To raise awareness for Functional Neurological Disorder Awareness Day, fndhope.org has asked those who live with this disorder to share their story (check their site for more information!) I'm going to share my story from the first day I had a "spell" in 5th grade, all the way to now. A lot has happened in those 9 years, including being misdiagnosed for 8.5 of them. Just to recap, I have something called a Functional Movement Disorder which falls under the category of Functional Neurological Disorder. FND is a problem with the nervous system, causing the brain to send incorrect signals to the body. For me, It causes what I call a "spell," being violent seizure-like movements on the left side of my body, all involuntary. A majority of the time it occurs at night, happening every 30 minutes, all night long. Not getting enough sleep is one factor that makes it worse, so it's a vicious cycle. It started out to be mild, and as the years went on, became more violent. Not many people in my life know the entire story, just a small frame. So let's rewind the clock back to December 2008.
5th grade
I remember the first day it happened with full clarity. I had Yoplait french vanilla yogurt with Oatmeal Squares for breakfast, and was wearing my light pink "Gap Girl" sweatshirt with the furry hood. I remember every single moment because that's the day my life changed. It started out as a regular day for 5th grade Lauren. I got dressed, picked out the scrunchie that best matched my outfit, ate breakfast, brushed my teeth, and got the red "ponytail brush" out of the drawer so my mom could put my hair up. This was how it went every morning, and I expected it to be another average day with the exception of Christopher's band concert that night. As my mom helped to get my things in my backpack, she hugged me goodbye and I trotted off to catch bus 314.
Everyday in Mr. Payette's class, we would have 20 minutes of silent reading. I was reading The Tail of Emily Windsnap, but my attention slowly shifted from the words on the page to the strange sensation forming in my shoulder. It felt as if my arm suddenly got 10 times lighter, warmer, and feather-like. All of a sudden my arm became rigid. It felt like I was flexing a straight arm, but 10 times the normal power and effort. It released from its stiff state, and started to jerk and shake uncontrollably. I tried to play it cool by lifting the lid of my desk, and sticking my arm in there to hide it. Eventually it stopped. At that age, I was not one to show much emotion, so I didn't think anything of it. I thought it was a "one and done" type of thing. The sinister sensation spread through my arm once again in music class an hour later while playing the Boom Whackers. I got nervous as I felt this in my arm because I knew what was about to happen. My arm stuck straight out in front of me, flailing, prohibiting me from playing my part in the song. My music teacher was getting upset, which was stressing me out even more, making the shaking worse. It eventually stopped as I moved it around more, but still despite the panic that I just felt, I bottled it up and went about my day.
"How was school today, Lauren?" my mom asked as I walked in the door.
"Fine, but my arm had a mind of its own," I casually said as I poured myself Scrabble Cheez-Its. I didn't know how else to explain something like that. No more questions were asked as I left to go watch Spongebob. Fast forward a couple hours to the band concert. Once again, my attention shifted from the band to the sensation creeping back into my arm. It started to shake and I got my mom’s attention, telling her this was what happened at school today. Her face went from content, to concerned. She immediately got up and told my dad we were leaving in the most not-calm, calming voice. We left without much explanation, and I remember looking back to see a confused look on my dad's face. Ironically, the band was playing "The Great Escape" at the time. By now, my arm had returned to normal, and my mom was on hold with Southdale Pediatrics. I didn't understand why she was so concerned, the shaking only lasted for a couple minutes and then I was completely fine. There was a tiny amount of concern rising inside me, but I pushed it down like I always did. I was also too young to understand that this could be serious.
We arrived at the doctor's office, my mom was trying to explain what she saw as well as she could, but it was difficult. Of course as I was sitting on the crinkly paper, my brain must've picked up on the struggle of explaining what an “arm on the loose” looks like, and decided to send the sensation through my shoulder once again. It began to subtly shake, and the room went silent. The doctor stared at it for a while, and then left the room. He came back with a colleague and they consulted for a while, not letting me hear a word while they were inserting a blood draw needle into my shaking arm (as you can see I was not happy). I thought all the tasks he had me do after the blood was taken were silly such as touching my finger to my nose or walking in a straight line. I did them perfectly. He squeezed my arm and the shaking stopped (as pictured below), but when he let go, it started again. His face was expressionless as he left the room again in a hurry saying I needed to be transported.
"Are we going home now?" I asked my mom. Her eyes filled with sadness as the paramedics flooded the room bringing along their stretcher. I refused to get on it because that's embarrassing, plus I felt normal again. I told the paramedics I could walk, and they looked confused as I popped up off the table and walked out of the room, tremors all gone.
I thought the ambulance ride was the coolest thing ever because I got to sit sideways without a seatbelt. Unfortunately, I was not aware of the wild ride I had ahead of me. Once I arrived at Minneapolis Children's, an IV was inserted, and an anti convulsant was pumped into my system because they perceived it as a focal seizure. As more and more of the drug was given to me, the spells stopped, but so did my bubbly and witty personality. I became miserable, and I was up all night going through series of tests, MRIs, and questioning. It was one of the worst nights of my life. This is the reason I can remember that day moment by moment. As I hoped that this was a whole one and done thing, I was far from that as I had to begin a new way of living my life since that night.
Middle School
Fast forward to middle school. Since that first night at the hospital, a lot had happened. I was put on Trileptal, an anti-seizure medication, making me into a Lauren that was hardly recognizable to my friends and family. I became a shell of myself. Being a smart, energetic, funny 5th grader, I soon became a version of myself that couldn't get out of bed in the morning, a weak gymnast, couldn't concentrate, and was going through the motions of life rather than living it. Luckily, it was determined I didn't have Epilepsy, so I was taken off of "terrible Trileptal" as I called it. My neurologist diagnosed me with a movement disorder on the Tourette's Syndrome spectrum after seeing a video of my spell. I was told that I would just have to cope with it and hopefully grow out of it in adulthood. This is the incorrect diagnosis I would have for the next 8 years. I endured many more MRIs, and a 24 hour EEG to monitor my brain as pictured above. From then until 8th grade, I still had many more flare ups (including during a gymnastics meet RIGHT BEFORE beam...FYI I still competed and nailed it), but they were manageable and a norm to me. 8th grade was when the next stage came. I got a bad case of strep throat which is a bad combo with this disorder, almost as bad as toothpaste and orange juice. It was the worst flare up I had yet, and the first time I had to stay home from school because of it. That is when it spread to my left leg.
Highschool
Again, fast forward a couple years. I had now learned ways to manage it in my arm and leg, and taught myself strategies to get it to stop. Moving around, handstands, push ups, and exercising were the best ways. During these next couple years, I dealt with more flare ups every time I broke my normal rigid routine. This included visits to Kentucky at Christmas, and other vacations. It was starting to suck the joy out of times that should have been filled with joy, but I still adapted and put on a strong face. When it started to affect gymnastics, that is when I felt at my lowest. Gymnastics was the one place I could escape it for a couple hours, but now I had no zone that was off limits to the disorder. I also started to feel bad as it was affecting my family. There were times where we would be at movies, restaurants, or family gatherings, and would have to leave to tend to my needs. An honorable mention was having to leave church as we were in line to get Communion, and I still remember asking the Lord to forgive me as I left! I was now at the point where I could not walk on my own when a spell came about, and that was hard for me to get used to. I'm not one that depends on others for help much, and having to give up some independence made me feel ashamed and embarrassed. From here on out, I again adjusted and adapted to how I had to manage this by making sure I kept my stress levels down, exercised daily, avoided getting sick, and got enough sleep. By doing this, everything remained stable until my freshman year of college.
College
My freshman year at Gustavus Adolphus College. I was so excited to start this new chapter of my life, but I was still subconsciously apprehensive about what would happen with my disorder once I went through this change. A lot of people have interesting first years of college as they adjust to this new life, but mine was that plus more. Imagine being dragged behind a boat holding onto a rope with water constantly being splashed in your face, making it hard to breathe. This was what my year was like, I never had room to come up for air as challenge after challenge came at me. It was tough having to adjust to college in general, but also having to retire from gymnastics, move rooms because I couldn't have a roommate anymore, and worry about managing my routine to a "T" to minimize my spells. From September to November, I could manage pretty well, but then December hit. The nerve damage in my ribs and spine that I dealt with since senior year forced me to retire from the sport that kept me sane for 15 years the day before my first college meet. It was my life, love, and the one constant variable in my life. Fortunately, I became student assistant coach, but it was still hard for me to be around the sport I could no longer do. I denied how much this impacted me, and pushed away the stress as I always did, but it was building up inside me. It got to the point where there was no room left inside me for the stress to go, and I reached my breaking point.
The night before the meet in Oshkosh, WI. My disorder was so sensitive to the point where a slight startle set it off. I was fortunate that my parents made the drive to watch the meet because I wasn't able to stay in the hotel room with my teammates. There are certain people that I feel comfortable having spells around, but if I am not comfortable, it makes it that much harder to stop. My parents are the best comforters when I get self conscious about it in public. It took me hours to get to sleep that night as a new round of spells would start right when I almost fell asleep. My mom sat in bed trying to bear hug me with efforts to stop the violent jerking. It was no use as the movements had so much power, my mom later revealed they gave her bruises from trying to hold me steady while my arm jabbed into her.
The next day, I was watching bar warm ups when a girl's foot slipped off, startling me, and sending me instantly into a spell. This was different from other times, as the tactics I usually used to get it to stop didn't work. This was also when I realized it had spread to my neck. I didn't know my body was capable of this much strength. I was immobile, and for the first time in my life, I felt helpless. My parents placed me in the car and drove me straight from Wisconsin to Minneapolis Children's. All the way there, the spell didn't stop, it was getting progressively stronger. I remember screaming as it was throwing me into the side of the car like I was in a fight with myself. It was hurting me as the constant jerking and contracting strained my rotator cuff and hip flexor. Every time I felt the familiar sensation in my shoulder, I would brace myself for the spell to start with more fear than I had ever felt in my life. Screaming was the only thing I had control over at that point. This was the first time I acknowledged the fears I had been pushing down since 5th grade. It was also the first time I acknowledged that this was a problem, and I needed help.
Being in the hospital that night was a deja vu moment. I felt like I was 5th grade Lauren back in a gown, hooked up to an IV, then being wheeled out of the same spot years before. Funny how history repeats itself. The pictures above are basically the same, but the only difference is that I had grown and become stronger, as well as my disorder. At the hospital, they immediately administered strong drugs that finally gave me relief. I don't remember much of this night because I had just spent hours expending my energy into a full workout on my left side (fun fact, my left side is stronger than my right from years of this).
In the following weeks, I visited a neurologist that diagnosed me with Dystonia, putting me on meds that harmed me more than helped me. Despite how gross I felt, I was happy to have a diagnosis. I was still having violent flare ups during the night, so I remained on Valium for a month, couldn't drive, and lived at home. Let's pause here, as I have not mentioned school for a while. Yes, I still was in school while living an hour away. I was insistent on attending my classes because I hate being behind. My wonderful mom drove me to St. Peter everyday for a month. She dropped me off at class, stayed there until I was done, then drove me home. I even kept straight A's while being on medication that made me feel like I was in la la land 24/7. Luckily I got an appointment with the Mayo Clinic for further help. They found out that I did not have Dystonia, leaving me feeling stuck because I no longer had a diagnosis. They had one more theory to test. This past summer I was scheduled to spend 5 nights hooked up to wires in the Epilepsy unit, but luckily it only took one night for them to see what they needed. They determined I had a functional movement disorder.
They explained to me that 70% of people with FND don't know what causes their disorder, and will go their whole lives without ever knowing. I am a part of this 70%. Finally, 8.5 years later, I have a name for the monster that's been moving me. I was both relieved and discouraged because yes, I had a diagnosis, but they still didn't know how to help me. It took a while to get used to this concept.
Present day
Fast forward to now! I am sitting here at MY spot in the caf, a declared psych major, avid fitness junkie, VPO of my sorority, a part of Psi Chi Honor Society, studied abroad in France, have some serious goals, all with a functional movement disorder. Here I am, stronger than ever. It is amazing how once you conquer adversity, how rewarding it is to see the journey it took to get there no matter how hard. I now realize how much of my childhood was consumed by this, and no 5th grader should have to endure that, but I wouldn't change it. I don't think I would be the same person I am now if I didn't experience this. Throughout my journey, I often wondered where God was, because in the moment I never saw him. Looking back on it, I realize God was with me the whole time, guiding ,shaping, and giving me the strength to become the strong and resilient fighter I am today. I keep in the back of my mind the phrase "God won't give you something that you can't handle." There have been times where it has felt like it is too much for me to take on, but in the end, I am glad it is me who has it. I know how to handle it with grace, and strength, and I don't think I could handle seeing someone I love endure the struggles that I have. I've used it to find blessings in disguise rather than dwell in my struggles. My disorder has revealed who my support system is, taught me to depend more on others when I need help, and brought me closer to my family and God. Sure, life would be much easier without having this factor, but times of trial are where growth takes place. I now work with a fantastic doctor that has discovered gluten, dairy, soy, and egg are things that make my spells occur, along with my right brain and cerebellum "being a little off" from a mysterious brain injury along the way. I will never know why my brain taught itself to react to those things like this. Making this dietary change has been difficult, as well as the daily supplements and therapy I do with efforts to re-wire my brain, but ALL worth it. FND is not a psychological problem as it was thought to be for decades, but more doctors are now studying it in the correct way. I am blessed that I have had such a great support system, even if they don't fully understand it yet. Honestly, neither do I.
There's my story. It is long and messy, and not over. Sometimes the events I experienced in the past still haunt me. For example, I am no longer able to stand the sight of a needle or veins due to so many blood draw complications. All the locations I’ve had a spell at are forever marked in my mind. Hopefully in the future I will be able to add to my story the day this permanently went away. This is my first FND Awareness Day, and I look forward to many more years of bringing awareness for all those who battle this. Thank you to those who made it all the way through this novel, and for the endless love and support!
Have a fantastic FND Friday,
~Lauren