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Life expectancy of progressive bulbar palsy

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    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 don’t want to Pusuade her to have it if she was to pass away shortly after
    Don’t really know how to
    Approach it as she as it it in her head that Steven Hawkins has it years and she’s going to be same, would love advice or to speak to someone who as gone through this..😔

    #2
    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 Spinal (hand) Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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      #3
      Hi
      I'm so sorry for your mum's diagnosis. My mum was diagnosed with PBP in November last year, and is now in the end stages. She is no longer able to speak or swallow at all, she has a feeding tube in place, and is on a breathing assist machine. It has progressed very quickly in the last 6 months particularly. Life expectancy is typically between 1 and 3 years from onset of symptoms. Please feel free to pm me if you need to talk. X

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        #4
        Welcome to the Forum KJ.

        Sorry to hear about your mum's diagnosis and subsequent progression.

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

        Comment


          #5
          Hi Watty. Welcome to our helpful and friendly forums. I'm sorry about your mums recent diagnosis. Good luck for her up and coming procedure. As already stated everybody's progression and clutch of symptoms are different. So don't try to dissuade her from any interventions that may make her more comfortable and keep her as long as possible. It's your mums decision about whether or not to accept any treatments. That's a difficult discussion to have and a difficult decision for her.

          Take care and I hope that you are able to create many more happy memories with your mum. Lynne
          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
          I'm staying positive and taking each day as it comes.

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            #6
            Sorry about your mums decline KJmc. Lynne
            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
            I'm staying positive and taking each day as it comes.

            Comment


              #7
              I was diagnosed with PBP in 2007 but as can be seen from the responses already, there is absolutely no way anyone can predict how this disease will,progress. It's so sad to read when someone has themselves, or a relative with rapid progression.

              Comment


                #8
                Hi Miranda, I am new and would like to ask you a few questions. Is this a private message ?

                Comment


                  #9
                  Good morning,

                  For private messaging go to the top of the page in the forum and choose that option (private messages) to private message that particular individual using their username?
                  Warmly


                  Andy

                  ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                  "Things turn out the best for people who make the best of the way things turn out"

                  Comment


                    #10
                    Hi Paula,

                    No, everyone can see normal public posts such as the one you made above.

                    You need to have a minimum of 5 posts before you can PM someone.

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

                    Comment


                      #11
                      Thanks for your help .
                      I will introduce myself properly on the forum.
                      I have read over the last couple of months your comments and find you all very inspirational.

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