The latest experimentation with my meds sent my walking into a funk, leading me to a newfound appreciation of why I tolerate their medical mischief. It also rendered me significantly less independently mobile – in need of what I shall call a “new friend” – landing me smack in the middle of a vigorous debate between my good sense and inner stubborn mule. Seems my resistance to special assistance is alive and kicking. Notwithstanding 40+ years living with Dystonia, I cling to a foolish insistence I’m no different from everyone else.
As a cantankerous attitude sought to assert itself, complications immediately ensued when I discovered the surprising rewards of life with a walker. Let’s start with my ability to perch comfortably at random street corners – not a bench in sight – for a much-welcomed respite. It dawned on me, not only needn’t I fear wiping out from an unruly twist of foot…or exhaustion…but I now enjoy a custom seat at any outdoor venue. Further, thanks to my visible aid, New Yorkers have become more generous with their assistance.
Where I expected shock from friends, I encountered awe over the creature comforts at my fingertips. Indeed, they quickly jumped on the bandwagon, appropriating space for handbags and parcels – triggering an onslaught of speculation about the moneymaking potential of my new adventure. Inject a flash of ingenuity and my walker may very well present a portable gold mine.
As for me, I often mistake myself for a mother out for a spin with stroller in tow…only this femme is walking herself!
Too often, I find myself apologetic over hurdles that come with Dystonia: I’m sorry it’s difficult to understand me…I can’t walk across the park…I need more time to finish this form. Worse are the silent apologies I make to myself. Why do I perpetually raise excuses for my condition as if responsibility for this annoying hoopla falls squarely on my shoulders? I possess greater control over my runaway temper than my speech or my stride. Dystonia arrived as an intruder on my doorstep, robbing me of some of my dearest possessions: clear speech, even gait, smooth handwriting, contraction-free enjoyment of life.
The perpetrators of this medical crime lurk deep inside my brain committing all kinds of chemical mischief. I’ve participated in a bunch of “line-ups” – ironically, I’m the one who’s scrutinized – but while a culprit surfaces in a blood test, the actus reus can’t be captured in a pretty picture and my “head shots” are dead-end streets. We know Mr. DYT1, my uninvited houseguest, orchestrates a mutant ninja protein – Torsin A – who’s ostensibly a key player in a conspiracy of neurological proportion involving a perplexing hoist of my brain with a modus operandi stumping even the most seasoned investigators. To complicate matters, a host of suspect genes orchestrating their own villainous behaviors are implicated in different forms of Dystonia.
On the bright side, I function as my own “neighborhood patrol,” doing my best to combat an ongoing bodily offense. I undertake every effort to keep the crime labs busy, proffering skin and blood samples, funky PET scans, functional MRIs…accompanied by eyewitness accounts of the damage inflicted on my landscape. Meanwhile, I remain a walking crime scene apologizing for acts I can’t explain. Perhaps my amends are best bestowed on the objects of my temper…
Posted in Health, Life
Tagged Conditions and Diseases, Dystonia, DYT1, Genetic disorder, Genetic mutation, Involuntary movement, Medical research, Movement disorder, Muscle contraction, Neurological disorder, Torsin A
Nothing like a massage to tense up those muscles!
Now, I’m not talking about a rough and tumble sports massage but one of those coveted Swedish gigs that cost upwards of $150 at a fancy spa…
During breakout sessions at a patient symposium, a massage therapist offered her services to our group, hoping to bestow a haven of relaxation. She was utterly baffled by the dearth of volunteers for a free massage until I explained how our muscles react to stimulation. After all, I port a history of educating massage therapists about the Mexican jumping beans in my legs at the touch of their fingertips.
Aaaah, we achieved clarity. Perhaps she could work on locations that relieve sinus congestion, avoiding contact with my upstarts. Didn’t do much for my aching muscles but I went home breathing easy!
Posted in Life
Tagged Chronic illness, Chronic pain, Dystonia, Health, Massage therapy, Movement disorder, Muscle, Muscle contraction, Neurological disorder, Relaxation, Spa, Swedish massage
Menstrual cramps, stomach cramps, leg cramps, we’ve all had them in one form or another. Take an Advil and if they persist, call the doctor in the morning…
If you’re otherwise free from movement disorder, those cramps are about as close as you’ll get to a dystonic movement – you’re experiencing nothing less than an involuntary spasmodic muscle contraction, painful to boot. Surprise, Dystonia isn’t quite the unfamiliar territory you thought!
In a devilish merger, my foot cramps are a case of ordinary cramp meets DYSTONIC FURY. I may observe a lift of toe or turn of arch but the real craziness is the frenzy I can’t see, daring me to halt this out-of-control party. Fortunately, I’m not without experience handling these matters, tending to strike without warning. Pressure is required to quiet my visible movements and initiate a dig into the hidden turmoil…
Springing from my bed, I channel my inner bunny and hop like mad in a resolute attempt to pound the insanity out of my muscles. Often, we go several rounds before the knock out punch is delivered but I’m ever grateful for my victory!
Posted in Life
Tagged Chronic pain, Cramp, Dystonia, Health, Humor, Movement disorder, Muscle, Muscle contraction, Neurological disorder, Positive thinking, Rabbits
Computers, tablets and smartphones are turning handwriting into a lost art. About time, movement disorder raided my “lost art” years ago. While feather quills and inkwells summon a whimsy that appeals to my sense of romance, the coldly technical word processing program eases my burden from fingers to shoulder. After all, with Dystonia even a Post It requires an abundance of effort!
My exercise of graphomotor skills involves my own unique rendition of motor planning: firmly anchoring the writing instrument in my hand, controlling my motions with a stiffly held arm (try writing when your arm’s a tension headache), favoring slow staccato print utilizing a pencil to reduce the chance of a runaway letter. The overriding theme: control, control, control, which is precisely what my handwriting reveals about my personality! Truth be told, graphologists prefer to base their analysis on cursive writing, garnering scant attention over the years and uniquely unqualified to make a searing statement about me.
In my case, the compositional elements that go into lettering – slant, size, loops, smoothness of line – are capriciously determined by the whim of renegade muscles and a confused left hand that’s hardly my first choice of athletes. To this day, I possess an utter lack of knowledge of the proper tilt of paper for my oddly scrawled script. Indeed, this “enforced lefty” finds herself challenged distinguishing right from left absent the instinctive guidance supplied by undisputed “handedness.”
I carry fond memories of my childhood knight in shining armor: a sleek Smith Corona electric typewriter I lugged to school for essay exams and relied on to recopy class notes and pound out homework. I speak of an era before White Out transformed editing, when color typewriter ink cartridges ranked cutting-edge and the apple was merely a fruit.
Am I able to use the gym? The questions people ask! Heavens, I inhabit the same world as the rest of you…or do I?
Going to the gym is like careening through a rabbit hole into a surreal Wonderland full of disquieting adventures! While I watch fellow “athletes” deftly execute coups of gluteus, hamstring and trapezius on strange, weight-bearing apparatus, I largely refrain from partaking in their revelry, instead creating my own zany tea party.
For starters, any unstable surface challenges this house of cards, causing my muscles to go haywire and summoning my core to control the show. My Mad Hatter is a device I call the “marshmallow” – flat on one side, rounded rubber cushion on the other (exercise mavens know this as the Bosu ball). My feat? I “stand” on the rounded surface and wave my arms in the air to further mess with my balance. Give that device a go during an earthquake and you’ll see my task isn’t quite so easy as it looks.
My personal triathlon involves a deceptively simple maneuver – the one-legged squat – on stable ground. Try supporting your entire corpus on one leg and then bobbing up and down while engaging in bodily combat with movement disorder! My left leg insists on a quirky diagonal directional that precariously holds my weight as I teeter through the motion while somehow remaining upright. Three sets: that’s a workout!
For much of my life, the gym didn’t even appear as a blip on my radar. Courtesy of a handful of trainers who’ve done Lewis Carroll proud, I’ve crafted my own realm of possibilities. Rather than coveting unreasonable exploits beyond my reach, I rule over the territory I’ve conquered including a tamed Madame Bosu – now that deserves a spotlight on my résumé!
One of the most annoying phenomena on our planet is the automated phone system. Everyone knows the technological turbulence inherent in speech recognition technology. Try navigating voice user interface with a speech issue, where the error rate increases with frustration. CLARITY?…puh-leeze!
Here’s the deal: speech recognition software operates on units called phonemes, the basic audibles of a spoken language…only I tug and gnaw at words that seamlessly flow off most tongues, concocting my own unique sounds that become hopelessly lost in mathematical modeling. Communication deteriorates into a comedic exercise of “stabs in the dark,” muse confounding machine. I never understand how my bank’s system confuses “Agent” with “Balance” though they do share the same number of syllables. To be honest, the person who programmed the system probably wouldn’t understand me let alone a computer-generated interface trying to reconcile its algorithms with my zany sound waves.
Pure speech recognition is the ultimate nightmare as I repeatedly press “0” in stubborn defiance of the lack of a human option. Worse, it deprives me of the opportunity to escalate the call to a “Supervisor” lounging in a remote call center. By this point, I require one seriously advanced piece of intelligence – artificial or real – to decipher my garbled rantings.
As for hands-free computing, my arms may desperately yearn for a rest but I envision Sir iMac erasing the hard drive when I command him to open Microsoft Word!
Over the past year and a half, as my walking embarked on a bit of a downward spiral, I found a new “best friend:” handicapped seating on the subway. Finally, a place to call home in a crowded sardine can lurching along a bumpy ride. As long as I’m not displacing someone in need, I avidly claim my perch.
To my surprise, I’m frequently met with a recalcitrant rider reluctant to surrender their seat until discerning the precise nature of my disability. Even when I offer my legally unnecessary explanation, many a New Yorker either doubt my word or dispute my claim in groundless defiance of city ordinance. Then again, my fellow residents aren’t known for their manners let alone random acts of kindness. Seems utterly beside the point that the law’s on my side.
While I understand subway seats are zealously guarded parcels of New York City real estate, I had no idea sitting activism extended to the handicapped zone. Here’s a taste of the empathetic responses I tend to receive: you’re not pregnant, what’s your disability- that you don’t want to stand, no hablo Ingles (when I point to the bilingual sign, they suddenly lack reading comprehension).
Ultimately, I overcome this appalling behavior by morphing into a human bulldozer bludgeoning obstacles in my path. If necessary, I’ll make an example of gross misconduct or appeal to not-so-innocent bystanders when I’m getting nowhere with the offending criminal. I’ve also utilized these quintessential New York City moments as PR opportunities, handing one “gentleman” an index card urging him to “Go online, Google Dystonia, then spread awareness” though he didn’t quite get the point. Guess the subway isn’t the best venue for a personal publicity campaign!
So let’s review the basics of human etiquette: offer someone old or disabled your seat whether in the handicapped locale or not; stand up for fellow citizens who are getting the raw end of the stick; and never consider yourself in too much of a rush to assist someone in need.
Typical of most females is a love affair with leather delectables that grace the feet. My friends pontificate over the perfect match of shoe to garment, agonizing over the slope and height of heel as if they’re solving a complex trigonometric equation. Years ago, I understood that fashion starts at my ankles – when I wear boots at my knees.
There’s no rhyme or reason to which shoes cooperate with my misbehaving muscles, particularly my left foot, which acts like a caged beast desperate to escape confinement. I apply a simple test: (1) do my feet stay in the shoes; if yes, go to part (2) do they make my walking worse? Mind you, my body’s apt to play naughty tricks. I’ll put the shoes through boot camp in-store, all systems go. Then invariably, I can’t walk in the shoes when I need them. Prince Charming’s quest for Cinderella’s singular foot has nothing on my footwear missions. I dread shopping for sneakers!
The moral of this story: They say shoes make the outfit, but in my book, the most important item we wear is our smile!
Whoever said the way to a man’s heart is through his stomach got things wrong: it’s through his children.
I gave my heart to an amazing guy and he gave me his weekends with his kids. I climbed mountains to make an impression, taking untold abuse at the indoor playground in McDonald’s, bribing them with cookies and fading into an insignificant comma to make it all about them. My efforts didn’t do much to enhance my position on their popularity meter. Worse, I lived in constant trepidation of an insensitive observation about my Dystonia in a jarring reawakening of my childhood phobias. I wasn’t disappointed. While I can usually count on the politeness of adults, kids nose their way into my imperfections with a stream-of-consciousness bluntness: “You talk like your mouth’s full of marbles;” “I can’t understand anything you say…”
Packing years of therapy under my belt, I know these to be the ignorant squeals of piglets but my insistent inner child still longs for approval and dreads the punch packed by the uncensored honesty of youth. Want to know if that dress REALLY makes you look fat? Ask the kid next door!
If you inhabit the NMDW (Non Movement Disorder World), please consider what “having a bad day” means to you before continuing.
For those low on imagination: It’s rush hour, you’re running late, 110 degrees in the subway, the lines at the service machines snake all the way to the turnstile. Thank god you remembered your metro card. Scan: “CARD EMPTY.” OK, you brave the line, reload, hear the express train pulling into the station, hit the steps 2 at a time only to reach the platform as the doors close. The next train takes 20 minutes to arrive and promptly gets stuck between stations. Then the AC conks and you’re mired in a collective sticky sweat. When was that meeting? We’d all agree you’re having a “bad day.”
My “bad day” begins before I encounter the sweltering heat in the station or the deficit on my card. Instead, it starts when I’m on the verge of hyperventilation half a block into my 4-block marathon. By the time I reach the subway, I yearn for a nap – a seat would be nice. But I must stand at the top of the stairs, waiting for the crowd to clear and the guy handing out free Metros to move aside so I can grab the railing to avoid falling on my face. On “bad days,” I find myself at war with a severely flexing foot exercising it’s own agenda and mysterious muscles in my legs jarring me with attitude, every step a precarious leap of faith.
Dystonia is a fickle female whose mood banks on stress, anxiety or nothing at all. I take my moments as they greet me, understanding “good” and “bad” are relative events. The pain-in-the-neck days shine a bright light of perspective, cementing my appreciation of the better ones.
Feel free to post your rendition of “Having A Bad Day.” All stories welcome!
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!
“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!
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?
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?
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!
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.
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!