A life-changing diagnosis

Days before her senior year in high school, Kaylee Gibson’s legs stopped working due to an unknown medical condition.

Miela Miller-Jacobs, Intern|September 28, 2022

Kaylee Gibson (center) holds a props meeting a month after her diagnosis of FND. When FND caused arm and hand weakness, she struggled to play her instruments. “ I had my dad hold [my trumpet] up, and I tried playing it and my muscle memory took over and I was able to play without a problem.”

Kaylee Gibson ’23 has Functional Neurological Disorder, also known as FND, that causes multiple symptoms. In Kaylee’s case, her main symptom is her legs are too weak to currently function alone. She is dependent on her mobility aids – her wheelchair and forearm crutches.

FND is a rare and complex condition that affects an estimated four to 12 out of 100,000. Symptoms may include weakness, paralysis, tremors, vision problems, and more. These symptoms are a result of disconnect between the frontal lobe and emotional processing. FND is currently considered a rare condition, however new research has the potential to change this.

The following interview has been edited and condensed for clarity.

How would you describe FND personally?

FND is kind of like the hardware is fine, but the software is not right. Physically I’m okay, but mentally, the mind and the body are not communicating. So there’s just a miscommunication or a block in my brain that’s not telling my body what to do correctly.

Do you have multiple symptoms?

Yes, I’m actually still learning all my symptoms. I can pull up a list and be like, I have that and that and that, but I don’t know them all. Right now I have leg weakness, which is my main [symptom] and I get arm and hand weakness as well. But I also have double vision, loss of balance, pain, headaches, and lots of other things, but I can’t really list them all. It’s a whole array of symptoms. Not everybody with FND has everything the same. Some people with FND have seizures. I do not have seizures. I do have the leg [weakness]; it’s hard.

How did your diagnosis occur? Were you referred to any specialists?

So my diagnosis was really easy. I have some friends who had to go through a lot to get their diagnoses. They did scans after scans and tests. Aug. 12 is when my legs stopped working. And then, by Aug. 22, I had a diagnosis. We knew people, so it was easy to get into the hospital to get the right people. We went to a pediatric doctor, and he did a couple of tests on me, he ran my urine and my blood and it all came back normal, which is typical for FND.

Originally we weren’t able to get into the neurologist until November, which is kind of crazy that something this severe is happening and you can’t get help until November. Luckily we were able to get in the first week of school, the first day of school. So I had to leave the school on the first day, but I went in and they had me walk up and down the hallway and tried to make me squat and run and jump and they diagnosed me with FND. So functional neurological disorder. So it was a really easy diagnosis and the doctors were amazing. But I know it’s not always like that.

Did you know what FND was before you were diagnosed? Did you know anyone with FND at the time?

So I also have Tourette Syndrome. I went to the Tourette conference back in May, and I have a couple of friends who have FND that I met there. And so I kind of knew what was going on. But I didn’t have a diagnosis yet. So when my legs first stopped working, I was obviously scared and nervous. I was like, what’s going on? I had a couple of meltdowns, but I kind of had it in the back of my mind. I was like, I’ve seen my friends get through this and they are now walking and jumping and squatting and stuff. And so I wasn’t super concerned. So honestly, if it had happened to somebody who didn’t know what FND was, [they] probably would have gone to the emergency room. But we were like, we kind of think we know what it is. So we didn’t.

Would you say that knowing those with FND made your onset of FND less scary?

Yeah. So it was definitely scary, and I think it would be scary for anybody to be fine one moment and the next moment your legs just stop working. But it was a little less scary knowing other people with it, that the same thing happened to them.

Do you know how you’re going to continue being Head of Props for Theatre West, seeing as Props is held upstairs?

I’m still trying to figure that out. So I can go upstairs on my butt, I scooch up one at a time so I might have to do that to get to the loft and then I have some forearm crutches which are extremely helpful and I can walk for short distances with those. So I might be able to get around in the loft. With the crutches, I probably won’t be able to move anything, but I can tell people what to do. So that’s probably what’s gonna happen. Otherwise, maybe we’ll have to meet somewhere else. We’ll figure it out.

Has playing music helped with your diagnosis?

My hand started stopping like a week and a half ago and I couldn’t play tuba anymore. And I was a bit sad about that. But then I picked up the tuba. I had my dad hold it up and I tried playing it and my muscle memory took over and I was able to play without a problem. And it was really nice, with tuba, my muscle memory took over and I was able to play the whole pregame for marching band and it was no problem. It was crazy.

How have your family and friends been supporting you through your diagnosis?

Amazing, more than amazing. I have the best family and the best support system ever. Obviously, I’m nervous about what people are gonna think, or what people are gonna say, but I’ve never been scared that they’re gonna be bad. Like, I’m just nervous about what the reaction will be, not the severity of [it]. But I’ve had people pushing me from class to class and they’ve had no problem with that. My parents have been taking me from appointment to appointment to appointment and it’s been no problem. I’ve had people helping me every step of the way. It’s just incredible. So I’ve had the best support system.

Are there any misconceptions about FND?

I’m not sure because I don’t know that much about FND. If I’m going, to be honest, I was just diagnosed, so it’s hard to know everything about it. And I don’t ever hear anybody talking about FND. I’d never heard of it until I met those friends at the Tourette conference. When I tell people that I have Tourette’s and they’re like, “Do you swear?” And that’s the big misconception about that. But there’s not really a big thing about FND. And it’s such a wide range of symptoms, that it’s hard to have those misconceptions if that makes sense.

Is there anything that you’d like people to know about your FND that I didn’t ask?

[One thing] about FND is that it can be treatable, so my prognosis looks good. The goal is for me to be walking by the end of November for 500 feet without [aid]. I’m doing physical therapy. I’ve been trying to reconnect my brain to my legs and my body so they work again. I’ve been going to therapy for two or three years and I’m gonna work on the stress aspect that brought it on. Because FND is affected by emotions. Stress is a big one. And we’re trying to deal with my stress and bad stuff in my brain to try to go from the inside out. So we’re doing physical therapy and therapy.