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    Another new introduction

    Greetings all, this is my introdction to you all. I am a 66 year old man, actually I am still 21 but with 45 years experience. I may grow old but shall never grow up.

    About 5 years ago I developed a problem with my walking, my stride was smaller than my brain was wanting it to be. I would just slow down when I was walking. If I rested for ten seconds or so I would be OK but eventually, albeit sporadically, the slowness would come back. After 2 ½ years of numerous MRI scans, CT scans, electrical tests of my brain and limbs, lumber puncture, muscle biopsy, blood tests, x-rays and more they concluded that it is MND. My wife and I were told at the beginning that MND was their suspicion but as there is no test to actually diagnose it and it can only be concluded on a process of elimination.

    At that time my private medical insurers told me to p off. Well they didn’t actually use those words but they increased my insurance premium to £1,600 ………………………… per month. I think that means p off, don’t you? I then went to the NHS who have been absolutely amazing. I have seen numerous consultants and professors and am now seeing on a regular basis three different consultants from the National Neurological Hospital in London. They are just superb.

    My MND is slow progessive. At present it is predominantly presenting itself in my legs which I have virtually lost the use of . I now have to use a walking frame for the few feet that I can walk. If I fall over, which alas I have done a few times, most unusual when you are sober, I cannot get up without assistance. Fortunately I can still drive and my car has been adapted with hand controls. However after 40 years of driving I got my first speeding ticket the day I had the controls fitted. I couldnt remember if I had to push or pull to brake!

    Its a horrible journey we are on, both for the patient and our loved ones. Nevertheless I intend, and as I have seen on the fourm many others as well, to live live to the best of my abilty.

    I look forward to learning from you all and sharing as well.

    I wish you peace and comfort.


    Last edited by richard; 27 August 2020, 12:51.

    Hello and welcome Richard.

    It sounds like you are on a similar path to me, although I’m 8/9 years in and my diagnosis is bulbar so my legs work (just). I can relate to your story and your experience with private health care and our wonderful nhs as I had a similar issue. Your sense of humour and positive approach comes through in your introduction and this will help you through the days when you struggle to cope.

    We have a wealth of experience in our forum family so this is the place to come for advice and support.

    Best wishes.
    I’m going to do this even if it kills me!


      A very warm welcome, Richard.

      I loved your opening paragraph! I’m ten years older, so another decade of experience – mostly questionable. But you were spot on.

      Your positive attitude is worth a pile of pills. If your speech is OK, do consider voice banking.

      All the best
      Diagnosed April 2017


        A warm welcome to the forum from me Richard. Sorry this is a belated message, I missed your original post.

        I am sorry for your diagnosis but glad you have found us as the forum is a good place for friendship and support. I love your sense of humour and positive attitude... it will really help you.

        I was diagnosed in Spring 2018 although I knew MND was suspected. It started in my legs, like you and I have been told it is a slow progression. I first noticed it when I was attempting to teach PE to my class of 6 year olds. When I demonstrated a jump I ended up in a heap on the floor! I now use a power chair full time but my arms are OKish as is my swallow and breathing so I am lucky.

        Be extra careful to avoid falling Richard. I speak from experience of really hurting myself while still trying to walk.

        Take Care,
        Love Debbie x


          Sorry to meet you if you get my meaning mate 😀
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


            A belated welcome Richard to this exclusive club
            As long as there’s golf and beer I’m happy


              Thank you Barry, Doug, Debbie, Matthew and Shaun. I look forward to learning and sharing about this horrible journey we are on. What I do know is we are where we are, and we must make the best of it, not only for us but all those we love.