SPRING HILL — In those first two years, her husband used chopsticks again. He also oiled door hinges, slow danced at a party, remembered his hairdresser's name. He rewatched When Harry Met Sally and blurted "I'll have what she's having!" before the woman in the diner did.
Mary Newport, who is a physician, didn't think she had found a cure to reverse her husband's early onset Alzheimer's disease. But she was convinced the coconut oil she had begun giving Steve in May 2008 had eased his symptoms.
The Newports' story, first told in the Tampa Bay Times in 2008, went global. Mary Newport heard from thousands of people. She lobbied researchers, politicians and support groups to study the effects of coconut oil on Alzheimer's patients. She even wrote a book she says sold more than 50,000 copies.
Over the next five years, Steve, now 63, got worse, then got better — a cycle repeated many times. Last week, a seizure thought to be related to his Alzheimer's landed him in the hospital for three nights.
The disease won't go away. But neither will Dr. Newport.
Taking coconut oil is a scientifically untested and unproven treatment for Alzheimer's, dismissed by much of the scientific community. But Dr. Newport's collection of positive anecdotes about nearly 275 patients who used coconut oil intrigued researchers at the University of South Florida's Byrd Alzheimer's Institute.
Byrd researchers recently received a $250,000 grant from a private foundation to conduct what is thought to be the first clinical trial of the effects of coconut oil on mild to moderate cases of Alzheimer's disease.
"There are people who, when I tell them we're running a coconut oil study, they chuckle," said David Morgan, the chief executive officer of Byrd. "But there's a rational basis for it."
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Mary Newport, now 61, is a neonatologist who runs the newborn intensive care unit at Spring Hill Regional Hospital. More than a decade ago, Steve Newport, an accountant, began having problems. He forgot appointments, got lost driving, couldn't finish payroll reports. He was 54 when he was diagnosed with early onset Alzheimer's.
A handful of drugs help relieve symptoms of Alzheimer's. But the medications do nothing to stop the disease's progression and, eventually, lose their effectiveness for most people.
Steve seemed like "a cross between a frail elderly man and a 2-year-old, but without the energy," his wife would later write. Around 2004, he was put on Alzheimer's drugs, but she saw no obvious effect.
When she wasn't dealing with sick newborns, Dr. Newport burrowed into anything she could find on Alzheimer's. In 2008, she read a report on a small study of a new medicinal drink. The brew's key ingredient is a type of fat known as a medium chain triglyceride. The liver converts part of those fats into an energy source called ketones.
One hallmark of Alzheimer's is that some parts of the brain stop processing glucose, the primary source of energy. What could plug that fuel gap and keep the brain cells alive?
One theory: ketones.
At that time, the medicinal drink in the study had not yet hit the market. Dr. Newport learned that nonhydrogenated coconut oil is made up mostly of medium-chain triglycerides. She bought a jar of coconut oil and started spooning it into her husband's oatmeal.
She says she started seeing results within days. Steve improved his score on an exam used to screen for dementia. His drawings of clock faces — an important test for Alzheimer's progression — improved. His tremors subsided. He could engage with others.
"He got his life back," said his wife.
But as a doctor, she knew anecdotal evidence is not proof.
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The Alzheimer's Association, the nation's largest advocacy group, won't endorse the use of therapies, including coconut oil, without rigorous scientific studies. "Our people are desperate," said Chuck Albrecht, chief operating officer of the Gulf Coast chapter. "The last thing we want to do is give them false hope."
Still, some experts say the scientific rationale for coconut oil is legitimate, and worthy of investigation. Dr. Mike Mullan, chief executive officer of the Roskamp Institute, a Sarasota-based biomedical research and clinical group, said it's clear that the brains of Alzheimer's patients aren't properly processing sugar. Diabetes has been cited as a high risk factor for developing Alzheimer's, he noted.
"So in that context, the idea that you're looking for an alternate energy source through ketones is not that crazy," Mullan said.
Three years ago, the Alzheimer's Association funded a study of mice, some of them genetically modified so that they have the higher levels of certain proteins associated with Alzheimer's in humans, said Morgan, the Byrd CEO.
Researchers looked at the impact of a very high fat, extremely low carbohydrate diet that forces the body to use ketones for energy. They found little impact, other than that the mice on the special diet improved on endurance-related motor skills, Morgan said.
But it's a long way from mice to men. That's why the Byrd study is a big deal.
It will follow 60 people with mild to moderate Alzheimer's. Half will be randomly assigned coconut oil; the other half will receive a placebo that tastes and looks like coconut oil. Researchers will evaluate symptoms after three months, then switch the groups for another three months. Counting recruitment and set-up time, Morgan estimates that results are two years away.
At best, he said, the coconut oil may help control some symptoms of Alzheimer's. He credits Mary Newport with helping drive the research.
"She's trying to make people aware," Morgan said. "She's not going after it as a profit-making opportunity."
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Mary Newport hasn't slowed down. This year she was interviewed by a British newspaper and the Christian Broadcasting Network (its founder, televangelist Pat Robertson, is a big fan of coconut oil, she said). She has given lectures and shared research news on her blog.
Not long after Steve started on the coconut oil regimen, she added MCT oil, which is available at nutrition stores. He gets three tablespoons of a mixture of the two oils at each meal and two tablespoons at bedtime.
For nearly two years after starting on coconut oil, Steve stabilized and improved. His health declined in 2010 when his father died. That triggered a new bout of depression. He was convinced he saw his father's reflection in darkened windows at night.
In early 2012, he started taking low doses of Valium to help him sleep. Three weeks later, he was pacing and chattering to himself. Then came a night terror that left him so agitated and confused, Dr. Newport called 911.
For two weeks, he stayed in the hospital, where he was treated with antipsychotics.
Believing the drugs had made his symptoms worse, she took him off all medications, including the Alzheimer's drugs, which she said she did not believe had been effective. Today, he takes only gout medication and, after last week's seizure, an anticonvulsant.
Typically, people who have suffered from Alzheimer's for a decade would be in a late stage of the disease, possibly bedridden, said Mullan, of the Roskamp Institute.
"If he's still well after 10 years and still functioning, that would be a very slow rate of decline, especially for early onset Alzheimer's," he said.
Steve Newport still walks, but very slowly. He can't be left alone. He wanders around the house, watches television and listens to music. He was confused and weepy when a visitor whom he hadn't met before showed up at his home recently.
Some days, he calls his wife by the wrong name. But other days, he scoots close to her on the couch and asks about her day, she says.
Before the oil, Mary Newport said, "he was on a downward spiral." Without it, she believes, she would have lost him years ago.
Jodie Tillman can be reached at [email protected] or (813) 226-3374.