ALS News Today Forums Forums Living With ALS What have you learned about the “language of ALS”?

  • What have you learned about the “language of ALS”?

    Posted by Dagmar on January 2, 2024 at 1:01 am

    Now that I’m living with ALS, I’ve had to learn brand-new terminology. For example, shortly after I was diagnosed, I was eager to let my neurologist know how well the physical therapist’s home exercise routine was going for me. When the doctor walked into the exam room and asked how I was doing, I smiled broadly and exclaimed, “Great. In fact, I’m progressing!” From the serious look on her face, I immediately realized I had used the wrong choice of words. She informed me that “progressing” is a negative term and is usually used to describe ALS symptoms worsening.

    What new ALS jargon have you had to learn? What for you are the confusing terms?

    Dagmar replied 3 months, 3 weeks ago 1 Member · 1 Reply
  • 1 Reply
  • Dagmar

    January 2, 2024 at 11:19 am

    I am amazed at the volume of abbreviations we have to learn. Such as: FVC, ASLFRS-R, PEG, and even ALS. Although with my slow speech, it would take far too long for me to say the word – – haha. But there are a heck of a lot of medical abbreviations!

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