Name: Túlio Fernandes Apolonio
Where do you call home? I live in São Paulo City, Brazil
Education: I went to law school and now I am doing a post-grad in Digital Law.
Who do you live with? I am married, live with my wife and have no children.
What's typical day for you? My routine is going to work everyday and going to the gym after I finish working.
How long have you known you are living with FA? I started noticing symptoms at age 25 and was diagnosed in 2018 at age 37 through a genetic test carried out by the Hospital das Clínicas, in Sao Paulo city.
Are there others in your family with FA? No one else in my family has FA.
Describe your transition from walking to wheelchair/walker. I can still walk and am independent in most of my activities. My main adaptation is to have to slow down my pace and have a more rhythmic walk. I also need to use my hands to support myself on the walls most of the time.
What do you like to do to stay active and what type of exercises work for you to stay strong? I do weight training 3-4 times a week and Pilates twice a week. The frequency depends on my level of fatigue.
Do you have any hobbies or special interests? I enjoy listening to music and watching movies and TV series.
What is a good trick to make daily life easier? I consider the best tricks are to remain calm and in a good mood in the face of the difficulties that FA gives me on a daily basis. It's also important to have a lot of patience with people who don't know about FA, who think I'm drunk or sick.
When FA gets you down, what do you think/do to feel better? I share my fears with friends and take examples of resilience and optimism from acquaintances who have FA.
What is one way living with FA has POSITIVELY affected your life? It taught me to have more empathy for other people’s problems, not judge anyone by appearances, and value life more.
What is a favorite motivational quote of yours? “Everything goes by”, as said by the spiritist medium Chico Xavier.
What is a piece of advice that someone with FA has given you that encourages and inspires you? The same thing I learned from all the FA friends I've ever met: resilience and hope.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Life goes on and we must live the best way we can with what we have today.
What's the first thing you want to do when a treatment/cure is discovered? I want to dance again and learn to skate.
"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? This sentence motivates me to face everything and everyone daily, making me get up whenever I fall, physically or emotionally.
Tell us a little more about you... I am a good-humored person, full of dreams and goals to achieve. There are days when I lose connection with these characteristics, but after doing a little meditation, I get over it and move on. I keep fightingFA, getting inspired by other FA’ers (or “fredericos”, as we call FA patients in Portuguese) and trying to inspire others with my posts on Instagram doing Pilates or working out.