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Just got to love MND

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    Just got to love MND

    As things progress I just wondered if anyone else has what I got. I feel a burp traveling up but it doesn't come out, it just sits in my throat until I swallow. It is the strangest feeling. 😁x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    Reflux?

    ​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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      #3
      Nope just a plain burp after drinking 😁x
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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        #4
        Not got that yet, but I get a sort of mouth/throat spasm which feels like a swallow that rebounds back into my mouth propelling saliva out of my lips. What fun we have. πŸ™„
        Each day is made easier with a bit of humour.

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          #5
          GaryM You paint such an attractive picture of yourself - get the Mrs to photo you, complete projectile drool and oozy stoma, then you can be the MND Poster Boy πŸ˜‚πŸ˜‚ No offence intended!

          Actually, I'll join you showing my wonky feet and skeletal upper body, whilst 'standing up' up in my hoist. MND - the reality...

          Love Ellie.
          ​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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            #6
            Maybe we could have a photo gallery of our MND worst/ best bits .🀣🀣🀣

            When I read the title of the thread I just knew you had started it Matthew x

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              #7
              There is only one 'best bit' - US of course, the Motley Crew 😍
              ​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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                #8
                Girls calm down you really don't to see this body 😁x
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                  #9
                  Wow ! Matthew, I get that exact immobile burp feeling a lot. It was amongst my first bulbar symptoms It’s a very odd feeling isn’t it? I hadn’t heard of anyone else having it before.πŸ₯΄

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                    #10
                    I just say what I think, luckily I have time to think about it. Three ex's don't forget. 😁x
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                      #11
                      I've probably mentioned this before but the worst is when I get stomach contents in the back of my throat. πŸ˜‰πŸ˜x
                      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
                        I don't get that yet Matthew, but I do get a kind of spasm in my throat which is quite painful for a few seconds until it subsides, though not had the saliva spurt yet Gary! x
                        Diagnosed July 2020, ALS bulbar onset.

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