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Matt's Apology Continued...

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    Matt's Apology Continued...

    Thank you for removing the post Matt, much appreciated. It induced the dreaded 'Red Mist', which you saw when I tried to jog your memory as to what it was all about. Please could you remove post #35 on the 'Music Thread 2'? xx

    PS It isn't just you.

    When you are on your own with MND with no one to turn to and people are robbing you blind, can't even get a SECOND Covid-19 jab, you know society wants you to die.
    Copyright Graham

    #2
    I'm in the same boat pal. I just try not to let it get to me. πŸ˜‰πŸ€—πŸ˜πŸ€˜xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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      #3
      Yes, being extremely vulnerable, bed bound, unable to talk, barely able to type, choking regularly, severe spasticity, regular thick mucus, unhelpful NHS, psychological pressure from the MNDA, people thieving, it can be a little challenging at times over nearly 10 years. xx
      Copyright Graham

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        #4
        Ah but take heart my friend. There's always someone, somewhere, worse off!
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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          #5
          Good morning Graham
          .So sorry you have so much to cope with daily and sounds like very little support.Not sure how you cope alone being bed bound but presume you have Carers.

          I too would feel challenged in your situation.

          Not sure if there’s isn’t any appropriate help for you?In my area there seems to be support via the palliative care team , local hospice and MND volunteers.I also am blessed with a close family, friends and parishioners from the Catholic Church I am part of.Of course it’s hard when speech has gone but hopefully you have a communication aid or app.

          I wonder if you can ever get outdoors for fresh air or for a change of scene.

          Really hope you have a reasonable day Graham
          Best wishes
          ​​​​​​​Mary

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            #6
            Hi Mary, thank you for your kind thoughts. It does get overwhelming at times and I should get out more. However I am trapped inside and have been for over 7 years when I finally got released from hospital after 2 years in there. I applied for a social budget as it was originally in my care plan but with austerity cuts, it never happened.

            I find myself to be in a race to get my care app done so I can still run my DP when my MND advances a bit more. It is still progressing tiny bit by bit. Thanks again xx
            Copyright Graham

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