One of the most enduring images of Muhammad Ali is him lighting the torch, his arm shaking, at the Atlanta Olympics in 1996. It was a telltale sign of his Parkinson’s disease, and he didn’t try to hide it.
Advocates say the boxing great transformed the public’s understanding of the disease and showed that patients can live long, productive lives — Ali for three decades — instead of sitting at home, hoping for a cure.
Other celebrities with Parkinson’s include actor Michael J. Fox, former U.S. Attorney General Janet Reno and singer Linda Ronstadt. But perhaps because the “fighter” analogy is so often linked to patients facing difficult illnesses, Ali’s influence was unique.
“His involvement with Parkinson’s disease was really transformational for the field. Before Ali, there wasn’t that much known about Parkinson’s disease” among the public, said Dr. Michael Okun, neurology chairman at the University of Florida and medical director of the National Parkinson Foundation. “People mistook it for Alzheimer’s or ALS, and didn’t realize that you could potentially live a long happy life with Parkinson’s disease with the right cocktail of medicines, therapies and good expert care.”
Parkinson’s is a degenerative neurological disease with no cure. Symptoms can include stiffness, tremors, a shuffling gait and sometimes dementia. As many as 10 million people worldwide have the disease, and about 60,000 Americans are diagnosed annually, according to the Parkinson’s Disease Foundation.
Most people are diagnosed after age 60. Ali’s diagnosis came in 1984 at age 42, after retiring from the ring. He lived nearly half his life with the disease.
He later became an advocate for raising awareness, lending his name and wealth to Parkinson’s research. In 1997, he helped establish a Phoenix neurological center that bears his name.
When Ali went to Congress in the 1990s seeking research dollars, “he was the first major celebrity to really bring traction,” Okun said. “But more than that, he brought a sense of hope.
“When he traveled the world and really carried his message, he showed people, ‘I have Parkinson’s disease but Parkinson’s disease doesn’t have me,'” Okun said.
Daniel Novak of Fort Worth, Texas, leads the Parkinson’s Disease Foundation’s People with Parkinson’s Advisory Council. In a telephone interview Sunday, he said Ali’s optimism facing the disease was inspirational and contagious.
Novak, 59, is involved in a Parkinson’s boxing group and says “throwing punches” makes patients feel powerful, “like we’re punching out Parkinson’s.”
Ali’s efforts led to research that has improved patients’ quality of life, including an understanding of how exercise started soon after diagnosis can help reduce symptoms, said Dr. Holly Shill, the director of the Arizona center. She said he helped patients face the disease like he did, “with grace and humor.”
Parkinson’s patients at the Phoenix center shared what the boxing champion meant to them in a video tribute the center released after Ali’s death Friday.
“When you have Parkinson’s, you have to have mental attitude to keep going and not let Parkinson’s get to you. You have to fight it and he was a fighter,” Aileen Fuller said on the video, her halting voice a sign of the disease.
“He became the face of our fight,” George Prescott said on the video.
The mainstay of Parkinson’s treatment is medication that helps control symptoms, but researchers are investigating potential ways to slow progression of the disease, including using fetal cells and stem cells, said Dr. Tao Xie, a Parkinson’s specialist at the University of Chicago. A search for biomarkers that could lead to earlier diagnosis and treatment is also underway, Xie said.
Ali’s death brings fresh attention to the disease, and Xie said scientists are optimistic about finding better treatments and eventually a cure.