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Stages of MND

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    #16
    MND is Stage 4, incurable and terminal.

    That is why the ALSFRS is used for more information.

    Matt's comments are pretty accurate and some of us do Stage 4 well, unlike this gentleman...

    https://www.youtube.com/watch?v=3WHSkbM9zAU
    Copyright Graham

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      #17
      Linda
      I know nothing about the stages but I'd go with you're as old as you feel and as ill as you feel but don't let them make you feel worse. It doesn't do you any good so just ignore them and get on with living.
      love and hugs
      Denise xxx
      when i can think of something profound i will update this.

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        #18
        These people who like to sound knowledgeable with medical categories and terminology. Mnd sounds the least likely disease to usefully fit into stages from what I can gather xx
        Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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          #19
          For clarity, these are the 5 Stages of ALS and, as it's a clinical determination, we do fit into a 'stage'. It's so important to stress that, in our daily lives any stage, ALSFRS score, how long we are from diagnosis etc. etc. is utterly irrelevant, it's all to do with how we're feeling today. xx



          5 Stages of ALS (3).png.jpg
          ​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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            #20
            Thanks Ellie good point well madeπŸ˜˜πŸ‘πŸ»
            Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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              #21
              Then I'm definitely level five init 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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