Lonnie Ali Shares A Parkinson's Disease Caregiver's point of view

Hope that floats like a butterfly

Lonnie Ali was six years old and had just gotten home from school in Louisville, Kentucky, when she saw a crowd of boys gathered around a handsome young man in a white shirt, a bow tie, and black dress pants. “Look,” said her mother, standing in the doorway, “that’s Cassius Clay.”

Clay, who would soon claim the first of three heavyweight boxing titles and adopt the Muslim name Muhammad Ali, made a point of calling the shy little girl over. And from then on, she recalls, whenever he visited his mother across the street, he stopped by her house as well. “He was like a big brother,” she says. “He’d sit and talk, and I’d believe what he said before I’d believe my father. I figured my father would tell me stuff just because he wanted to protect me, but Muhammad would tell it to me the way it was.”

They remained friends, even as he became a world champion and she went off to college, where she got a psychology degree and then an MBA. When she was 17, Lonnie says, she realized that she would marry him someday—“I knew it was fate,” she says. Twelve years later, she did, becoming the boxer’s fourth wife. Muhammad had recently been diagnosed with Parkinson’s disease, but the diagnosis didn’t faze Lonnie. “I knew the man, not the celebrity,” she says. “That’s who I loved. And he knew I would always be in his corner.”

For a long time, Muhammad’s disease barely slowed him down. Lonnie was more of a care partner than caregiver, nudging her husband to take his medicine and accompanying him to doctors’ appointments. But gradually, his symptoms became more intrusive. One turning point occurred about 15 years ago, when the couple were out to dinner in Boston. “Muhammad went to put food in his mouth and he froze,” she recalls—temporary immobility is characteristic of the disease. Another was when the famously animated boxer became stone-faced, also a classic sign of the disease. “Then I knew I had some challenges that I really needed to deal with and learn about,” Lonnie says.

The challenges have been practical, emotional, and psychological as much as medical. Lonnie has had to recognize her own limitations: At one point five years ago, as she cared for her husband, mothered their teenage son, Asaad, and ran a business, among other things, she felt so unfocused, she thought she had attention deficit disorder. “I went to the doctor and fell asleep in the waiting room,” she says. “The doctor said, ‘You don’t have ADD. You’re sleep-deprived.’”

She’s also had to learn to accept what she can’t control. Muhammad is still a big man, with piercing eyes and muscular arms, the result of working out every day. But his disease means that this man of unparalleled physical gifts now walks haltingly; once famous for his banter, he often sits in silence. “I’ve been with him for so long, I can basically look at him and tell what he wants and needs,” Lonnie says.

Yet the illness can steal only so much, and Muhammad still has plenty he wants to do. A quarter of a century into his struggle with Parkinson’s disease, he’s taking piano lessons. Most important, this lifelong supporter of humanitarian causes still feels he has a mission to help other people. Early in his disease, Muhammad shied away from the spotlight. “He used to play to the camera, but the camera was no longer his friend,” Lonnie says. But then he made an appearance with Michael J. Fox, also a Parkinson’s sufferer, who has been open about his own movement problems. “I think he thought, If Michael can do it, I can do it.”

Now Muhammad Ali doesn’t care what people think when they see him. Early this year, in an essay for National Public Radio’s “This I Believe,” the boxing legend wrote about carrying the Olympic torch to light the cauldron at the 1996 Summer Games in Atlanta and realizing that his tremors had taken over. “I heard a rumble in the stadium that became a pounding roar and then turned into a deafening applause,” he wrote. He understood then that Parkinson’s had not defeated him.

“There’s still a lot for me to learn from him, and I never forget that,” Lonnie Ali says. “Muhammad was the epitome of strength and beauty, but could someone with physical challenges really relate to him? Probably not. But now they can identify with him. We used to get letters all the time about people with Parkinson’s who wouldn’t go out of the house, but because they saw Muhammad out, now they go out.

“He still has that power to inspire people—without even opening his mouth.”