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Truth be told

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    Truth be told

    I'm just not used to and I'm a little uncomfortable with the level of attention I'm getting and saddened by the extreme level I got to before anyone actually listened. I am not ungrateful really I'm just shocked.
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    Ever get one of those days when you just can't say anything right?
    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
      Matthew I’ve no idea what you are on about but it’s just so good to have you back on here.

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        #4
        Love ya mate 😘😘
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        ​

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          #5
          Its just so good to hear from you Matthew x πŸ€—

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            #6
            I give up. I don't like being tortured. I will kill myself if it goes on.
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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            • Plan to leave as soon as possible. Hospitals are not geared up for people like us. It's counter intuitive but I made the correct decision when I was being pressured, almost bullied into going in hospital when I had covid.

              I decided that I would rather die at home.

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                #8
                Graham
                you had covid? When? Are you ok now?
                Love and hugs
                Denise xxxx
                when i can think of something profound i will update this.

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                • With close contact with 9 carers in Manchester, it seemed inevitable. First time was in last February and then again in November. First time I had persistent pneumonia and the second time was vomiting and pneumonia but the antibiotics worked eventually. I am fine now. xxxxxxxx hug-hug-HUG.

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                    #10
                    Oh graham and you never said anything. I remember you saying there were a lot of sick people around you but I never thought you had that. Twice well you are a glutton for punishment. Have you had a vaccination? Can you get it again? Now we have to fear the Brazilian version 😐 would have thought after 2 lots you would be immune.
                    lots of love
                    Denise xxx
                    when i can think of something profound i will update this.

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                      #11
                      Don't worry about having MCND because Covoid is more dangerous to you. πŸ€”
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                        #12
                        MND not MCND
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                          #13
                          I was just going to look up mcnd! It wasn't that I was saying one was worse than the other but graham had both and twice. My caring nature would have wanted to say nice caring things. All he did was send nutty YouTube vids. 😊
                          when i can think of something profound i will update this.

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                            #14
                            Matthew how's it going? Home today?
                            Denise xxx
                            when i can think of something profound i will update this.

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                              #15
                              See other posts I don't want to have to write it again.
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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