TERRE HAUTE — While Terre Haute resident Scott E. Jones had long suffered from Parkinson’s disease until brain surgery stopped his tremors, his memory and ability to talk were unaffected.
That is until he was diagnosed with dementia about three years ago.
“His short-term memory was gone, that was the big thing,” said Phyllis Jones, 70, his wife of 51 years.
“[Scott] would go into the other room after eating breakfast and then say, ‘Is it is time to eat lunch yet?’ and I didn’t even have dishes off the table yet from breakfast,” Phyllis said. “That was the first thing that hit really hard and that was a problem.”
The couple, who live in Anthony Square, turned to their Terre Haute physician, Dr. Steven D. Maynard, for help. Maynard treats the fifth largest Alzheimer’s Disease population in Indiana.
Maynard said Scott Jones’ dementia is identical to Alzheimer’s in every respect. Maynard already had prescribed Jones two of the most common Alzheimer’s medications. One of those medications is Aricept, which prevents the breakdown of a chemical called acetylcholine, a chemical messenger in the brain that is important for processes of memory, thinking and reasoning, according to Drug Information Online (www.drugs.com). The other is and Razadyne, which also prevents the breakdown of acetylcholine.
Maynard in addition has used Namenda, a different type of drug that regulates glutamate, another chemical messenger in the brain.
Searching for an alternative therapy, Maynard turned to a nutritional prescription supplement, a “medical food” called Axona, released into the market in March.
“We found that in the brain of the patients with Alzheimer’s Disease and dementia, part of the brain does not metabolize glucose properly. The idea of Axona is to give the brain an alternative energy source,” Maynard said.
Axona, when ingested, is broken up by the liver into the ketone body B-hydroxybutyrate, which transfers rapidly to the brain providing brain cells an alternative source to glucose, Maynard said. Axona is dispensed in single-serving packages that patients mix with water and drink daily.
“The parts of the brain that deal with memory can utilize this, so when you give the patient Axona, within 90 minutes their memory scores on tests go up. It is that fast, because now their brain has energy, they can transmit the chemicals that their brain cells are supposed to do,” Maynard said.
“What is nice about it is this is not a drug. The FDA (Food and Drug Administration) deemed it GRS or generally regarded as safe, so there are no drug interactions, no danger to the liver, bone marrow or the kidney. This is a completely safe product. It is like not adding any medication to the patient. I have had good results with this,” Maynard said, adding he now has 30 to 40 patients using the medical food.
Medical foods were defined in 1988 by Congress as a special category of products for dietary management of a condition or a disease. While some clinical trials are done, because medical foods are not classified as drugs, they do not need the official approval of the FDA, unlike prescription medications.
November is National Alzheimer’s Disease Awareness Month. As many as 5.3 million people in the United States are living with Alzheimer’s, according to the Alzheimer’s Association. Alzheimer’s and dementia triple health care costs for Americans age 65 and older.
Every 70 seconds, someone develops Alzheimer’s and it is the sixth leading cause of death.
The Alzheimer’s Association does not agree that Alzheimer’s causes nutritional deficiencies and does not agree the disease needs a medical food for treatment.
Dr. Maynard disagrees.
“Scott Jones is a good clinical example. In his case, he went on [Axona] and definitely improved,” Maynard said. “He then went off of it, because of GI (gastrointestinal) side effects [diarrhea, heartburn and flatulence], but then had a decline in his mental status. Then he went back on it and got back his improvement, but he still has some of the side effects,” Maynard said.
“Not everyone responds to Axona, but my feeling is everyone deserves a trial for a couple months to see how they do,” Maynard said. “If the family feels they are getting better, then stick with it. Not everyone responds and it’s not for every patient, but I am encouraged” by Axona, he said.
“I want to keep the memory as good as I can for as long as I can until the next medicine comes up and we are making progress,” Maynard added.
Jones, 72, said he didn’t notice the benefit from taking Axona until he took it several times.
“I had great improvements with the speech and got the thoughts I wanted out a lot better,” Jones said. “It used to be I would go sit in the corner and sleep. It was very frustrating.”
A caretaker also noticed improvement after Jones began taking the medical food.
“He first started taking the medical food in July and within a month I saw improvement,” said Simone Gehrke, a licensed practical nurse and assistant director of McMillian Adult Day Care, where Scott Jones goes twice a week.
“Scott before would come in and be very fatigued and be isolated. He would sit in the chair and not really participate in a lot of things until the afternoon activities,” Gehrke said. “I noticed not only a cognitive improvement, but he was less shuffled with his gait, his speech was less stammered. He was very alert and participated in everything.”
Gehrke, like Maynard, said she also noticed when he stopped Axona.
“I didn’t know he was not taking the medical food, but it only took a couple of weeks to go back to where he was and he was more difficult to understand talking, and his memory recall was not as well,” Gehrke said.
Gehrke contacted Phyllis Jones, urging her to have her husband go back on the medical food.
“Just his whole personality and his whole outlook on things was a lot different once he was back on it. He is living proof it works,” Gehrke said.
Scott Jones graduated in 1955 from the former Otter Creek High School in Vigo County. He entered the U.S. Navy right out of high school and served three years. He returned to Terre Haute, married, then worked for the Terre Haute Waterworks.
He was laid off in 1961 and then entered the U.S. Coast Guard, where he served 21 years as a yeoman, doing clerical work in several different cities nationwide. Jones said he again returned to Terre Haute and worked about 10 years for a company ordering items for vending machines.
As Jones spoke in Maynard’s office, the doctor said, “What you are seeing him do now, relay his story, was not being done before Axona. He was not talking like this. It’s a big change.”
One problem Maynard does concede is the medical food is a new product.
“It is not covered by a lot of insurance companies yet, so that is a big drawback and is unfortunate,” he said. Phyllis Jones said it costs them about $93 a month to get the medical food in Terre Haute.
“It is kind of pricey, but I think the benefits are there,” Maynard said, adding a coupon can reduce some costs for users of the medical food.
Howard Greninger can be reached at (812) 231-4204 or howard.greninger@tribstar.com
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