Living with dystonia
“I was 14 at the time,” says Spokane Valley resident Megan Sargent. ”And about a week after that, my neck just snapped to the side.”
With her head torqued and locked on the right side, her doctor sent her home with some muscle relaxers. Assuming it was an isolated incident, Sargent and her family didn’t think much more about it.
But signs of dystonia, a neurological movement disorder, had shown up years before.
“I always walked a little funny,” says the now 20-year-old, “often on the sides of my feet.”
Dystonia causes sustained muscle contractions that force the body into repetitive and often twisting movements as well as awkward, irregular postures. These movements are involuntary and often very painful.
The neurological mechanism that makes muscles relax when they are not in use does not function properly in dystonia. Opposing muscles can contract simultaneously, as if competing for control of a body part.
A year after her bike accident, a friend at Shriner’s Children’s Hospital in Spokane encouraged Sargent to dig a little deeper. It was there she was diagnosed with dystonia.
It became more pronounced when she had her wisdom teeth removed three years ago. Since her diagnosis in 2006, she has been hospitalized four times.
“My dystonia affects my right foot all of the time, and when I spasm, the whole right side of my body,” Sargent says.
The longer she spasms, she says, the more parts of her body are affected. More often than not, her neck torques to the right side.
When she locks up she’s often treated at the doctor’s office with an intravenous drip of benadryl. Other times, she’s had to be admitted to the hospital.
As a senior in high school, Sargent had dreams and plans like her classmates, but dystonia changed all that.
“I was frustrated,” she admits. “When I graduated from high school, I wanted to go away to college like everyone else.”
Her plans originally included pre-med classes at Eastern Washington University, she says, “But it was just too stressful. I realized I couldn’t do it. The workload would have killed me.”
In addition to the demands that a rigorous course load would have put on her body, in 2008 Sargent had to let go of a favorite pastime.
She had been a Scottish Highland dancer for four years, performing and competing throughout Washington and British Columbia. But her doctor told her this could trigger her particular kind of dystonia.
“I started to tear up when dance was no longer an option,” Sargent says. “I realized I had to put my ghillies (shoes) and kilt away for good. It was hard knowing that doing something I loved could cause my ultimate downfall.”
She didn’t let it drag her down.
“I would give anything to be up there in front of an audience again,” Sargent says. “But I have learned to live around it. I’ve found there are other things I enjoy doing, and I have to focus on the future.”
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According to the National Institute of Neurological Disorders and Stroke, more than 300,000 people in the United States have dystonia. It is the third most common movement disorder after Parkinson’s disease and essential tremor.
Dystonia may affect a single area or spread throughout multiple muscle groups, according to the Dystonia Medical Research Foundation (www.dystonia-foundation.org). It can cause varying degrees of disability and pain, from mild to severe.
With more than a dozen varieties of the condition – some genetic, some not – dystonia can manifest itself in many ways. Common to them all are the repetitive, often twisting involuntary muscle contractions.
Early signs of dystonia can include deterioration of handwriting, foot cramps or even a tendency to drag a particular foot.
During an acute episode, the neck can involuntarily pull to one side and lock. This is known as cervical dystonia.
At times, a slight tremor may be the only sign of an episode. Tremors can occur both in the body and in the voice, causing speech problems.
Some people with dystonia have vision issues, with rapid blinking or lid closure, rendering them temporarily blind.
Common triggers for dystonia can include stress, injuries, hormone fluctuations, fatigue, caffeine and alcohol.
Over time, symptoms may become more noticeable and widespread, but sometimes there is little or no progression.
The vast majority of the time, it does not affect mental abilities or shorten a person’s lifespan, according to the Dystonia Medical Research Foundation. The exception is dystonia that occurs as a symptom of another disease that can cause complications.
Dystonia’s origins have been isolated to the basal ganglia, the area deep inside the brain that controls cognition, coordination and voluntary movement.
The basal ganglia are groups of nuclei responsible for turning thought into action. This is inhibited in neuromuscular disorders such as dystonia and Parkinson’s disease.
Scientists suspect the chemical messengers dopamine, acetycholine, norepinephrine and gaba, which all play a role in movement control, are dysfunctional in dystonia.
Currently, there is no cure, but treatment options exist and research into new therapies continues.
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Denise Gibson, a 62-year-old Spokane graphic artist, was diagnosed with dystonia in much the same fashion as Sargent.
Thirty years ago Gibson had a high-impact biking accident. Soon after, she began to notice that when she sat and spoke to someone, she turned her left side away.
A year after the accident, Gibson went through a divorce and developed a head tremor. She consulted with a neurologist, but her dystonia was left undiagnosed.
“When I spoke to the doctor about my tremor, he wasn’t sure what the cause was. He told me to go home and have a stiff drink in the evenings,” she says with a smile.
It was not until 2006, and after she lost hearing in her left ear, that she was formally diagnosed with dystonia.
Gibson’s dystonia affects her cervical spine, speech and swallowing. While she has noticeable tremor in her head and hands, she says the effect dystonia has had on her speech – called dysphonia – has been particularly difficult.
Dysphonia is caused by an intermittent constricting of the larynx, which produces choppy and sometimes whisper-soft speaking.
Sargent and Gibson were treated and inspired by the same physician, Dr. Anthony Santiago, a former Spokane neurologist.
Santiago, now practicing in Phoenix at the Muhammed Ali Parkinson’s Center, emphasized deep breathing when Sargent felt spasms come on. Having the condition himself, he tried to help her through the rough patches by giving her a prayer bracelet that he received, she says, from the Dalai Lama.
“He told me the beads had good energy,” says Sargent, “and told me to wear them whenever I felt stressed.”
She often wears them when she has to go to outpatient services for intravenous medications.
It was in Santiago’s office that Gibson was inspired to start Dyscoveries, a nonprofit organization to inform and support individuals and families coping with dystonia.
He recommended that she speak with Mary J. Kellogg, a patient who’d asked him about the same thing. In 2006, Gibson and Kellogg co-founded the support group.
While Gibson knows that her dysphonia sometimes makes people nervous, this has not kept her from getting up in front of a crowd and speaking at Dyscoveries meetings, which include discussions of specific types of dystonia as well as treatments, nutrition and pain management.
Some treatments use medications that aid the dysfunctional group of neurotransmitters, as well as pain medications, antihistamines and botox to release muscle spasms.
Other therapies include biofeedback, massage, acupuncture, meditation and yoga.
Sargent takes a combination of dystonia medications and vitamins, and does biofeedback and structural integration – a therapy that aligns and balances the body by lengthening and repositioning the protective layer of tissue overlaying the muscles.
Gibson’s treatment is similar, but she also credits a regular practice of meditation as a source of inspiration and healing.
While Gibson feels dystonia is the biggest challenge she’s ever faced, it has also taught her about herself.
“It’s given me the greatest learning experience of my life,” she says. “I have learned that it is possible to train my mind and body to function at a higher level than I ever imagined.”
Gibson says she’s also gained an appreciation for the medical community’s knowledge and attributes much of her success to their help, as well as support from friends and family.
“Through dystonia, I have learned to trust myself and communicate more freely,” she says. “All that is important is being present in the moment.”
While Sargent has let go of some of her old dreams like dance and medical school, she’s found new ones in playing guitar and piano. When she returns to school, she hopes to pursue screenwriting.
“It’s kind of a curse and a blessing mixed into one,” she says of her dystonia.
“If I were given the chance, I would choose this path over again. … No matter what, it has made me the person that I am today.”