Picking up from "To be continued..."
After Steve was placed on Namenda, I couldn't say there was any obvious improvement, but it did seem like the process slowed down for a couple of years, although he continued to deteriorate slowly. He lost the ability to use a keyboard and calculator, do simple math, and read. He used to read novel after novel and he was at a computer every day for many hours, whether for work or play. It makes me question the "use it or lose it" concept. He was "using it" every day but lost it anyway. In the summer of 2007, things seemed to be going downhill faster. He was having more difficulty with direction and finding his way around while driving and could no longer read a map. He had a visit with an endodontist about 1/2 hour away and even with very good directions and me on the phone, he managed to get lost. They had to "talk him in" from the office. The second last time he drove happened when our daughter's car broke down near Tallahassee, FL, about four hours from our home. I was on call and couldn't leave the area. Her mechanic friend drove up with Steve but hopped in the car with Joanna on the way back. Steve was supposed to follow her home but he missed the turn off from I-10 to I-75 south. About the time I expected him to arrive home late in the evening, he called me on his cell and said he was in Jacksonville, on the opposite coast of Florida from where we live! All I could think was thank God and whoever invented the cell phone that he could call me. I stayed on the phone to get him headed back in the opposite direction. He still managed to get off course again, checked in to a hotel and I stayed on the phone with him in the morning until he pulled into the driveway - this was one of the worst nights of my life! The last time he drove, again Joanna's car died and we had to meet in Tampa to retrieve her care. He was supposed to follow me home through toll booths on the parkway, but drove by me with a big smile on his face and entered a toll booth without an attendant, upsetting every one who worked the other tollbooths. I explained that he had memory issues and wasn't to cheat. After they let him through, he tried to turn around and head the wrong way. I managed to catch up with him and get him going the right way and behind me again. When we got home, he was more than happy to turn over the keys.
Giving up the keys is a very big deal for the AD person and the spouse. For the caregiver, it means that all shopping and every errand will now be your job, as if there isn't enough to do already, and your spouse will always need you to go along to every doctor visit or other appointment or social event. It is a very hard decision for both parties.
In August 2007, as I mention in the article, I had a very bad month and long hours at the hospital and over a three week period he lost about 10 pounds. He would tell me he had eaten when I got home but he hadn't except to nibble on fruit (lots and lots of fruit.) If he put something in the microwave at lunch, he would forget about it and it would still be there late in the evening. When I started paying more attention, I could find no evidence that he had eaten and had to encourage him to eat. I began to look into day care programs and even assisted living. I found out that there were no nearby day care programs for adults, and after visiting a local assisted living for AD, I was so depressed that I decided that would only ever happen as a last resort, for example, if he should become violent (he has not been this way to date.) Life was bad enough for us with Steve in the "moderate" range of this disease, but I couldn't imagine and really did not want to think too much about how much worse it was going to get. Over the next few months, he seemed to disappear more and more from a personality point of view, talking less and less. When we had a conversation about my job, problems, our daughters, etc., and I wanted his opinion, he would often be on a different wavelength and his response would have little or nothing to do with the subject at hand. This became very frustrating and this is when I began to feel very alone, like I was losing my husband. I felt that I would almost certainly be a widow before I was 60. By January-February 2008, he was talking and walking slower, had become apathetic, not interested in any social activities. He had a very significant tremor in his hands when he would try to eat and in his jaw when he was talking. His gait was weird, picking up his feet higher than normal and he said he couldn't run anymore. He spent nearly all of his days "organizing his garage" which is still anything but organized and looking for "something."
I was keeping my eyes open for clinical trials and made an appointment at our local ADRC center, the Johnny Byrd Alzheimer's Institute, for March 2008. We were disappointed to learn that there were no new drug trials at that point for AD, but he was enrolled in a study that involves a complete annual evaluation, including an MRI, and they ask about brain donation, which is optional. Like Steve said at the time, "I'm not ready to give up my brain yet!" The shocker at this visit was the marked change in his MRI from 4 years earlier when it was normal. This time there was extensive atrophy in the cortex, severe atrophy of one side of the hippocampus and amygdala and moderate on the other side, the structures specifically affected by Alzheimer's. He had enlarged areas of fluid that replaced the areas of brain that had now disappeared.
About six weeks later, I saw an add in the paper for a study starting at that center and made an appointment. This was for Elan, the vaccine that clears beta-amyloid placques, believed by many to be the cause of the loss of neurons in AD (I now believe it is an after effect of dying neurons.) We were excited because we thought he would easily qualify and it seemed very promising. Unfortunately, he qualified on all counts with the exception of his MMSE score which was only 12 - he needed at least a score of 16. While we were waiting for part of this study, he told me that the thermistat on the wall was moving around, the first insight he had offered into why he couldn't read any longer. The physician told us to try again in a couple of weeks and suggested that I prep him on the way there with the day, date, year, season, etc. He did not think it would help, but thought I should try anyway.
In the interim, I came across another study at another location and scheduled the screening visits two days in a row. The night before the first screening was the beginning of our "new life." As a physician and caregiver, I wanted to find out everything I could about the two drugs Steve was screening for, the mechanism of action, the pluses and minuses, should he qualify for both studies, since you cannot participate in more than one drug study at any given time. One of the drugs was discussed in a press release with two other drugs about the most promising drugs on the horizon for Alzheimer's. One of the other drugs was Ketasyn by Accera, which is now on the market with a name change to Axona. The press release didn't say exactly what it was and neither did their website at that point, so I did a google search and found the patent application. It was fascinating reading for me, with an extensive discussion of AD and the concept of the "diabetes of the brain" aspect of this disease, the problem of decreased glucose uptake that results in death of the neurons, which appears to happen over decades before symptoms are obvious. Also, this same process happens in other neurodegenerative diseases, including Parkinson's, Huntington's and Lou Gehrig's (ALS.) Ketones serve as an alternative fuel for neurons and other brain cells (and all cells.) The "inventor" Dr. Samuel Henderson, a biochemist, had the insight to recognize that mild ketosis produced by eating medium chain triglycerides could provide ketones to the neurons and potentially improve cognitive function. Medium chain triglycerides are converted directly by the liver to ketones. These have actually been available for decades, bottled as MCT Oil and can be purchased in health food stores and online. I also learned that MCT oil is derived from coconut oil...the "aha" moment that changed our lives! I looked up everything I could about ketones, medium chain triglycerides and the nutrient breakdown of coconut oil and learned that it was 60% MCTs. I calculated from the patent application how much coconut oil (35 grams or 7 teaspoons) would be needed to give Steve 20 grams of MCTs. It was very early in the morning and I had to go to bed and unfortunately there was no time to find coconut oil before his 9 am appointment, so he scored dismally again on the MMSE and didn't qualify for that study. Thinking "What have we got to lose?" we drove to a store in Tampa (Whole Foods) where I had seen coconut oil on the shelf and the rest is history. I gave him 7 teaspoons "plus" the next morning and an equal amount for myself. It did not bother him although, minus a gallbladder, I felt like I had a big ball in my stomach for about five hours. This feeling went away after several days. I prepped him all the way to Tampa, but it did not seem to sink in, however, when it came time for the MMSE he had increased his score from 12 at the previous to that center to 18, qualifying him for the study. I didn't know right away if it was the coconut oil, a lot of prayer or just good luck, but we continued giving him this everyday at breakfast and by the 4th and 5th days we looked at each other at breakfast and remarked on how our lives had changed. He was alert, his personality and sense of humor were back, his tremor was much improved. He said it felt like a light switch came on the day he started the oil. When someone has AD, the areas of the brain that make you who you are as an individual deteriorate and the personality disappears. As a spouse or child you feel like you have lost your husband, wife or parent, because they just are not the same person and don't interact with you the way they used to. I felt like I was Steve's evil stepmother who made him eat and take his medications and told him what to do and not do. After five days on coconut oil, I began to feel like his wife again. His "libido" (interest in sex) which was pretty much dead, even came back to life rather dramatically, something most men will like to hear. This is rather personal, but I feel it is important to share, because it such an important aspect of being human. Two weeks and five weeks after starting the oil I had him draw a clock to compare with one he had drawn at the first drug trial screening. There was a vast improvement.
Thereafter I embarked on an internet research frenzy. I learned about the work Dr. Richard Veech of the NIH in Rockville, Maryland who has developed a ketone ester that can produce much higher, controlled levels of the ketone than one could get by taking the huge amount of MCT and coconut oil that Steve takes. I called him several times in the beginning with numerous questions about his ketone research. I didn't tell him what I was up to with Steve right away, but after he drew the second clock, I shared this story with him and faxed the clocks to him - the pictures struck a chord with Dr. Veech. He did ketone levels on Steve before and at hourly intervals after coconut oil at breakfast and lunch and then repeated the process a couple of weeks later with MCT oil. He was very surprised that such relatively low levels of ketones would produce such an improvement. He has since learned from his lab studies that medium chain triglycerides directly crosses the blood brain barrier and are also used as fuels by the brain - this is a new finding! He has also learned that a ketone supplemented diet stimulates a significant increase in certain brain peptides, at least in mice, compared to those on a non-ketone diet, the peptides include BDNF (brain derived neurotrophic factor) which stimulates new neurons to sprout and NGF (nerve growth factor) that stimulates new nerve growth (obviously). We are waiting to see if an MCT oil supplemented diet will do the same thing in mice. The increases in peptides explains why Steve has continued to slowly improve over the past year. On the website www.coconutketones.com , there is an update about Steve from early April 2009 with the changes that have occurred since May 2008. I will add to it soon, because the list continues to grow.
Along with the research frenzy I also became obsessed with getting the word out to as many people as possible, as quickly as possible. I will share that story another time.
By the way he had his lipid profile checked again early last week and these are the results:
Total Cholesterol - 175 / HDL - 68 / LDL - 93 / Chol/HDLC ratio - 2.6 Triglycerides - 72 He is taking Zocor 20 mg once a day. He may not need that much after getting this good news. These values are all improved from the levels he had before starting coconut oil. If coconut oil in and of itself would raise cholesterol, Steve of all people should be showing this in his lab work, but it is quite the opposite. He currently takes a mixture of MCT oil 4 parts to 3 parts coconut oil and is getting 8 tablespoons a day of this mixture. We recently increased from 35 to 40 ml (7 to 8 teaspoons each meal) three times a day.
Steve feels great, no longer depressed for many months now, and is volunteering two days a week in the warehouse at the hospital where I work. I cannot say enough about the people in the warehouse who work with Steve. It takes patience to work with someone like Steve that needs some supervision, and I appreciate it that they are willing to do this for him. He bounces out of bed when I tell him he is working that day and he comes home with a smile on his face, no longer feeling bored and useless.