What would you do if your head started jerking up and down or to one side without your ability to stop it? Would you panic if your feet started to turn inwardly, creating such a severe pigeon-toe that you couldn’t walk straight? What if your abdominal muscles tightened beyond your control, making it hard to breathe in your permanently twisted posture? Would it infuriate you if the rest of the world labeled you as mentally-retarded when your mind was perfectly clear?
For the 300,000 people in North America who have been diagnosed with dystonia, the third most common movement disorder after Parkinson’s Disease and Tremor, these questions are not scary hypotheticals. Rather, these questions constitute reality.
Last Wednesday, the Heath and Human Values Lecture Series hosted the Philadelphia premiere of “Twisted,” by Emmy-nominated filmmaker Laurel Chiten.
Chiten’s documentary depicts the neurological disorder dystonia, with which sufferers experience involuntary muscle contractions that force their bodies into abnormal and painful movements or postures.
Although it often goes un- or misdiagnosed, dystonia is a chronic disorder that does not discriminate against any age, gender, race or ethnic group.
Chiten’s documentary embodies the theme of this year’s lecture series: “Profiles in Human Adversity.” A sufferer of dystonia herself, Chiten chose to place her own suffering in the background as she recounts the stories of fellow patients Pat Brogan, Shari Tritt and Remy Campbell.
Despite their different challenges, Chiten shows how dystonia “traps” the sufferer inside his or her twisted body. Through the agonizing decisions they must make in search of treatment, Chiten captures the strength of those patients who refuse to let their debilitating disorder take over their lives.
The struggles faced by the profiled sufferers represent the broad spectrum of the disorder. Brogan, a healthy basketball coach and triathlete, first developed dystonic symptoms months after a bike accident when he began to notice that his head started involuntarily moving to one side.
While he has secondary dystonia, in which symptoms are caused by environmental factors that damage the brain (such as birth injury, trauma, toxins or stroke), two other “characters,” Tritt and Campbell, have primary dystonia: a generalized, genetic form of the disorder that often affects the entire body.
While no cure exists for dystonia, Tritt’s and Campbell’s cases demonstrate the vast strides made in treatment options. Although radical brain surgery in the 1970s improved much of Tritt’s disorder, the process left her unable to speak clearly.
Campbell, however, underwent experimental surgery called Deep Brain Stimulation (DBS) five years ago. Once permanently bent at a 45-degree angle, she now painlessly stands and walks upright.
During DBS surgery, electrodes are implanted in the brain and connected to wires that run through the neck to a battery pack in the chest. In the film, Campbell demonstrates how the battery pack acts as a “pacemaker” for her brain’s electronic activity: when she turns her battery off, her abdominal muscles constrict, re-twisting her body into a pretzel shape that restricts her ability to breathe.
Because of the risks of surgery, many patients attempt to lessen the often-painful and uncomfortable symptoms of dystonia with oral medications, botulinum (botox) injections and alternative treatments such as exercise and physical and speech therapies. However, as Brogan’s experience demonstrates, these treatment options are often ineffective or have negative side effects, including mood swings and depression. When other treatments failed to bring him relief, Brogan opted for surgery. The film follows Brogan into the operating room as he decides to combat his secondary dystonia with the surgery.
After a brief improvement, his dystonic symptoms worsen throughout the following year. The resulting stress and depression only exacerbate his problem, putting additional strain on his marriage and his coaching career.
Despite the trauma, Chiten’s film is one of hope as the “characters” strive to lead fulfilling lives: speech-impaired Tritt found her loving husband Ira online; photographer and filmmaker Campbell is busy making plans for another movie; Brogan ends the film with the declaration that he’s “not going to give in” to his “very tough opponent.”
Following the film, writer/director/producer Chiten, profiled coach Pat Brogan and his wife and local neurologist Stephen Gollomp, M.D. participated in a panel discussion, fielding questions from the packed audience.
Each premiere offers a similar panel discussion to encourage further conversation about the disorder.