My story:

The day before my 40th birthday, I woke up with a sudden onset of severe neurological symptoms including: full body involuntary movements and spasms, functional seizures, difficulty breathing and speaking, and left leg weakness.  

I ended up in the ER at 2am.  My symptoms worsened. After a particularly exhausting 30 minute functional seizure, I tried to reach out for my water bottle. My left arm and hand would not respond. Due to severe left leg weakness and severe balance issues, I lost the ability to walk for a few days.

I am a violinist, and my hands would not move. I am a runner and my legs would not work. These were dark hours. Would I play my violin again? Would I run again? I had NO idea what was going on.

After comprehensive testing (EKG, EEG, Brain and Spinal MRI, bloodwork, etc.) and close observance by competent medical professionals, I was diagnosed with Functional Neurological Disorder. Basically, in the blink of an eye my body learned a new, maladaptive, automatic, and inappropriate way to respond to my environment. It was terrifying to learn that no medication treats FND; instead, I was told that the only option to treat FND was through therapy such as physical therapy and cognitive behavior therapy. It would be up to me to retrain my brain and body to move in the ways I chose.

This may sound silly, but the first thing I remember googling about FND was, “Has anyone with FND completed an Ironman?” At the time of the onset of my symptoms I was 5 weeks into  training for the Texas Ironman.  I wanted a glimmer of hope that I could recover and complete my goal someday.  Google had no answer for me.

A few days after my return from the hospital, I began working with my healthcare team to reclaim control of my body. Hope was born! Step by step, day by day, therapy session by therapy session, my brain recreated the appropriate neuropathways that enabled me to overcome my neurological symptoms.  There were MANY moments of laughter with my family as I relearned how to do simple tasks and often felt like a toddler learning to walk!  They were so patient and encouraging. My sisters flew in from around the country and helped care for my family for a month during my rehab. Friends from my community and church brought meals and offered incredible support to me, my husband, and my 5 kids.

There were also periods of intense sadness, fear, and frustration. One night after practicing my “opposing responses” to functional seizures, for what seemed like half the night, I was at the brink of despair and exhaustion. How was I supposed to prevent and control the tremors, the shaking, the seizing up? It was so hard and I was so tired! I went outside and laid in the grass at 2 am and felt the cold, damp blades of grass in between my fingers. I gazed at the stars. I prayed. I cried. And then I noticed my moldy pumpkins on the porch. 5 rotten pumpkins to be exact. I went in the house and got a sharpie and on each moldy, fruit fly infested pumpkin, I wrote the poisonous thoughts stirring in my soul: “It’s my fault.” “There’s no way to change this”.  “There’s no point in trying.”  And then, one by one, I carried the disgusting pumpkins to my coldesac where my garbage can sat ready to be picked up in a few hours. I threw them in!  Afterward, I went inside and wrote down what I do believe, and what is true.  A few hours later when the trash man came, my 7 year old daughter and I cheered as the pumpkins full of flies and lies sloshed their way into the garbage truck.  This was a turning point. 

And then… I worked hard. I continue to work hard. I keep trying, keep pushing, keep hoping, keep showing up.

It has been a miraculous journey marked with potent and deep joy. I am healthy. I am whole. I still have neurological symptoms here and there, but I’m back at life: being a mom, performing with my symphony, teaching music, exercising (yes, training for an Ironman) and enjoying my life! I am grateful for each of my therapists that have helped me in my ongoing recovery. In particular, I am deeply grateful for my connection with the University of Alabama at Birmingham’s FND Clinic that utilizes a cutting edge FND treatment plan called ReACT led by Dr. Fobian.  Check out the website https://reactfnd.health/ to learn more about ReACT: Retraining and Control Therapy.  

Please consider donating money through this website to help Dr. Fobian continue this incredibly important research. All proceeds will go directly to her research team.  Also, please feel free to share my story.  Because FND is not widely known, many people suffer for years before getting a correct diagnosis.  I feel blessed to have had such a quick diagnosis and want to do whatever I can to help others with FND to have the most successful recovery possible. For more questions about FND, check out the website https://fndhope.org/.