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    • #13656
      Matt Lafleur

      If you have been diagnosed with FA for a while, what is on piece of advice or encouragement that you would give someone newly diagnosed with FA? What is one thing you wish you’d known early in your diagnosis?

    • #13662

      Depending on your age or maturity level, your identity is ultimately based on your ability (well, a bit deeper than that, but let’s keep this simple). You’re gradually going to lose ability. Permanently. It’s gonna feel like you’re losing your identity. That’s gonna hit you hard and you’re gonna suffer a lot of mental anguish. I did.

      Some newly diagnosed folks adopt the attitude that they’re a victim of circumstances beyond their control and they put life on hold until some other force beyond their control can rescue them (like a cure). Or they develop habits to help them escape their reality. I did that. But this approach only compounds your suffering and stunts your maturity.

      Basically, you have to take control of your identity. Redefine it. Become an adapting machine. Don’t wait for a cure. That’s a trap. Adapt, accomplish, and live despite ataxia.

      • #13663
        Matt Lafleur

        Wow. I can relate to this so much. Feels like I didn’t come to see it this way until much after my diagnosis. It almost seems like you have to experience it to see this as true.

    • #13664

      I think Jonathan said everything I wanted to, but I’ll add that as far as adaptation, specifically- it’s easy to say “I can’t do that.” Sometimes that’s true but sometimes it’s not. When something seems unachievable, reconsider the task in front of you and accomplish it perhaps unconventionally. Different is not wrong. Allow yourself to be proud of anything and everything- things are more difficult for us and therefore worth acknowledging. Push yourself and your perspective.

    • #13667
      Brian Rhodes

      Enjoy each day for what you can do. Today is a great day to be alive.

    • #13668
      Jesus Rodriguez

      Embrace your challenges and live life to the fullest even in your disadvantages.

    • #13669
      Ryan Slade

      I tell everybody to start working and eating right. Ataxia is so much easier to deal with, when you aren’t fighting another struggle with your weight!

      Also if you are active before…Ive found it a lot easier to find motivations to still be active.

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