Name: Carla Poletti
Age: 57
Where do you call home? Paragould, AR
What is your education? High school, and 1 year of trade school in data processing.
Who do you live with? My Dad and my fur baby Bailey.
What’s a typical day for you? My caregiver comes at 8, helps me wake up and get ready, showered and dressed. I eat breakfast, check my socials and messages and chit chat. My caretaker cleans up the house, then we might play games and exercise. I love playing Yahtzee and catching up on Heartland. I love to be outside, but it has been too hot to enjoy it.
How long have you known you are living with FA? When and how were you diagnosed? I was diagnosed in 1985 when I was 17 years old. At that time, I had severe trouble with coordination and weak reflexes. I spent three days in the hospital with extensive testing and a spinal tap was done. That is what told the doctors I had FA.
Are there any others with FA in your family? No, I am the only one.
Describe your transition from walking to walker/wheelchair. When I was about 25 years old, I had to start using a walker because my balance got so bad. I quit working at that time and started drawing disability. Then, at the age of 32 I got my first wheelchair. For about a year, I went back and forth between the walker and wheelchair. Then, eventually I went to the wheelchair full time. At this point I am still using a manual wheelchair, but my next one will probably be a power chair because I am getting a lot weaker.
What do you like to do to stay active and what type of exercises work for you to stay strong? I do physical therapy, and my caregiver helps me do stretches from head to toe. I also like to lift weights with my arms for exercise. I have a pull-up bar to help raise up out of bed, and I have bars that help me transfer some to the toilet.
Do you have any hobbies or special interests? I like to write in my journals and write poetry. I love my football and this year will be my second year that I have gotten into fantasy football. I love the Chiefs. GO TRAVIS! I Loved Travis before Taylor Swift stole him. I am big family person and love to be around them and friends. I also enjoy going to church.
What is a good trick to make daily life easier? Keep a positive attitude and have a good coffee in the morning.
When FA gets you down, what do you think/do to feel better? I pray. I talk to someone about how I am feeling, like a friend. Sometimes I do have a good cry.
What is one way living with FA has POSITIVELY affected your life? Meeting other people who have FA and gaining new life-long friendships. FARA and my FA community have meant everything to me, especially over the last few months. I highly recommend connections, especially being connected with other people who have FA.
What is a favorite motivational quote of yours? “If you go through it, grow through it.” & “Forgiveness doesn’t make them right, it sets you free.”
What is a piece of advice that someone with FA has given you that encourages and inspires you? There was a young woman named Chelsea who encouraged me in the beginning to get involved with people with FA on Facebook and Dr. Lynch. She is the one who got me hooked up with my FA community. Because of her encouragement, it led me to Camp FA Woodstock and I met all these other people.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? My advice is, stay healthy and keep doing what you can to be active and stay active because there is hope and a cure is coming.
What is the first thing you want to do when a cure/treatment to FA is found? Run and wear red high-heeled shoes!
“I have FA but FA doesn’t have me.” What does this statement mean to you? Yes I have FA, but that does not define who I am as a person.
How do you live your life in the face of adversity? Jesus Christ.
Tell us a little more about you…. I married my husband Tim in 2012, and he is the one who got me involved with the FARA research symposium in Philadelphia. He has always been my biggest supporter when it came to my FA and advocating for me, and he was the one always cheering the loudest for me. He passed away this past February. I felt like my world has come to an end, but I also feel like he is still cheering me on and beside me. Life is certainly different, but it’s not over. I also have a fur baby named Bailey. She’s a Boston Terrier, she is my big snuggle bug.
Are the healthcare providers in your town familiar with FA? Most of them learn from me. I see a doctor over the computer for FA. ( Dr. Lynch.)
If I were traveling to your country to visit, what tips would you give me about your favorite attractions, activities, etc? The community center has a wheelchair lift to get into the pool, so that is FA-friendly. Most things I have done are wheelchair accessible.
Did your diagnosis impact your friendships and relationships? If so, in what way? I never really had to make any relationships worse. It didn’t affect them negatively until I got to where I couldn’t get into their vehicles like I used to.
What do you wish the general public understood about FA or disabilities? I have always been one to believe that a disability does not define a person. People with disabilities can do great things to still impact other people around them. Don’t let a disability hold you back from doing what you like or doing anything.
How long have you had your hobby/special interest? How did it start? Why is it important to you? I love writing and poetry. I started writing when I was a teenager. It was a good way to express myself and put my feelings out there that I wouldn’t normally say out loud. Some things that I write I do share, like my poetry. But some things I like to keep to myself and not share.
What is your favorite movie or book? My favorite show is Heartland. I don’t have a favorite book, I just like reading. But if I had to choose a #1, It would be the Bible.
If you could live anywhere in the world, where would it be and why? Tim always said somewhere in NY, but I wouldn’t want to do that without him. For now, I would like to stay where I am, but I would love to get out of this humidity.
Are you a night owl or an early bird? I am usually a night owl, but that has been changing lately. I go to bed around 10:30.
Interviewed by
Jamie Plourde