Fighting FA - a Column by Frankie Perazzola

Protein is necessary for the human body to stay healthy and function properly, regardless of whether you work out or not. According to the American Council on Exercise, “Protein is the principal component of every cell in the body and is needed to build…

Religion and spirituality have always been tricky subjects for me. I was raised in a traditional Italian and Catholic household where baptisms, communions, confirmations, and the rest of the sacraments were highly celebrated. I was pushed to attend Mass every Sunday and holiday, and to volunteer or serve…

The endless lockdowns and life-altering changes we’ve experienced due to the global health crisis have shown the disabled community that society is capable of becoming accessible. Everyday jobs can be done at home, grocery delivery is prioritized and encouraged, and restaurants and shops are willing to…

Because I’m involved in the disability community on social media, I’ve learned a lot about language and other disabled people’s preferences. Common topics of discussion include both ableism and internalized ableism. Both of these “-isms” are extremely important to address within the disability…

It’s hard to believe this is the last column I’ll be writing in 2020. I am looking forward to somewhat of a fresh start with the new year coming in. No matter the circumstances, I truly enjoy Christmastime with my family. However, that may not…

With the holidays approaching, it is a popular time to look back on the year and reflect on life. It’s safe to say that we all have had one of the strangest years ever. No matter where you stand on the political or religious spectrum, the world…

I tend to focus on self-reflection and growth in my column, “Fighting FA.” I love having the ability to look at previous columns and pinpoint exactly where my headspace was at the time. Doing this validates a generous amount of growth, gently nudges self-reflection, and offers…

Because I’m transparent about my life journey with Friedreich’s ataxia (FA), questions about my approach to fitness are inevitable. Some may think it’s ego-driven and naive to think that fitness is an answer to dealing with a neuromuscular disease. But people just have trouble fully understanding what…

This September, I participated in a social media campaign to raise awareness for ataxia. Those who participated had to post a photo every day that corresponded with the prompts on the graphic below. The graphic was created by a woman named Amanda. She has…

Oh, selfies! What a wonderful way to waste time, learn the best facial angles, and finally get a good picture of ourselves, because the ones we are tagged in usually misrepresent us completely. Ha-ha. As I stood in front of the mirror the…

I recently adopted a mixed beagle and Chihuahua named Albert. He is 10 years old, and I got him from a local animal care organization. During the process of adopting him, I was excited and looked forward to my new position as a dog mom.

One of most difficult aspects of Friedreich’s ataxia (FA) is thinking I don’t deserve any good that comes my way. Being diagnosed with a progressive illness convinced my brain that I would never have the life I imagined. It wouldn’t be worth it to figure things out…

I was recently interviewed about my diagnostic journey. I am used to answering a lot of the questions but one stuck with me. It was a very simple ask: “Without mentioning Friedreich’s ataxia (FA), what do you do?” The thing is, almost every aspect of my life…

In my previous column, I announced I was becoming a certified personal trainer. I understand there may be curiosity around my decision. I also want to clarify things for future clients and for those who are curious about my approach. I hope to address some of those questions and…

One of the biggest lessons I have learned this year is to sit back and genuinely listen. I was usually the type to insert myself in situations that didn’t apply to me or just wait for the next opportunity to speak. I have realized that is detrimental to…

May is an exciting time for the FA community. It’s Friedreich’s Ataxia Awareness Month, a time for all of us who are affected to let our voices be heard! Additionally, May 16 is Friedreich’s Ataxia Awareness Day. Friedreich’s ataxia affects about one…

During this pandemic, one of my most important goals is to keep busy and throw in any available distractions. I need to keep my mind from dwelling in negativity. So many things can shove me into a negative rabbit hole so I’ve had to fight hard to stay…

In times like these, I wish I had superpowers or a magic wand to make everything better. The fear and panic caused by the coronavirus pandemic are taking a toll on me. I’ll admit, I didn’t view it as a serious matter until I went…

Thanks to Friedreich’s ataxia (FA), I have experienced the stress and turmoil of trying to hang on to strained friendships. After my diagnosis, friendships and romantic relationships were put to the test. It took me a long time to identify who was in my corner.

Mental health is a significant yet overlooked aspect of dealing with a chronic illness. While it may be taken into consideration, it’s not often treated with sufficient seriousness. Continual learning and adapting to a new way of living can be stressful. Losing relationships, adjusting…

I have been in many social situations where I have blown it. Almost every encounter, actually. I plan to relay a certain message, and my words come out differently than I’d intended. It’s ironic that I majored in communication but lack the skills to express myself.

I can’t believe it’s February 2020! This is an important month for the rare disease community as we unite and acknowledge one another’s illnesses. Rare Disease Day falls on the last day of February — a rare month with its fewer days. It’s even rarer this time because 2020…

The world is still in shock over the loss of NBA legend Kobe Bryant. A heaviness lingers over Los Angeles, along with an overwhelming sense of, “What do we do now?” I can’t believe I am writing this column. I won’t talk about Kobe’s accolades or his accomplishments as…

We’ve all heard about the monsters under the bed that keep us up at night. Well, the monsters weren’t to blame. I was having awful leg cramps. I would wake up from a deep sleep in excruciating pain. My middle toes felt as if someone was…

Being a writer without the ability to write is a conundrum. I think about it often, especially when I write these columns. I never realized how much I wrote until that ability was slowly taken away. When I was younger, I loved to write. I would use every colored…

We made it! A new decade is here, and the atmosphere seems a little fresher. For now, at least. I hope everyone enjoyed their holidays and spent them however you wanted to, with or without family. My previous columns about the new year consisted of sharing my plans for…

It’s the end of a decade and the beginning of a new year. At this time, many of us make New Year’s resolutions and set our goals for the year ahead. In the past, I have made resolutions that weren’t realistic or achievable; whether it was losing a lot…

It has always been a challenge for me to remain in the present. I frequently reminisce about the past and think about what I should have done. Does your brain remind you of your embarrassing moments when you are about to fall asleep? Same with…

My anxiety kicks in when I go out. Between choosing an assistive device, worrying about the accessibility of the venue, and anticipating stares from others, it can be overwhelming. The anxiety is so debilitating at times that I simply choose to stay home. I didn’t…

My family and I recently took an incredible vacation to our motherland, Italy. We have talked about taking this trip since I was a kid, but never had the time or the money. Now that my parents are retired and my brother and I are older, the timing…

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…

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…

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…

When I was in college, my goal was to work in professional sports in marketing or sales. Before I graduated, I worked in ticket sales for the Phoenix Suns basketball team and loved the path my career was taking. I had my foot in the door at the NBA…

I love to cook. From an early age, I spent time in the kitchen helping or annoying my Nonna. Cooking is therapeutic, and I find enjoyment in the process. It feels good to create something for someone else to enjoy. Cooking requires patience, fun, and love, and it…

Lately, I’ve been finding it difficult to go to my local gym. It’s accessible, so that’s not the problem. The issue is that I’ve stopped enjoying the experience. While I love to exercise and the gym scene in general, navigating this fitness club, one of a large chain,…

This week, I wanted to do something a little different. As an FA patient diagnosed only four years ago and with no sign of a heart condition yet, I understand that not too many people can relate to my views on working out. My friend Joey has a…

“Weren’t you just in a wheelchair? Why are you using a walker now? Are you getting better? If you can walk, why do you even have a wheelchair?” I love when genuinely curious people ask me questions. With multiple assistive devices and an invisible illness, I have learned…

To parents with newly diagnosed children and those who have been in this fight for a while: I salute you. As an adult patient, I am not coming from a place of complete understanding because I do not have a child with FA. However, I do…

Almost every day, I have a conversation with myself about the level of my own vulnerability on the internet. Is this comment too much? Should I discuss this topic? Does anyone care? I tend to get lost in an abyss of self-doubt and insecurity when sharing my life…

By the time you read this column, I hope to be celebrating a win for the Los Angeles Rams over the Dallas Cowboys — my favorite football team will move one step closer to the Super Bowl. Even if they lose the game, the team has had an…

Let the New Year’s resolutions and “fresh start” cliches pour in to overwhelm timelines and news feeds. Ringing in the new year has always been a favorite time of mine — the energy shifts. Many people, including me, desire to change and become “better.” When thinking about resolutions, I…

  With more than 7,000 known rare diseases in the world, it’s impossible to have all humans acknowledge and learn about every single one. No matter how life-threatening, debilitating, or serious a disease is, the hard truth is that if it doesn’t affect a large group of…