Name: Kailey Newcity
Age: 33
Where do you call home? Southwest Louisiana
What is your education [degree(s)]? I have a degree as a medical assistant & planned to go further before getting diagnosed. I don’t think a “normal career” is in my future & that’s okay. I’m satisfied with where I am professionally. I work part-time for a clinic that focuses on women’s health & hormone optimization.
Who do you live with?: My boyfriend Zac & our two 10-year-old puppy boys, Beaux & Roscoe
What’s a typical day for you? I do physical therapy & chiropractor once a week, massage once a month, and work two days a week. I stay pretty active & have a large dose of stubborn independence that keeps me going.
How long have you known you are living with FA? When and how were you diagnosed?: First obvious symptom at 23 — nerve jumpiness, affected walking, etc, misdiagnosed with CMT at 25, correctly diagnosed with FA at 27.
Are there any others with FA in your family?: Juuuuust me!
Describe your transition from walking to walker/wheelchair. Again with the stubborn independence, some days I use a walker, some days a manual chair, some days a lightweight electric wheelchair — depending on where I’m going, what I’m doing, who I’m going with.
What do you like to do to stay active and what type of exercises work for you to stay strong?: I don’t exercise as much as I should but I enjoy riding my trike, stretching for me is essential & I would definitely not have the mobility I’ve got without my massages, PT, & chiropractic appointments.
Do you have any hobbies or special interests?: My favorite thing to do besides pet dogs is to get a large iced coffee & go up & down every single aisle of Marshalls.
What is a good trick to make daily life easier?: I read a lot so I can shut off my brain & not dwell. & I also have a very strong support with friends & family who make sure I never feel like a burden.
When FA gets you down, what do you think/do to feel better?: Participate in research. Try to be proactive & involved with the community that understands what I’m going through.
What is one way living with FA has POSITIVELY affected your life?: 100% the people I’ve met.
What is a favorite motivational quote of yours?: “Though she be but little, she is fierce.”
What is a piece of advice that someone with FA has given you that encourages and inspires you?: I don’t have one in particular, I have friends in different lifestyles or stages of progression that I can reach out to with whatever I’m struggling with.
What is the best advice YOU could give to a person who has been newly diagnosed with FA?: Find your people. You are not alone.
What is the first thing you want to do when a cure/treatment to FA is found?: I’d love to walk into water at the beach unassisted.
“I have FA but FA doesn’t have me.” What does this statement mean to you?: Every aspect of my life is definitely affected, without a doubt, BUT it isn’t the end of the world. I will find a way to continue doing whatever it is I want to do.
How do you live your life in the face of adversity?: By being active in my community, living life & going out in public often. I also post reviews on accessibility of places I visit because I find myself scrounging the internet when going somewhere new to verify it is “actually accessible.”
Interview by
Seth Holm
Please note that this post represents an individual’s experience and is not medical advice. Please consult with your doctor about the safest and best way to manage your FA diagnosis.