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.
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.