At the beginning of year three in the spring of 2010, I wrote, “We can only hope that our persistence and strict adherence to a diet that includes medium-chain fatty acids to keep ketones available to Steve’s brain will help him sustain this miraculous reprieve from the nightmare. How long will this last? I don’t know the answer to this question, but believe that the clock has been set back at least two to three years, and in some respects, even longer. God willing, we will have many more good years together. As I have often thought to myself, a lament I have heard from so many others, if we can stay where we are now, it will mean everything in this battle with Alzheimer’s disease. While awaiting the availability of Dr. Richard Veech’s ketone ester, the next best strategy we can employ is to stay on track with our healthy diet that includes coconut oil and MCT oil, in order to provide with brain the ketones as an alternative fuel. This will help provide Steve with the best quality of life he can have while living with this disease.”
The development of Steve’s new symptoms at the end of the second year was a tough reminder that we don’t yet know what causes Alzheimer’s disease, much less how to treat it, and that the process apparently marches on. Due to the setback that occurred after his father died, we made the difficult decision for Steve to discontinue volunteer work.
In June, I found a study showing that music therapy is beneficial to people with Alzheimer’s. We rediscovered how much Steve enjoys music after I loaded my computer with many of Steve’s favorite albums by Barry Manilow, Neil Diamond, some Beethoven and the Beatles, as well as the soundtracks from some musicals he enjoys like Fiddler on the Roof, South Pacific, and Phantom of the Opera. Amazingly, he whistles along with an obvious recollection of the melodies. If I ask him if he would like to hear, for example, South Pacific, he will begin to whistle “Bali Ha’i,” a song from the movie.
In July, I met a speech therapist, Andrea, who had considerable experience with Alzheimer’s and stroke patients, and she began to work with Steve. On July 14, I wrote in my journal, “Andrea said they got off to a rocky start, but then he began doing pretty well. He could name sixteen of the twenty animal pictures immediately. He had trouble with four of the names because he was trying to come up with the subspecies, such as a ‘capuchin’ instead of a generic ‘monkey.’ He was overthinking it!”
On August 17, I received a call from the research nurse for the Eli Lilly semagacestat drug trial. After reviewing the first eighteen months of data, the company learned that not only was there an increase in skin cancer, but that the people who received the drug had experienced “accelerated worsening of the disease” compared to the people on the placebo as evidenced by the ADAS-Cog and Activities of Daily Living Tests. This could explain some of Steve’s new symptoms in late winter and early spring of 2010, when I believed he had crossed over to taking the drug. Steve’s first reaction was to ask if they were going to give him a million dollars, a nice reminder that his unique sense of humor was still intact. My first reaction was relief that we had withdrawn him from the study at the beginning of March.
It is ironic that medium-chain fatty acids helped him improve so much that he qualified for a clinical trial with a drug that may have made him worse.
Steve was quite stable through the remainder of the summer and fall of 2010, with at least no obvious new symptoms. However, along with the holidays came another setback for Steve.
Just before Christmas, we had a stretch of very cold weather that was quite unusual for Florida. We went to a party at the home of longtime friends that involved caroling around their neighborhood. Steve merrily whistled along as we went door to door and we had a wonderful evening. The next morning, the big toe of his right foot was quite tender—indicating a flare-up of gout. Gout occurs in people who have high uric acid levels, and this substance will sometimes crystallize in certain joints, particularly in the large toes, which tend to be the coolest part of the body. Cold weather can trigger such a flare-up. I took him right away to see his doctor, and he prescribed prednisone, which usually reduces the pain and swelling within a few days. I was nervous about giving Steve prednisone because of the many side effects that can occur, including those involving the immune system, but I did not remotely anticipate what would happen next.
About four days after starting this medication, which is usually tapered off slowly over a few weeks, the pain and swelling in Steve’s foot was gone, but he began pacing relentlessly through the house, agitated and suspicious of everything I tried to help him with. He refused to take a shower and change his clothes. He wouldn’t come to bed. He began to constantly obsess about his father. The toilet became a mystery that had to be explained at times before he would use it, particularly in the late evening. I wrote in my journal on January 1, 2011: “It feels like Steve has fallen off a cliff and that is pretty much what I want to do right now. I don’t know how I am going to get through this. Is this just a glimpse of the future, or is this our permanent situation?” My sweet Steve had turned into someone I barely recognized.
Since the pain and swelling were gone, we tapered the prednisone off more quickly than originally planned. By the middle of January, my question was answered as Steve gradually stopped the constant pacing and obsessing, and his pleasant demeanor and sense of humor returned. Even though he seems to recover after each setback, a little bit of something is lost each time, and we are left with one or more new problems to deal with. We won’t be using prednisone again.
By early April, we took a trip to Cincinnati to see our families and stayed with my father and his wife as usual. At home, we have a king-size bed that is actually two twins side by side. At their home, we share a smaller double bed, which is normally not a problem. However, on this occasion I had great difficulty convincing Steve to come to bed. Finally, he told me he was worried. “About what?” I asked. He said, “I don’t want to have any more children.” He was worried that I would get pregnant if he slept with me! There wasn’t anything I could say to convince him that it was safe to sleep with me. Fortunately, my father had an inflatable bed. When I suggested to Steve that I sleep on the inflatable bed and he could have the double bed, he said that would be fine, and he lay down and went right to sleep.
When we got home, once again he balked at coming to bed with me. I pulled our beds about six inches apart, and the problem was solved. Whenever a new behavior appears that doesn’t make sense, there is no doubt a somewhat logical explanation for it.
It has been more than thirty-two months since Steve improved after he began taking coconut oil in May 2008. A lot has happened since then, and there have been some setbacks and recoveries, but overall Steve has retained most of the improvements we saw during the first months. There has been a big improvement in quality of life for both of us, and I believe we have gained at least two to three more relatively good years.
People often ask how Steve is doing now compared to when I wrote my first article in July 2008. Here is a comparison between the improvements reported on my website in the September 2009 update and Steve’s status as of April 2011:
Steve continues to take the half-and-half mixture of coconut oil and MCT oil. He receives three tablespoons at each meal and two tablespoons at bedtime. He eats a low-carbohydrate whole-food diet, with organic foods whenever possible, and receives about one tablespoon per day of cod liver oil and fish oil, as well as vitamins and other supplements. In spite of so many calories as oil, he currently weighs about ten pounds less than he did when he started taking the oils. His triglyceride levels have been 70 or less, and his HDL (good) cholesterol has increased from about 35 milligrams per deciliter (mg/dl) before starting the oils to 105 mg/dl.
As you know, “the light switch came back” on the day Steve started taking coconut oil. In spite of some setbacks, particularly this past year, this dietary intervention has brought about a significant improvement in his quality of life. We will continue to include coconut oil and MCT oil in our diet to provide ketones as an alternative fuel for the brain as a major component of our strategy to fight Alzheimer’s disease.