Navigating Functional Neurological Disorder: Our Journey to Understanding Recovery

Whether you've seen our video or not, you're here to read our full story. Our story spans four states within three weeks...hundreds of people passing through dozens of hospital rooms...and one tragedy that changed the trajectory of our relationship. We're navigating our way through this journey with functional neurological disorder (FND) -- a disorder where the brain doesn't properly send signals to a part/parts of your body and can manifest in a variety of symptoms that are different for every individual.

From our own research (and we're still reading and wanting to learn), FND can be stress induced, but stress can vary depending on the individual's body. Stress can manifest from a common virus, and it can also manifest from sexual assault. FND symptoms can present as seizures, blindness, limb weakness, migraines, tics, etc. In my boyfriend's case, FND presents as paralysis from the waist down.

How It All Began...

By February 2025, Ephraim and I were in a long-distance relationship. He was living in Hattiesburg, Mississippi to get his Ph.D from the University of Southern Mississippi, and I was holding it down in our condo in San Diego, California.

After a regular day of classes and a normal workout at the local gym, Ephraim went back to his townhouse to get some homework done but felt exceptionally tired that day. He texted me to let me know that he was going to take a nap and that he'd text me when he wakes up.

An hour passes. No text. A few hours pass. No text. Twelve hours pass. No text. The day's ending and I'm getting into bed a little annoyed at this point. Still no text. Not that we need to speak with each other at all times of the day, but we always end the day knowing the other is safe at home. I decide to play it cool, go to sleep anyway, and just wait until the next morning.

I love to sleep in. But at 7:00 a.m. sharp, my eyes popped open. I checked my phone. Still no text. I call his phone. No answer. I decide to check my emails at that point to distract myself, and I see an email sent two minutes earlier at 6:58 a.m. titled "HELP" from Ephraim.

His message says he can't feel or move his legs and to send help. Thankfully, I had his address to call 911 and his uncle, who only lived an hour and a half away. In 5 minutes, first responders had to break Ephraim's door down and carry my 6'3" boyfriend down the stairs and into the ambulance to rush him to the hospital. He was able to request his phone, which was downstairs the entire time, full of my missed calls.

I was told he was taken to Forrest General Hospital, and that was it. I had no way to contact him, and there was no one to be there with him. I had to wait in the silence of our condo on the West Coast.

I had a million questions. Why couldn't he move his legs? Where was he this entire time? Was there an accident? Was it an injury? Is it permanent? How am I going to get in contact with him? How am I going to be able to help him?

I called the ER to establish a point of contact with the nurses and doctors. I was able to ask what was happening, and the ER nurse said "Hun, if you have the means to get here, no one should be alone with this experience."

And it was just like that. I packed my bag. I drove to Palmdale, California to drop off our dog with my family. My parents and brother drove me to Los Angeles, California. I flew out on a red eye to New Orleans, Louisiana, picked up a rental car, and drove the hour and a half to Hattiesburg, Mississippi in the early morning.

Seeing him in the hospital bed was surreal. I'm used to seeing him tower over me...or running across the basketball court...or working out in a gym...But I was glad to be there when he woke up from his first night in the hospital.

The Scariest Week

For 7 days, Ephraim was examined and tested by so many doctors, moved to so many different floors, given such little information. After four MRIs of his entire spine, EEGs of his brain, scans of his heart, X-rays of his body, blood samples, nerve conduction studies, and tests for autoimmune diseases, all the results came back relatively normal.

With the exception of a Vitamin B and D deficiencies, Ephraim just couldn't move or feel anything from the waist down. The neurologist would come in, take out a safety pin, poke his legs from his thighs to his toes, and ask if he could feel anything. Nothing. They asked him to move his toes. Nothing.

On the third day of our stay, Ephraim had let me know that he was really tired again. I told him to just rest, so we fell asleep. The next morning, he just didn't wake up. I figured he was just sleeping in. Granted, he wasn't sleeping well in the hospital bed with constant interruptions for tests and nurses taking blood.

Hours passed and he just didn't wake up. The nurse came in and tried to wake him up by calling his name. She shook him and tried rubbing his chest with her fist. Nothing. He was still fast asleep. The neurologist came in to try waking him up too. Still asleep.

This continued for the next 48 hours. I spent two days listening to nurses tell me how important it was to stay positive, having lunch with the nicest transport techs so I wouldn't be alone, talking to palliative care just in case he never woke up...Doctors just kept telling me to talk to Ephraim every chance I could. Reality set in...He might not wake up again.

So I did. I talked to him about the cafeteria food I was eating (which was so good, by the way -- California hospitals should definitely take notes). The nurses would turn on the basketball games and have him listen to the commentary. I'd play music from his playlists. I'd tell him about the phone calls I had with friends and family. More importantly, I told him that I loved him every moment I could.

It was the fifth night of our stay that I finally cried. I realized that I didn't emotionally process any of the craziness until that night, and the neurologist was running out of ideas. As a last attempt, the doctor prescribed a dose of Ativan to see if it would relax Ephraim. I didn't even understand how that could even possibly help, but at that point, I was just praying and putting my trust in God to guide this neurology team.

After a couple hours, Ephraim grabbed my hand and opened his eyes as if he was just waking up from a nap. He had no idea he had been sleeping for 50 hours straight. His toes would even move a tiny bit, but there was still no voluntary movement or feeling in his lower body.

We made the most of our stay. Ephraim told me where to try my first Southern beignet and saved his grits and biscuit for me every morning. We stayed up late watching cartoons and laughing. We enjoyed our DoorDashed meals (shout out to Donna, Hazel, & Aaron). Even though it was under the worst circumstances, it was nice to be together again after being apart for months.

We spent most of our time on the neurology floor. After the longest week ever, the team in Mississippi decided to seek a second opinion from another neurology team in Alabama to ensure nothing was overlooked. Their guess was functional neurological disorder, but they didn't want to officially diagnose him without more opinions.

So. Much. Traveling.

He was then transferred to the University of Southern Alabama (USA) for more of the same MRIs, EEGs, scans, and tests. I drove the two hours separately to Alabama and met the new team of neurologists and nurses who took a look at Ephraim's case. After another week, we had the same results: nothing out of the ordinary and no diagnosis.

We left Alabama disappointed and exhausted from the medical team...but again, we tried to make the most of our stay. We were SHOOK with the most popular dish at the best rated Chinese food in Alabama (peep that picture and if you've had my fried rice, you know) and HUGE

shout out to the grandpa at Morrison's who introduced us to the best meal of our lives. We always tried finding the silver linings and nuggets of joy as much as possible, usually it was what we could control...and that was mostly our meals...Anyway, USA's suggestion was that we be transported back to Mississippi and continue our treatment there.

Ephraim was transferred back to Forrest General and as I drove back on my own, I couldn't help but think that this was our reality now. Just like the first time I had cried, this drive was the first time I was able to ask myself whether or not I wanted to accept this as my future.

Maybe Ephraim was having the same thoughts because when we got back to Mississippi, he said, "Are you sure you want to be here? You can jump ship right now, and I'll understand." But I knew I flew out there for a reason and I wasn't going anywhere.

We spent another frustrating seven days in Mississippi with no answers, no clear diagnosis, and no real plan for discharge. The hospital said they could transfer us to a hospital in California for $20,000 (because we all casually have that much money for a flight like that), wait for an unknown amount of days for a possible transfer to New Orleans where he has family, or get discharged and fend for ourselves.

In an hour, we were discharged to fend for ourselves, without a wheelchair and only hope to get back home to California.

In three hours, we were in New Orleans buying a wheelchair with his uncle (shout out to Uncle Bruce).

In eight hours, we were trying to navigate an accessible hotel room for the first time.

In twenty-four hours, we were stranded at the hotel because the shuttle to the airport wasn't accessible. Ephraim had to literally be CARRIED by two hotel employees (that were half his size) onto and off the bus so we could barely make our flight home to San Diego.

Settling In and Trying To Establish Care

By mid-March 2025, Ephraim's in a wheelchair with the skills to get around and transfer. We needed to make our condo accessible and readjust ourselves to living together again. Not only that, but it took a few days to establish care with his insurance with Kaiser here in California since this is technically where he resides.

Of course, to play the insurance game, we had to schedule an appointment with his primary care provider, get the referrals, and wait for those specialty appointments.

All of this takes time, and we felt like we were racing against time. The longer he wasn't able to walk without any diagnosis, direction, or any physical therapy, the longer we felt hopeless and like this was permanent. The tricky thing from our own reading about FND was that mental confidence and positivity was key. So, time felt crucial.

To be proactive, we scheduled his primary care provider appointment on our flight home. At that appointment, his PCP ultimately took notes on our story above, said she's heard of functional neurological disorder, and put her referrals in. No other direction, no other information.

Luckily, we were able to see a neurologist within the next couple of days. It gave us hope that his case was pretty serious...I mean, he couldn't walk. It was serious, right?

The neurologist asked standard questions, took notes, and scheduled the same tests...more MRIs, more nerve conduction tests...But at least we were able to get scheduled. Fortunately and unfortunately, the results were the same: nothing out of the ordinary and "probably" functional neurological disorder.

We're fortunate because this means there's a high chance for Ephraim to recover and be able to fully walk again. I say it's unfortunate because it still seems like no one knows how to help him get there as we were just referred to a website to read and told he should get physical therapy multiple times a week.

At first, we were given home physical therapy. We were told a physical therapist would come to our house to help him navigate home life and show us stretches to regain movement. We thought it sounded perfect and agreed. It turned out that we were only allowed 4 appointments, once a week, and only 30 minute sessions.

The first appointment was an introduction and consultation. He proceeded to tell us that the physical therapy once a week wasn't going to be enough for him.

The second appointment was actual physical therapy stretches. She proceeded to tell me that I should be his physical therapist for the rest of the week.

We called to ask if we could switch services because we weren't satisfied with the home physical therapy and would rather have outpatient therapy. We were required to finish the home PT program first.

So, the third appointment was the PT using our own stim machine on Ephraim's legs, no stretches. She essentially placed the sticky pads on his legs and set the settings after reading the instruction manual.

The fourth appointment was for us to sign paperwork to prove that they showed up for the sessions. My favorite part was when the PT told us to remember that Ephraim should be getting at least three physical therapy sessions a week instead of what they actually provided.

All nice people. Just a waste of four weeks.

The next week we were scheduled for outpatient physical therapy, which also are only about 30-45 minutes. But there are only two neuro-physical therapists for the entire San Diego County, so they are booked to capacity.

This means Ephraim is only able to see a physical therapist once a week if we're lucky...even though every doctor has suggested PT at least three times a week. Thankfully, the neuro-PTs we do have are amazing...They're the only people who have really listened to us, gone out of their way to try to help us find resources, and have helped Ephraim make so much progress (shout out to Jennifer and Antonio).

Again, all nice people. Just an understaffed and overworked department.

The last puzzle piece to explore functional neurological disorder was psychiatry. FND can involve a mental-emotional piece, so Ephraim was also referred to see a psychiatrist. We weren't able to get an appointment to see anyone until two months out from the referral in made in March, which puts us in May. After his initial appointment, they wanted to follow up with him in three months, which puts us in August.

Also, very nice people. But how will we get to the root of FND if we only see him once every three months?

Fast forward to June 2025, we finally had our second appointment with our neurologist to go over the test results from April. We received more of the same, which was again fortunate and unfortunate. The neurologist still wants another opinion from her colleague to make sure it's functional neurological disorder. Again, not until August. She said it might sound counterintuitive but the best thing Ephraim can do is exercise, and then we were referred to a website to read for resources.

So...Now What?

At this point, we feel like we're in a rotating door of doctors. It feels like there isn't any initiative being taken to move forward.

We read about FND on a daily basis in various support groups on Facebook, and the majority of people share our experience as well...An unclear diagnosis, getting passed from doctor to doctor, no actual guidance besides a website to read, and having to figure out therapies or exercises for their individual case on their own.

So that's what we have to do too. We're deciding to take it into our own hands. At this point, we're trying everything and anything between appointments.

We started small by getting Ephraim onto yoga mats on our condo floor. Naturally, he was hesitant to be out of his wheelchair with some doubt that he'd be able to get himself off of the floor. I encouraged him and told him, "Worst case scenario, we'll crawl on the floor together and I'll pull you up onto some kind of furniture. You know how to do a bench dip. I'll get you up somehow." With that, we got on the floor, stretched, did some breathing exercises, and meditated.

That was when he realized he could do this. He could get himself around. He could recover.

Since then, he's been having to push his fears aside and hurdle the mental block of falling over with each active task we try.

We've done some yoga at home. As intimidating as it was, he joined a 24-Hour Fitness again. He's transferred himself into a sauna for some extra sweat and stress management.

We've gone swimming in our condo pool, which was a great tool for him. The weightlessness really helped with some assisted leg movements. We just wish it was a little deeper so he could straighten his legs completely and almost feel like he's standing again.

We also aren't experts when it comes to exercises he should do, movements that would help, strategies to build his strength, etc. Yes, Ephraim has a strong background in athletics, college basketball, and coaching. But are we experts with physical therapy, recovery, and rehab? Absolutely not.

Like I said in our video, our goal was to walk down the aisle and get married. But now, our goal is for Ephraim to just walk again.

If anyone has any suggestions or knows anyone who might want to talk to us or help, please reach out to us. We are willing to talk to anyone about our story and we're open to trying anything.

We're willing to pay for services, of course. We just know that these services are definitely cheaper than the out-of-pocket hospital charges...Any help is appreciated though.

Whether that's an hour of your time, any services provided, discounts on services, a referral, a suggestion, or a conversation with us about our story, or even just a workout buddy for a gym session...

The both of us have dedicated (and will continue to dedicate) our lives to our communities. So we're leaning on community now for our journey to recovery.

People:

• Physical therapists

• Massage therapists

• Neurologists

• Hospitalists

• Therapists

• Hypnotherapists

• Psychiatrists

• Neuropsychiatrists

• Psychologists

• Athletic trainers

• Gym owners

• Workout partners

• Aqua therapists

• Acupuncturists

• Anyone interested in FND, recovery, brain function, stress management, relaxation techniques, or overall fitness.

Facilities:

• FND recovery facilities

• Physical therapy rehab facilities

• Neurology centers

• Universities

• Hospitals

• Research centers

• Accessible gyms

• Recovery facilities

• Stretching facilities

• Saunas

• Ice baths

• Anywhere focused on FND, recovery, brain function, stress management, relaxation techniques, or overall fitness.

We'd love to connect on Facebook or Instagram. You can also email us at kiramatsuo@aol.com or call/text either of us if you have our contact info. ♥️