Dr. Alfonso Fasano, a neurologist at the Morton and Gloria Shulman Movement Disorders Centre at Toronto Western Hospital, discusses functional tremors. (Video: UHN)

I still haven't told my family that I have a functional tremor. Honestly, it took me a while to be able to tell myself.

The tremors in my hands are hard to miss. They've certainly left a trail of broken plates, ruined clothes and uncomfortable, shocked stares.

But the idea of sourcing all that disruption in my life to a functional tremor was a difficult one to face. Functional tremors aren't "real," after all. They're just in your head, imagined. They mean something is "wrong" with you as a person; you could get over them if you really wanted to. The toxic self-blame that often comes with this condition can be as debilitating as the tremors themselves.

What do I mean by a "functional" tremor? And what does it mean when people – mistakenly – say they aren't "real"?

For me, a functional tremor basically means my hands shake; sometimes a little, and sometimes a lot. If you are familiar with Parkinson's disease (PD), then you know that people with PD can experience involuntary movements and consistent shaking, called tremor.

But, unlike people diagnosed with PD, mine can't be attributed to a neurological disease. Functional tremor is still not completely understood, but its place as a psychological disorder has been established.

Many people say they aren't 'real'

While tremors associated with neurological disease, known as essential or dystonic tremors, can be more or less sourced within the brain, functional tremors are what can be called inorganic. There's nothing to see structurally in the brain, as far as the underlying cause of signals not processing correctly in the nervous system. To make things more complicated, functional tremor can so closely resemble dystonic or essential tremors, even doctors can be confused by the cause of the tremor.

Unfortunately, that difficulty of attribution is why many people say they aren't "real." Conditions with a strong psychological component can be difficult to accept, both by others and even yourself. There is a lingering belief that such problems somehow reflect personal weakness, in thoughts or character.

It still takes effort for me to get past that point of view: past a sense of shame and helplessness. I know there are other people trying to deal with their condition both physically and psychologically. My hope is that talking about my own experience will provide some encouragement towards personal acceptance and seeking proper treatment.

I can remember having slight tremors in my hands as early as my teenage years, but they never seemed important enough to do anything about, and no one really noticed. They intensified as the years passed, though. Stress, anxiety and anger seemed to make the tremors worse, but they would often come and go on their own regardless of my mood, for what felt like no reason at all. The tremors became impossible to ignore in my mid-20s, hitting harder after hospital visits and surgeries for Crohn's disease.  

Everyday activities like signing my name, reading, typing, lifting a glass to my mouth, carrying a bowl of cereal, and, especially, drinking or eating anything hot like tea or soup, verged on next to impossible when the tremors were active. There were times where it felt like even trying to use a fork on something small started the tremors going in the first place. I tried to just do things very slowly, or grip more tightly, trying to force my hands still.

Mark’s arm and hand writing
Mark Kay's tremor made every day activities like writing, drinking water and eating with utensils very difficult. A diagnosis of functional tremor helped put him on the path of better treatment for his condition. (Photo: UHN)

I started getting looks and questions that made me feel awkward and freakish. I initially tried to avoid any situation that seemed to trigger the shaking which, over the years, grew into reluctance towards going to work and any social interaction.

My family doctor referred me to a neurologist who diagnosed me with what they called a benign essential tremor; basically that something in the structure of my brain was causing the nerves in my hands and arms to act wrongly sometimes. The diagnosis was a relief, it gave me an explanation for those times when, say, my five-year-old niece would stare at me in confusion while I tried to get my hands under control. It's not my fault, I'm just sick I would tell her.

But the years went by and the tremors got worse, and all the pills and tests didn't seem to be doing anything other than making me miserable and desperate at their failure. 

I went through several different neurologists, and was at the point of applying to be considered for various experimental studies. I was also on the verge of getting some pretty serious brain surgery, with major implications, in order to get rid of this tremor.

Finally, it was at the Morton and Gloria Shulman Movement Disorders Centre at Toronto Western Hospital where the evaluating doctor suggested my problems stemmed from a functional tremor.

Unlike a benign essential tremor, with functional tremor there was nothing that could be pinpointed and treated in the brain as the source of the shaking in my hands and arms. This is why the treatments I had been receiving up to that point weren't working. The diagnosis made sense, but it took some time for me to fully accept, if only for the immediate, crushing feeling of learning that my issues appeared to be all in my head.

This is not your fault. You're not crazy

As a society, we're still working towards a broader acceptance of psychological conditions having the same validity as a problem that can be treated with surgery. I almost used the word "tangible" to describe the difference, just then, as though one exists more than the other. My own doctor finds himself using the word real when explaining the difference sometimes, then immediately apologizing because he knows my condition is real. It's a rough state of affairs, even in our own heads. 

So please let me assure you, functional tremors are entirely real. For those with functional tremor, your imagination is not causing shaking in your arms, legs, hands, feet, head or weakness in your body. There is nothing about you that wants this to be happening. This is not your fault. You're not crazy. There is help out there for you and people eager and qualified to provide it – without you having to take many different medications or even go as far as getting brain surgery.

You're not alone.

It's important to accept the reality of the condition not just for reasons of healthy self-image, but to avoid misdiagnosis. Essential and dystonic tremors can respond to surgery (with some exciting new developments even now, as my mom loves to keep telling me). Functional tremors don't. The permanent ramifications of needless procedures could be its own book.

Proper support, treatment and acceptance are out there

The importance of being thorough and patient in medical testing for the condition causing a movement disorder, in having a willingness to accept the diagnosis of functional tremor when it is made, is hard to overstate.

I want to say "it's as easy as asking 'are you sure this isn't a functional tremor?'" but that's not easy to ask at all, not really. If it was, I wouldn't have been shrugging along with my family assuming I have an essential tremor as a path of personal least resistance.

On the other hand, I'm writing this article, and that's something I wouldn't have envisioned doing even a year ago as far as my own progress. The idea of a long-term psychological disorder can be a deeply depressing one (and depression may in fact be linked to or aggravating an existing functional tremor). You might judge yourself for having the condition, or fear the judgement of others. But that fear is only keeping you from the treatment and improvement that is available.

Everything from regular psychological therapy, to medication for anxiety or depression, body mindfulness exercises and even physiotherapy can help mitigate the severity of a functional tremor. These are all tangible treatments for a tangible problem. And while it may take some time to feel an impact, they do help.

I still have issues with tremors, and I probably always will to some degree, but compared to even two or three years ago, they're much less intense. I'm able to get in some work and interact socially in ways that previously seemed impossible, even in the face of other personal medical conditions. I'm able to write this article, for one thing.

Proper support, treatment and acceptance are out there. You just have to start with a measure of self-acceptance and awareness. 

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