I was diagnosed with fine motor coordination issues at the age of 4, depression when I was 9 years old, and with conversion disorder(now better called Functional Neurological Disorder) when I was 23.  I spent my entire scholastic career being a special needs student and was frequently in honors and advanced placement classes.  

Yes, that contradicts the usual expectations, and that type of contradiction seems to be a big theme in my life.  I made a resolution very early on in my life that I would not let other people’s expectations control me, and that I would always strive to be the best ‘me’ that I could be, no matter how far or near societal expectations that might be.  

I have been striving for that goal physically, mentally, emotionally, academically and professionally throughout my life, despite a variety of setbacks.  I hope that this goal and determination will resonate with you, and help you on your own journey.

What is Functional Neurological Disorder(FND)?

FND is a neurological condition where stress causes physical reactions, sometimes extreme ones. In my case stress(especially emotional stress) ends up being expressed physically by my body.  

Recent research suggests that FND is often, but not always, a response to trauma(physical or emotional), and that the part of the brain affected is associated with knowledge of actions. In other words, we literally don’t know what our hands(or legs, or eyes, or whatever) are doing, and don’t know that our brains signaled for it. It’s a bit disconcerting to not know if your body will follow your instructions on a regular basis.

They have also found structural changes in the brain, mostly in areas that process both physical and emotional responses.

My diagnosis journey felt like going through a maze much of the time

We all have an overlap between our bodily function and our emotions(examples include sweaty palms or ‘butterflies in the stomach’ when anxious), but with FND, it’s extremely exaggerated, with symptoms including urinary incontinence, limb paralysis, pain with no discernible cause, non-epileptic seizures, aphasia(inability to speak), irregular temperature response, cognitive fog, stroke-like symptoms, and many others.  

The symptoms are not consistent(most people have slightly different sets of symptoms), and can shift unexpectedly(in each person), often in response to changes in stress. More details can be found on www.fndhope.org.

FND was known as conversion disorder when I was first diagnosed, which is generally labeled as a mental illness, and was assumed to occur primarily in patients with other mental health conditions.

The reality is that FND is right on the boundary between psychiatry and a neurology.  The precise definition, cause, and treatment is still debated among professionals.  

While FND is actually the most common reason people see a neurologist(headaches are the second), many neurologists either use FND as an alternative to admitting ignorance(I tried everything I can think of so it’s FND, go see a shrink) or refuse to acknowledge the condition at all(either you’re faking or it’s MS/Ehlers Danlos/Parkinsons/fibromyalgia/etc). I was fortunate to find an FND-aware neurologist as quickly as I did, and have heard a lot of medical horror stories from fellow FNDers.

Some people use the terms FND and conversion disorder interchangeably, while some argue that FND is the umbrella term, and conversion disorder is a specific form of FND.

In any case, psychiatrists weren’t interested because it was too neurological, and neurologists stamped it with the psychosomatic label and refused to look into it more, so the condition hadn’t been researched much until recently(my diagnosis was made around the time when neurologists were starting to get interested, and leaning towards claiming FND/Conversion Disorder as their field of study.

Younger neurologists have dropped the bias against the psychiatric definition, given it a snazzy new name, and are working on the basic research that was completed on most neurological disorders long ago. As you can tell from the studies cited, they are making progress!

 In my case, the psychological definition is a very good fit for my neurological symptoms, so the distinction bothers me less than it does many who share my diagnosis.

Symptoms

My symptoms have primarily been what’s referred to as ‘myoclonic episodes’, which translates into my muscles doing unexpected things, sometimes repeatedly, at unexpected times.  

Early on, my body would occasionally convulse, I would often rock back and forth, sometimes with such violence that I pulled muscles.  I also had almost a week of constant full-bodied tremoring, which led to a week-long hospital stay and eventually my referral to Dr. Mazzoni, who correctly diagnosed me.  

My legs will occasionally get ‘stuck’ straight, or collapse out from under me.  It’s pretty disconcerting and takes a while to adjust to the new limits.  

All my symptoms are stress-reactive, so positive or negative changes in my mindset, life quality, or environment runs the risk of causing my symptoms to shift.  

In sum: I have an unusual condition that many doctors don’t know about, whose cause is unclear(but often associated with trauma), was diagnosed as a mental illness, but presents mostly as a physical one, and is now recognized as a neurological condition.

 My symptoms occur unexpectedly for brief periods of time, and when I am not symptomatic, I appear completely healthy.

Doctor experiences

I spent 3 years without a diagnosis.

 I saw multiple neurologists who variously told me I was having a stress reaction, epilepsy, or that I’d suffered at UTI that had randomly damaged my bladder function.  

Oh man, I was so tired of hospitals and large doctor’s offices by the time I was diagnosed!

I saw neurologists and urologists for the bladder symptoms and was hospitalized when I shifted to constant tremoring symptoms.  

When I finally met Dr. Mazzoni at Columbia Presbyterian it was a huge relief.  He diagnosed me correctly on my first visit and was my primary medical support for 11 years.  

He managed my medication and discussed symptoms, treatment, and my mindset with me.  I returned to see a psychologist shortly after my diagnosis.  

I actually am seeing that therapist again now, though a few years into my treatment, Dr. Mazzoni connected me with a behavioral specialist who he thought might be particularly helpful.  I stayed with that therapist for 8 years.  

I also was, as energy allowed, searching for new or additional specialists to help me manage my symptoms, or confirm that new issues were conversion disorder/FND as opposed to a new, unrelated medical problem.

After many nightmarish doctor experiences and some amazingly good ones, I have enough experience with doctors to quickly get the sense if they are the right doctor for me

My rule of thumb is: if the doctor isn’t willing or able to understand my condition, I need find a doctor who does.  

I have had the distinction of being ‘medically interesting’ since my diagnosis, which is a source of embarrassment and pride for me, as it’s another thing that makes me unique.  

In 2016, I learned of an amazing and relatively new intensive rehab program specifically for FND and jumped on it.   It was transformational, and I emerged with much better control over my symptoms than I had ever had before.

turquise blue banner ad.  On the left is a picture of Alison's face.  On the far right is the Thriving While Disabled logo.  In the middle, the text reads 'You deserve to thrive with your FND' and in smaller text 'click here to learn more!'

Where I am now

I live in the Bayshore area of New Jersey, with my partner, Al, and our two cats, Nigel and Rorschach.

Nigel and Rorschach shortly after we adopted them. Nigel is brown tabby, and Rorschach is white and gray.

We live right next to a nice walking trail, and a short drive from the Hazlet train station, and from there, I can get to New York city easily, though it is a bit of a time commitment.  

I have been utilizing the public transportation systems in our area for most of my adult life, and so have gotten very familiar with the processes, scheduling, and planning that goes into it.

I’m aware that I’m pretty lucky in having so much transportation available to me, but that also means I’m very aware of the relative benefits and issues with each mode of transportation – both physically and emotionally.  

I have more recently been doing a bit of traveling using Uber and Lyft and have thoughts on those as well.  I’ve also done some exploration of access link and other medical-based transportation options.   

I have been an avid reader, especially fantasy and science fiction, much of my life, though I have been through multi-year periods where my symptoms made enjoying that habit nearly impossible.  

When I can, I love walking in nature, learning more about ecosystem science, keeping up with climate change information and biological diversity, as well as interesting information about unusual organisms.  

I like learning how pieces fit together and understanding how entire systems work – whether the pieces and systems are environmental/ecological, social, cultural, organizational, or some combination of the above. 

I also am very concerned about equality and fair treatment of all types of minorities.  People with disabilities are in fact the largest minority group in the US.

I have a professional background in biology, Geographic Information Systems, and organizational change management.  

I am active in Birequest, a discussion group about bisexuality located in Manhattan.  I am very concerned about physical, mental, emotional, and sexual safety, the power of saying ‘no’, and the importance of clear communication.   

I think a lot about social justice, intersectional identities, and privilege in all its forms.  I think a lot about ingroups and outgroups and value diversity highly.

Beliefs and self-support

I spent many years seeing and talking with doctors and therapists to better understand myself and my condition, and am comfortable reading a variety of scientific papers, which I have used to further my understanding of my condition and, more recently, Al’s.

I have many years of practice reading and understanding research papers!

I have also done a lot of research into mindfulness, resilience, healthy eating, and self-care.  I couldn’t really exercise regularly due to my symptoms until after the MoRe program, so now I’m also working on establishing good exercise and fitness goals and processes.

I tend to anticipate potential problems and find solutions that allow me to achieve my goals despite the hurdles in the way.  I want to help you do this too.

I firmly believe that what I can do is primarily limited by my own mindset.  Since my diagnosis, I have trained myself in at least two different professional disciplines, and have worked a variety of skilled jobs.  

I have attended and completed graduate school.  

I have mostly supported myself financially, by utilizing government programs(yes, I’m on SSDI), so I am very familiar with living on a very limited budget, and with fighting through bureaucracies.  

When I have been in stable and manageable points with my symptoms, I have worked, and I spend a lot of time thinking about what my next professional project would be.  This blog is my new one, and I would like to share what I have learned with you!

I am here to share my knowledge and experience from living in situations that have made me question my self-worth, and I want to show you how I got it back.  

What follows is a collection of self-help, practical solutions, and background ideas to enable you to better understand yourself and your life, and help you solve your problems so you can improve your quality of life.

This will hopefully help you visualize and live your dreams.  I hope you will join me on this journey!

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2 Comments

  1. I’ve known Alison professionally for 10 years now, and have admired her since our first meeting. We’ve sat together at conferences, and I’ve been next to her when she’s suffered through the rocking spasm publicly. She’s shown up wearing leg braces to venues that are not serviced by pubic transportation. The lady is tough.
    She’s also smart, funny, charming, glib and beautiful. That’s why I choose to be seated next to her at professional gatherings. The main thing I admire about Alison is her eternally optimistic attitude. I understand that’s an outward facing thing, but I’ve never seen her in an other than an energetic, enthusiastic mood; even when it’s obvious that she’s in a less than optimum place either physically or financially. She inspires me by just being around her.
    To all who read this blog: if anyone can help navigate through the labyrinth of assistance and healthcare, it’s Alison. When I eventually need this service, I will be contacting my friend.
    To Alison: As long as we’ve known each other, this is the first time I’ve known of your disorder and diagnosis – I figured if you wanted me to know, you’d tell me; you probably figured I knew since I never asked. Thanks for sharing the full story so publicly. You have my love, support, and encouragement in this endeavor. Much success to you, my dear.

    1. Web, thank you so much for your kind words! I have gone through phases in openness about FND/conversion disorder in my professional life. When asked, I’ve often mentioned the name or a rough description of how it works. For the first year, I was told it could go away at any time, and not to do any research, so I had nothing to tell people! By the time we met, I did have answers, and was more comfortable talking, but generally when somebody asked. I think ‘movement disorder’ and ‘stress-responsive movement disorder’ were my go-to’s. They still are, really, but I get asked much less often! Thank you again, Web – your comments are much appreciated!

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