Meet Frankie Perazzola!
Hey, how are ya?!
My next guest blogger is an extraordinary person and a fellow FA-fighter, Frankie Perazzola. Frankie was diagnosed with FA months after graduating from college at Arizona State University. Frankie works tirelessly to spread awareness about FA, and she motivates me, and others with FA, to strive for greatness.
She currently lives in California and serves as an ambassador for FARA, a columnist at friedreichsataxianews.com, and is in the process of getting a personal training certificate. She runs her own fitness page too, called Fighting FA. It’s my honor to introduce Frankie Perazzola to you.
Meet Frankie Perazzola!
I was diagnosed at the age of 22 months after graduating from college. At the time, I was training for a career in sales and marketing for a professional sports organization. It took me a long time to realize that what I had been preparing for during the four years I was in school was not going to be a reality. Not the fact I wouldn’t be able to do the job, but I underestimated the impact of accepting my new life with a neuromuscular disease. The diagnosis itself offered a lot of relief because I finally had an answer to a question I had been asking for years. Simultaneously, I felt my world was ending when I heard the words “no cure.”
Learning to live with FA is extremely difficult. It’s forever changing, and I have to learn how to adapt to the progression. I mainly use a walker for everyday use. For long distances or when I go out for longer periods of time is when I use my wheelchair. Since I mostly walk, it’s a bit easier to spot my progression or when things get worse because it is now so apparent with my body. For example, I can tell when my legs are generally getting weaker based on my ability to accomplish my everyday movement, i.e., walking up to my back stars and how long I can stand at the grocery store.
Although living with FA is difficult, I have learned it’s manageable for me. With an understanding that I was diagnosed later in life and I won’t have the same experience as others with FA, I’ve been able to meet Franki Perazzola and figure out things that work for me at the moment. Because of FA, I’ve also met the most incredible people. The Friedreich Ataxia Research Alliance (FARA) has been the ultimate resource. To meet others with FA played more of an impact than I thought. They are great for introducing everyone to the FA realm and great to be involved with too.
Currently, I am working on getting a personal training certificate. I want to be able to help the disabled and elderly communities. Lockdown showed me that there wasn’t much to offer for us. I signed up two months ago because I needed a healthy distraction. I’d love to give others the tools and knowledge to help manage their bodies. I hope to gain as much knowledge as possible and then solely focus on the FA community.
One Love, Joey and Frankie