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14 January 2010

Posted by DMC on 14 January 2010 in Diary |

My quarterly MND assessment at Addenbrookes Hospital today. Really there was very little to discuss other than the obvious deterioration of hands, arms and particularly legs. As usual I pressed Dr Alan to predict the rate of deterioration. Unwillingly he agreed that I would almost certainly eventually lose the use of my hands followed by my legs but could not predict when – although he thought possibly within a few months. In fact, I’m doing better than he predicted last March where he suggested I might lose the use my hands by the end of the year i.e 2009, but then, as he says, he always opts for the shorter timescale. This way anything longer is a bonus. He thought we would have a better idea at the next assessment in April. By then I will have paid another visit to Papworth hospital, so the respiratory side of things will also be clearer.

Seeing the deterioration in my legs and the difficulty I had rising from the chair, the doctor kindly agreed to write and start the ball rolling about the possibility of a chairlift. These things can tend to take some months to sort out so it’s not too early to plan ahead.

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5 Comments

  • Alex says:

    I am very sorry to hear about the deterioration in you legs.
    I still remember clearly the time when you danced perfectly in Beihai Park in Beijing.

    best wihses, my professor.
    you will do better and better.

  • David Somerset says:

    Mark,

    I am very sorry to hear about your condition. Your blog is good and makes for an interesting read.

    Before Christmas I was clearing up and came across some arbitration papers you gave me to read, as a pupil, in 1997. I was going to shred them but thought I keep them to remind me of the times we spent together and the immense assistance you gave me.

    Regards

    David

  • DMC says:

    How kind, David. I’m so glad you are enjoying your blog it does seem to have some sort of appeal. I’m about to add a few more jokes and anecdotes and video clips which are all a worthwhile diversion.Do pass on the blog address to your own list of friends and relatives in the hope that it will do some good to somebody somewhere.

    Good to hear from you on the best of luck in 2010.

    Mark

  • Jeff Steer says:

    Dear Mark
    Good to talk with you yesterday, and find you in good spirt and still fighting the buggers!!. Here is the info as promised. MND Equipment Loan for rise and recline chair. No 01604611802. You might need to be referred for this by your OT. For my breathing which a year a go was. 90 but after a month on,18 microgram of Spiriva (Tiotropium) per day inhaled.It went up to 92,All my breathing test results, also showed improvment. I am back up to Kings Hospital later this month for my 6 monthly check up and will call you after. Best wishes, Jeff

  • DMC says:

    Thanks, Jeff. Our exchange of views this afternoon on how we both cope with similar problems was extremely valuable.although your slope of deterioration seems shallower than mine and we are both pretty much at the same stage so are in a good position to help each other on a daily basis. I will be very interested to hear the outcome of your breathing tests as a result of taking Spiriva. As I mentioned, I noticed an American MND patient has been on this for some time with apparently beneficial results, so depending upon what you tell me I will raise the matter with Papworth Hospital on my next visit.
    Regards Mark

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