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Thread: Hi my name is Lee Millard and I have had MND for 3 years......

  1. #1
    Forum Member Onein400's Avatar
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    Hi my name is Lee Millard and I have had MND for 3 years......

    Hi there everyone. My name is Lee Millard and I have a slow variant of MND, possibly PLS.

    I am scientist by education and Salesman by trade and since being diagnosed with MND I have researched the subject extensively.

    I finally started my blog

    http://onein400.com

    recently with 2 missions

    1) Get the right statistics out to the public. This is NOT a rare disease. Please see my blog for details. The title sort of gives it away.
    2) To educate and inform, with my scientific background, on some of the aspects of the disease.
    But above all, try to be entertaining, ie keeping a funny side to life.

    I have written articles on how to bank your voice, which I did last year, and it was easy. If you want a step by step guide please see the favourites section on my blog.

    I hope you enjoy my blog. I update it weekly. If anyone has any questions, please don't hestitate to ask.
    Regards
    Lee Millard

  2. #2
    Forum Member Terry's Avatar
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    Welcome to the forum Lee;

    Sorry to hear of your diagnoses. When was you told, what were your first symptoms and how are you now.

    Thanks for your link. It appears very clear and well presented. It's always nice to have clear notes and pictures to follow.

    Hope that you can cover some other subjects.

    Best wishes, Terry
    Last edited by Terry; 6th October 2015 at 16:59.
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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    Forum Member Barry52's Avatar
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    Hello Lee and welcome to the forum.

    I looked at your blog on Facebook under the PLS group that Neicey established. I too was diagnosed with PLS and I found your information to be very enlightening. Please continue to research as someone like you with an analytical mind makes it easier for me to understand.

    Best wishes
    Barry
    Life is a journey, not a destination.

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    Hello Lee,

    You are very welcome on this forum. I have had a look at your website and I find your analysis of the risk of developing MND very interesting. I was concentrating on the 2 in every 100,000 figure but I can see that this is per year and what we should be considering is the risk over a lifetime when the likelihood increases markedly. I'll need to study the Maths a bit more but 1 in 400 sounds more feasible, I've got it and talking to friends and family they know of other people who have it too which means that it must be more common than we are led to believe.

    I am a big War of the Worlds fan so I was amused to see your U Tube video about voice banking, it would be hard to beat Richard Burton but you give him a run for his money. Had you thought of giving us your version of Under Milk Wood?

    Anyway a pleasure to make your acquaintance, look forward to following your blog and reading about you here.

    John

  5. #5
    Forum Member Onein400's Avatar
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    thanks Terry

    Thanks.

    Diagnosed 17 months ago, but had symptoms 2 years before that. First symptoms was a flicky leg during my regular run.

    Slowly progressed. I still walk, and my voice is a bit slurry. Appears to be upper motor neurone dominant.

    I appear to be lucky (if we can say that about this disease) in that it is very slow. I am going to document more about what I am doing on the blog. It will be all wrapped in terrible jokes etc.

    How are you?

    Lee


    Quote Originally Posted by Terry View Post
    Welcome to the forum Lee;

    Sorry to hear of your diagnoses. When was you told, what were your first symptoms and how are you now.

    Thanks for your link. It appears very clear and well presented. It's always nice to have clear notes and pictures to follow.

    Hope that you can cover some other subjects.

    Best wishes, Terry

  6. #6
    Forum Member Onein400's Avatar
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    Hi Barry,

    Thanks. How long you had it and how are you now?

    Lee



    Quote Originally Posted by Barry52 View Post
    Hello Lee and welcome to the forum.

    I looked at your blog on Facebook under the PLS group that Neicey established. I too was diagnosed with PLS and I found your information to be very enlightening. Please continue to research as someone like you with an analytical mind makes it easier for me to understand.

    Best wishes
    Barry

  7. #7
    Forum Member Terry's Avatar
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    Hi Lee;

    I'm lucky as well, (Not that any of us are lucky to be here). Diagnosed nearly six years ago, mainly PLS, can't really talk, can shuffle along with a weighted walker, can still eat and get around some of the gym. Have trouble drinking but do manage too. Breathing is OKish.

    Still quite independent, although I do need help. Normally still enjoy life and play a bit of chess online.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  8. #8
    Forum Member Onein400's Avatar
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    John,

    Yep its all absolutely rock solid. The incidence stat is an old way of showing disease, ie 2 people per 100000 of population per year get it.
    The best way to imagine it is if the population is only 100000, and in year 1: 2 people get it. But in year 2 another 2 do, but the population swells with new born. The stat takes this into account which make incidence stats worthless and doesnt help raise awareness.

    2 in 100000 makes it sound rare, but the reality is most people live a good age and if they do, the cummulative chance is then 1/400! And with spouses etc being just as devastated by the disease, in reality about 1/150 are touched by it!

    Like you, once I was diagnosed, suddenly friends said 'oh xx has that or my mum had that.

    Thanks re Mr Burton. His voice is just so amazing.

    I have lots of posts queued up!

    Lee


    Quote Originally Posted by John14 View Post
    Hello Lee,

    You are very welcome on this forum. I have had a look at your website and I find your analysis of the risk of developing MND very interesting. I was concentrating on the 2 in every 100,000 figure but I can see that this is per year and what we should be considering is the risk over a lifetime when the likelihood increases markedly. I'll need to study the Maths a bit more but 1 in 400 sounds more feasible, I've got it and talking to friends and family they know of other people who have it too which means that it must be more common than we are led to believe.

    I am a big War of the Worlds fan so I was amused to see your U Tube video about voice banking, it would be hard to beat Richard Burton but you give him a run for his money. Had you thought of giving us your version of Under Milk Wood?

    Anyway a pleasure to make your acquaintance, look forward to following your blog and reading about you here.

    John

  9. #9
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    www.projectmine.com looks great. I couldn't see an easy way of passing the page onto friends. stuck with cut and paste.
    Thank you for your page its given me focus

  10. #10
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    Welcome Lee

    Sorry for your diagnosis. You come to the right place for information, advice, comfort and friendship by a great group of people here.

    One in 400 does sound more accurate, and it certainly does seem everyone knows someone effected by it.

    Good luck, and all the best to you.

    CCxox

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