In September 2009 I submitted two abstracts to the Alzheimer’s Disease International (ADI) Conference in Thessaloniki, Greece, to be held March 10–13, 2010. Just after Thanksgiving, I learned that the case presentation about Steve had been accepted for an oral presentation (eight minutes to talk and two minutes for questions); the other abstract was accepted as a poster presentation. This second abstract was about other caregiver reports of forty-seven people with dementia and their responses to oils containing medium-chain fatty acids (discussed in Chapter 13). After considerable contemplation and discussion weighing the pros and cons with Steve, my sister Angie, Dad, Dr. Veech, and Dr. VanItallie, I decided to go. The opportunity to give an oral presentation, even though brief, to scientists and physicians from all over the world seemed important in my quest to get the message out.
The next question was whether to take Steve or not. Ultimately, the decision was his. He said he preferred to come with me rather than to stay with relatives. So Steve and our daughter Joanna came so she could help me with Steve. I thought it would be best for Steve, given his condition, to break up the trip, instead of traveling seventeen or more hours overnight from Tampa. The loss of a night’s sleep could affect him for the entire trip. So we flew one day from Tampa to New York City, took a morning flight to London, just under seven hours, the next day, and the third day flew from London to Thessaloniki, nearly four hours more. We did manage to get five to six hours of sleep each night, but the 48-hour-plus journey left all of us fairly exhausted.
One of my major concerns in preparing for the trip was whether bottles of medium-chain triglyceride oil and jars of coconut oil would make it through security in our checked luggage. I mentioned this in an e-mail to Beth, a dietician at The Charlie Foundation (mentioned in Chapter 17), who happened to have an associate, Dr. Evangeliou, a pediatrician and professor living in Thessaloniki. Amazingly, he agreed not only to purchase the oils for us, but also to pick us up at the airport. He very kindly took us to our hotel and showed us some of the beautiful Byzantine churches along the way. It turned out that Dr. Evangeliou had been involved in ketone and ketogenic diet research.
When we arrived at the conference center the next morning, I checked in with my CD/PowerPoint presentation and was very pleased that the computer accepted it without a hitch. I am not usually that lucky. We attended a few talks together, but Steve and Joanna mostly hung out in the hotel lobby while I went to talks. They also attended a forum for people with dementia and their caregivers, where they bonded with Helga, a lovely person from Munich.
The list of talks scheduled for the first afternoon session included a presentation by Samuel Henderson, Ph.D., from Accera, the inventor of Axona. His talk, also eight minutes, was titled “Ketone Bodies as a Therapeutic for Alzheimer’s Disease.” Steve and Joanna attended with me, and we listened to him discuss Accera’s clinical trials with AC-1202 (an MCT known as tricaprylic acid) and the rationale for using an oil that produced ketones. To my surprise, he mentioned that I would be speaking on the same subject in the next group of talks, should people want more information about ketones.
During a short break, Joanna and I placed a handout on the seats of my slides with references, as well as a copy of the article I wrote in July 2008, “What If There Was a Cure for Alzheimer’s Disease and No One Knew?” The presentation went very fast but very well. I talked about the problem of diabetes in the brain and the potential for ketones to bypass the problem as a sort of metabolic trick. I related what happened with Steve, showed pictures of his clocks, and displayed a chart of his Mini-Mental Status Exam scores and ketone levels. I discussed the even greater potential for Dr. Veech’s synthetic ketone ester. There were a few easy questions at the end: “Can you cook with coconut oil?” “What other foods contain medium-chain fatty acids?” “Have other people responded to this?” The last question gave me the opportunity to mention my poster with responses of forty-seven people with dementia that was to be presented the next day.
All but a few of the 100 handouts were gone from the seats. A man from the Alzheimer Working Group (AWG) of Scotland spoke with me after the session and requested a copy of my presentation. Another physician from Mexico advised me that he was planning to make a presentation about this at their national conference later in the year. A physician from Japan asked me to take a picture of her with Steve. I was very pleased with the reaction and can only hope that the people who listened and understood will pass it on. Perhaps some of them will have the interest and resources to conduct a clinical trial.
I left Steve and Joanna, who wasn’t feeling well, behind the next day and went to get ready for the poster session. The poster exhibition was in the basement and had little traffic. When I arrived in the hall, Dr. Henderson was having a cup of coffee. When my poster was set up, I walked up to him and said, “At last we meet!” and we shook hands. He told me that he attended my talk. He said, “You know, I am just trying to get the message out too.” He further told me that the Alzheimer’s Association would no longer allow him to have a booth at their International Conference for Alzheimer’s Disease. Also, they had put out a formal statement denouncing medical foods. I told him about my attempts to get a poster table at the 2008 Chicago ICAD and how I thought it was because of Accera’s exhibit that the Alzheimer’s Association had ultimately turned me down. He was surprised. He advised me that at least one other medical food company was no longer able to exhibit, but one of the bigger companies, a larger donor to the Alzheimer’s Association, was still permitted to have a booth. We talked a lot about ketones, and I asked him questions about the science. We talked for at least an hour before we were asked to leave by the staff, who were removing all the tables in preparation for the next event.
That evening we attended a gala dinner, and Helga, Steve’s new friend who also has dementia, sat with us. She talked about the possibility that we might come to Munich to talk about the ketone issue. There were presentations and awards, followed by a display of traditional Greek dance, then a medley of mostly American party dance music. The room turned festive as everyone flocked to the dance floor, and even Steve danced with me for a while. Joanna went to the balcony above the dance floor and took pictures and videos of the people dancing below as she moved to the music! We left when Steve began to look droopy. Not long after we settled in bed, it was Steve’s night to have intestinal problems, which meant that I lost sleep as well, since things like that don’t happen without my involvement.
The following morning, I picked up my poster and then, sure that Steve was past the worst of it, we walked along the waterfront for several hours in Thessaloniki. We were on to Athens the next morning. This part of the trip was for me. I had studied Greek literature for four years in college and thought that, if we were traveling all the way to Greece, we had to visit the Acropolis. The view of Athens from there is spectacular.
After that we moved on to London for two days before heading back to New York City. How did Steve do through all of this? Well, the trip was part dream and part nightmare! A lot of public transportation was involved, starting with airports and including taxis, subway systems, and buses. I took Steve by the hand whenever possible, and Joanna kept an eagle eye on him as well. On steps and escalators, I told him to follow Joanna while I brought up the rear. We must have uttered the phrases, “Come on, Steve!” and “Come on, Dad!” hundreds of times. I don’t think Steve knew exactly what city we were in much of the time, so I reminded him a lot. At one point in Athens, looking at the signs in Greek, he remarked that we must be in Russia!
In London, Steve particularly enjoyed Madame Tussauds, and he was especially good that day, laughing and happy, in contrast to his mood the evening before. Just as I was beginning to enjoy the amazing view from the London Eye, a giant 443-foot ferris wheel, in the dark, he became uncooperative and tried to walk away from us several times. We had to reassure him that he was all right. Later at the hotel, I cried as I remembered what it was like to travel with the old Steve, before Alzheimer’s disease. I missed his happy, smiling face, and I wondered, as I do every time, if I will see it again, and if this is the beginning of the end. When he woke up the next morning, smiling and talking like his normal pleasant self, I was quite relieved to have my husband back once again. Perhaps with all the walking around, his muscles had used up most of the ketones from the oils and did not leave not enough for his brain, or maybe he was just tired. I was clearly expecting too much of someone with his condition to enjoy running around Thessaloniki, Athens, and London the way I wanted to experience it. So Joanna and I made a pact that we would end the tour of London when the sun started to go down. We had a much better day. After flying seven hours to New York the next day, sight-seeing there with our niece Anna, all three of us cheered when we started up the driveway to our home in Spring Hill the next day.
I decided that if we were to attempt such a trip again, we would fly directly to and from our destination and forget the whirlwind sightseeing. The stress far outweighed the benefit. And so we live and learn. Six months later, I would have the chance for a do-over.
Early in the the summer of 2010, I learned that the Ketogenic Diets 2nd Biannual Conference was to be held that October in Edinburgh, Scotland. It was being organized as part of the International Symposium on Dietary Interventions for Epilepsy and Other Neurologic Disorders, and I soon learned that the organizers would consider the topic of MCTs to produce ketosis as a treatment for Alzheimer’s. Ketosis, as you may remember, is the process that occurs when the body breaks down fats for energy instead of glucose. By that time, I had enough information from caregivers of sixty persons with dementia to submit an abstract, so I submitted the data from the caregiver reports and Steve’s case study for consideration.
The conference’s scientific committee accepted both abstracts for poster presentations, so then I had a new set of dilemmas: to go or not to go, and if I went, whether to take Steve or leave him with another caretaker. For a short time, I believed it would be impossible for me to attend this conference; however, I was encouraged by several colleagues to find a way to go. Dominic D’Agostino, Ph.D., an assistant professor at the University of South Florida (USF) who planned to attend, was one of them. Dr. D’Agostino helped a man from the United Kingdom with severe treatment-resistant seizures completely eliminate his seizures using a ketogenic diet. This evolved into research about the use of a ketogenic diet for navy divers as a possible means of preventing seizures, which they are prone to during deep dives. He has a very interesting lab with small hyperbaric chambers for use in animal studies and access to some amazing technology to carry out his work. Recently, D’Agostino and his colleagues at USF began studying caloric restriction, ketogenic diets, and the ketone ester for Alzheimer’s mice. In addition, he was performing animal studies using ketone esters for epilepsy, oxygen toxicity, cancer, radiation, and traumatic brain injury. Should these animal studies have positive results, funding will be more likely for human clinical trials.
After deciding that I would attend the conference, I struggled with whether or not to take Steve. After investigating various options, I decided that both he and I would have more anxiety if he stayed at home than if I took him with me, and Joanna was more than willing to come along to help out.
We left for Scotland on October 3 by way of Atlanta on an overnight flight to Amsterdam and then on to Edinburgh the next morning. All the flights to the United Kingdom originating in Tampa are overnight. The flight was packed and noisy, and we didn’t sleep at all. I brought an e-book reader to keep us occupied, loaded with reading material for me and music for Steve to listen to through ear buds. In spite of the lack of sleep, Steve did amazingly well overall. There was the usual confusion going through security, including explanations of Steve’s condition to security personnel.
After the sixteen-hour trip, we checked into our hotel in Edinburgh, two blocks from the conference hotel. We had a two-bedroom apartment with a full kitchen, dining area, and living room. The kitchen was stocked with a basket of breakfast goodies, and milk and juice were in the fridge. An organic grocery store was just around the corner, so we were able to relax and economize by having breakfast and lunch in our room. We tried to take a nap after we arrived, but there was too much noise on the street, so we took a walk to see the city, had an early dinner, and then crashed for fourteen straight hours. Steve had some interesting nightmares at the beginning of the night, involving scary breathing and big snakes, no doubt set off by the missing night of sleep, but thereafter he settled down. He had another bout of confusion involving images in darkened windows at a restaurant when we dined with other conference attendees late one evening. Otherwise, he handled our time in Edinburgh quite well.
While I attended the three-day conference, Joanna and Steve spent several hours each day exploring the beautiful city with a magnificent castle at its center. The conference was a six-minute walk from the hotel, and I sprinted back and forth each day to check on Steve during lunch breaks. In the evening, we continued the exploration process together and found unique restaurants on the Royal Mile where we experienced Scottish cuisine.
I had a list of ketone and ketogenic diet researchers whom I hoped to meet at the conference, most of whom were speakers. I brought copies of a paper I prepared on ketone research ideas for treating newborns and shared them with several pediatric neurologists from Johns Hopkins School of Medicine who study the ketogenic diet for pediatric epilepsy: Eric Kossoff, M.D., Eileen Vinings, M.D., and Adam Hartman, M.D.
I took copious notes during the presentations and learned a great deal during the conference. In addition to the classic ketogenic diet, which is very high in fat and very low in carbohydrate and protein, some patients with severe epilepsy have complete relief from, or great reduction in, seizures with less restrictive ketogenic diets, including the modified MCT oil ketogenic diet, the modified Atkins diet, and the low-glycemic-index diet. These modified ketogenic diets generally result in lower ketone levels than the classic ketogenic diet. This means that some people are responsive to even relatively low levels of ketones in the range of those achieved with medium-chain fatty acids. If severe epilepsy can respond to mild ketosis, is it possible that other neurologic conditions, such as Alzheimer’s, Parkinson’s and traumatic brain injury, could likewise respond to this simple dietary intervention?
Thomas Seyfried, Ph.D., the premier researcher of ketogenic diets for brain cancer and a professor of biology at the University of Illinois, Urbana-Champaign, gave an amazing presentation. Dr. Seyfried has found that certain cancers, such as the brain tumor glioblastoma that affected Senator Ted Kennedy, can shrink by as much as 80 percent after a relatively short time on this type of diet. Potentially then, the tumor could be removed surgically without collateral damage to the brain caused by radiation, the current treatment of choice. Seyfried explained that most cancers can only use glucose as a fuel and cannot use ketones. Therefore, if you minimize carbohydrate and protein intake (protein can be used by the body to make glucose), the tumor will shrink due to lack of energy to keep the tumor cells alive. The brain and other organs in the body are spared because they can use ketones for fuel. Seyfried and his colleagues have published a case report involving a sixty-five-year-old whose tumor was no longer detectable on positron emission tomography (PET) or MRI scans after two months on such a diet (Zuccoli, 2010). During and after the poster presentation, I had a chance to talk for quite some time with Dr. Seyfried, and he encouraged me to submit Steve’s case presentation to a scientific journal for publication.
The afternoon following the conference, we embarked on the journey home. This time we had a thirteen-hour overnight layover in Amsterdam, which we spent at an airport hotel, before taking the long flight home. I was pleased that we made the trip.