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."
Next page: Ali and Lonnie's love story. »