Scheduling my own doctors’ appointments was one of the biggest indications I was getting older. I remember how I felt when I first did it about age 18. I hung up the phone feeling so grown. From then on, I had no problem scheduling all my appointments. It gave me…
Fighting FA - a Column by Frankie Perazzola
To my dearest Lucia, By the time you are able to read and understand this, I am not sure what Friedreich’s ataxia (FA) will have done to my body, so this is kind of my “insurance policy” of life lessons and memories I want to offer you in 2019.
As a 27-year-old, I enjoy going out on the town with a couple of girlfriends. However, going out now takes a lot more effort than when I turned 21. When planning a night out, I assess my level of fatigue and decide which assistive device I need to…
I have been going back and forth about this column. But I think it’s important to show my readers and myself that I am being authentic, so here we go. Self-accountability is an everlasting process. Like cleaning out the junk drawer in the house, it can’t just be a…
Columns
Birthdays Stir Mixed Emotions
My 27th birthday is this week and I don’t know how to feel about it. I am definitely not one of those people who dislikes getting older — yet. Until I was diagnosed, I always looked forward to birthdays. Now they are markers of my disease’s progression. I thought time would…
It was a beautiful, sunny day in Southern California, and I was out with my mom and my grandma. We usually get lunch in town and hang out for a while afterward. Shopping, running errands, or visiting someone at their house — whatever we do, I love our time together.
In 2019, the world seems to be more sensitive than ever. We push this narrative on social media to be positive and be ourselves, but then we’re immediately judged when we are. Why would I “dance like no one’s watching” when everyone is observing and criticizing? No matter how cautious…
I’ve had the same core group of friends for almost 10 years. We’ve been through many milestones together: First cars, proms, parties, boys, and graduation are some of the experiences we’ve shared. We’ve talked about moving in together. I’ve thought about how cool and fun it would be to share…
For those of you who continue reading my columns, thank you for sticking with me. To those of you who are new, welcome to “Fighting FA.” I’m glad to have you here and appreciate the time you take to read my writing. I know that…
When I have an initial conversation with someone about my FA diagnosis, the person almost always asks, “Are you in pain?” At first, I didn’t experience any pain whatsoever. Later, I started having restless legs and sporadic, debilitating foot cramps after the days I pushed a little too…
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