Name: Andressa Ayres Pelanda
Age: 35 years old
Where do you call home? I live in a seaside city called Pontal do Sul, in the state of Paraná, south of Brazil.
Education: I have a degree in Oceanography and postgraduate in pedagogical yoga and neuro-learning.
Who do you live with? I have lived with my partner for almost four years, and we have a two-year-old daughter.
What is a typical day for you? During the week, I usually spend the mornings playing with my daughter and doing house chores. Twice a week, I go to yoga classes. After lunch, I usually work on organizing and publicizing events and running a Holistic Center (mainly office work). On weekends, I'm either coordinating events (courses, workshops, lectures,etc.), taking care of my daughter, or spending time with the family.
How long have you known you are living with FA? (When and how were you diagnosed?) The first symptoms of FA appeared when I was 17. I started having difficulty with writing and some lack of balance to go down the stairs. My older brother had already been diagnosed with FA and was using a wheelchair. I began to wonder what was happening to me. For two years, I kept in secret what I felt until a college professor noticed that something was wrong with my writing and decided to talk to my mother. That's when my family started thinking that I also had FA. A similar question came out later when I applied for an exchange student program and was asked to present a medical report and explanation of why I wrote with such difficulty. I then did the genetic test and found it out: Friedreich's ataxia.
Are there any others with FA in your family? Yes, my older brother also had FA. His symptoms started when he was 12-13 years old. It took him a long time to be diagnosed. He died of heart failure when he was 31 years old.
Describe your transition from walking to walker/wheelchair. When I was 33 years, it became really hard to walk without support. I always needed someone to hold on to, and at home, I would look for the support of walls and furniture. I realized that I wasn't able to do several things anymore because of this dependency on someone else's support. That's when I decided to buy a 4-wheel walker and brakes. Until then, I was ashamed and reluctant to use any kind of assistance. I thought that this would make me dependent and physically worse day after day. But the walker brought me independence, autonomy, and self-esteem! Today I still use the same walker, and I can call it " my best friend" because we are inseparable ...
What do you like to do to stay active and what type of exercises work for you to stay strong? Yoga is something fundamental to me. It helps me maintain the physical strength needed to fight FA and also keeps my mind in a positive tone (which I believe is fundamental to "hold" the progress of the disease). I also like to ride my tricycle. I also strive to continue doing my routine activities at home.
Do you have any hobbies or special interests? I like to venture out and push boundaries. It is invigorating to join my partner's invitations to sail, reach a waterfall, take a long bike ride, surf, dive, or parachute, or even do a new yoga posture!
What is a good trick to make daily life easier? I like to keep putting things in place after use, so as not to arrive at the end of the day and have a lot of things to do. If I get up to go to the bathroom, I'm already doing things along the way back. I believe that smiling and not having a TV at home make my days a lot lighter too!
When FA gets you down, what do you think/do to feel better? I listen to yoga mantras, I meditate, I play with my daughter, I ask my companion to cuddle me, or I ask my mother to hold me in her lap. When I fall, I try to get up really fast so that no one can see and laugh, but sometimes I let sadness reign for a few minutes, and then it goes away!
What is one way living with FA has POSITIVELY affected your life? FA made me more humble, it taught me to be grateful and appreciate the little things in life and, above all, to never leave until tomorrow what I can do today.
What is your favorite motivational quote? "The obstacles life presents to us are never greater than our ability to face them" P. R. Sarkar.
What advice did someone with FA give you that encourages and inspires you? I don't remember my older brother telling me any kind of advice, but he certainly was and always will be my great inspiration simply because he was always HAPPY in spite of living with FA!
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Always remember that "Our obstacles are never greater than our ability to face them!" That is, you are already a great warrior.
What is the first thing you want to do when a cure/treatment to FA is found? I want to wear flip flops without fear of falling!
"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? I have always believed that any illness or any discomfort serves to help us evolve spiritually and that nothing is by chance. If I have FA, it is certainly what I need to face to grow and be "better" in my spiritual evolution. If I let FA be in charge, I will be going down the steps and regressing on my spiritual walk. The fact is we should not neglect the FA but have it as an ally.
Tell us a little more about yourself...I am a quiet person. I love my family, my home, my dogs, and cat and my job. I am not saying that without FA, I would be better or worse, but certainly different, very different. Today I just want to be grateful for who I am (with FA), what I have achieved, the beautiful people I know, and who support me daily, especially my partner and my mother. There are difficult, tiring days that make you want to give up everything, but those days usually turn into minutes when I remember our greatest purpose: divine love. And I want to get there with everyone around me. So there is no time to lament, we have a lot of work to do!