- Posted June 21, 2013 by
New York, New York
This iReport is part of an assignment:
First Person: Your essays
For the first 8 years, my life was rather unremarkable. I lived in a beautiful suburb of New York City, enjoyed a close-knit family and basically fit in with my friends. Then, at age 8-1/2, over 40 years ago, a strange disorder began to assert control over my body. First, my right elbow began lifting of its own accord while I wrote, making it impossible to control my handwriting and transforming this righty into a lefty. Soon thereafter, my left foot started a dance of its own when I walked. The labor unrest eventually spread throughout my leg and also to my right foot and left arm.
Remarkably, my rare disorder - Dystonia - was diagnosed about a year after onset. The first movement disorder neurologist we saw correctly identified my condition but offered no hope, essentially advising my parents to lock me up and throw away the key. Fortunately, his prognosis didn't sit well. My father took himself to the public library to research my condition, finding an up-and-coming neurologist to marshal my care. Treatment evolved in a routine of informed guesswork, "trial and error" lighting the way. Think of the doctors as practicing creative borrowing from other diseases. An oral medication called Tegretol, started in 1974, disposed of movements in my neck when I lay. Two years later, Artane came on board, truly the "muscle" in my regimen. Sinemet (a sine qua non for Parkinson's Disease), added years later, completed my routine. My meds enable me to walk - punctuated with a twist - at the expense of a host of side effects messing with my health. That's Dystonia and I'm one of the "lucky" ones, not every patient can tolerate my heavy-duty meds. We've done a bit of fiddling - unsuccessfully - but the basic cocktail of meds thrown at Dystonia really hasn't changed over the years. None were developed specifically for Dystonia. All are used "off-label." To this day, we await a cure.
With movement disorder starting so young, it's impossible to cut a line of demarcation between life pre and post-Dystonia. This is all I've really known. At age 8-1/2, adjusting was less about the loss of an easy step and smooth handwriting and more about the constant extra efforts and the social implications of my visible condition. With my distinctive gait, I experienced a feeling of separation from my peers at a time when "uniqueness" was far from a virtue. On the practical side, I was confronted with recopying class notes daily (all the way through law school) and figuring out a host of accommodations as "minor" as determining how to hold an unruly right arm during the pledge of allegiance. Technology and the Internet have eased the burden for certain patients but Dystonia can impact tasks as elementary as key-stroking.
Dystonia's challenges aren't always discernible to the ordinary eye. Perhaps it's navigating a benign flight of stairs, filling out a new patient form by hand, articulating deceptively simple words, walking in a specific pair of shoes. Dystonia is also a path of mental toughness: forever explaining a disease that's evaded most people's radar, maintaining my equilibrium when my foot engages in gross misbehaviors, forging through frustration to communicate, surviving the onslaught of an agonizing leg cramp, taking pills that are foe as much as friend.
There are many twists and turns to this condition, which can impact a variety of body targets. Broadly defined, Dystonia is a neurological movement disorder characterized by involuntary muscle contractions, which force parts of the body into irregular movements or positions. It can strike at any age, affecting 300,000-500,000 people in North America alone. The involuntary spasms can be confined to specific muscle groups or "generalized" throughout the body, like mine. Though the 3rd most common movement disorder and more prevalent than Muscular Dystrophy, Huntington's Disease and Lou Gehrig's Disease combined, Dystonia remains largely unknown and diagnosis can stand a long and winding road. The plot of our story is essentially a mystery though a whole bunch of genes have been implicated. Dystonia can also result from certain medications or Traumatic Brain Injury. Some forms occur with no apparent trigger. The medical investigators plod forward in their search for a cure, tackling a puzzle that rivals Quantum Weirdness! Every discovery generates hope we can conquer this beast.
By necessity, I've learned to make my own way when I can't walk the usual route, relying on resourcefulness and a sense of humor to slay the dragon. My journey has been a transformation from a self-conscious girl reluctant to share my story with peers into a Dystonia activist and blogger churning out my chronic epic for all the world to read. I'm a committed volunteer with the Bachmann-Strauss Dystonia & Parkinson Foundation, an inspired advocate saying my piece as part of the Dystonia Advocacy Network, Patient Moderator of a Dystonia Support Group at Beth Israel Medical Center in New York City, and last but not least, official Muse of my own Dystonia site. My humorous spin on life with Dystonia can be found at Chronicles of A Dystonia Muse, http://dystoniamuse.com.
Remember this: Living with a movement disorder, it's not about seeing the glass as half empty or half full, we're just trying not to tip it over!
-Chronicles Of A Dystonia Muse-