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My blog on living with MND

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    My blog on living with MND

    Morning all and happy new year.

    I haven’t posted on here in a while, but sadly I have seen lots of new people join our club since I last did. So I thought it appropriate to post about my blog.

    For those who haven’t come across my blog, http://Onein300.com you might find it both useful and perhaps a light hearted read as well.

    Initially I started the blog to get the most powerful statistics used in awareness at a time when we were using poor data. 1 in 300 in the lifetime risk for anyone developing MND or ALS! Putting into perspective, covid has currently killed about 340,000 in the USA and it is likely to kill about 500,000 before it is stopped.

    Now when you look at MND, over 650,000 of the current living population of the USA will develop and die from MND unless we find treatments!

    MND is not rare!

    I write both basically silly posts about life with MND but also serious posts on research.

    http://Onein300.com/research

    and


    https://onein300.com/the-devil-is-in-the-detail/

    I have been diagnosed for 6.5 years and symptoms for 9 years.

    I have seen a lot of things, come and go and come and go again, particularly in research. Sadly many false hope treatments and strategies are amongst these. Our desperation makes for a strong motivator, when in reality some of the leads are repeatedly misleading. I hope my blog can save you time and wasted rabbit holes.

    Supplements (food) are ever constant worry and we are targets for some staggering claims and very very poor science claims.

    On the optimistic side, we are making real progress and we are within striking distance of real treatments for some forms of our disease within probably 2 or 3 years. Research is accelerating and once we make a breakthrough in even 5% of our community industry will flood in with research cash.

    Happy new year all!

    #2
    Dear 1 in 300 you have clearly put a lorra lorra time into your blog, I am one of the new ones you mention,

    I am my husbands carer so will take a look at it - my husband clings to the hope he doesn't have MND as the consultants cannot make up their minds - hes been under them for practically 2 years now, they keep giving him false hope I fear,

    Sue
    Husband Albert diagnosed PMA Feb 21

    Comment


      #3
      Originally posted by Suefromwakey View Post
      Dear 1 in 300 you have clearly put a lorra lorra time into your blog, I am one of the new ones you mention,

      I am my husbands carer so will take a look at it - my husband clings to the hope he doesn't have MND as the consultants cannot make up their minds - hes been under them for practically 2 years now, they keep giving him false hope I fear,

      Sue
      Sue,

      The most important thing with living with MND is that no one knows tomorrow. No one. Not the well, not the ill. In the time since my diagnosis, many of my friends have died of other things! Healthcare people can often be too overbearing and recommend this or that etc, when you may just want to relax away from formal monitoring etc.

      Live each and every day. Everyone’s progression is often unique.

      I stopped having regular monitoring several years ago when I realised it could be self fulfilling!

      I have seen people die literally when they received the diagnosis. The very act of the words killed them. Others thrive, and other just live in the middle. I recommend the latter!

      If you have any questions just ask.

      but also enjoy the silly parts!

      Oh and one final thing trust the MNDA. If you have any doubts about something, always ask them. They are without doubt probably the best MND Associstion globally.

      Lee

      Comment


        #4
        Brilliant blog well, done Lee

        Comment


          #5
          Are you sure it is just 1 in 300?? When I look at the average 90 year old, I see a huge amount of MND that goes by the name of 'old age'. I guess when cancer is conquered, the scientists will have to move onto MND to earn a living.
          Copyright Graham

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