Black Adults Face Delays in Parkinson’s Diagnosis and Treatment

There is no blood test or lab test to diagnose Parkinson’s disease, though that could change. For now, doctors rely largely on symptoms when making a diagnosis. “And the common one we’ve been taught is a tremor,” Branson says.

However, an estimated 25 percent of people with Parkinson’s disease, which mostly affects adults 60 and older, don’t have a tremor, she notes. And it’s possible that some of the other early symptoms of Parkinson’s — dizziness, stiffness and vocal changes, like the speaking problems Huckabee experienced — are easy for both doctors and patients to overlook or attribute to other age-related conditions.

Odinachi Oguh, M.D., a Parkinson’s specialist at the Cleveland Clinic’s Lou Ruvo Center for Brain Health in Las Vegas, has seen this firsthand. She notes that Black adults have higher rates of type 2 diabetes, high blood pressure and osteoarthritis, and may “blame their symptoms on those other, more historically common diseases.”

One study, published in the Journal of Cross-Cultural Gerontology, found Black adults were more likely than their white counterparts to regard Parkinson’s symptoms as normal signs of aging.

“We have to reintroduce Parkinson’s disease to people,” Branson says, referring to both patients and providers. “It’s not just tremor.”

It’s also not something that just affects older white men, which experts say is a common association. “That’s been the face of Parkinson’s disease for so long,” says Huckabee, who is now a research advocate with the Parkinson’s Foundation and often speaks to medical students about Parkinson’s disease in the Black community.

Some studies have found higher rates of Parkinson’s disease in white adults than in Black adults. However, Black adults are most likely underrepresented in those studies, experts say. Researchers still don’t have an estimate of how many Black individuals in the U.S. are living with Parkinson’s disease.

Pursuing a Parkinson’s diagnosis

If you feel like your movements have changed — you’re blinking your eyes a bit too slowly or it’s harder to move your hands and feet — talk to your doctor about Parkinson’s disease, Branson urges. “It may be the arthritis, but just to have that conversation in the first place, I think, is very important,” she says.

You can also ask your doctor for a referral to see a specialist. It took nearly a decade of inconclusive tests and misdiagnoses before Huckabee was referred to a neurologist, and research shows he’s not alone. A study published in 2017 in the journal Neurology found that Black patients were 30 percent less likely to see a neurologist than white patients, even after researchers adjusted for insurance status and other potentially prohibitive factors.

Huckabee’s advice: If you think something is wrong, “become your own health advocate,” he says. “I don’t want anyone to have to wait nine years or longer — or even five years — to get diagnosed when they have an issue.”

While there is no cure for Parkinson’s, Oguh says we’ve made advances in how the disease is managed with medications and other therapies that can help with symptoms. A late diagnosis, however, delays the start of these treatments, putting patients at a disadvantage. Studies show that treatment delays are associated with higher rates of severe symptoms, even death.

“It would have been so much better for me to get started on the pathway that I’m on now earlier than later,” Huckabee says.

Closing the gap

If you are diagnosed with Parkinson’s, know that it’s “not a death sentence,” says Huckabee. “You can still do things.”

He stays active in the community, exercises regularly and travels around the world with his wife. Huckabee also participates in Parkinson’s research studies, which researchers say is key to closing the gap in the disease’s disparities.

“The knowledge we acquire from a lot of these diseases is by observing patients,” Oguh says. “And there still is a deficit of Black and brown people in the clinical trials that we run.” According to 2020 data, Black Americans accounted for 8 percent of all clinical trial participants; 75 percent were white.

“If we don’t have an adequate representation of the community that we serve, we may miss something,” says Branson, who is involved in a research project called PD GENEration with the Parkinson’s Foundation that offers free genetic testing and genetic counseling for people with Parkinson’s disease. The study aims to help scientists better understand Parkinson’s risk factors and potential treatments.

Parkinson’s studies are underway at the Cleveland Clinic, Oguh notes, and you can learn about other research opportunities from your doctor or on the websites of the Parkinson’s Foundation or The Michael J. Fox Foundation for Parkinson’s Research or on ClinicalTrials.gov.

Huckabee says his involvement in research, specifically exercise studies, have helped him immensely. He was even able to reduce the number of medications he was taking for his symptoms. “There’s hope with this disease,” he says.