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Nearing the End

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    #1

    Nearing the End

    Hi

    My wonderful Mam is at the end of her battle with this hideous disease. She has been asleep now for 6 days, is on her NIV 24/7 and no communication. She has a syringe driver full of morphene and modazalam which has been increased regularly. Our specialist MND nurse and the consultant cannot believe she is still with us. She is made of strong stuff. It’s torture for us seeing her in this state and are hoping it will end for her soon (she would have hated this).
    Lesley xx
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    #2
    I'm sorry to hear about this, Lesley.

    I'll just say that it's unusual for NIV to still be used once midazolam and morphine are being administered through a syringe driver.

    Glad to hear your beloved Mam is not in any distress.

    Wishing you much strength over the coming days.

    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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      #3
      Thanks for your kind words Ellie. Is that right about the NIV??

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        #4
        This is an extract from the MNDA's 'End of Life' info sheet:

        For people using ventilation, the palliative
        care team will be able to offer advice about
        when it might be best to discontinue its use.
        ​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
          You're in my thoughts and prayers
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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            #6
            My thoughts are with you and your family xxx

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              #7
              Thank you Matthew, Jane & Ellie xx

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                #8
                My love to all of you.
                a big hug and I will be thinking of you.
                Denise xxx
                when i can think of something profound i will update this.

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                  #9
                  Sending love to you and your family, Lesley. Heather x
                  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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                    #10
                    Wishing you and your family all the best. My thoughts are with you all.

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