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25 November 2010

Posted by DMC on 25 November 2010 in Diary |

I have been very remiss with regard to another MND sufferer — Patrick Joyce. Some months ago Patrick did me the honour of choosing me as one of the people whose portrait he would paint in a series of 100 Extreme Optimists. He did indeed paint my portrait – but more like a jolly caricature – and this, and the other 15 or so, can be seen on Patrick’s website, http://patricktheoptimist.org/. It is amazing that Patrick can still draw and paint so precisely with his weakening and curling hands. He tells me it is a painstaking process and he has to go over the same lines, time and time, again until he is satisfied.

As you will see from his site `Patrick is an extraordinary young man, stricken them down at far too young an age, with three young children, but bravely battling on with the support of two obviously wonderful parents. The Extreme Optimists enterprise of 100 portraits was a target he set for himself before the disease overcomes him. I certainly wish him well and hope he manages to achieve his target.

Patrick suffers from the same problems as I do. His hands are curling  up and he has one finger which he uses to type..

However, he finds that the other fingers get in the way, so he has designed what he calls a Splint Glove and there is a little video of this invention on his site.

My regular readers may recall me mentioning my Bionic Gloves (See 23 January 2009  entry) which I am sad to say got no further than the drawing board. At least Patrick got on and made something that works, with, I suspect, a great deal of help from his dad. I too have just one finger left with which to prod the laptop but this finger itself is becoming weaker by the day. To overcome that I have had made an individual splint which fits under the finger keeping it fairly straight. It works after a fashion. Of course, all of my so-called typing is done by voice activation using Dragon Naturally Preferred 10. I certainly could not envisage tapping out my fairly lengthy entries one letter at a time . In theory I should be able to do absolutely everything by voice but for some actions, like ‘ drag and drop’, I still need two fingers.. In fact, I have consultant, from AbilityNet, coming to see me on Monday to give me a couple of hours further training on voice activation, dealing with some of the more complex manoeuvres, particularly those involved in keeping this blog up to date.

Reverting to Patrick for a moment, he has been part of a medical trial taking place in Oxford, over the past two years, which appears now to have made a breakthrough and identified, what he calls a biomarker, which, presumably is giving an indication of the cause of MND in any particular person. If you are interested see Patrick’s blog for yourself. I will include the address as a link on my own blog when I can work out how to do it.

At lunchtime today, Lynn, our new OT, came to see us, sensibly to discuss the next stage of using the bathroom,  as and when I lose the strength in my legs. The point being that there is a special wheelchair which fits over the WC and doubles up as a shower chair. The problem being that there is a waiting list of several weeks to obtain this piece of equipment so Lynn is planning well ahead. She made some useful comments about the ramp into the bathroom and also produced some cutlery which can be strapped to my right hand instead of relying upon my weakening fingers to hold it. For all of which we are grateful. (Having said that we tried it for the evening meal and found it difficult to get the attached spoon into the plate. The trouble is everyone’s hands are different and it’s just a matter of trial and error which is the best method of feeding yourself).

Mid-afternoon, one of what we have come to call ‘the old faithfuls’, Douglas Gordon, dropped for a chat. Douglas and his wife Cecilia (my erstwhile piano teacher. Her parents showing a great deal of foresight when they christened her, as St Cecilia is the Patron Saint of Music). Douglas and Cecilia celebrated their golden wedding anniversary this very day. Longevity of marriage is par for the course for all of our ‘old faithfuls’, who comprise half a dozen couples who have lived here, or hereabouts, for the last 40 odd years or so.. I suppose we were part of that generation that adhered to our wedding vows ‘for better or for worse, in sickness or in health’, and have remained with our first choice of partner. Unlike today’s young people who might live together for years unmarried, despite having children, and then split up when they ‘fall in love’, usually with a younger model! A great mistake.

I can say, from personal experience, that nothing can beat the companionship which develops, between two people, over half a century.

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2 Comments

  • helen says:

    Dear Mark

    Your blog is a delight -I came across it this evening and it really helped me. My 81 year old father was diagnosed with MND last month and I have felt so sad and depressed by all that I have read on various websites and blogs. Yours was the first account that actually spoke about living- and the beauty of living – despite the enormous challenges of this disease. It gave me hope that perhaps my dad’s situation will not be as dire as everything I have read. And the practical advice you offer is enormously helpful. Thank you for sharing your story, you are inspirational.

    best regards

    Helen

  • DMC says:

    Dear Helen
    Thank you so much for your kind words. It is this sort of comment that makes the whole thing worthwhile. I know it is no consolation when you get to 81, or 76 as I am, but then compare oneself with say Parick Joyce -see link -a young man with three small children.
    If your dad has the inclination try to get him to read the blog and when it gets fed up with it look at the Jokes (some of them are truly awful);Anecdotes (most are inspirational) as are the Videos and the Photos (most of which are either very beautiful or sensational) I suggest that he tries the Demoltion Call on 29 August entry.

    Good luck and keep reading your blog. Indeed, send it to your entire address list if you feel inclined in the hope that one or two other people may benefit from it.

    Best wishes

    Mark

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