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    #16
    It might take baby steps Denise - the seed has been planted, who knows what may happen over time x
    ​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
    .

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      #17
      Of course this helps Broostine, great to hear all experiences and thoughts x

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        #18
        stephen has had a chest x-ray and ecg and his peg should go ahead in 2 weeks. its a bit nerve wracking especially as we thought he was going to have it done on wednesday but this was time for a chat about the procedure. have to say that didn't really help much infact i nearly changed my mind but stephen seemed ok about it. its like when i think we should go do something he comes up with the opposite - i need to change my way of thinking
        when i can think of something profound i will update this.

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          #19
          denise It's totally natural to be worried about what's expected of you in potentially having to look after Stephen's feeding tube, and all the feeding etc - it's all unknown to you and must be daunting.

          Take a look through this site, hopefully it'll help and of course you can ask us anything: https://mytube.mymnd.org.uk/

          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
          .

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            #20
            What I don't know about feeding tubes isn't worth knowing. It's the only thing I'm good at these days! 😊x
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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              #21
              It's the whole responsibility thing. It's daunting. It's scary. I try to come up with conversations on what we should think about and all I get is: I suppose so, if you want, whatever you think. Then when I agreed to him having the peg he revolted and now he's changed his mind and going ahead with it. I've told him at this rate I might run away. 😉
              when i can think of something profound i will update this.

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