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Black Adults Face Delays in Parkinson’s Diagnosis and Treatment

One man living with the disorder offers advice on how to overcome disparities


spinner image Home caregiver and senior man holding hands.
Getty Images

Richard Huckabee first noticed something was off in 2004.

That’s when the public speaking pro suddenly found himself struggling to talk. “My voice was so raspy and so strained,” says Huckabee, now 63.

In meetings, he says, his voice would “freeze” and “crack.” He went to the doctor, but they couldn’t find anything wrong.

As the years went on, other concerning symptoms emerged. Huckabee’s body would seize up, and his movements became slower. “My left side would hardly move,” he recalls.

He endured nearly a decade of doctor’s appointments, emergency room visits and medical tests, and still didn’t have an answer for what was causing these concerning and disruptive symptoms. Huckabee was told it might be Lyme disease, or perhaps stress.

Finally, he was referred to a neurologist, and after about 10 minutes, he had a diagnosis: Parkinson’s disease — a chronic neurodegenerative disorder that affects movement.

“I was devastated. Nine years in and out of hospitals, doctor’s offices, emergency rooms, and it took a neurologist 10 minutes to diagnose me with Parkinson’s disease,” says Huckabee, who is African American and lives in the Cleveland area. “I was happy to know what I had, but also devastated to know what I had, and that it took so long.”

Reintroducing Parkinson’s disease

Huckabee’s experience is not unique. Research shows that Black adults with Parkinson’s disease are less likely to receive a diagnosis than their white peers, and if they do get one, they’re more likely to get it later in the disease process. A study published in the journal Parkinsonism & Related Disorders found that Black patients were four years older than white patients at the time of their Parkinson’s diagnosis.

spinner image Richard Huckabee and his wife Angela
Richard Huckabee, 63, and his wife, Angela. Huckabee was diagnosed with Parkinson’s disease in 2013, nine years after symptoms first began. Research shows Black adults in the U.S. are more likely to receive a Parkinson’s diagnosis later than their white counterparts.
Courtesy Richard Huckabee

Factors that fuel other health disparities, such as access to health care, may be at play, but they aren’t solely to blame, says Chantale Branson, M.D., a movement disorders specialist and an assistant professor of medicine at Morehouse School of Medicine in Atlanta. Instead, she says, a lot has to do with our perception of Parkinson’s, which affects around 1 million older adults in the U.S.

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.”

10 early warning signs of Parkinson’s disease

  • Tremor
  • Small handwriting
  • Loss of smell
  • Trouble sleeping
  • Trouble moving or walking
  • Constipation
  • Voice changes
  • Masked face
  • Dizziness or fainting
  • Stooping or hunching over

Source: Parkinson’s Foundation

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.

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