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    • #18695

      It always seems like a difficult situation when I describe exactly what FA is when other people ask me. I feel like there are many complex answers that can go into further detail. Over the years, my go-to response is simple– I have a neuromuscular disorder where my speech, balance, and walking are affected over time.

      How would you describe FA to someone who has no idea what it even is?

    • #18697
      Katie Griffith
      Keymaster

      I usually say it is a neuromuscular disease  that affects my son’s speech and balance, and if no treatment is found, then he will lose his ability to walk over time.

    • #18698
      Karina Jeronimides
      Participant

      when you have to describe FA with marbles in your mouth “neuromuscular” is too long of a word. your description is too long.   most importantly, it’s not really worth explaining it to others as they usually respond with such pity and sorrow, that my spirit is crushed and i only think of the negatives in my life.  the fact is, i’m doing lots of great things, and words that depress me make it hard to navigate through a life that is already riddled with physical issues.  we should talk about the things we can do, not our limitations. labeling ourselves is just limiting, and every fa case is so different.  if it’s a scientist, the conversation can be very exciting [my PT who has a doctorate thinks I’m a total bad ass], but otherwise, ugh…

      • #18703

        I like your idea of saying something positive and not focusing on our limitations. There is still so mchh we can do, even it has to be done a different way.

    • #18699
      Karina Jeronimides
      Participant

      when i could still walk, i would say that i’m a Wheeble Wable that does not fall down”  I even put two Wheebles on my wedding cake.

       

    • #18700
      Christina D
      Participant

      I used to tell people I was a Wheeble too!

      Or having FA was like playing the game where you had to spin around with a bat/broom touching your forehead, stand up and walk straight. It’s fun to watch but not to live with.

    • #18704
      Katie Griffith
      Keymaster

      Love hearing y’all’s perspectives!

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