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Living through MND – or living whilst dying?

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  • nunhead_man
    Hi Doug

    When I posted that, I was thinking of those that are persistently and imaginatively hunting for amelioration and cure for a disease that has no cure at the moment in a way that avoids the worst of the snake oil merchants.

    My thoughts so far is that that is quite a difficult line to tread - I have a great respect for my NHS consultant since he was the one that effectively said there wasn't anything he could do for me and suggested I drink matcha tea because of its oxidising and anti-inflammatory properties and continues to be interested in what I find out about alternative stuff.

    So yes the four I mentioned are diverse in their approach - although the carapace approach that Peter takes in some ways follows in the footsteps of Stephen Hawking - Lee I see as a finder collator and analyser and Tony Ember as somebody thinking carefully about gut health

    When I mentioned diversity I meant men and women, black and white but now responding to you I'm also thinking about the characterisation of the people I mentioned in the terms I use above

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  • Doug Carpenter
    Hi Andy

    Given the diverse nature of those already listed. I’m not sure what criteria you’re using.

    It’s good to see Lee Millard listed by the way.

    But if you’re thinking of people who make a real difference to the lives of MND sufferers then I’d suggest Rachael Marsden, my specialist Nurse Consultant at the neuroscience department of the John Radcliffe Hospital in Oxford. Not only has she devoted her life to caring for her patients, but she has just broken the world record for cycling round the globe on a tandem to raise money and awareness of MND.

    Rachael is one of those people who have a personality and a smile that cheer you up just by meeting her, even if she’s telling you that such and such a metric is heading in the wrong direction.


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  • Living through MND – or living whilst dying?

    I've been meaning to put something like this together for a while on my work blog to warn those that I haven't spoken to directly what is going on for me and to laud those that I think have made a difference to me

    The current version of the blog is here;

    In particular I'm interested that the four people I mention are all men and I just wonder if anybody here can think of others that might compare with those I mention that might improve the diversity!