It sounded like a script for a dramatic series: A beautiful young woman in her prime is diagnosed with a devastating disease that upends her very existence. It was a role that actress and dancer Victoria Dillard would normally jump at the chance to portray. Except in this case, it wasn't an offer to star in a series or movie. It was Dillard's real life.
THE FIRST SYMPTOM
About six months after giving birth to her second child in 2006, Dillard, then 36, noticed a tremor in her left hand. The tremor worsened to the point where she couldn't brush her teeth or sign her name. “I felt like my brain was disconnected from my movements,” she recalls. She saw a neurologist, who diagnosed her with Parkinson's disease after a full neurologic examination and clinical observation. She remembers feeling oddly calm and taking notes as she listened to the diagnosis. “I didn't panic, but I wrote as though I were in a fog,” she recalls.
Dillard says she has no family history of the disease, but she became familiar with the condition while playing Janelle Cooper on the TV show Spin City with Michael J. Fox. She remembers the day Fox sat down with the cast and crew to share his diagnosis and his decision to leave the show. “I was there when Michael was going through it,” she says. “Even though I had no close friends or family with this disease, I already knew what to expect because of him.”
Dillard had been looking forward to a busy acting career and a rewarding personal life. She had recently portrayed Betty Shabazz, the wife of Malcolm X, in the movie Ali, a biopic of Muhammad Ali. Prior to her stint on Spin City, she had appeared in Coming to America with Eddie Murphy. More recently, she had also appeared on both Law & Order and Law & Order: Criminal Intent. “My diagnosis altered all of that,” she says.
Dillard felt depressed and isolated, especially because the community of people with Parkinson's disease seemed so different from her. “At my doctor's appointments, everybody in the waiting room was 60-plus years old. It's like looking at yourself 30 years out,” she says. “Am I looking at what's ahead for me?”
She sought in vain to find other black women with young-onset Parkinson's disease. “I don't have many people to relate to,” she says. “But I can't be the only one.” Dillard isn't the only one—but the evidence suggests that the incidence of the disease among African-Americans is about half that of whites, says Allison W. Willis, MD, MS, assistant professor of neurology and epidemiology at the University of Pennsylvania, whose research focuses on health care disparities among under-represented minorities and women.
Dillard says the unpredictability of her symptoms sometimes draws stares and judgment from strangers. Her movements aren't always fluid, for example, and the dancer in her isn't ready to use a cane or a walker. When her legs give out or she stumbles, she says, people look at her with confusion and wonder what's going on. “People may be more used to seeing older men with Parkinson's, not someone like me,” she says.
LIVING WITH PARKINSON'S
Although medications such as carbidopa-levodopa (Sinemet) help lessen her tremors, they also cause fatigue and dizziness. “I have come close to fainting,” Dillard says. “And my kids [now 11 and 15] sometimes see my tremors and how tired I am.”
“I take 10 medications a day, three times a day,” she says. “They are hard to swallow, but they are like oxygen for me.” Each medication manages different symptoms, she says, such as chronic fatigue and low blood pressure upon standing. Together, the medications keep her moving, free of pain, and strong enough to get on with her life.
Dillard focuses on maintaining her quality of life. “It helps to have supportive family and friends,” she says. It also helps to remain creative. At first she continued to work as an actress, but as her disease progressed it became more difficult to mask her tremors. “When I try to hide my tremor, it tends to make it worse.”
The pressures of auditioning triggered anxiety and exacerbated her symptoms. Eventually, it all became too much, and she decided to retire from acting. She keeps busy with other projects, including dancing with the Mount Morris Dance Group in Brooklyn. “I don't let the constraints of my condition prevent me from expressing myself creatively,” she says.
Dillard also runs the dance program and helps with choreography at Fort Washington Collegiate Church in New York City, and serves as the artistic director of the church's theater group. “We have children as young as 6 or 7, as well as adults in their seventies. Last February, for Black History Month, we choreographed a dance about the Underground Railroad,” she says.
Dillard also has some personal projects underway. “I'm working on a narrative performance piece titled ‘Intersections,’” she says. She also blogs about her experience at http://VictoriaDillardDaily.com, in the hopes of inspiring other people with young-onset Parkinson's disease. She has met some women with the condition through the blog and her other awareness efforts, but not as many as she had hoped. But she continues to be open and willing to share what she has learned on her journey.
Some of the more challenging aspects of her disease are nonmotor symptoms such as depression, anxiety, and feelings of loneliness and despair, which blogging helps to alleviate.
As she adjusted to her new life, Dillard wondered if she'd ever find love again. Her last relationship ended years earlier and she hadn't dated much since. She was too self-conscious about her disease, she says, and the pressure of dating often made her symptoms worse.
Then, when she least expected it, she met someone. She ended up sitting next to a high school classmate at the dance recital of the daughter of a mutual friend. They reconnected at the event and soon scheduled a first date. “I remember deciding to tell him about my disease that first night,” she says. She was sure it would scare him away, but it didn't. “He said he already knew,” Dillard says. He told her he'd been following her career and life through their mutual friends.
Building a relationship while living with Parkinson's is a process, Dillard says. For now, she's happy and fulfilled working on her projects, raising her children, nurturing her relationship, and creating a network for others living with the disease. “I live each day to the fullest and with intention,” she says.
Off the Radar
The incidence of Parkinson's disease among African-Americans is low, but those who do have it may face unique challenges. Members of the Parkinson's research community are trying to identify and address those challenges.
When Victoria Dillard, an actress and dancer who is African-American, was diagnosed with young-onset Parkinson's disease at age 36, she felt isolated. Most of the people she encountered at her neurologist's office were white men over the age of 60, she says. In the years since her diagnosis, Dillard hasn't met many other young black women with Parkinson's disease.
Dillard's experience isn't unusual. Despite the fact that one of the best-known faces of the disease, Muhammad Ali, was African-American, the incidence of Parkinson's disease among blacks is about half that of whites, according to a study by Allison W. Willis, MD, MS, assistant professor of neurology and epidemiology at the University of Pennsylvania, published in Neuroepidemiology in 2010.
Fewer blacks may develop Parkinson's disease, but those who do are less likely to see a neurologist or to receive basic or advanced treatment, says Dr. Willis, who has conducted several national studies on Parkinson's disease care. They are also are less likely to receive deep brain stimulation (DBS). “We don't know why African-American patients are less likely to see a neurologist or receive DBS. It could be because they have milder forms of the disease or have contraindications to the medications or treatment. Some of the reasons could be positive, and some not. We just don't know,” she says.
In a 2012 study published in Archives of Neurology, Dr. Willis noted that blacks with Parkinson's disease were more likely to be diagnosed with dementia, which is associated with a greater likelihood of death. “But when you adjust for age, other health problems, socioeconomic status, and where they receive care, blacks with Parkinson's disease don't have significantly different mortality rates than whites.”
To get a better picture of how underrepresented minorities and women experience Parkinson's disease, Dr. Willis has initiated a study called IMPROVE (Medicare Parkinson Risks and Outcomes). She plans to enroll women and minorities with Parkinson's disease from around the country.
“We are offering free virtual evaluations and care,” says Dr. Willis. “We are trying to understand the unique risk factors for PD—including environmental and genetic factors—in these populations. We want to see if the symptoms and disease progression are different. We want to know how these groups respond to medication, if side effects are more or less pronounced, and what the best treatments are.”
IMPROVING ACCESS TO CARE
At Rush University Medical Center in Chicago, another study is underway to determine why so few African-American patients visit the movement disorders clinic. “We should have 1,000 patients who are African-American with Parkinson's disease, based on statistics. And we have only 170,” says Meagan Bailey, MD, assistant professor of neurology at Rush Health. Once she and her colleagues identify the reasons, they plan to work with the African-American community to address them.
With a grant from the Parkinson's Foundation, Dr. Bailey and colleagues Deborah Hall, MD, PhD, Sharlet Anderson, PhD, and Lisa L. Barnes, PhD, are trying to establish a Parkinson's disease Research Center of Excellence. They plan to collaborate with the African-American community to determine how to overcome any obstacles to care. “We are asking community leaders and African-American patients with Parkinson's disease to help lead us in the right direction,” says Dr. Bailey. “What does the community need? What interventions will be most helpful?”
As these studies indicate, researchers are trying to encourage more African-Americans to participate in clinical trials. One of the challenges is overcoming African-Americans' mistrust of the health care system and the feeling that they are being experimented on, says Jerome P. Lisk, MD, assistant professor of neurology at the University of Texas Northeast and director of movement disorders at the Christus Trinity Mother Frances Neuroscience Institute in Tyler, TX.
Past trials like the Tuskegee Syphilis Experiment, conducted by the US Public Health Service and the Tuskegee Institute, which enrolled poor black men, many of whom had syphilis, to watch how the disease progressed untreated, and the appropriation of the cancer cells of Henrietta Lacks without her or her family's permission or knowledge, may have contributed to African-Americans' wariness of the research community.
Despite these misgivings, scientists push on. At the University of Chicago, for example, researchers are currently recruiting African-American patients with Parkinson's disease for a study aimed at understanding the unique features of the disease in blacks, with the hope of improving health care among African-Americans in Chicago, and possibly nationwide. For more information about the trial, visit http://bit.ly/UC-AA-PD.
Identifying, understanding, and addressing any systemic obstacles to better health care and treatment for African-Americans with Parkinson's disease from all perspectives—the patient's, the physician's, and the health care system's—will likely improve diagnosis and treatment for all patients, says Dr. Lisk.