25 June 2009

Posted by DMC on 25 June 2009 in Diary |

I am due to have my quarterly MND assessment on 2 July when I will finally be able to make up my mind whether I am likely to be fit enough to go to China and give my lectures in October. It all depends how much further my hands and arms weaken in the meantime. I noticed, particularly in bed last night, what difficulty I was having pulling back the bedclothes. I had to use a combination of closed fists and elbows. Also, getting up from the floor following my morning exercises, the only way I can now manage it is to get onto my elbows. Strangely enough my right hand is now more useless than the left but the arms are the other way around.

Feeding is OK as long as the food is cut up, I can use a spoon. Most drinking is through a straw as most glasses are too heavy for me, although I can still cup a wine glass. Driving is fine in my automatic as I can still curl my fingers.

My greatest fear is getting locked into a public lavatory – in the train or in someone’s offices. Locks with a circular knobs are the worst.

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  • Denise says:

    Hi Mark,

    How did you get on with your quarterly MND assessment, I hope it went OK, if you do go to China and need a PA, I could do with some time away from Barry ! (I am fully Qualified to deal with your MND) and would love to help.

    Love Denise.

  • Regarding weak hands and gadgets, our hands free drinking system is featured in the MND News May 2010 on Page 10. Hopefully it may be of use to some of some of your visitors. Pleased to see that you are nominated for a Trustee position. Good luck.
    Trevor Williams

  • DMC says:

    Thanks, Trevor. I have looked at the drinking system and wonder what advantage it has a over long straw in a two handled mug. After all you have to have a third-party to set the thing up in the first place and to place the drink in the holder. Maybe I’m missing the point.



  • The jug holds 1 litre of liquid , usually water but can be juice or beer or any other drink. It provides hydration for a whole day without assistance! Also it can be used in the syphon mode which accommodates the lack of ability to suck,a common condition with MND.
    Quite happy to send you the system for trial and assessment.

  • DMC says:

    Many thanks, Trevor. No problem sucking it up will remember you when I do.



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