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Why is Parkinson's disease underdiagnosed in the Black community?
By Juliet Martinez
The Glen Hazel senior high rise community room was near capacity in May as a lanky young man wearing sweats, a black hoodie and a backwards sun visor led the seniors in a series of exercises.
Although exercise like this helps everyone, the presentation organized by the Parkinson’s Foundation of Western Pennsylvania was aimed at teaching the group some key facts about the fastest-growing neurological disorder in the world.
The trainer, Robert Boatright, owner of Grind Hard Training in the East End, demonstrated as the seniors followed: They stretched their arms up, then bent forward to reach for their toes. They circled their arms and stood with bent knees, shifting their balance and kicking one foot out at a time. Some of the seniors moved stiffly, but one older man with an impish grin put a rhythmic spin on it, bobbing his head and dancing back and forth.
About 2% of people over 65 get Parkinson’s disease, which is second only to Alzheimer's for the number of new cases every year. Because of southwestern Pennsylvania’s aging population and its legacy of steel mills, coke oven and coal mines, that percentage is closer to 3% with at least 15,000 cases.
In the U.S., 1.2 million people have the disorder; this number is expected to double by 2040. But because of a combination of factors, not everyone over 65 is learning about the disorder or getting screened for it.
“Just know one thing, y’all. Movement is medicine,” Mr. Boatright said as the seniors waved their arms in big circles.
While Parkinson's disease is a “huge issue,” according to Christine Haythorn, executive director of Parkinson Foundation of Western Pennsylvania, “If you're Black, nobody even thinks that this is something that could happen to you.”
She said a common misconception among doctors and even neurologists is that only white men get Parkinson’s disease, adding that this compounds other barriers to medical care Black elders are facing, like lack of health insurance or medical racism.
At a lunchtime Parkinson’s Foundation event in Homewood, Anna Porter of Brighton Heights said here in Pittsburgh the medical care Black people get is often sub-par.
“I'm a breast cancer survivor,” she said. “I'd say, ‘It hurts here’ and they would say, ‘No it doesn't.’”
She said doctors have discounted her experience because it did not fit what they expected.
“It's my body! I'm telling you it hurts,” she said.
What Ms. Haythorn calls “an understandable lack of trust” contributes to doctors failing to diagnose or taking longer to diagnose Parkinson's in Black people. Once diagnosed, they get less medication and therapy than white Parkinson's patients.
“We are really trying to educate and spread the word,” Ms. Haythorn said. “And bring exercise to them. And we're doing it in a way that isn't just for Parkinson's disease, it's for anyone with a mobility issue who could benefit from better balance.”
The Parkinson’s Foundation of Western Pennsylvania is trying to reach out to Black communities and address disparities in their outreach. As part of that effort the foundation has received a grant from the Pittsburgh Foundation to launch 15 twice-weekly exercise classes at CitiParks Healthy Active Living Senior Centers, churches, AARP meetings, and senior high rises throughout the region by the end of the year. They met with more than 600 people in the first half of 2023, bringing food from Black-owned caterer Kitchen of Grace and partnering with five Black physical trainers.
The foundation's goals are to help people recognize the signs of Parkinson's, start exercising more and stay socially connected.
Regular exercise is one of the best ways to reduce the severity of Parkinson’s symptoms and doing it in a group setting helps address the lesser-known psychological aspects of the disease.
“A sad thing about PD is that apathy and depression and anxiety are symptoms of the disease. So it's really hard to get people to exercise when they're trying to overcome that, let alone a tough diagnosis,” Ms. Haythorn said.
The most common symptoms of Parkinson’s are bradykinesia or slow movements, a tremor in an extremity at rest, balance issues and rigid muscles. But depression, anxiety, sleep problems, loss of smell, restless legs, constipation and a loss of facial expression may also be present. Not everyone connects these symptoms to a possible neurological problem. Many assume they are just getting older.
“It takes a long time to develop symptoms and by the time those symptoms are evident, 70% or more of the nerves in the brain are already damaged. There's no bringing them back,” Ms. Haythorn said.
She said she hears from people who were only recently diagnosed that they lost their sense of smell many years ago. Roughly 50% of people with the disease have lost their sense of smell.
Genes plus environment
“We don't really know what causes Parkinson's,” said Dr. Rosnhi Patel, a movement disorder specialist and Parkinson’s researcher at the Jesse Brown Department of Veterans Affairs Medical Center in Chicago during a call in June. The prevailing hypothesis is that it's probably a combination of genetic risk factors and environmental exposures.
But identifying those exposures is tricky because the disease takes decades to appear. So when someone is diagnosed, their doctor tries to piece together a picture of what toxins they may have been exposed to 20 or 30 years previous. In some cases, though, the probable cause is easier to pinpoint.
“People who are exposed to steel processing plants probably have some increased risk for developing Parkinson's because of manganese exposure,” Dr. Patel said. “There's definitely a connection between steel/manganese associated with Parkinson's.”
Other known occupational risk factors include exposure to an industrial solvent called trichloroethylene (TCE, also called trichlor, trike or tri). A study released in May found that military veterans who were stationed at Camp Lejeune in North Carolina in the early 1980s have a 70% higher risk of Parkinson’s because of TCE contamination in the water supply. Long-term exposure to herbicides and pesticides used in farming are also associated with a higher risk of the disease.
Dr. Patel said there are probably many other factors that contribute to a person’s Parkinson’s risk, like having a head trauma. But they may have protective factors at play as well, like drinking coffee and exercising regularly.
But whether the simple fact of being Black protects people is a mystery, even though fewer Black people are diagnosed with Parkinson’s. Dr. Patel said that may have more to do with how research has been conducted.
“The problem with Parkinson's research, until very recently, is most of Parkinson's research was done on white men,” Dr. Patel said. “It is true that Parkinson's is more common in men, but it was out of proportion.”
Among Parkinson’s cases, about 60% are men and 40% are women. But Dr. Patel said many research trials have had as many as 95% male subjects who were predominantly white.
“That's a huge gap because our understanding of Parkinson's is really our understanding of Parkinson's in a very homogeneous population,” she said. “It's probably underdiagnosed and undertreated in certain communities like rural communities, communities of color.”
The history of a place
The issue with communities like these is that disinvestment and lack of healthcare access go hand in hand, said Christine Muganda, the data and analytics team leader at County Health Rankings.
“The history of a place has a lot to do with the opportunities that are available in that location,” when it comes to health, she said, pointing out that neighborhoods that experienced historical redlining often have lower health rankings. Redlining is a discriminatory practice that involves systematically refusing to insure properties, approve mortgages or provide other financial services in neighborhoods that are predominantly non-white. It is now outlawed, but its legacy persists since the mid-20th century, when it was common and legal.
Dr. Muganda said in Pennsylvania, Chester County has the highest health ranking. It is a mostly white county, which often correlates to higher access to health opportunities like seeing a doctor or taking a walk in a park. The lowest-ranked county is Philadelphia, which contains many formerly redlined neighborhoods and much higher racial diversity.
Allegheny County ranks number 27 out of the state’s 67 counties, so not bad. But the average life expectancy for Black people here is more than seven years less than that of white people at 78.8 years. Black people also die before age 75 almost twice as often as white people do. Black elders may not be living long enough to get diagnosed with Parkinson’s.
“Most people with Parkinson's disease have had it for eight to 10 years before they are diagnosed,” Ms. Haythorn said.
Now what?
Those who suspect they may have Parkinson’s should see a movement disorder specialist, she said. General practitioners and neurologists have limited knowledge of Parkinson’s treatments, especially the newer medicines and therapies.
“If you're not a movement disorder specialist, you don't know about these drugs and how to prescribe them,” she said.
The key to preventing Parkinson’s disease rates from rising further is greater environmental regulation, Ms. Haythorn said.
The Netherlands is the only country where Parkinson’s rates are falling. Although the reason is not known for sure, the trend has followed the country’s outlawing of a range of toxic chemicals, banning TCE and pesticides linked to Parkinson’s, as well as reducing air pollution, which is also linked to Parkinson’s.
Ms. Haythorn said many of the toxic substances thought to cause the disease are banned around the world, but not here.
“This could be preventable, and we're choosing not to address it,” she said.
Learn more:
Local movement disorder clinics in the UPMC and Allegheny Health networks
Juliet Martinez is the managing editor of The Homepage.