En español | The caregiver edges closer to her frail loved one, a physically diminished figure of greatness whom she continues to admire, cherish and forever share with the world. Steadfast and selfless, Lonnie Ali has towered in her husband's corner for many long, challenging years. At this moment, a butterfly-shaped cardboard piece designed to enhance fine motor skills gets the best of the man who once stung like a bee, the incomparable Muhammad Ali. Now 72, and in the third decade of a courageous fight against Parkinson's disease, Ali grips the colorful butterfly with a slightly gnarled right hand and tries to aim a string through a hole.
As Ali sits in his motorized brown-leather chair at home in Paradise Valley, Ariz., his legs appear thin but his forearms are smooth, tan and steelworker-hard. So is his resolve. As happened often in the ring, this once-graceful, powerful man refuses to capitulate, no matter the odds. Eventually, with Lonnie's help, he catches the butterfly just right and threads the hole.
"Parkinson's has taken away a lot from this man — a lot that would put people in bed, make them cover their heads and never look up,'' Lonnie explains later. "He has a lot to be depressed about. The adjustment [has been] terrific.
"But I think he is secure in who he is, and about his place in history. That's not to say Parkinson's hasn't changed him — it has. But he still has enough sense of self and dignity that he maintains."
The Ali caregiving story is about love, companionship and devotion. It is the story of a brave, spiritual couple joining hands and going the distance in a difficult fight against an insidious disease. And of a smart, tough, resilient woman serving as the voice, guiding light and conscience for an all-but-silenced superstar athlete and civil rights activist.
It is also about faith.
"We are on this journey for a reason, I know that — whether it was to bring attention to this illness [or] whether it was to save his mortal soul," Lonnie says. "Muhammad is a very spiritual person. Lord knows this has made him more reflective and pensive."
In many ways, minus the Ali family's fame and financial wherewithal, the story line is similar to what millions of caregivers endure every day in America: the guilt and loneliness, joy and exasperation, frustration and anxiety, and the challenge of learning how to accept what Lonnie calls a "new normal."
"The hardest part for any caregiver, whether it is a child, parent or spouse, is the relationship change," Lonnie says. "The relationship changes over time with the illness. Physically, [patients] are not as mobile; they are not able to do things with you like they used to. The medications might affect their cognitive ability. They may not be able to speak as well. … That is where you [transition] from a wife or a husband to a care partner or caregiver."
The biggest potential danger, Lonnie cautions, is that caregivers "must guard against becoming bitter because you feel like your life is being robbed from you. And to not let the person you are caring for become bitter in the sense that they feel guilty — 'I am robbing you of your life.'"
"That just makes [the] depression even worse," she says. "To be honest, I can deal with Parkinson's all day. Depression is scary. It affects everyone differently. Trying to get past that slippery slope, and getting them out of that hole, is not easy."
The death of his mother, and the passing of archrival Joe Frazier in 2011, "really affected Muhammad," Lonnie says. "For some reason, I think Muhammad felt better when both he and Joe had space on this earth. I just didn't want him to get depressed thinking about his own mortality."
It was 50 years ago in February when cocky, young Cassius Clay first defeated Sonny Liston to become heavyweight champion of the world, then announced he was converting to Islam and changing his name to Muhammad Ali. For decades, he was one of the world's most famous and admired figures — not only as a boxer, but also for his stands on racial justice and religious tolerance. But Ali has become increasingly private in recent years as his ability to speak has deteriorated.
On a refreshing spring day, optimism is in the air. Lonnie grants a rare interview at the couple's desert home in an exclusive, gated Phoenix-area subdivision. Two expansive palms and a blooming mesquite tree frame a rectangular pool. Colorful flowers enliven a peaceful setting that includes singing birds and a small fountain.
The champ at home
A surge in spring pollen has renewed Ali's allergies. Fortunately, they are not so bad that he needs his breathing machine. He remains in the house watching the old Western TV series Bat Masterson as Lonnie, 57, casual in a peach-colored blouse, blue slacks and white athletic shoes, offers insight into the round-the-clock life of caregivers.
In her case, that includes her sister Marilyn, 51. The family also employs a housekeeper, gardener and other help.
With degrees from Vanderbilt University (psychology) and UCLA (Master of Business Administration), Lonnie is every bit the inspiration her spouse is. She is a committed wife and mother and a tireless advocate for Parkinson's research. AARP honored her with an Inspire Award in 2010.
A pragmatic businesswoman who built a postcareer branding strategy she has called "Corporate Ali," she is the person most responsible for building upon, preserving and safeguarding the Ali legacy. She organized his once-precarious finances while giving him the best life possible during a slow progression of the debilitating disease.
"I am so fortunate," she says. "I have a husband who doesn't complain about anything. He is not a moaner, a whiner or a poor-me kind of person. Muhammad has learned how to not sweat the small stuff. He is amazing that way."
Advice for caregivers
Lonnie Ali uses several coping mechanisms in her role as caregiver.
One piece of advice she offers others filling that role: Learn to care for the caregiver — yourself.
Three times a week, Lonnie attends Pilates classes. She makes it a point never to miss her doctor's appointments because "I know if something happens to me, it is going to be bad for him."
She also recommends knowing when to ask for help. As her husband's illness intensified, Lonnie realized she needed more aid.
"As long as Muhammad was fairly independent, it wasn't a big deal," she says. "But when he required more attention, I would be stupid not to think I didn't need some assistance. Frankly, I could not do this if my sister did not live with us."
Research and education are paramount, as is being well-organized.
"When you get up, you have to start planning their day," she says. "What am I going to make for breakfast? What is he going to wear? What doctor appointments does he have? What are we going to do today?" To keep track of her husband's cocktail of medications, Lonnie keeps an app on her smartphone and regularly monitors his activities, appointments and any physical changes. "We have a daily sheet, because you forget things," she says. "What time did he get up? How did he sleep? When did he last go to the bathroom?" Keeping up-to-date on medical needs is critical, too.
After Lonnie gave a speech on Parkinson's disease, a health care worker told her they had lost a patient to a melanoma lesion that had formed on the sole of his foot.
"Turns out Parkinson's patients are very susceptible to skin cancer," she says. "Now we haul Muhammad in every year for a strip-down checkup."
A love story begins
Lonnie understands her husband better than anyone. No wonder: They have known each other for more than 50 years.
Their families lived across the street in Louisville, Ky., when Yolanda Williams, an exceedingly shy 6-year-old Catholic schoolgirl, met the brash 21-year-old young boxer then named Cassius Clay.
When he would return home to visit, the children in the neighborhood were mesmerized. "Whatever you were doing, you dropped it — he was the entertainment," Marilyn says. "It wasn't like, 'Oh, hi, guys.' He took time with us."
Lonnie recalls: "Here was this big, beautiful specimen of a human being — I mean, gorgeous. He had everything — everything.'' At 17, she says, she knew she would spend the rest of her life with him.
Their relationship began more as big brother-little sister. It deepened after Ali's third divorce, during a period when his symptoms of slurred speech and unsteady gait became obvious.
Ali was diagnosed with Parkinson's syndrome in 1984, after he displayed symptoms of the illness. By the time they wed in 1986, five years after his last fight, Lonnie was 29 and Ali 44. (The couple adopted a son, Asaad, now 23. Ali has eight other children.)
The diagnosis of Parkinson's syndrome "didn't really disturb me because I grew up with a father who had polio," Lonnie says. Parkinson's is often associated with head trauma. It remains unknown whether boxing caused, or contributed to, Ali's affliction. "It started in Muhammad's thumb," Lonnie recalls. "That is where I saw the first tremor when he prayed."
Initially, Lonnie focused on making sure her husband ate nutritiously and took his medication. That was a big challenge, because "I never knew Muhammad to even ask for an aspirin or have a headache," she says. Ali put the pills in saucers or potted plants — everywhere but in his mouth.
Dealing with Parkinson's
Over the years, the symptoms worsened, including an often-blank expression caused by rigid facial muscles, a shuffling gait or "freezing" in place, and a hushed voice. Parkinson's-related issues of constipation and sleep disturbances also complicated his condition.
Several years ago, when Ali began having difficulty writing and noticed tingling in his toes, doctors diagnosed spinal stenosis, a narrowing of the spinal canal. He underwent surgery in 2005.
While potential falls by her husband remain a fear, Lonnie says that managing the illness with pharmaceutical therapies worries her more. "Over time, [patients] develop side effects, and I wish that didn't happen," she says. "It can really alter a person's personality and perspective." Flexibility is essential in friends and caregivers. And expectations can go unfulfilled.
In April, Ali was scheduled to appear for the 18th consecutive year at a gala in Phoenix to support Parkinson's research. He made it to the resort, but not out of the green room, because he wasn't feeling well. Not even the sight and sound of good friend and comedian Billy Crystal could change the outcome.
"Everything now is about protecting him and making sure he is healthy," says Marilyn.
That means carefully monitoring something as innocuous as the sniffles. Abraham Lieberman, medical director of the Movement Disorders Program and the Muhammad Ali Parkinson Center in Phoenix, visits Ali every other Sunday.
"When there is influenza, we don't go to the movies," Lonnie says. "We don't want him exposed."
The Alis' home is filled with candor, and with optimism. "Everyone in this house is at his beck and call," Lonnie says, smiling. "Anything he wants, he knows we will do it for him. In a way, that's not good. I think that's why his voice is not as strong as it could be. We can read him — he doesn't have to talk."
In 2013, doctors performed surgery in Boston on Ali's vocal cords, which had become thin and brittle. Ali never has been a big fan of voice and speech therapy, so the surgery had limited benefits. His speech remains restricted.
Yet, rarely does a whisper of complaint come from the man known as "The Greatest."
"This is the beauty of Muhammad. He has made this illness, as horrible as it is, as much as it has taken away from him, serve him in some way," Lonnie says. "If there was ever anyone who always lands on his feet, and comes out smelling like a rose, it is Muhammad. It is his remarkable attitude toward life. He never has let anything stand in his way."
Jon Saraceno, who first met Ali covering boxing for USA Today, is freelance journalist covering sports and pop culture.
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