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    RIG tube

    Going to have a RIG fitted tomorrow. Wish me luck ! 🥴 love Lizzie x

    #2
    Best of the best and don't worry it's a breeze.🙂x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #3
      Good Luck Lizzie. Everything crossed for you x 🤞

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        #4
        Oh Lizzie, that's great.

        Hope everything goes smoothly and wishing you a speedy recovery.

        Let us know how it went.

        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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          #5
          Thanks all for your encouraging words. I’m sure it will make life a whole lot easier. Don’t much fancy the tube up my nose while they do it but hopefully they’ll give me some happy meds!
          Love, Lizzie🤪

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            #6
            When I had mine they sedated me. I remember being asked to turn over then I was back in my room. 😃x
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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              #7
              oh thinking of you. lots of love and hugs
              denise xxx
              when i can think of something profound i will update this.

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                #8
                Wonder how Lizzie is getting on
                when i can think of something profound i will update this.

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                  #9
                  Well Denise, it hasn’t happened!! It seems the hospital are struggling with beds so I came low down the list. They hadn’t given me the Covid advice/ test and the ward sister hadn’t read my notes so didn’t know I have MND. I was so upset as it was supposed to be a planned admission. I now have to wait for it to be rescheduled 😩 love Lizzie x

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                    #10
                    Oh Lizzie, I'm gutted for you 😩

                    Hopefully you won't have to wait long for the next slot (don't let them forget about you!!)

                    Big hug to you.

                    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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                      #11
                      Oh Lizzie, so sorry about your RIG being postponed. It must be so hard to psych yourself up for this and be in hospital only for it to be rescheduled.

                      I really hope it happens soon,
                      love and hugs to you,
                      Debbie x

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                        #12
                        Very sorry too but I have to tell you that the experience I have had of Hospital is that awareness of our condition is minimal among nurses and doctors. I had to tell everyone. ☹️😉😊x
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                          #13
                          Thanks all for your supportive words. I tend to agree with you Matthew that our plight is so misunderstood and certainly doesn’t attract the empathy it deserves . Lizzie x

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                            #14
                            oh no. oh lizzie how horrible. though saying that we thought that stephen was having his on wednesday only to realise it was just a discussion about the procedure. so we are going back in 2 weeks time. so its like going through the whole worry thing again. the stress levels are so terrible.
                            denise
                            xxx
                            when i can think of something profound i will update this.

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                              #15
                              There is nothing to fear except fear itself. 😉x
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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