"I got pushed into this the way I got pushed into marriage," Domenic says, grinning. "But they both worked out."
Nicole says her father is the "best ever," and that she'll always remember the moment she learned he had Parkinson's. "My mom and dad were in the kitchen; she was crying, he was staring at the floor. I thought someone had died. Then dad turned to me, choked back his tears, and said, 'Nicole, I have Parkinson's disease.' I was totally shocked."
Parkinson's often comes on like a whisper. The symptoms may be so vague the patient dismisses them. It's been 11 years since Domenic was diagnosed, at 49. "I had an odd feeling in my right hip, something like a tremor," he says. "But my doctor said it was nothing to worry about."
It was numbness in his foot and, later, weakness on his right side that sent him to a neurologist, who diagnosed him quickly. The giveaway, he told Domenic, was the vacant, mask-like expression on his face. "He told me this is a progressive disease, but it won't kill you.'"
Parkinson's is a disorder of the central nervous system that affects movement. Early motor symptoms - tremors, rigidity, difficulty walking - result from the death of dopamine-generating cells in a region of the midbrain. It is uncertain what causes the disorder, and though it is considered a non-genetic condition, about 15 percent of patients have a first-degree relative with the disease. There may be greater risk for those exposed to certain pesticides or with head injuries. Surprisingly, there is less risk to tobacco smokers, perhaps because nicotine is a dopamine stimulant.
In early stages, the faces of patients - like Domenic's - may show little or no emotion. Later, cognition may be affected. "Your reaction time is slow and you are more dependent on other people, so you feel vulnerable," says Domenic. "That's the worst part."
Though there is not yet a cure, modern care - mainly dopamine-replacement therapy - can manage the motor symptoms for a long time. That allows doctors to focus on such issues as episodic freezing, where the feet feel glued to the floor, says Matthew B. Stern, director of the Parkinson's center at Penn Medicine.
Dance has become an increasingly valuable adjunct to care because "music has a direct benefit on a patient's ability to move," says Stern. "Anything a patient does that's active brings about a benefit that goes beyond the exercise, but very often, rhythm has the added effect of bypassing some of the motor blocks a patient has, so he can frequently dance better than he can walk. When a patient's feet seem stuck to the floor, auditory rhythmic cues - imagine a Sousa march - will break the freeze."
The results of a 12-week study involving the English National Ballet corroborates improvement in balance and stability in the 24 patients ages 60 to 82 who participated.
More than a million people in the United States have Parkinson's. It is more common in the elderly, with 60 being the main age of onset. But 5 to 10 percent of cases occur in those between ages 20 and 50. Actor Michael J. Fox, whose foundation raises money for research, was diagnosed at 30; Muhammad Ali was 42. The prognosis for living well is good, says Stern. Most patients enjoy a normal life span. But almost half experience depression, which can be controlled with medication and even dancing.
"Patients who participate in dance therapy often say they feel empowered by it," says neurologist Nabila Dahodwala of Pennsylvania Hospital. "They feel so grateful gaining power over their bodies and being able to move to music when they thought it was something lost to them."
Moss Cohen was a Bryn Mawr pilates and dance instructor when he was diagnosed in 2001. His first symptom was numbness in two fingers. "But then my right hand began to tremor and my handwriting became scratchy and illegible," a common effect. For nearly a decade, drugs controlled his symptoms. But by August, he needed more. Cohen opted for deep brain stimulation.
In an eight-hour operation at Pennsylvania Hospital, surgeon Gordon Baltuch connected a thin, insulated wire with an electrode at the tip to a tiny part of Cohen's brain called the subthalamic nucleus, which had become hyperactive due to dopamine loss. He then tunneled the wire under Cohen's skin to an area beneath his collarbone where a pulse generator - essentially a battery - was placed. The unit delivers a continuous impulse to the brain, taming his symptoms. This delicate, low-risk surgery has been done on more than 1,000 patients at the hospital. Fewer than 10 percent of those with Parkinson's undergo the procedure.
"You'll be the first dancer I've ever done," Baltuch told Cohen, "and you'll dance again."
Cohen, 77, and his psychologist wife, Sandra, joined the Rock School dance class seven months ago. "We met at a bar mitzvah, and we danced together," says Sandra, "so it felt like a perfect fit that we should come here every week. Moss was trained as a dancer, and that memory was still there in his brain. I wanted to plug into it."
Nicole Harmon, the school's director, and Donna Dufoe, a dance teacher who has worked with the disabled, are the instructors. They ask group members to form a circle and listen to the music and their directives. First, the Cohens and others swing their arms and tap their feet to an African beat. Then comes a Mexican hat dance, followed by a kung fu fighting dance where they mimic a karate chop. Moves based on the musical Chicago come next, with black top hats given to each person. They shuffle and tap to a routine they have been practicing each week. "You have to smile," urges Dufoe. "And let me see those hips swing. Don't be afraid, gentlemen."
"Looks good!" encourages Harmon. The number ends with tossing hats into the ring.
Working with Wendy Lewis, head of the Parkinson Council in Bala Cynwyd, Dahodwala trained about 25 dance instructors, schooling them on the disorder's motor and psychiatric issues. Dance "adds a social component to help with mood and quality of life," Dahodwala says. "It's a cool therapy without the side effect of meds."
"This is a great group of people here," says Domenic. "The dancing gets me moving and socializing with other people. To feel alone is a terrible curse."
"You can see the difference in just a few weeks," says Karen Lynch, 65, who was diagnosed six years ago and who organized the dance classes. "We end up with better balance and coordination, more confidence, improved posture, and greater endurance."
"There were times that people told me I was losing Moss," Sandra Cohen says. "But I never accepted that. I believe in God and I believed in Moss. I knew he would get well and that we would be dancing together again. And here we are!"
Want to Dance?
Dance lessons for Parkinson's patients are offered around the region. Schedules and fees vary.
The Parkinson Council
The organization sponsors classes at the locations below. Schedules: www.theparkinsoncouncil.org/movementclasses.html .
- The Rock School West, West Chester; information: 610-524-1556.
- The 954 Dance Movement Collective, Northern Liberties section of Philadelphia; information: 215-627-1157, http://954dmc.weebly.com
- Abington YMCA, Abington; information: 610-668-4292.
Rohrer Center for Health and Fitness
The William G. Rohrer Center is in Voorhees; information: 856-325-5300 or www.virtuafitness.org/wgr/calendar/?entry=251
Gloria Hochman can be reached at firstname.lastname@example.org.