When Louisville native Muhammad Ali died last week at age 74 of complications from Parkinson’s Disease, the world lost an iconic athlete. But Ali’s advocacy and public struggle with his illness also made him a trailblazer in raising awareness about Parkinson’s Disease, particularly among African-Americans.
Parkinson’s Disease is a progressive nervous system disorder that affects people of all races. But research has shown that patients that are either African-American or of a lower socioeconomic status are worse off than white or wealthier patients when it comes to disease outcomes.
He was diagnosed with Parkinson’s in 1984 and remained in the public spotlight for the next 30 years, raising money for research and lobbying lawmakers for more funding.
“Just like a million other Americans who suffer from Parkinson’s, Muhammad is battling a relentless, remorseless, insidious thief,” Ali’s wife, Lonnie Ali, told Congress in 2002. “Parkinson’s recognizes no titles, respects no achievements nor bows to any amount of talent, courage or character. Parkinson’s does not discriminate. There is no question that Parkinson’s is the fight of Muhammad’s life.”
For some, the work of celebrity spokespeople like Ali and actor Michael J. Fox might have inspired a doctor’s visit to check out symptoms of Parkinson’s. But Dr. Michael Okun of the National Parkinson Foundation said as a prominent African-American Parkinson’s patient, Ali played an especially valuable role as an advocate.
“I think he was a real example for the African-American community and brought a lot of awareness for them about Parkinson’s, but there are still significant barriers to care,” Okun said.
Research has linked socioeconomic status to health outcomes, and in Kentucky, African-Americans have the lowest median household incomes. This can translate to no health insurance or infrequent doctor’s visits.
And even for people who do have a primary care provider, the early signs of Parkinson’s — like tremors — are often mistaken for routine signs of aging unless the patient is examined by a specialist.
“It’s very easy to miss Parkinson’s,” said Dr. Kathrin LaFaver, a neurologist and a movement disorders specialist with University of Louisville Physicians. “And if someone is in an environment that is not very health-literate, there’s definitely a problem of not getting diagnosed and treated in a timely manner.”
LaFaver said 90 percent of the patients who come to her clinic are white in a city where only about 71 percent of its citizens are such, according to U.S. Census data. And even when people do seek expert Parkinson’s care, LaFever said there are only three movement disorders specialists in Louisville.
To increase awareness about Parkinson’s Disease in minority communities, clinics often do outreach to educate people about the symptoms. In Louisville, the Parkinson Support Center of Kentuckiana just began holding support group meetings in predominantly black West Louisville last month.
Parkinson’s affects people of all races, said Executive Director Erika Branch, but “you don’t hear about it a lot other than someone like Muhammad Ali. But it’s in all communities, definitely all races, and it’s just finding a face and an advocate to be the voice across the board for everyone. So he’s definitely an inspiration and a voice of all for the disease when it comes to being a face for Parkinson’s.”
Michael Okun said although Ali’s legacy is multifaceted, his example as a man who had Parkinson’s Disease but kept on living is what he’ll be remembered for in the medical community.
“Ali really brought that appreciation, both of the disease and some of its symptoms, but also that you could live with the disease for a very long time and live a good, hopeful and meaningful life,” he said. “As an extension to that, having an African American actually be a spokesperson for Parkinson’s Disease was huge, for the community that has been underserved, particularly in this area, to have someone of his stature come out and say ‘I have Parkinson’s Disease, but Parkinson’s Disease doesn’t have me,’ it was really an important moment and very defining for that community.”