Name: Christi Wilson
Age: 52
Where do you call home? Kentucky
Education: JD (Juris Doctor of Law)
Who do you live with? My husband and 3 dogs. I have 2 grown children living elsewhere.
How long has it been since you experienced the first symptoms of FA? What is the situation now? About 30 years ago, I began noticing some slight balance changes. I am currently in a wheelchair, but not too many other symptoms, other than it’s getting harder to pass off my speech as just a heavily rural Kentucky accent. I do wish my feet were warmer. Years before diagnosis, I had been in a serious car accident, and my mother had noticed some slight coordination changes in the subsequent years. She insisted I do an MRI, thinking it might be related to the car accident. When it came back clear, I didn’t give it too much more thought until a few more years had passed and others began asking about my gait. Then, I had some further testing done.
Are there any others with FA in your family? No
How has it affected your friendships and relationships? Were people supportive? I don’t think it has affected my relationships, as most people have been very supportive, especially my close family and friends. I have traveled to many places here and abroad, and most people are very accommodating.
Have you had negative experiences with the environment/society? And how about positive experiences? Aside from feeling like a criminal at the airport or worrying about having wheelchair accessible accommodations when traveling, especially abroad, there haven’t been too many negatives. I just find a way around any obstacle. One positive experience is that it forced me to recognize what truly is most important and not take for granted any small thing. It made me want to be the best mom I could be to fill my children with enough love and strength in case I couldn’t be there to tell them. One funny story, when traveling to Australia and touring an island on foot in the Great Barrier Reef, my husband was carrying me on his back, and a complete stranger offered to help carry me as well.
What do you like to do to stay active, and what type of exercises work for you to stay strong? I stay mentally active by participating in seminars and learning/reading about health, wellness, and nutrition. I am still very active with my kids/husband. I still try to routinely meet friends and family for dinner and I enjoy cooking for them, although my knife skills aren’t what they used to be. A few years ago, I began raising and training a now 130 lb Cane Corso to help me around the house. I regularly use an elliptical bike made for wheelchair users. I also do a combination of strength, cardio, core, and stretching wheelchair-style. Although not exercise per se, I also use an infrared sauna and a vibrational plate.
What is a favorite motivational quote of yours? Sometimes the only thing we can change is our attitude. Whether you think you can or can’t, you’re right. I am not afraid of storms for I have learned how to sail my ship. Don’t let perfect be the enemy of good.
Philippians 4:6-7
What is a piece of advice that someone with FA has given you that encourages and inspires you? Up until the last few years, I didn’t know anyone with FA, and back when I was diagnosed, very little was known, and the outlook was pretty bleak.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? At first, at least for me, so long ago, the diagnosis was overwhelming. I was newly married, in law school with a job lined up, and my mom had just been diagnosed with stage 4 cancer. My plate felt so full that it could break if a feather landed on it, partly because little was known about the condition, and what was known didn’t sound too good. However, I decided to take each day as a gift and just put one foot in front of the other. It also helped that I had the support of my husband for the last 30 years! I would also say to learn to develop patience and have a positive attitude. Healthy nutrition (organic, whole food if possible) and lifestyle (exercise, infrared sauna, etc) go a long way towards maintaining your health. Just keep moving forward because no one can tell you how this disorder will affect you personally.
What do I wish people knew about FA? That a diagnosis isn’t something textbook. Every person is an individual, and there are many things that determine how fast or slow you progress.
Are the healthcare providers in your town familiar with FA? Is there support available from the healthcare system? No, it’s a pretty rural community, and even in the bigger cities, it’s still an anomaly.
What is your favorite part of the day? Anytime my kids call or text to tell me about their day, share good news, or want someone to listen to a problem. Also, either early morning or late at night because it’s very peaceful, birds or crickets chirping, and the sound of my dog breathing curled up to me as close as he can get. Whenever my husband gets home from work.
Interview by
Sam Dupre
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.