether it’s doing any good, heaven knows, however, it may be easier to judge when it is done conscientiously three times a day as she suggest.s but we cannot start this until our Continuing Care comes through and I can asked the nurses to do it. I certainly cannot expect Alice to add this to the list of the things she already has to do for me has to do for me at present. Karen also brought us a bottle of Swedish bitters, a teaspoon of which to be taken daily in water. An absolutely disgusting taste at it is meant to relieve flatulence and actors mild laxative. We will go through this (expensive) bottle and then decide whether it having any effect.

Otherwise a fairly normal Wednesday with’ Jane the sheep’ taking over for a couple of hours in the afternoon and I went out into the garden in my electric wheelchair for an hour or so in the mild sunshine to get some fresh air, I certainly enjoy the freedom of the electric chair but it’s a little bit hard on the buttocks after a few hours. Maybe I shall have for ask some special sort of cushion

At last I have received a reply from my local MP, The Rt.. Hon. Sir Alan Hazlehurst, re. my idea for a nationwide scheme of one-to-one mentoring for children from deprived families. (See my letters to the Deputy Speaker of the House Of Commons, Sir Alan Haselhurst and The Prime Minister, 11 February 2011 entry) Quite rightly, Sir Alan passed my letter to the Secretary of State in the Ministry of Education and receives a long letter from Minister, Michael Gove. Sadly, he or his PA, totally missed the point.

Whilst agreeing with me that monitoring is a a powerful tool to help young people understand the world of work and the opportunities available to them, this minister referred me to the Education and Employers Task Force which the government recently announced as their Social Mobility Strategy. This Task Force,, amongst other things, is already developing Robert Heston’s, the BBC’s Business Editor’s Speaker for Schools programme, and Mr Gove suggests that I might consider becoming one of these speakers. As I said to Sir Alan, although this in itself may well be a good initiative, it completely misses the point of my idea and frankly I cannot see a great deal of sense in me putting my name forward as a speaker to the group of local school kids who are probably already reasonably well-educated and motivated. So I may have one final attempt, by contacting this Task Force, to see if I can get them interested in my idea but I will not hold my breath fce a successful outcome.

A quiet day after the excitement of the children’s recent visit is and ‘my lovely’s’ birthday celebrations. Incidentally, I forgot to mention that the three grandchildren, accompanied by their parents, I imagine from their campsite, gathered round a mobile phone and all sang happy birthday to granny on the day itself. All very touching I wonder what the grandchildren will now call granny, obviously no longer’ ‘granny donkey’ now that Mouse, the donkey, has departed this world.

At last I have managed to find out where our Continuing Care application has gone to. Not from the district nurses who I have I rang up consistently over the past two or three weeks, without response, but by going direct to the person at West Essex PCT who is processing the application. Apparently there were problems with the paperwork which was not completed as required. The lady responsible for my case is hoping that she will shortly be in possession of the last piece of paperwork and that the case can be considered towards the end of this week. The only problem from our point of view is that it is now a number of weeks since the assessment was carried out and there is no doubt that I have deteriorated substantially in the meantime. So if we get turned down we may have no choice but to appeal. I have asked West Essex PCT to send me a copy of the regulations showing what the criteria is for eligibility for Continuing Care which they have kindly agreed to do. In the meantime we struggle on using our own resources.

 

24 May 2011

 

Didn’t have a brilliant night. I am finding it more and more difficult to turn over in bed which is immensely frustrating in the middle of the night. This despite the satin over sheet, the Wendylett under sheet with the satin centre to which I have pinned a rubber mat in order to give more purchase to my feet. In addition we have put cage over the feet to hold the weight of the bed clothes.

 

The main problem is an in turning I trapping over sheet under my body and my arms and hands are just far too weak to move them. Heaven knows what I’m going to do when I can’t turn at all,. I think I will go crazy. The problem is, despite the sleeping tablets and diazepam I wake usually around midnight then obviously drop-off cat napping to say around 2.00 a.m. and this pattern continues until ‘my lovely’ comes in at 5 a.m. That works fine at present but for how much longer and I cannot possibly wake Alice in the middle of the night to turn me as she would become absolutely exhausted. This is something I must take up with my MND team and I see them in early June or alternatively, Dr Margaret Saunders, the extremely helpful palliative care consultant..

The good Dr Michael arrived back late afternoon yesterday from his trip to Cornwall which, by all accounts, had been extremely successful. He left early this morning, after shaving me and generally helping Alice, to return to Sweden

My great excitement today was my first trip in my electric wheelchair to the golf club. We are fortunate in having a local taxi service which specialises in wheelchair transport, located a few miles away in Saffron Waldon, it was absolutely marvellous. I had a very personable Polish driver, George, in a very modern purpose made vehicle with a hydraulic ram that raises the wheelchair which is then locked securely in position on the floor. The whole process turned out to be much more satisfactory than being hauled in and out of cars into mobile wheelchairs and then in and out of the golf buggy and so on. I really think this is the new way forward. Apart from the convenience of the whole business, the sheer pleasure in being able to drive around the golf course following my friends on foot was much more fun than being trapped in a buggy I was a little nervous at first particularly about the slopes but I soon got used to it and can’t wait to next Tuesday to repeat the process.

For some light relief here are some absolutely magnificent aerial photographs. This is a collection of photography produced by Yann Arthus-Bertrand. Large scale photos cover several continents and are a result of a five year odyssey around the world by the photographer. click on link below

http://justpaste.it/3ky

 

25 May 2011

Michael rang up from Sweden last evening to tell us that he had arrived safely. He had a bit of a panic at this end before he left as he could not find his car keys. However, he had obviously left them in the box when going through security at the airport, on the outward journey from Sweden and they were readily available to him when he arrived, otherwise it may have taken him an hour or two to get some duplicate keys from the local Subaru dealer.

I really think that my limited walking days are almost over. When I returned yesterday from the golf club even, with George, the wheelchair taxi driver’s assistance, and Alice on the other side they could not get me up onto my feet so we had to resort to the hoist.

This morning I finally abandoned the leg exercises in bed as they were becoming extremely difficult and I felt were not doing any good. I did manage to walk dragged my feet, using my frame, into the study but I suspect it will not be too long before I am wheelchair bound with all that that implies.

My ‘tummy rubbing ‘ lady, Karen, came to do her stuff this morning. including, very kindly massaging the neck muscles to relieve any tension. Whether it’s doing any good, heaven knows, however, it may be easier to judge when it is done conscientiously three times a day as she suggest.s but we cannot start this until our Continuing Care comes through and I can asked the nurses to do it. I certainly cannot expect Alice to add this to the list of the things she already has to do for me has to do for me at present. Karen also brought us a bottle of Swedish bitters, a teaspoon of which to be taken daily in water. An absolutely disgusting taste at it is meant to relieve flatulence and actors mild laxative. We will go through this (expensive) bottle and then decide whether it having any effect.

Otherwise a fairly normal Wednesday with’ Jane the sheep’ taking over for a couple of hours in the afternoon and I went out into the garden in my electric wheelchair for an hour or so in the mild sunshine to get some fresh air, I certainly enjoy the freedom of the electric chair but it’s a little bit hard on the buttocks after a few hours. Maybe I shall have for ask some special sort of cushion.

For any of my readers who are thinking about buying property you might find this rather risque Australian video rather amusing ! If you are a feminist or a little foolish I suggest you skip it. lick on the URL link below

 

http://www.15queenannecourt.com.au/uncensored

 

 

 

 

2 Comments

  • Steve West says:

    Mark, you might try looking into a Roho air cushion to improve the comfort of your power chair. I have one and I sit in my power chair8 to 12 hours a day without any discomfort from the seat at all. They are a little pricey, but might be covered by your national healthcare.

  • Prof Mark Cato says:

    Many thanks, Steve. As a result of your comment I contacted my wheelchair providers and they have confirmed that they have already ordered a Roho air cushion for me. However, I am very grateful to you for your suggestion.

    Best wishes

    Mark

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