The only thing that kept Dr. Mary Newport positive in the face of her husband's early onset Alzheimer's disease was that he didn't seem aware of how much ground he was losing.
"He didn't know the full ramifications of his decline — I hate to say it but that was the only blessing. I was watching my husband of 36 years simply fade away," said Dr. Newport, 56, a neonatologist and medical director of the newborn intensive care unit at Spring Hill Regional Hospital.
An accountant, Steve Newport left his corporate job the day his first daughter was born, allowing his wife to finish her medical training. As time went on, he worked from home, keeping the books for her neonatology practice and taking care of their two daughters, now age 22 and 26.
About six years ago, Newport began struggling with daily tasks. He took longer to complete the business' payroll and was making more mistakes.
"I didn't know what was happening to me. I was confused," Newport said of his prediagnosis days.
"There were big clues, and I knew that something was going on here," Dr. Newport said.
They saw his primary care physician, who referred him to a specialist. The diagnosis of early onset Alzheimer's was a devastating blow. According to the National Institutes of Health, as many as 4.5-million Americans have Alzheimer's. Early onset Alzheimer's strikes people age 30 to 60 and is rare, affecting only about 5 percent to 10 percent of those with Alzheimer's.
While there is no way to confirm an Alzheimer's diagnosis, Newport tested positive for the genetic marker that puts a person at higher risk for early onset Alzheimer's.
He was put on several FDA-approved medicines to help slow the progression of the disease, but he continued to decline. In August of last year, Dr. Newport said, her husband underwent a "drastic change," losing more than 10 pounds.
"He had completely lost interest in eating, and that was not a good sign," she said. He also abandoned the kayaking and gardening he loved so much.
Dr. Newport searched the Internet for clinical drug trials that would accept her husband. In May, he was set to apply for studies in St. Petersburg and in Tampa.
A fuel that nourishes the brain from birth
The evening before the first screening, Dr. Newport stayed up late researching both drugs. During that research she discovered a third that had shown unbelievable results — actual memory improvement.
"Most drugs talk about slowing the progression of the disease … but you never hear the word 'improvement.' Right then I knew I had to find out more," she said.
She began vigorously researching online and uncovered the new medication's patent application. She found an in-depth discussion of its primary ingredient, an oil composed of medium chain triglycerides known as MCT oil.
In Alzheimer's disease, certain brain cells may have difficulty metabolizing glucose, the brain's principal source of energy. Without fuel, these precious neurons may begin to die. But researchers have identified an alternative energy source for brain cells — fats known as ketone bodies, explained Dr. Theodore VanItallie, a medical doctor and professor emeritus at the College of Physicians and Surgeons at Columbia University in New York City. He has been researching ketones for more than 35 years.
"Ketones are a high-energy fuel that nourish the brain," VanItallie said, explaining that when you are starving, the body produces ketones naturally. When digested, the liver converts MCT oil into ketones. In the first few weeks of life, ketones provide about 25 percent of the energy newborn babies need to survive.
As Dr. Newport continued to read about MCT oil and the new medication, she discovered something surprising: Non-hydrogenated coconut oil is more than 60 percent MCT oil, and this medication derived its MCT oil from this readily available tropical tree.
Newport was not accepted for the first clinical trial. He was unable to remember the season, month or day of the week, and he scored a 14 out of 30 on the mini-mental state examination, a test used to screen for dementia and assess the level of impairment. He tested too low and, according to the results, had "severe" Alzheimer's.
One important test for Alzheimer's progression is to draw the face of a clock from memory. That afternoon, Newport could barely remember how the clock looked, said Dr. Newport.
"We were devastated," she said.
She tried to reassure herself and her husband by looking forward to the next day's second screening, but she was beginning to feel hopeless.
"And then it hit me," she said. "Why don't we just try coconut oil as a dietary supplement? What have we got to lose? If the MCT oil in it worked for them, why couldn't it work for us?"
Trying out coconut oil and testing result
On the drive home, she stopped at a health food store and bought a jar of nonhydrogenated, extra-virgin coconut oil. The experimental medication's patent application was complete with dosage information, and she did some quick math, converting the measurements.
The next morning she stirred two tablespoons of coconut oil into her husband's oatmeal, and she tried it in hers, too.
On the way down to the second screening in Tampa, Dr. Newport quizzed her husband, asking him the day, month and year.
"I prayed harder than I'd ever prayed in my life," she said.
Her prayers were answered. Steve scored an 18 on the exam, the highest he'd scored for more than a year and four points higher than the previous day.
"It was like the oil kicked in and he could think clearly again," Dr. Newport said. "We were ecstatic."
Newport was accepted into the trial but more importantly, the coconut oil he'd ingested seemed to "lift the fog." He began taking coconut oil every day, and by the fifth day, there was a tremendous improvement.
"He would face the day bubbly, more like his old self," his wife said.
More than five months later, his tremors have subsided, the visual disturbances that prevented him from reading have disappeared, and he has become more social and interested in those around him.
Nothing can repair the brain damage he has sustained as a consequence of Alzheimer's disease, and there is no cure. But it appears the oil is helping, Dr. Newport said.
Studying effect of diet on other diseases
The Newports are not the only ones who have found positive results with ketones. In 2005, Dr. VanItallie studied the ketogenic diet's effect on Parkinson's disease. In his study, five patients stuck to the diet for one month, and all of the participants' tremors, stiffness and ability to walk improved, on average, by as much as 43 percent.
"Our study was very successful for our patients," Dr. VanItallie said, explaining that the one drawback is that the ketogenic diet mimics starvation. It is low carb, low protein and nearly 90 percent fat, he explained. "People can't really stay on this diet for long, it's too restrictive."
His study was preliminary, but he said he hopes it will "pave the way for future research."
Parkinson's is similar to Alzheimer's in that it is neuro-degenerative, and glucose metabolism may be affected, Dr. VanItallie said.
"We know that if we give patients ketones, we can bypass this glucose block," he said. However, researchers don't know if the effect is short term or long term. He is pushing for larger and more disciplined studies.
Since starting the coconut oil regimen with her husband, Dr. Newport has become somewhat of an expert on the subject. Though not a neurologist, her background as a medical doctor and her biochemistry classes in medical school have helped her understand the way MCT oil is converted into ketones, and how beneficial this dietary supplement can be for those unable to process glucose.
Additionally, ketones may be beneficial to those with Huntington's disease, multiple sclerosis, Lou Gehrig's disease, and Type I and II diabetes.
"I think (Dr. Newport) is quite courageous. Most people give up when they are facing severe Alzheimer's, but she feels she's got significant improvement," said Dr. Richard Veech, chief of the lab of metabolic control at the National Institutes of Health in Bethesda, Md.
Dr. Veech has been working with ketones for more than 40 years and has become a valuable resource to the Newport family. Currently, he is working for the military, looking into ketones as a way to improve the performance of troops in severe conditions.
He has written several articles about the subject and is convinced that ketones can provide more cellular energy than glucose and that they may be the key to aiding those with neuro-degenerative diseases.
He has helped guide Dr. Newport in her personal study and answers many of her questions. Though her experience with ketones is not the peer-reviewed, double-blind clinical work researchers like to see, Dr. Veech said her results are promising.
"(Dr. Newport) is getting the best she can with what she has," he said.
Dr. Veech stresses the importance of consulting a physician before trying coconut oil at home. He said ingesting too much of one type of fat can be dangerous and can also cause diarrhea and vomiting.
Dr. Newport realizes more research is needed, but she is pleased with what she's seen so far.
"I've got living proof that this will help people," she said. "I want to just tell everybody about this. It may help them improve, too.
"All I'm asking is to investigate this further. After living through Alzheimer's, anything that can stabilize or help improve (your loved one) will be worth every drop."