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Thread: Life expectancy of progressive bulbar palsy

  1. #1
    Forum Member
    Join Date
    Jul 2019

    Life expectancy of progressive bulbar palsy

    Hi everyone, my mums just been diagnosed with progressive bulbar palsy after a year of tests, consultant gives her a year life expectancy of 3 years, but after reading this dies but be the case, she as been offered a line to be put in but is it worth it?, I donít want to Pusuade her to have it if she was to pass away shortly after
    Donít really know how to
    Approach it as she as it it in her head that Steven Hawkins has it years and sheís going to be same, would love advice or to speak to someone who as gone through this..😔

  2. #2
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Welcome to the Forum Watty and sorry for your mum's diagnosis - it's a lot to take in.

    No one knows what life expectancy PBP, or any other MND, carries with it and people vary widely in how long they survive with PBP.

    You mentioned it was suggested she get "a line" fitted - is that a feeding tube?

    Having a feeding tube fitted early on should improve her prognosis, as it'll ensure your mum will get enough nutrition and fluids safely if her swallow becomes affected. Does she cough eating or drinking?

    What are her symptoms at the moment?

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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