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    Medical bulletin

    I’m very aware that, compared to what many friends here bravely cope with, I have little to be concerned about yet.

    I had a routine four monthly visit to my MND clinic at the John Radcliffe hospital in Oxford (Prof Talbot) today. It didn’t go too badly on the MND front.

    My main problem at the moment is my left shoulder. After several months of physio and a very expensive steroid injection, it had nearly cleared up and I was looking forward to a pain free Christmas. Then a few days ago I fell – more of a collapse really, my legs just buckled under me. Instinctively, I shot out my only free hand and took the full force of my body weight through, you’ve guessed it, my left shoulder!

    The pain was excruciating. I thought I’d broken or torn something. That’s probably not the case, but I’m back on large doses of Ibuprofen and paracetamol and an even more immobile daily routine to make life bearable. I can’t use my walker for more than a few steps because I can’t lean on it.

    The MND is progressing steadily but slowly. My right leg is following the left and now losing strength and muscle mass. My upper body seems fine still. Pleasingly, FVC has held up over the last six months at 88% and 3.2 litres. But I have at last made a start on voice banking.

    They collected several blood samples and other information as part of the various research projects I’m involved in.

    Diagnosed April 2017

    Oh Doug, that's awful to hear and just when that shoulder was almost there

    Would you not get an X-ray/MRI to be on the safe side? If you started physio on the shoulder and you don't know exactly what is wrong, you may makes it worse.

    That's good news re lung function. Shame you had to pay for a steroid injection Does the Clinic physio or doctor not do them?

    Take it easy with the walking and at least your right hand can hold a wine or port glass

    Merry Christmas Doug.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user


      Hi Doug

      First things first. Having MND doesn’t mean you’re in a competition to see who is in the worst state. I’m sure you know as well as the rest of us that everybody’s MND journey is different.

      Sorry you had such a nasty fall - you ought to have your left shoulder checked out in case you have broken or torn something. I imagine the pain must be awful if you need both ibuprofen and paracetamol. Perhaps your GP would give you something stronger?

      As for the MND, good news about your FVC but not so good that your right leg is deteriorating.

      You can have a gold star for starting your voice banking - it’s so easy to leave it too late.
      Last edited by Gillette; 16 December 2019, 21:08.

      Trying to keep positive, but not always managing.


        Hi Doug,

        Sorry to hear that you have had a fall and are now in pain. I hope you feel more comfortable for the big day next week and when I raise a glass or two I will be wishing my forum friends a peaceful day.

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


          Hi Doug,
          So sorry to hear about your nasty fall. Sounds really painful. Look after yourself.