Answering the Questions Friends Ask Most Often About My Friedreich’s Ataxia

Answering the Questions Friends Ask Most Often About My Friedreich’s Ataxia

Over the past couple of weeks, I’ve had some good conversations with FAers and others about life. I was asked similar questions in each conversation, so I figured those topics must cross other people’s minds. Perhaps my answers can give you insight into my personality and who I am becoming.

“Do you ever get tired of being positive?”

The quick answer is yes, but the honest answer is that I don’t even notice or try anymore. My whole mindset and personality changed once I acknowledged how fortunate I am to have my life. It’s also helpful to continually learn different ways to accept my illness for what it is.

Admittedly, on my low days, it’s hard to see the bright side, but I always manage to bounce back. The daily physical reminders that my body is giving up on me make me want to give up, but I constantly remind myself of all the good happening in my life. Some days, I have to push harder for that outlook, but the process is becoming easier.

“How do you work out so much with fatigue?”

If not for pre-workout, I probably would not be able to push as hard as I do. Honestly, I hate needing to depend on something to make it to the gym or physical therapy, but it’s necessary since physical activity is important to stalling progression. I have learned to make working out a priority and simply focus on that.

My advice is to find an energy boost that doesn’t include a bunch of chemicals and has healthy doses of caffeine. Sugary energy drinks and some pre-workout powders are filled with junk your body doesn’t need. If you have any other questions on supplements or vitamins I take, add a comment below or send me an email!

“What made you decide to publicly share your journey with FA?”

Let’s just get this out of the way: I shared everything before my diagnosis, but it was never anything of substance or meaning. I was young, and like most people my age, I thought everyone genuinely cared about what I was doing during the day. Ha!

One of my biggest pushes to go public with my journey was simply to beat everyone to the punch. Coming from such a small and connected town, I knew it was only a matter of time before people started talking about what I would be dealing with. Since I, too, was confused about FA and knew I would physically and visibly decline, I wanted to be able to answer any question about FA that came my way.

However, the biggest reason I share so much is that I want to help kids who have FA. I wasn’t diagnosed with FA until I was 22 and I am barely dealing with my physical decline right now. Meeting children who go through what I face as an adult is a gut-punch reality check. I feel like my troubles don’t matter, and all I want to do is make things better for those kids and their families. I want those kids to know they are not alone, to know it’s OK to be different and to need help, to accept who they are despite FA, and never to be embarrassed about using a walker or wheelchair.

The only way I can help those kids is by sharing my truth and being a reference to them.

Comment below or email me with any questions or comments! Also, follow me on Instagram and Facebook to keep up with me.

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Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

4 comments

  1. wonderful article <3 so insightful! For me, my workouts are more of a need, like a healthy addiction. I need to get some exercise or else I'm sluggish throughout the day and not happy with myself. Thank you for sharing! Need you pre-workout favorites!!

  2. Daniela Dawson says:

    Thank you for always being so honest and down to earth about your journey. My son has FA. The first symptoms began at age 4. He is now 12 and fully dependent on his wheelchair, which he absolutely loves! To him it represents freedom to move around. Despite being fully aware of his rapid decline, he has an incredible sense of humour and an unwavering faith that all will be well. One of his favourite sentences starts with “When I walk again….”
    We live in South Africa and there aren’t many FAers here; maybe 20 in the entire country… so it’s a lonely journey for us most of the time.
    Again, Thanks for sharing!

    • Frankie Perazzola says:

      Thats awesome to hear how positive your son is. Thank you for reading! Ill shoot you an email soon so we can discuss finding other FA families around you You are not alone.

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