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Thread: Reassurance (or honesty) needed! Warning: potentially sensitive discussion.

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  1. #1
    Forum Member
    Join Date
    Sep 2019

    Reassurance (or honesty) needed! Warning: potentially sensitive discussion.

    Hi all

    I was diagnosed this August and seem to have had a fairly rapid deterioration over recent months. My very first symptoms started late last year but progression really started around April, I would say - slowly at first but gaining more momentum recently. I can now barely walk, even aided, have virtually completely lost my speech, have trouble lifting both arms, some trouble chewing and swallowing and my neck is starting to struggle to hold my head up. On the plus side, Iím still eating relatively normally (albeit with care), havenít lost weight and my oxygen levels are good.

    What I want to know is...does all this mean I potentially donít have terribly long, or can/do people sometimes live for years in this state (& worse)? Iím starting to work myself up into thinking that as itís now progressing quickly, the prognosis is not good. On Friday I turn 51 and I just keep thinking how my life has changed since I turned 50- and whether Iíll get to see 52...

    I know there are no definitive answers to this one. Iím just hoping there are plenty of examples out there that some quality of life can continue like this for a good while yet!?! But I do want the truth.

    A hard one I appreciate, but I really want to know, and donít know who else I can share these thoughts with.

    Thanks all xx

    Last edited by SarahWP; 31st October 2019 at 07:39.

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