pbp

  1. F

    Is this good news or fake news.

    After 6 years, my wife, PALS was diagnosed with PBP, She lost her speech and has difficulty swallowing. Progression has been slow as she is having problems with her hands and legs. After seeing a new neuro last month she thinks she has PLS, She falls at least once a week and is too stubborn to...
  2. rose

    A post for women with bulbar

    Hi everyone, I was torn as to which forum I should post this in. When I scroll down the PBP Forum, it does not seem super active. It was a toss-up between the PALS forum and this one, so I'm putting it here. If a moderator wants to move it, that is a-okay with me. My blog is mostly about...
  3. M

    A Question

    Hi I am caring for my mother who was diagnosed with PBP in September last year. She has been doing pretty well and still runs around as much as she can cooking and living life as normally as possible. Her speech has continued to deteriorate however and in the last couple of days, she has...
  4. T

    Time frame for "advanced" stage of PBP

    My mother has had speech difficulties for the past 5 years. Over the last year it has gotten progressively worse. We are now unable to understand very much of anything. She can only eat soft or pureed foods. Just got the official diagnosis yesterday that it is PBP and she is in the "advanced"...
  5. Bookay87

    1 year in

    Greetings All, I am a 46 year old Black woman who was diagnosed with Progressive Bulbar Palsy in August 2015. (stressed my race because I haven't ran across many African Americans with this disease and I hope to raise awareness among my race) My symptoms started slowly I noticed a slurr in...
  6. K

    Heartbroken

    Hello, I first posted back in November when my Mother in Law was diagnosed with PBP. It is with great sorrow I report that she passed away today. I didn't post much on here. I'm not that computer savy and kind of old school but I wanted to let you all know I did read this site daily. And I...
  7. K

    I don't think we can handle this

    I'm 27 and I live at home with my parents to help my mom in taking care of my dad. My dad was diagnosed with ALS (with PBP) about 2 years ago I think. Until this week, his progression had seemed to have leveled off. Until this week, he was still getting around in a walker (very slowly) with just...
  8. C

    Why ALS and not PLS?

    My MIL has recently been diagnosed with ALS, symptoms include slurring and difficulty speaking, tongue numbness and fasciculations and twitches in upper arms and one or two fingers, symptoms began in February of this year and have gotten progressively worse. I just wondered if anyone had any...
  9. A

    New to the Club

    Good Evening All, I have been lurking on the forums for a few months now and thought Iwould introduce myself as one of the newer members. I was diagnosed at Mass General ALS clinic on June 3 2015 with PBP. My symptoms started in early Nov 2014 with slurring. For the next 7 months I had blood...
  10. M

    Second opinion

    Well, today we had the second opinion and the specialist confirmed the PBP diagnosis. It is what I expected given the symptoms. Honestly I have no tears left and I feel sort of numb although seeing my partner suffer is unbearably painful. We have a third opinion next week but at this point it...
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