Shall We Talk?

The online dating roller coaster can lurch chills down the spine of the most seasoned Lolita, which I most certainly am not. Throwing my profile into the proverbial haystack hoping to find the needle of my dreams is an exercise of patience on the edge of insanity. Typically, my inbox is populated with suitors I’ll categorize as spam.

As you can see from this blog, I recently joined the school of “Laying It On The Line.” I aspire to shout my Dystonia from every street corner and rooftop…and also on my JDate public offering. While awaiting approval of a new essay featuring You Know Who, I broached my approach with friends, who stood united in their negative feedback. I guess the online dating marketplace isn’t ready for full disease disclosure, which would more than separate the princes from the frogs. Grudgingly, I concede sharing health details is best practiced face to face after we’ve discerned a genuine mutual interest.

On the rare occasions when I stumble upon a prospective Mr. Right, I harness my inclination to unload my Dystonia during our getting to know you minutia. Part of me is thrilled to live such a fanciful existence. No speaking, no walking, if only we could flip cyber reality with everyday life! Eden doesn’t last for long. After a few paragraphs of swordplay, most men are eager to leap to the phone and hear my voice, producing an explosion of panic that’s a 50 lb. rock at the pit of my stomach. Used to flipping cushy sentences in emails and IMs, telephone talk is a venture into an uncomfortable world.

When required to fast forward the inevitable, I prefer making the call myself, allowing the illusion of control as I improve my speech in insignificant increments with a ridiculous routine of nasal hydration, environmental manipulation, vocal preparation and lactose deprivation. Invariably, I reach their voicemail. Shouldn’t have sacrificed that latte at Starbucks.

All this self-created craziness is wrought with irony. Even when I bring up my speech, I’m sharing the unavoidably obvious. My practical purpose is to halt arbitrary conclusions in their tracks and interpose the stamp of my official record. Let’s face reality. If I don’t empower telephone beaux to serenade me with a choral refrain of “what did you say,” I’m wasting unnecessary efforts impressing my phone!

Introducing My Meds

Medications “treating” Dystonia are like mediocre relationships – we make do notwithstanding their pitfalls because there’s nothing better waiting on the horizon. Admittedly, we tend to engage in a bit of a juggling act, no one pill supplying everything we need. Similar to Romeo and Juliet, we lack the official seal of approval and must carry on our affaires de coeur “off label.”

My main squeeze is Trihexyphenidyl, a mouthful. He’s famously known as Artane but you can call him Art. Think of him as the steadying influence in my life. His ethnicity is anticholinergic. No, he’s not from Anticholinergia but harkens from the same family as your friendly allergy meds, blocking the work of a neurotransmitter called acetylcholine that seems to have a hand in screwing up my muscles. Just as women haven’t figured out men, no one knows why Art’s so effective. Believe me, not every Dystonia patient falls under his spell. Our relationship is fraught with issues – all his doing – but I’m not giving up on him until someone better comes along.

Sinemet is an old flame I keep around for kicks (or avoidance thereof). Our chemistry’s rather simple: he introduces a pop of levodopa to help me synthesize dopamine, a sine qua non for treating Parkinson’s – on loan to little sister and no one’s miracle cure. The underlying secret to our success remains a mystery (neurotransmitter balance perhaps) but why fiddle with a good thing?

Finally, meet Zonegran (“Z”). His politics include anti seizure, which is an interesting perspective on the machinations of my muscles. Z is a relative newcomer to my stable of suitors. He replaced a childhood sweetheart in my mad-capped game of Spin The Bottle and I never paused to consider whether I needed anyone new in my life.

This medical “three-way” adds a crazy sideshow to my three-ring circus. Like all Dystonia therapies, they wax far from ideal, but they’re the ones I love to hate and hate to love!


“May the Force be with you” sums things up pretty well except for one slight detail: this ever-present “Force” usually goes against me. I lead the Jedi Knights in an epic battle waged for control of my Universe, the Dystonic Sith summoning the “dark side” to seize power, gaining strength by preying upon my negative emotions.

Ironic inconsistency is expected. When I visit my neurologist, my brain somehow instructs my muscles to behave. I pace the hallways with an entourage of physicians, silently willing my muscles to act up and take responsibility for their persistent shenanigans. On dates – talk about nerves – I tip to the other end of the spectrum. Maybe next time, I should invite my neurologist to join us for drinks. Murphy’s Law meet my Dystonia!

The unpredictable nature of Dystonia is a constant thorn in my side. Stairs pose an eternal question mark. Walking confronts me with a never-ending surprise party. One minute I’m strolling prettily, nary a care. Then I remember my legs – shazam, we have movement. Occasionally, my foot abruptly decides to make an illegal U-turn, leaving me stranded on a street corner waiting for my yin to find its yang. If only I could send my limbs to Driver’s Ed to reduce the Dystonia points on my license!

The Movement Disorders Examination

My Fabulous Neurologist!

Touch your finger to your nose, then straight out towards the finger puppet. Oops, that was pediatric neurology. Feet on the floor, heel – toe, heel – toe. Now we’re going to draw spirals and write “today is a sunny day” while my arm engages in kinematic calisthenics. Then it’s time to strut my stuff. Occasionally, I even get to star in my own movie without a screen test. Julia Roberts, eat your heart out. Meanwhile, I daydream about shopping with my neurologist at Bloomingdale’s, where she lectures the evil saleslady on how that stunner of a cocktail dress will most definitely not be paired with heels but looks spectacular with my Aerosoles!

Once this mini workout session is concluded, we gab about the state of my movement affairs and the tease of a better tomorrow. Perhaps there’s a fresh-faced research study involving animal models (no, not Miss Piggy prancing down a runway in Versace). While the promise of medical science is encouraging, my tastes run to available and personally impactful therapeutics. Our version of walking on the wild side is to fiddle with my meds by s-l-o-w-l-y changing the dosage in excruciatingly small increments, a regimen that doesn’t sit well with my ever-burgeoning impatience. Really, is one tiny pill developed specifically for Dystonia too much to ask?

May I Have A Glass Of Water?

I wish I could take you to the horror center in my brain when I speak: that voice can’t be me, perhaps I’ve been invaded by body snatchers using an intergalactic language. Bungee jumping holds greater appeal than articulating certain words! Case in point: I’m in a restaurant and notice my empty water glass, triggering anticipatory anxiety. If feeling venturesome, I ask for a glass of water but this harmless little phrase doesn’t glide off my tongue as pristinely as it appears in writing. The greater my effort, the more tongue-tied I become until I’m reduced to a single word “wa-ter” or pointing at my empty glass while attempting telepathic communication. Amid this flood of frustration, remaining parched emerges as an attractive alternative.

My verbal penalties often boot me into the land of chronic misunderstanding and compel adjustments in my oration. Oppressed from expressing my inner eloquence, I abdicate the richness and grandeur of the English language in favor of a vastly abridged dictionary that requires massive downgrades in my self-expectations. I’m all too aware of my listener’s level of understanding by facial expression. I read utter lack of comprehension accompanied by resolute refusal to ask me to repeat myself, resulting in a curiously one-sided conversation that ostensibly involves two people. Even proactively restating my words doesn’t always accomplish a meeting of the minds. Anyone care for a game of charades?

Who’s In Control?

A neuroscientist may tell you the problem rests with a far off galaxy in my brain named Basal Ganglia, denying me control of all my movements. I prefer to address this question on the metaphysical realm. After all, I’m a self-acknowledged control freak. I like to think I’m running the show but my body has a different opinion, flexing its muscles with every opportunity to put me in my place. Modifications in order, I try a team approach and transform into a coach hurling encouragements to get the best efforts out of my players – an excellent motivational tactic that unfortunately fails in its execution.

Dystonia is a never-ending refusal to surrender to body parts that won’t follow my “suggestions.” I find it absolutely bizarre how my left foot appears convinced of the “rightness” of its motion, like a stubborn 5-year-old insisting on walking a strange Indian war dance. How about mind over matter? Hmmm. I attempt thinking my foot into a smooth gliding step. No dice.

I’m My Own Spokesperson

Super Spokeswoman!

It’s interesting, with my very curable bout of thyroid cancer, I never had to explain how cancer involved the uncontrolled replication of cells in a phenomenon called a malignant tumor. Instead, I’d answer informed questions like has it metastasized, will you need radiation? What a relief. With my Dystonia, I’m required to function as a walking professor of neurology, not to mention my own personal PR professional, services unpaid. Further, my cancer was actually cured and my doctor didn’t work in the Dark Ages. From that perspective, it was fabulous.

For much of my life, I shirked my PR duties, reluctant to announce let alone explain my disease and able to hide my walking with all sorts of dysfunctional tricks like running from class to class as a child and wearing long skirts as a young (and not so young) adult. Now I feel a compulsion to delve into the mysteries of my gait and speech, shifting control of people’s perceptions and empowering myself to address the silent questions others may be too polite to ask. I’m prepared for the blank stares “Dystonia” elicits. If I don’t speak up for my disease, who will?

You’ve Never Worn Heels?

My Dystonia began when I was 8-1/2. I can’t summon a memory of walking or writing “normally.” While my speech issues started later, for years I’ve battled a lazy tongue that’s chronically late for almost every destination in my mouth.

In some odd twist, the abnormal workings of my body are my “normal” state of affairs, with the  better days serving as benchmarks. As for heels, I’ve had my fantasy moments in shoe stores (nary a stiletto) that never extended beyond a few shaky steps!

Life On Venus

The physical experience of movement disorder can be awkward, uncomfortable, stressful, frustrating, even embarrassing…all of which tend to exacerbate symptoms, a vicious cycle. Sometimes the only way to cope is to find humor in the situation.

This blog is an invitation into my world for a topsy-turvy ride replete with involuntarily contracting muscles caused by a gene named DYT1 that messes with a protein called Torsin A. In my peculiar game of Twister, the spinner’s out of control:  left leg blue–red–yellow (perhaps even purple, off the board!), right arm green–no–red, right leg yellow–blue–green, left arm red–wait–blue. All my limbs are active players, some with feature roles.

You Have Dystonia?

I have D-Y-S-T-O-N-I-A? No, it’s not a former Soviet Socialist Republic but a neurological movement disorder.

So what is Dystonia? Let’s set aside medical formalities and fast-forward to practical realities. Imagine you’re trying to jot down a grocery list and, quite inconveniently, someone jerks your elbow up and down, making it difficult – if not impossible – to control your writing. Or maybe you tackle something complicated like walking across a room. You lift your leg to begin that first step when a mischievous troll screws up your balance by pulling your foot inward, causing you to land on the side of your foot and desperately search for stability. Simultaneously, some imp twists your knee while your hip dips and swings in a motion that would swirl a hula-hoop.

Welcome to my Dystonia!