When Pamela was 8-1/2, her right elbow began lifting of its own accord while she wrote, making it impossible for her to control her handwriting and forcing a switch to her left hand. Soon thereafter, her left foot started turning in when she walked. Pamela’s Dystonia was diagnosed by a movement disorder specialist about a year after onset, a rather remarkable time frame given the paucity of knowledge about Dystonia and dearth of physicians schooled in this condition. Treatment evolved in a routine of informed guesswork, “trial and error” lighting the way. Think of her doctors as practicing creative borrowing from other diseases. Tegretol disposed of movements in her neck when she lay. Two years later, Artane came on board, truly the “muscle” in her regimen. Sinemet and Zonegran (the latter replacing Tegretol) complete her routine. These meds enable her to walk at the expense of a host of side effects.
Pamela is unable to cut a line of demarcation between life pre and post-Dystonia. 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 her visible disorder. With her distinctive gait, she experienced a feeling of separation from her peers at a time when “uniqueness” was far from a virtue. On the practical side, she was faced with recopying class notes daily and figuring out a host of accommodations as “minor” as determining how to hold an unruly right arm during the pledge of allegiance in homeroom.
Dystonia confronts Pamela with challenges that 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 her equilibrium when her 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.
While at times Dystonia has tried to kick Pamela to the sidelines, she’s learned to make her own way when she can’t walk the usual route, relying on resourcefulness and a sense of humor to slay the dragon. Her path includes Brown University and NYU School of Law and careers in law, marketing and non-profit administration. She’s a committed volunteer with The Bachmann-Strauss Dystonia & Parkinson Foundation and Patient Moderator of the Dystonia Support Group at Beth Israel Medical Center in New York City.
Pamela’s journey has been a transformation from a self-conscious girl reluctant to share her story with peers into a Dystonia advocate and blogger churning out her chronic epic to the world. Her humorous spin on life with Dystonia can be found at Chronicles of A Dystonia Muse
“Remember this: Living with a movement disorder, it’s not about seeing the glass as ha”lf empty or half full, we’re just trying not to tip it over!” –Chronicles Of A Dystonia Muse–
“I have D-Y-S-T-O-N-I-A? No, it’s not a former Soviet Socialist Republic but a neurological movement disorder.” – Pamela
According to Dystonia Medical Research Foundation:
“Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are ‘competing’ for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures. There are multiple forms of dystonia, and dozens of diseases and conditions include dystonia as a major symptom”.