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Parkinson’s Is Not Just a White Man’s Disease

Black people can and do get diagnosed. Here’s what to do if it touches your family.

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During her time in graduate school, Tyaisha Blount-Dillon started experiencing a number of unusual symptoms. She often felt lethargic. One day while taking a nap, she had a hard time turning over. “My body was like lead,” the now 43-year-old from Atlanta recalls. In 2003, her muscles also cramped at times. “That’s when I was like, ‘I really need to see someone about this, because when my muscles cramp, I cannot walk,’” she says. At first doctors dismissed her symptoms, but 10 years later, a physician finally diagnosed her with Parkinson’s disease.

Parkinson’s is a disease that can be successfully managed, but it’s important to be proactive about your care.

Parkinson’s is a nervous system disorder that affects the body’s movements. It occurs when nerve cells in the brain weaken or die. For the nearly 1 million people in the U.S. living with the disease, symptoms can include tremors, muscle stiffness and slow movements, all of which can make simple daily activities such as walking, dressing and bathing more difficult. Other less recognized symptoms include a reduced arm swing, smaller handwriting, depression and anxiety. While most people with Parkinson’s are 60 or older, about 5 to 10 percent, like Blount-Dillon, have early-onset forms of Parkinson’s disease, meaning they were diagnosed before age 50.

Though such notable Black celebrities as civil rights activist Jesse Jackson, the late boxer Muhammad Ali and the late singer Maurice White of Earth Wind & Fire all faced a Parkinson’s diagnosis, “a lot of people think it’s a white man’s disease,” says Lynda Nwabuobi, M.D., a movement disorders neurologist at New York-Presbyterian/Weill Cornell Medical College’s Parkinson’s Disease and Movement Disorders Institute.. But as Blount-Dillon’s case shows, it can affect Black women or, more likely, our husbands, fathers and brothers. To raise awareness in the Black community, Dr. Nwabuobi started an initiative called Neurology at the Farmers Market, where each summer she sets up tables at local farmers markets and lets people know about Parkinson’s and other movement disorders. The information she shares can potentially lead to earlier diagnoses and less suffering in the long run.

Early treatment is key

Black Americans are more likely to start getting treated for Parkinson’s at a later point in the disease’s progression than white Parkinson’s patients, Dr. Nwabuobi says. As a result, we often have greater disability, we’re more physically impaired and the disease is more advanced when we begin treatment.

To get the word out to the Black community, Lynda Nwabuobi, M.D., started Neurology at the Farmers Market, where she sets up tables at local farmers markets and lets people know about movement disorders.

Though there is no cure for Parkinson’s, when someone is diagnosed early on, they may be able to benefit from lifestyle changes such as exercise, as well as from medications and surgeries, all of which can make living with Parkinson’s easier and slow the progression of the disease. Blount-Dillon credits juicing, cycling and working with a personal trainer with helping her manage symptoms.

Choosing where to get your care is also important. Black people with Parkinson’s are more likely to be treated by their primary care physicians, while white people are more likely to be referred to and treated by specialists, says Dr. Nwabuobi. “This is important because studies have shown that people with Parkinson’s get better care when they’re managed by a neurologist or a movement disorder specialist.”

Managing a Parkinson’s diagnosis

As women, we’re often the ones who make sure the men in our lives get the medical attention they need. Dr. Nwabuobi offers this advice to people who notice any Parkinson’s symptoms in themselves or their loved ones:

• If your doctor doesn’t automatically refer you to a neurologist, ask for a referral.
• Get a second opinion if you think you are not being heard.
• If a neurologist diagnoses you with Parkinson’s, ask to be referred to a movement disorder specialist, a physician who provides even more specialized care for the condition.

You can also learn more through organizations such as the Parkinson’s Foundation and the American Parkinson Disease Association.

Parkinson’s is a disease that can be successfully managed, but it’s important to be proactive about your care.

If you do face a Parkinson’s diagnosis, “you have to take your power back,” Blount-Dillon says. “You have to advocate for yourself.”