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

    Member
    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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