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21 February 2012

Posted by DMC on 22 February 2012 in Diary |

Paul’ the computer’, has fixed up my music, as he promised, so I can control it from my laptop and play it through my Bose speakers. He has yet to set up the macro commands for me, like scrolling down scrolling up; selecting a named composer or piece of music etc, all of which is possible, even if we had to purchase a special Dragon Lifestyle programme, but in the meantime I have the added pleasure of being able to listen to my classical music once more..

Although Paul and I I have pretty well cracked the problem of voice activation (mainly Paul), it is still not 100% of what it could be. This is because the high-speed USB port on the laptop is corrupted and there are only two USB ports and, in addition, there is something wrong with the keyboard as it occasionally inserts a space after a letter without being prompted to do so. When the program froze. This morning I got onto Dragon, as they requested, gave them access to my computer and left them to it. whilst I had lunch. When I settle down again and read my e-mails I saw one from them are asking if I could recall what programme Dragon had frozen on. I told them that the best of my memory. It was Microsoft office Word 2010.

I got onto the MND Association this morning,, who own this computer, and because of two hardware problems not working correctly, suggested that they replace it. My main problem however is that I cannot be without a computer for two or three weeks while the exchange takes place. I told the lady concerned that they need to deliver the replacement computer so that we can transfer all information over and then we will send the other one back. She told me that they have changed their policy and no longer provide laptops to their members. I pointed out the importance to me of continuing my daily blog which is mainly for the benefit of MND patients and their carers and I hoped she would take this into account when discussing the matter with her superior. After discussing this with her supervisor. She sent me a Financial Application Form which I drove fill-in with Paul at the end of the week.

Alice was concerned about an inflamed sebaceous cyst. I have on my shoulder, so I telephoned the local surgery hoping that a district nurse could pop in and have a look at it. In the event, to my GP, Dr Lort, came herself and after examining it suggested that we put a hot flannel on it three times a day in the hope of drawing it out .When I told”my lovely’ what the doctor had suggested, she was not at all pleased and got on the war path this morning to the surgery to insist that they send a district nurse out with a proper poultice and not expect her or any of the carers to cope with this in an amateurish way. Making the usual noises about being short staffed -which I am sure is the case, as are only two of them for the whole of this district – the district nurse did agree to come and look at it and hopefully bring some poultices with her. Alice was also concerned about a small mole on my back, which has become inflamed and itchy Again we must have this checked out ASAP as I spent my life in the sun in various parts of the world and if anyone deserves to get skin cancer is me, so better save than sorry. When the district nurse arrived and looked at it . she said that it must be checked out by the GP. Such a pity it was not itching when she came yesterday as I do not think she will be too pleased come back again so soon. (The district nurse did not have any poultices and did not seem to know where we could obtain them from!)

Whilst Dr. Lort was here. we discussed a number of other things, including my highly disturbed stomach, trapped wind and bloating. She suggested it was probably a combination of the medication I took and she would look at them when she got back to the surgery. I suggested that at the same time she consider if any of them could be converted to a liquid as the process in the evenings of shovelling in something like 15 pills is becoming a bit of a nightmare, particularly as I’m fearful of choking, which I know is all in the mind, but nevertheless I begin to dread having to go through this performance every evening. Just to cheer me up, whilst she was here, Dr Lort. produced a DNR form (Do Not Resuscitate)., As she said, mainly for the carers who tend to panic if something untoward happens to their patient. She said that the practice doctors sit down once a week to discuss patients like me, (i.e. those on the way out!,) and raise the matter of being resuscitated in an emergency. She said that the carers tend to flap. If anything happens to their patient and call the paramedics, whose duty it is to try to resuscitate the patient.

Unless, like me, have made it clear, they do not want to be resuscitated if they cannot be sure that I would have the same quality of life. As I had before, then I would rather slip away. I certainly do not want to end up as a vegetable, for months or years in bed, unable to move or do anything for myself and become monstrous burden on my family.

Tonight was the first occasion that we tried the earlier bedtime – 9.00 instead of 9.30. It is these last two or three hours, each day, when I am fatigued that I fele I would be better off in bed. The only drawback being that if I have a painful right. I would not want to extend it. However, last night, to be honest, I did not notice the difference. So we shall stick to the nine o’clock time for the foreseeable future.

‘My lovely’ has this quaint idea of making me comfortable in bed around six and installing a nice new flat screen HD TV at the end of the bed so we can both sit there and watch something that goes on after nine o’clock,, whereas what we can watch the at present is very limited. I think the only problem with that is, I might find ,it difficult to get comfortable,. sitting up in bed., However, we will see.

The highlight of today was the visit of my daughter Chloe and my three grandchildren., Fred, Sebastien (Seb.) and Lara They buzz around the garden burning up some of their, seemingly endless, energy which expands from the grim constricted area of their small London garden into the freedom of the large open space of our garden. I do not expect them to spend a lot of time with me .but I usually manage to find a couple of things on my computer that interest them, but beyond that they run around the garden and let off some steam. We all had lunch together in the breakfast room and I was able to have a small cigar before being wheeled back into the study. From my point of view is just a joy to see them from time to time..

As this entry includes a comment on my medication. I got this little joke about tablets would be appropriate. Click here and see if you agree.

4 Comments

  • Don Farrell says:

    Now that you’re watching TV in the evening, do you ever watch Masterpiece Theater’s “Downton Abbey”? It is found on our public television stations and has caught fire over here. It IS beautifully done and pleasing to the eye, but quite a bit like a soap opera. I’d be curious to hear what a Brit thinks of it!

  • DMC says:

    Don.

    We had two series of Downton Abbey towards the end of last year. We both enjoyed it very much and I would say that it was a fair characterisation of what went on at the time. My wife Alice has actually been to the house where this was filmed. It’s this sort of program that the British do really well and I’m glad you are both enjoying it.

    Best wishes

    Mark

    • Don Farrell says:

      We’re in series number two here. The lighting and camera work are exquisite and the articulate speech combined with their method of cutting to the chase with every conversation is addictive.

      My ALS progresses steadily, but slowly. Hands are going down hill but speech and swallowing are hanging tough. I’ve decided to retire on disability this spring and move on with “the rest of my life”. I had to give up singing but have started a book project and have some traveling planned. I may start a website for sharing poetry and ALS stories / resources. Thank God my kids are grown.

      Love,
      Don

  • DMC says:

    I’m delighted to hear that your ALS is progressing so slowly. When we you diagnosed?. You can see from my blog the progression. I have been through over the past four a half years.

    You are so right to retire and start some new projects, particularly the travelling whilst your legs are still working. Thank heavens I had trouble just about everywhere before I had to stop. Starting a website that you have to deal with on a regular basis is a great idea. Like my blog, having committed to it it is something I have to do every day.

    Good luck, Don, with all your endeavours.

    Carpe Diem.

    Mark

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