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  1. Kristina1

    bulbar ALS

    I was dx bulbar onset ALS in 3/2017. Limb involvement occurred within weeks in my hand. Presently (3.5 yrs later) my speech is indecipherable to most, trouble swallowing,severely limited use of hands and arms. I cannot walk and use PWC. I can stand for few secs with support.
  2. Kristina1

    Tolieting Issues NEED help!

    hi all, long time no chat :) I was in the hospital recently and they used purewick with me. it was nice. couldnt find a price online for home use. for BM they made me use bedpan. at fist i was mortified but when i got over it, itt was easy and efficient.
  3. Kristina1

    Amylyx Educational Summit in Advance of Releasing Data

    Nikki summarized it well. It was informational about the clinical trial, the drug, the company, and update/next steps. And yes, it was positive. Publication will be out in a matter of days or weeks which is exciting :)
  4. Kristina1

    Amylyx Educational Summit in Advance of Releasing Data

    Yes, it was recorded! They are processing it and will post it soon. I'll put up a link when they do.
  5. Kristina1

    Amylyx Educational Summit in Advance of Releasing Data

    Thank you! And thanks for tuning in!
  6. Kristina1

    Amylyx Educational Summit in Advance of Releasing Data

    Hi guys! Amylyx is hosting a virtual educational summit for PALS and CALS tomorrow 8/20 from 6-8pm. I will be speaking about my experience as a participant in the study and an ongoing partcipant in the open label extension phase. If you'd like to join us you can register here: Online Event
  7. Kristina1

    Intro

    Welcome. I'm so sorry to hear about your diagnosis.
  8. Kristina1

    How to Gain Weight

    Has she thought about a feeding tube? They are very easy and low maintenance.
  9. Kristina1

    leg pain

    Hi Kim, actually no, it doesn't hurt unless they push too far. They pay attention to the feedback. So they push until they meet resistance and then hold for a few beats before releasing and repeating. After several reps they will have moved the line back by a hard earned 1/4 inch or so. It...
  10. Kristina1

    leg pain

    I had no pain when first diagnosed besides muscle cramps. I did have mild spasticity on exam, but at that point in time it wasn't painful. As I progressed I developed painful spasticity that has gotten worse as I progress. I don't know if this is typical. With spasticity my legs would go rigid...
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