My FND Story
Functional Neurological Disorder- ACT I
Frozen. Why couldn’t I move my arm?
It had been a horrible night suffering through the worst migraine of my life. My migraines had been out of control, but like many medical professionals, I minimized my symptoms and pushed on through so that I could take care of other people. On this morning, I went to work despite my pain, planning to leave as soon as my patient schedule allowed. It was October, usually a slow time in pediatrics. When I arrived in my office, I turned on the computer to look at my schedule. Scheduled slots showed up in yellow; open appointment times were white. I looked in shock at a completely yellow page. How could my schedule be totally full, today of all days?
As I resigned myself to get started, I began to pin on my ID badge. My hand stopped midway to my chest, refusing to complete the task. “This is ridiculous,” I thought, “Of course I can pin on my badge.” Still my hand refused to budge. Maybe this severe headache was more than a migraine. Could I be having a stroke? I called out to the nurse I knew was around the corner. As she came in, my frozen arm began to jerk violently. The nurse called for help and I was soon surrounded by nurses and doctors. No longer a colleague, I was now a patient in my own office.
My journey into the world of Functional Neurological Disorder, then known as Conversion Disorder, had begun. The following days, weeks, months, and years were confusing and heartbreaking. Sadly, I saw the worst of the medical profession, a profession I loved. My credentials as a physician assistant did nothing to protect me from the disrespect, disdain, and abuse from many of those professionals from whom I sought help.
After a week’s hospitalization for the functional seizures I continued to experience and months searching for answers, my seizures stopped. Reluctantly, I accepted my Conversion Disorder diagnosis, although it didn’t make much sense to me. I had taken a short term leave from work for a few months, but began working again. I wholeheartedly threw myself into regular mental health counseling, as I was told that was the only answer for my health condition. Life went on and I managed to stay healthy for another 8 years.
Intermission- A New Diagnosis
With time, I could feel myself slipping mentally and physically. Exhaustion came early- by 3 pm each day, brain fog set in. I became concerned that my medical judgement could be compromised by my impaired cognition and I also worried that my Conversion Disorder could relapse, so after discussions with my husband and psychiatrist, I made the painful decision in 2009 to resign. It broke my heart to leave the position of my dreams, but I would have never forgiven myself if my mental state brought harm to a patient.
A few months before my resignation, my mother had been diagnosed with dementia. Her diagnosis took a toll on me. I had to learn to navigate my already difficult relationship with her; I also was responsible for packing up and selling her townhouse as she moved to California to live closer to my sister.
After her move, my mother saw a new neurologist who diagnosed her with a rare, sometimes hereditary dementia. Her father had died young from an undiagnosed neuropsychiatric disorder and it was believed that he may have suffered from the same rare disease. As I started researching the disorder, it occurred to me that the same disorder could explain my own neuropsychiatric symptoms. I discussed my anxiety with my psychiatrist and she agreed that it was a concerning possibility. As much as I hated consulting another neurologist after my horrible experiences a decade earlier, I started the process of investigating a new diagnosis.
The neurologist I saw agreed that my symptoms combined with my mother’s diagnosis were troubling. The only definitive way to diagnose the illness was by autopsy, so the question could never be fully answered for me. As my cognitive and physical coordination symptoms worsened, I joined a research study for the rare disorder I was believed to have. For 4 years, I traveled to San Francisco once or twice a year so that I could be followed as my illness progressed. By 2015 I was in terrible shape. I no longer could walk and was in a wheelchair full time. My speech had also become affected and I was nearly mute. I learned to use a speech assistive device so that I could continue to communicate. My husband, my doctors, and I made the difficult decision to move me to an assisted living facility so that I could be cared for at all times.
My mother passed away in November 2015. Because of a miscommunication, her brain autopsy was never performed. The definitive answer to her diagnosis will never be known. My last visit to San Francisco was in early 2016. To my shock, the doctors evaluating me at that visit informed me that they believed that I had been misdiagnosed. They believed that the symptoms I had been experiencing were functional. I laughed at the suggestion. I’d been down that road before, and I knew they were wrong.
Act II- FND again
Assisted living life was not for me. I missed my husband. I was surrounded by people who were several decades older than I was and I didn’t feel I had anything in common with them. Worst of all, I had horrible sensory sensitivity and I couldn’t tolerate leaving my room. Overhead music was too loud, the dining room was unbearably noisy, and the occasional mandatory fire drills left me screaming in terror and the staff struggling to help me out of the building.
We made modifications to our house so that it was wheelchair accessible and I moved back home shortly after I was told that my disorder was likely functional. Although I didn’t believe the new diagnosis, I started seeing a neuropsychologist for more therapy. He also didn’t believe that my symptoms were functional. Nevertheless, I continued to research the possibility.
Warning!
DO NOT believe everything you read on the internet! Only use reputable sources for medical information.
When researching what had become known as Functional Neurological Disorder, I came across the fantastic resources FND Hope and neurosymptoms.org. It was so refreshing to read that others struggled with this disorder, it was real, and it wasn’t my fault. Those were very different messages than the ones I had received over a decade earlier. I also ran across information about the MoRe program (motor retraining) in Louisville, Kentucky and decided that I would try to seek treatment there. Treatment programs for FND are few and far between, unfortunately. I knew that there were many barriers to getting accepted into that program and I didn’t want to wait any longer to get better, so I decided to begin tackling my symptoms myself.
Mirror Magic
First problem to address- my speech. Sometimes the words wouldn’t come out of my mouth at all; other times they were slow, halting, and stuttering. I wondered, “How do I re-teach my brain to move my mouth?”. The thoughts in my head were clear, the muscles just weren’t working correctly to get them through my lips as speech. As I thought about the process of re-training my brain, I envisioned a long, difficult period of re-learning how to make speech sounds correctly. I wheeled my wheelchair to the bathroom and watched my lips in the bathroom mirror. To my astonishment, my brain had no problems directing those lips in the mirror. I was immediately able to talk again, as long as I was letting my brain control my mirror lips. It’s a little strange to describe the state of my mind as I used the mirror. I have found that in FND, the harder you try to control your muscles, the worse that they behave. Using the mirror, my thinking brain was passive. I allowed my brain to focus on those mirror lips and automatically direct them. Amazing! My husband couldn’t believe it when he saw me next. His mute wife could now easily carry on a conversation! Friends and the rest of my family were equally surprised with the rapid restoration of my speech. I couldn’t explain it, and at that point, I fully expected to spend the rest of my life looking into a mirror whenever I spoke. Thankfully, my brain re-learned to make the connection between thoughts and speech and now the mirror is rarely needed. There are still times when my brain falters, like during times of fatigue or if I’m struggling with a migraine, but a mirror will always re-boot my function.
Now that my speech problem was solved, I approached the issue of teaching my legs how to walk again. Since the mirror had been so successful for my speech, my plan was to try the same trick to re-learn how to walk. My husband bought a full-length mirror and set it up in front of our treadmill. As I hung on to the handrails for dear life, I focused on those legs in the mirror and let my brain direct them. It worked! Daily I increased my time on the treadmill and within a week, I could walk again! It seemed miraculous that I could go from total disability to restored function in such a short time. I was at a loss to explain it. My neuropsychologist and I both had to accept that my symptoms were due to Functional Neurological Disorder.
In one sense, my recovery was incredibly fast, but that’s only part of the story. I never want FND to control my life again, so I began a quest to better understand my brain and how to optimize its function. Although my brain still has a tendency to disconnect at times, I am finding ways to strengthen the connections.
If you have Functional Neurological Disorder, I can’t promise that the things I have discovered can restore your connections, but it is my sincere hope that you can find ways to function better. My goal is to continue to explore ways to heal and pass those along. If you have found ways to help yourself manage FND, please share them with me!
30 Comments
Yay!! Great ideas to try
Thank you this is so helpful to me my legs are weak but I’ve only lost use once . I call them Humpty Dumpty legs as often I don’t feel they are part of me
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Now positive I suffered vertigo and Tinnitis and have lost a lot hearing in my left ear ( I did have shingles just before )
What is amazing is if I lie down and put utube hairdryer sound on it goes within 5 mins and I can settle . I can’t rush back into things but I can function quicker
Yay!! Great ideas to try
Best of luck to you, Louise!
Max
Amazing! I will have to try the mirror technique. Thank you for sharing!
I hope it helps you, Sara!
Max
When my daughter had this, she would go mute after every seizure. Not sure how we came up with the idea, but she began to speak with a foreign (British) accent… and that was the only way she could speak.
Thanks for sharing, Dani! Interesting observation! I think that it’s fascinating that different areas of our brains may work when one area starts malfunctioning. It reminds me of a woman from Australia with FND who couldn’t walk, but found she could run. Thanks for the reminder to try a task just a little differently when we are struggling with function.
I can run and walk backwards and resort to this when legs won’t move. Also walking up and down a kerb makes my walk smooth and flowing. Marching helps too.
Great discoveries, Louise! Sometimes just “mixing up” the usual movement with a little twist makes all the difference!
I’m going to try the mirror for walking. Did your legs work straight away like your lips?
Yes, fairly quickly. My brain recognized the gait was dysfunctional and began to correct it. Visualize normal walking patterns. See it in your mind and let it happen in the mirror. Good luck!
Did you experience functional weaknesses in your legs too?
Hi Louise,
Everyone has different symptoms. I find it counterproductive to discuss specific symptoms, but encourage you to instead focus on discovering the things that help your body be in a calm, relaxed state and find activities that promote better connection between your mind and body. Symptoms can be frightening and disabling, but sometimes thinking about them too much can get us “stuck”in dysfunctional patterns. I’ll write more about this in the future. Keep reading! Best of luck in your recovery!
Max
I have learned that when my whole body starts to shake from the inside out instead of sitting which usually leaves me unable to walk after the shaking stops. I now walk through the shaking trying to in some way rewire that connection. Eventually I stop shaking but I’m also still able to walk.
Also I find the more you worry or get anxiety about what’s happening, the worse the symptoms get.
Thanks for your comments and suggestions, Robin. Great tips!
Max
I just found your posts today. I feel almost joyous! Your story is such a parallel to mine. I am a bit older I think and my story began in earnest 2 1/2 years ago the same way. I wish I could hug you. I feel I can hear you speak to me and you do so without YELLING. Typing is quite a task for me but Thank you for being there! I have been so lonely.
I’m so glad you found me, Lillian, and I’m hugging you right back! FND can be such a lonely journey. It doesn’t seem to make sense. Sadly, many of us are treated poorly by the medical community. Most of them don’t understand it either. There’s nothing like a shared experience to begin to see that ray of light. Looking forward to getting to know you better!
Max
Not wishing to be a copycat but just wanted to say that I wish I could hug you too!
6 years ago I felt superfit and then a sudden unexpected diagnosis of kidney cancer (98% chance) overturned my world. After the removal of the kidney it was found to be benign but some tiny other benign tumours, which have a name, are apparently present in my other kidney. This frightened the life out of me.
Whilst attempting to grab back as much of me as possible I started exercising even more and then injured my foot on the edge of a swimming pool quite badly 4 years ago. Having lost some faith in the medical profession I went to see no-one about it but hobbled and limped a bit for a while and then took up on a walking holiday 2 months later. It was after this that my problems began with my foot initially, and although this is still my biggest issue the pain and weakness affects the whole leg and lower back.
I truly have looked and watched my mysterious, evolving symptoms in too much detail as I am wont to do with many things in life. It feels as if I have been bounced from one consultant to another because no-one understands and it is too time consuming or not “their thing” to try to delve further in looking for help for me. With each bouncing I I felt I therefore must look harder myself. This has made me worse. I see that.
There really is a gap between the understanding of body and brain as you so rightly describe. The neurologists do not link up feeling and emotion into their analysis of nerves or if they do they think the problem then lies within another field – psychiatry, which is not their field. What is in the middle of the two is the grey unfathomed area which is desperate to be understood.
I love all of your blog. You write with such clarity and insight. I read it often because it perks me up.
Of late I am focusing upon remembering that I really do have strong legs, telling myself that whilst accepting their tiredness and need to rest and recover. Also I like your visualisation idea. Although I can’t always “get” a visualisation of me walking with soft legs across a lawn, I try… and find that I can feel/visualise the slightly wet grass on the soles of my feet as they gently roll and unfold each step. This is a thought worth practising.
I have plenty of hugs for everyone, Elaine! You describe your journey so eloquently. I feel your pain of being dismissed and misunderstood. It sounds like you are working hard to do what you can to face FND with courage and determination. I wish you all the best on your journey.
Max
Thank you so much for sharing your story and for this blog. I stumbled upon it while searching for something about FND. I was just diagnosed for certain 2 wks ago and started physical therapy where I am learning distraction techniques right now and am also doing psychotherapy.
I read your entry about paying attention and it was spot on. At my eval with PT last week, she had me do a distraction technique while trying to do a heel toe test and I was shocked that it worked on the 1st try….not perfectly…but better.
I also didn’t realize until coming here that my sensitivity to sound could be related. I’m going to talk to my neurologist/therapist about that and am relieved that there is a reason!
Thank you for the advocacy work you do. It’s so helpful!
Thank you, Christine! I’m so glad that you found my blog and that it resonates with you.
All the best in your healing journey, Max
Thank you. THANK YOU. I don’t have a treadmill but I’m getting a mirror ASAP. I’m starting ketamine therapy soon too.
You provided me with something I haven’t felt in a long while…HOPE.
Sincerely,
Jacqui
Thank you so much for your kind comment, Jacqui! Hope is so important for recovery, maybe the most important piece. I’m rooting for you!
Best wishes for your health,
Max
Boy am I happy to have found this blog. I am a fit physician and I have been struggling with FND for several years with a gait disorder that has accelerated over the last 2 years and now I fall 4-5 times per day with injuries. I ran 60 miles a week for 40 years and loved it but had to give it up last year when i began to fall so many times-ended up in the hospital for a week with a septic knee bursitis from an infected wound requiring multiple debridements and skin grafts, PICC line antibiotics, a wound vac and 5 months of healing. I now walk with hiking poles but am quite limited in what surfaces and areas I can walk on due to extreme fear of falling. I fall when I think about my gait and the possibility of falling. I walk poretty normally when I hold onto my husbands hand or in a hallway where i feel safe.
I did the 5 day Best program at the Mayo in March 2022 and improved a bit but have since regresesd I am having a difficult time finding help- especially PT-FND retraining. I continue to work full time so it is difficult for me to go to a three week intensive program. Do you have any ideas about ow to put together FND treatment with a PT not necessarily having to go far from home? My husband has been wonderful helping me-he is a physical medicine and rehabilitation physician yet he has no training in this and it’s not fait to burden him so much1 I live in the San francisco Bay area and it’s hard to believe that treatment here for FND is seemingly nonexistent.
Any thoughts you may have would be greatly appreciated.
Hi Paula,
My friend Julie Hershberg DPT at reactivept.com was kind enough to make a couple of recommendations. She says the outpatient team at UCSF is FND-informed. She also highly recommends Rupali Vyas DPT at congruencept.com.
Good luck!
Max
Hi Paula!
I’m in the exact situation as you, gait disorder and fall more or less everyday. I always wear a helmet and elbow protection. I also work full time. I’m sorry for you but happy to hear about not being the only one with these problems …
If you’d like to contact me I would likewise be happy!
Wondering if anyone has experienced drooping of the eyes with this and what they have done for it?
Hi Angie, That’s not something I’ve personally experienced. It might be worth a check with . I’ve found that working to keep my nervous system relaxed and regulated in general helps with everything. Good luck!
Max