Since writing my article “What If There Was a Cure for Alzheimer’s Disease and No One Knew?” in July 2008, I have received thousands of letters and e-mails from people who have loved ones with Alzheimer’s disease, rarer and progressive dementias such as fronto-temporal dementia, posterior cortical atrophy, and Lewy body dementia, as well as a variety of other problems such as Parkinson’s disease, Huntington’s disease, multiple sclerosis, bipolar disease, and even glaucoma and macular degeneration. Improvement of eye problems may at first seem unexpected until one considers that the eye is an extension of the brain and specialized neurons are affected in these diseases. The involvement of nerve cells is the common thread that links all of these diverse conditions.
The following is just a sample of the numerous e-mails and letters I have received mostly from caregivers (though three people care for themselves) since 2008 reporting improvements and reflecting a range of ages and neurodegenerative disease conditions. Many of the people used coconut oil only, many others a mixture of coconut oil and MCT oil, and a few only MCT oil, MCT Fuel (a liquid energy formula made by TwinLab that contains MCTs), or Axona (the prescription medical food made by Accera).
• December 2, 2008: “I read your article on the use of coconut oil; I also read that the Food and Drug Administration approved the drug Axona … and would like to try him on the drug…. He has improved significantly with the coconut oil.” [I suggested she purchase MCT oil while waiting for Axona to be available, and I asked her for more information and to keep in touch about her husband’s progress. Over the next months, she experimented with giving her husband the oils individually or in combination and eventually increased dosing from once to three times a day.]
• December 23, 2008: “My husband’s memory has improved and his ability to speak and recall words is better. He has been taking MCT oil now for about a month, three tablespoons in the morning. What hasn’t improved is his ability to make good decisions.”
• February 1, 2009: “I decided to try just MCT oil, three tablespoons in the morning, but then I noticed that in the late afternoon he started to fade out on me. So I started giving him one tablespoon in the afternoon and he was better. I think he did much better on the coconut oil so I have switched him back to the coconut oil. I am still using some MCT oil.”
• May 19, 2009: “Taking the oil three times a day in the proportion you suggested [four teaspoons of MCT oil plus three teaspoons of coconut oil]. I started him on the oil [five months ago] because of bizarre behavior, such as giving away thousands of dollars, melting a Netflix video in the toaster oven (because he needed to dry it), and putting a dishtowel in the microwave and causing a fire. Since I started him on the oil he has not exhibited this bizarre behavior. He still has problems but not as severe…. Since I started him on the oil, and especially now that he is taking it three times a day, he has improved dramatically…. I am assuming the oil works just as well with fronto-temporal dementia, since his behavior has improved.”
• July 12, 2009: “He is not perfect, but he is very independent….”
• November 13, 2008: “[My husband] has only been taking the coconut oil for two weeks but I can see a big difference already. The best thing that has happened so far is that my home has been peaceful for ten straight days…. It’s hard for me to believe the wonderful change is from something as simple as coconut oil. To me, his improvement is a miracle. With my help this week he has fed the animals; fixed his tray (as a pilot he likes to eat off a tray since he did it for thirty years) with silverware, napkin, and plate; and this morning he got his own cereal. He has not done any of this since his hospitalization in June.”
• January 1, 2009: [Seven weeks after beginning coconut oil.] “[My mother used to] sit in her chair all day like a vegetable. Some days she didn’t remember who I was…. She would look at my father and ask who he was…. She did not have tremors, but was dizzy a lot, and could not walk very well…. Her day consisted of going from the bed to a chair in the living room…. She had no appetite and couldn’t taste her food while on Aricept…. The transformation is truly a miracle. We noticed that she started slowly getting more coherent and the dead look behind her eyes was clearing…. We noticed that she slowly recognized people easier and remembered them more often. The repetition of questions stopped slowly … [and she now] gets around pretty well, I must say. Just this past week there were very important and profound changes. She has been sitting at the table, [and] actually eating her meals…. She decides to read the newspaper. Dad almost fell on the floor…. [She] now has all of her meals at the kitchen table with Dad and eats a decent amount of food…. She would get angry that someone was going to give her a shower. Now she goes willingly, enjoys her shower, and recognizes her home-health aid Sylvia when she comes. Both of [my parents] are diabetic and on medication, and their readings are always around 85–90. That made Dad nervous for a while. He never saw such low numbers, he thought that was bad.”
• June 30, 2009: “Right now Mom is sitting by my kitchen table knitting. Something she wasn’t able to do six months ago, because she couldn’t remember what the needles were for.”
• January 1, 2010: “Happy New Year! I wanted to give you a quick update on how my mother is doing since [my parents] moved in with me. I have a better handle on their whole situation and I can control how mom gets all her supplements. She is presently handling very well five tablespoons of oil a day. This is a combination of coconut oil and MCT. I mix them equally and put them in her tea, hot cereal, and protein shake in the morning, to which I add all her other supplements because she won’t swallow the pills…. When I see mom sitting with pop having an actual conversation, playing with their great-granddaughter and being alert enough to enjoy her, I think of you and the great work you are doing. I remember the days when she fought us, soiled herself, refused to eat and didn’t recognize anyone … ever!”
• June 3, 2009: [Started on coconut oil and shortly after changed to MCT/coconut oil in a 4:3 ratio—one to one and a half tablespoons three times a day.] “There have been times in the last few weeks [when] I forget [my husband] has any problem at all. It is really amazing. I hate to think where he would be now if I had never come across your article. He is improving every single day. I am just so thankful for you!”
• June 3, 2009: “We just got his lab results. His total cholesterol went down from 140 to 120; triglycerides from 100 to 58; HDL from 53 to 54; LDL from 70 to 54. I am so pleased, as well is [he]. He has only been on the oil for two months! He does take Altoprev, Zetia, and Niaspan, but these are the best results we have seen in the past four years.”
• August 20, 2009: “Each month I see improvements. He is participating in conversations, doing more things around the house to completion (i.e., laundry folding and putting away). Recently, we had family visiting us, and Fred actually went out and built a fire, helped with grilling … he was participating in life again. He is talking more, remembering to tell me things that happen during the day at home, remembering if someone calls and leaves a message for me. Recently, he asked me to take him to the camera store. He actually was able to tell the salesperson exactly what he wanted and how he wanted to use the camera. I was totally shocked…. If Dr. Veech needs test patients, we would certainly be interested.”
• June 26, 2009: “She scored 18 out of 30 on her mental exam and was really miserable…. For the past month, I’ve been visiting [my mother] almost every day, giving her chocolates made with coconut oil and MCT, and giving her the rest of the coconut oil pills I bought. She has infinitely more energy; she’s coherent and genuinely happier. Last week they tested her again, and she scored a 26 out of 30…. She’s attending exercise classes, church services, pizza parties—things she’s been avoiding like the plague for over a decade, which is probably when she started having trouble, but no one knew it.”
• December 29, 2008: “After I read your article, I shared it with my siblings. We started my mom on coconut oil the day after Thanksgiving. We have seen a marked improvement in her cognition and functioning since it began. Her doctors seem skeptical but freely admit that there could be a connection.”
• August 13, 2009: “[My husband] seems to be more alive. He always was easygoing and it is nice to hear him have fun. He is outgoing in conversation, where before he just sat and listened, which was not like him. In the morning he makes the bed on his own and puts the throw pillows where they belong, and at mealtime clears the table and does the dishes and puts them away without my help. Before he did help with the chores but waited for me to start. Our nine-year-old granddaughter has him playing Wii. He can’t see too well, but he jokes around with her and they laugh all the time. His short-term memory gives him a few problems at times but so does mine. On the whole I see quite an improvement since [he started] taking the coconut oil and I don’t think it is just me hoping.”
• July 2, 2009: “My mom is in the last stage. She pretty much has lost the ability to do anything for herself. Since [she] started the MCT Fuel and coconut oil … she actually has been slowly getting better. She is speaking actual words, if not whole sentences; she is stronger on her feet and legs, although she can’t walk on her own; she is more alert to what is going on around her, rather than just sitting and staring off into space; and [she] is back to getting grumpy, which at this stage is acceptable. There are other small improvements as well. So which of all this is making the difference? I don’t have a clue, but for my mom, she is better and that’s all that matters to me.”
• January 14, 2009: “We have been doing this [adding one to two teaspoons of coconut oil to his wife’s diet at each opportunity] since just before Christmas (about three-plus weeks) and she is definitely getting some results. Her cognitive signs are much brighter and she is exhibiting emotions that were not there before the last week.”
• July 27, 2009: “Hilde was rather ‘stoic’ and paid little attention to things, paid little attention to surroundings, objected to being pushed or helped, would get up and walk and try to leave the ‘dementia’ assisted living facility to go home or find somebody or something, recognized family but immediately forgot that she had seen them or friends, etc. Today, Hilde is what several have called ‘much brighter.’ She is aware and curious about things going on around us. She recognizes more people, responds when spoken to, often questions something that she notices, is more cooperative with helpers…. During her stay in the hospital, Hilde forgot how to stand up and of course ‘how to walk’—mostly [she] seems to be afraid. She had no physical therapy (PT) while there and now needs help in and out of bed, etc. She is currently receiving PT and in just four days shows some positive improvement.”
• September 19, 2008: “I started the coconut oil diet seventeen days ago…. Today is the fifth day in a row that I am pain free. All five nights I have slept through the night without waking up in pain…. I have found that I can actually go up and down the steps without a railing. I can go from room to room in my home without one hand on the wall for support.”
• July 16, 2009: “[My husband] tried the coconut oil, and like you, I found an immediate change. Since coming North different people have [talked] to me about his cholesterol with regards to taking the coconut oil. He stopped taking it and I found him going backwards. There was such a difference without the coconut oil that he has decided to start taking it again.”
• January 2009: I had a conversation with the mother-in-law of a twenty-seven-year-old woman who suffered a traumatic brain injury as result of an auto accident in December 2008. She reported that her daughter-in-law was considered “vegetative” after about one month and had made no improvement whatsoever during that time. She was moved to a rehabilitation facility, where MCT oil was given to her three times a day. She woke up several days later, is now receiving physical therapy, and is expected to have a full recovery.
• June 20, 2009: “Now … the bigger news is that [he] is walking smoother, feels serene, looks good, is taking shorter naps, and with a momentary exception [is] sleeping well at night. He used to need to nap one to one and a half hours after a workout … now it is around thirty minutes. His Sinemet/Zandora [medication] used to be effective for about five hours and that was about a fifteen-to-thirty minute stretch. Even so, because he is spartan in nature, he would make it last five and one half hours at which time the tremor was obvious, he would be stiffer, and he would start to ‘look bad’ in the face. Now, with the oil, we have to be careful to watch the time instead of symptoms. Usually, I would notice the symptoms and ask if it weren’t time for his L-dopa. Now he can go six hours without noticeable symptoms.”
• August 26, 2009: “Condition before using coconut oil/MCT oil: 1. Would lean extremely far to her left side while eating (almost laying head on left arm on the table). Sitting (if sitting to her left, she would be laying on you) and walking with upper body leaning to the left and forward. Balance was poor. 2. Speech was at the point where only about 25 percent was understandable. The rest was garbled. 3. Almost complete loss of personal daily living skills. Had to be physically/verbally prompted. 4. Eyes were very foggy or glazed looking. 5. Had a cold almost monthly with outbreaks of cold sores. 6. Short-term memory gone and most of long-term memory gone. Could remember name and date of birth but not the year. Needed many verbal prompts to remember address and phone number. Needed verbal prompting to remember my name and family names. Unable to orient where she is as to where, why and when. 7. Episodes of dizziness, faintness, clammy, cold sweats. 8. Weight was 117 lbs. 9. Cholesterol was good.
“Condition after using coconut oil/MCT Oil: 1. Leaning syndrome is completely gone. Walks straight and with much better balance. 2. Speech is now.. almost 65 percent … understandable. Speech is garbled still when she is trying to tell me something that is not current with the conversation at the time. 3. Moderate improvement with personal daily living skills. Can perform some tasks independently and most tasks performed with just verbal prompting. 4. The first day she was given coconut oil, her eyes appeared clear and alert. Noticed that the glazed look returns when she is very tired or when not ingesting coconut oil/MCT Oil, or if she is ill, but not as bad as before starting the oils. 5. Since starting the coconut oil in February 2009, [she] has only had one cold and a cold sore. This occurred after lowering the amount of coconut oil in order to increase the MCT oil. 6. Short-term memory has slightly improved. [She] remembers her name and date of birth but not the year, needs only one or two verbal prompts at start to remember address and phone number. Has been able to remember other people’s names more and to actually learn names of new people she sees on a regular basis. Remembers the days of the week Monday through Thursday and just more recently has started to say Saturday, which she couldn’t say unless prompted to and then most times remembers Sunday after this. She keeps dropping Friday though. Very slight improvement in long-term memory such as remembering prior friends. 7. Only one episode of dizziness, faintness, clammy, cold sweats since starting the coconut oil /MCT oil. 8. Weight is now 134 lbs. with a gain of seventeen pounds since starting the oil. 9. Cholesterol numbers have slightly lowered five months after starting the oils.”
• August 31, 2009: “Within an hour of taking his morning doses of caffeine and oils, [my husband’s] speech clears up (ability to find words, to carry a thought through to conclusion, to refer to recent events). As time approaches for the next doses, the speech problems begin to reemerge but then resolve as the treatment kicks back in. I tend toward cynicism and have worried that I have been seeing effects only because I so desperately want to see them. But others have noticed it, too. Several weeks ago I had warned a friend who sees Steve only occasionally what he should expect, as Steve’s decline since May had been severe. In the intervening weeks I had begun the therapy with Steve…. This friend pulled me aside yesterday and asked what I had been talking about. He said he did not detect anything unusual with Steve until near the end of the day (when it was time for his next doses). Each day the baseline of Steve’s condition seems to move a bit higher. MMSE 18 of 30 on August 6, 2009. [He was] hospitalized in May 2009 for ‘precipitous collapse of his cognitive abilities’ (he could not spell simple words, [was] unable to complete sentences, lost [his] ability to comprehend what he was reading, had mixed up his meds, hit a stationary object with his car for the fifth time in the past several months). [He showed] ‘mild diffuse cerebral volume loss’ and ‘mild biparietal lobe atrophy’ on scans. He has recovered his dexterity with things such as fastening seatbelts and tying shoes. He is operating remote controls a bit more readily. He is asking me less frequently to help him with a word on a sign he cannot make out. There are still some lapses, though. We met with our lawyers last week to prepare our affairs … and the next day Steve could not remember the meeting had even occurred. But there is no question in my mind that the decline is on pause and that some capacity is actually returning.”
• April 14, 2011: “He has at least maintained at a steady state over the past year. The skills he at least partially recovered (reading, using a computer, tying shoes, fastening seat belts) soon after beginning the coconut/MCT oils in 2009 have all remained intact. In fact, some of his motor skills have continued to improve. When I first met him over eight years ago, he shuffled his feet badly when walking. He now walks normally, and his legendary clumsiness is all but gone. We live in a gated community and he walks 5.5 miles a day by himself, having struck up acquaintances with quite a few other residents along the way. He now knows considerably more people than I do, and he often comes home with stories about events in the community and other news he picks up on these conversations…. Now he sets a pace that I can barely match on the few occasions I accompany him. On the other hand, he still clearly has memory impairment. But I find he frequently reminds me to follow up on something that I have forgotten…. He takes one packet of Axona in the morning, two tablespoons of coconut oil mid-morning, a 10 dram-vial [1 dram equals 1/8 ounce] of MCT oil mid-afternoon and again mid-evening. He has not had a single cold sore since beginning the oils. That’s the [principal] reason I leave coconut oil in the mix, despite his general practitioner’s horror that he eats so much of it.”
• August 11, 2009: “In a short period of five days my dad is getting up from bed [and] talking to people; he recognizes people and is coming back to his own self day after day with coconut oil…. Mom calls it a miracle.” Before coconut oil she reports: “He was all day in bed and up with manic episodes at nights. Not talking and not being able to recognize even family members…. He was silent and mostly bed-bound. After five days he is talking and getting up from bed, walking around the house as if he recognizes everything and doing things he forgot to do for a while.”
• August 20, 2009: “I am convinced the [coconut oil just under two tablespoons] is helping [my mother] and here is why: She tries to write out a grocery list every week. The lists have become more and more illegible as time goes by. I was shocked last week when she gave me the list—it was astoundingly more readable, with fewer misspellings, items written along the lines of the paper and in handwriting that is much more recognizable as my mother’s…. Usually, if she is forced to answer the phone, her voice is pained and she sounds gravely upset, until I am able to calm her down and get her out of her funk. Last week I called and she answered the phone. At first, her voice was tentative, but when I told her it was me she was pleasant and sounded content…. I had given up talking to her by phone because she began to have trouble holding it to her ear and hearing…. I called [my parents] today and my father asked if I wanted to talk to Mom…. He gave her the phone and she had no trouble immediately talking to me and hearing me. She was pleasant, seemed happy and asked me how ‘everyone’ was doing. As far as I know, there have not been any side effects and she has not complained about taking it.”
• October 22, 2009: [Letter to physician, copied to Dr. Newport.]
“Dr. Robert: I am a glaucoma patient receiving care at [your facility]. In early September, a friend of mine sent me an account of Dr. Mary Newport’s success with MCT (medium-chain triglycerides) and coconut oil for her husband’s early onset Alzheimer’s disease…. Recognizing that glaucoma is a neurodegenerative, age-related, genetic disease like Alzheimer’s … and realizing that there is a direct link between neurons in the brain and retinal neurons … it just seemed logical to me to add some coconut oil to my diet to see if ketone bodies could enhance energy/oxygen uptake to my damaged retinal cells in order to maintain, and maybe even improve, my existing vision.
“My husband (his mother died of Alzheimer’s) and I began taking the oil the first week in September. I started with a few tablespoons … one in the morning, another midday, and one more in the evening. The second night, as I was sitting at my computer, I suddenly realized that the screen seemed much clearer and easier to read, with enhanced contrast and clarity. This was very strange for me at that time of the night, when my tired eyes and blurry vision are usually telling me to go to bed. I also noticed that the tool bar at the top of the screen, which I always thought was gray-white, was suddenly pink. In fact, I was picking up light pink and light blue colors in several blocks in the screen that I had never seen before! I am in the computer business with a son and his wife, so my first thought was that my LCD display might by dying … but that wasn’t the case this time. The next day, when the tool bar color was gray again, I decided to take a tablespoon of the oil right away, and in about thirty-five to forty minutes, the pink returned. This was repeated over and over again for the next several days. There is no question re: cause and effect! In fact, I began using my perception of pink color on my screen, and its intensity, as a gauge of ketone saturation in my body. If the pink fades out, it is time to take another tablespoon of the oil!
“I am currently taking about eight tablespoons total each day, which seems to be perfect, and incidentally, matches Dr. Newport’s dosage experience and the speed of the oil’s effects on her husband’s condition. I am excited about the improvements in my vision, which are dramatic and continuing. Both rods and cones seem to be benefiting from the extra ketone energy they are getting. I am now able to drive at night and see better at dusk. My eyes accommodate faster from dark to light and light to dark. My depth perception is also better, and as a result, I am walking with less hesitancy. I think that these are all improvements in my central vision, not peripheral vision, which is hard to judge.”
• July 12, 2010: “My glaucoma is stable, no further deterioration at this point.”
• September 6, 2009: “Joe has been taking the coconut oil capsules, 2 caps 3 times a day, for about a week now, plus I added organic coconut oil chased with lemonade. A few days in, Joe started complaining about feeling seizures throughout the day, but he skipped a day without having his evening two- to three-minute grand mal. I’m convinced you’re onto something, because even feeling those weird small seizures today, he actually wanted to read and finished a simple workbook that two days before he was unable to comprehend. Today, he’s had two meals cooked in coconut oil, coconut ice cream, coconut juice plus two tablespoons oil, one in AM, one in PM, as well as the six capsules. He went out and played Frisbee in the heat—no seizure—and has cleared out the dishwasher twice today and as I’m writing this, collecting all the dirty cups around the house. He has not stopped talking all day and still no grand mal and less comments on small seizure activity. My goal Tuesday is to pick up the MCT oil. I’ll let you know how it goes.”
• September 10, 2009: “We got three and a half days with no grand mal seizures until yesterday when he missed his morning dose of meds, oils, and aminos because of blood work.”
• March 25, 2010: “Glen has just retired this Christmas after being a practicing architect for 50 years. He works out four days a week, eats well, and [takes] supplements. We have read all that we could find on the dietary use of coconut products and have been on a supplementing program for three months. I use coconut milk in place of dairy milk in all my food prep and cook a lot of Thai food. He also takes two grams of coconut oil three times a day before meals in capsule form, making six grams plus food intake per day. While supplementing, Glen has experienced an appreciable reduction in tremor severity, a significant enhancement in bowel function, mental agility and recall. We particularly noted a rapid decline and deterioration in motor function and mental agility while temporarily out of product.”
• July 12, 2010: “My husband is at risk for Huntington’s disease. He’s doing very good on the combinations of oils [two tablespoons of MCT and coconut oil mixture in 4:3 ratio]. If I back off on it, I notice the unintentional movements start to come back and the unsteady gait. The stuff was back-ordered once so I had to cut way back for about a week and a half. It can be a challenge to get at least two tablespoons down him each meal. However, I do believe it takes that much to keep the symptoms at bay.”
• September 9, 2010: “I just wanted to update you on my husband, Stormy (showing symptoms of Huntington’s disease [HD]). Unbeknownst to us, his sister (who has been tested and does not have the HD gene) and her husband who visited us a little over a year ago (about the time I noticed symptoms) also noticed symptoms in him. They did not mention it because we did not. They came back to visit about a few months later and still did not say anything. However, we just saw them again; six more months have gone by and my husband and I told them about it and what we were doing (it gets hard to hide the oil when you spend days with someone). She said that the last time they were here that they thought he was a lot better, but they couldn’t imagine why that would be and that the coconut/MCT oil must be helping. So as it turns out I was not the only one noticing signs and not the only one noticing that they are abating.”
• October 21, 2010: “My husband has been diagnosed with probable Alzheimer’s disease. In June 2010 I happened to read a question about Alzheimer’s disease and coconut oil on a discussion forum. I decided to Google it and came upon your blog about your husband. We decided to try the oils, and after about four months now, my husband has improved in many areas.
“From June 17 to July 28, 2010, [my husband began] taking a mixture of coconut oil and MCT oil, three to four teaspoons, three times a day. Results after 6 weeks: more awareness of time and place; better able to read and retain what was read; improvements in reading aloud; initiates conversation/better at following conversation, though often certain things still don’t register/better at keeping up conversation. This is the most noticeable improvement, commented on by many: more interested and sociable; much less depressed; finds he can do work (rewriting lecture notes into book form) more easily; slight tremor improved.
“Between July 28 and October 21, 2010: I increased his dose to one tablespoon of coconut oil and two tablespoons of MCT oil, three times per day. No nausea or diarrhea at all. When I ran out of MCT oil for a few days, I substituted three tablespoons of coconut oil, three times per day—noticeably worse reading and short-term memory. By the end of September/beginning of October, short-term memory seems improved: less repeating questions, several times remembered names previously forgotten, remembered events in more detail than I would have expected, but this is of course all very subjective. He has written some e-mail messages for the first time in about a year; brought up himself that he wants some money in his wallet, so that he can pay for things himself. Before, he had never asked for that for several years. The very latest change, not more than a week ago, is the partial lifting of the anosognosia [lack of awareness of one’s own disability] that has been strong from the very beginning.”
• December 23, 2010: “I have been waiting for over a year to thank you for your videos. My reason for waiting is as follows. I inherited ALS from my mother, who died in 1986. Mine started in early 2007 and was officially diagnosed as FALS in September 2008. The first signs came in my right leg with major muscle loss starting in the gluteus maximus and other related muscles affecting running and the knee.
“In late 2009 I saw your videos on how coconut oil had helped your husband. So I then obtained a large container of it, and started taking four tablespoons each day in early November 2009. In December 2009, I took six tablespoons per day, and in January 2010 I started taking eight tablespoons per day. My logic said, ‘If four tablespoons is for a normal person then I needed more!’ It’s been almost one year now with very possible results. Some of these are:
1. Stable weight. Staying around 68 to 70 kilograms [149 to 154 pounds].
2. More muscle mass in my upper right leg! Before I started taking the coconut oil if I reached up on the underneath of my leg I could feel the leg bones. Today I cannot do that! What I feel now is some muscles rather than bones.
3. The circumference of the leg has increase by about one-quarter inch, which is not much. But it’s not gotten smaller so to me that’s a positive. Also, my left leg has increased about the same amount. I credit this to the fact that I now use my left leg much, much more due to the weakness of my right knee.
4. The right leg feels completely different than it did before taking the coconut oil. It now feels more awake, and a part of me again. Before it felt asleep and non-responsive. It is still not right, but it’s better. What I’ve realized is that the first muscles to go are the ones that have not responded yet, but I’m hopeful!
5. Some improvements in ankle and leg movement over 2009 and 2010.
“As for official documentation of these improvements, I only have my loosely kept journal. However, based on a recent blood test, my cholesterol, etc., are fine! Therefore, I plan to continue taking the eight tablespoons daily, and check my weight and leg measurements each month to see what happens.”
• February 15, 2011: “We came across your story less than a month ago. My father, Mick, is sixty-three years old and suffering from early onset Alzheimer’s disease for the last six years. He was just entering the phase where we were truly feeling we were beginning to lose him. He is at home with my mother, but we have been thinking more and more about very regular respite. An article about your experience came like a bolt from the blue when I was researching other means of home support, etc. Dad has been taking one tablespoon of coconut oil daily for the past three weeks, and the results are noticeable to us all. [He is] more focused, better able to converse, seems a bit sharper sometimes. It’s amazing. We (and I mean my entire extended family and many friends) are now on coconut oil—I have been telling everyone. Maybe it’s coincidence, but all of the health food shops seem to be sold out of the stuff these days! If it holds him at the stage he is at for a little longer, we will be so thankful. Our only regret is we didn’t hear about you sooner. My Dad, even of late 2008, was a very different man.”
• March 1, 2011: “Greetings from Ireland. My wife Elizabeth, now aged fifty-seven, showed signs of Alzheimer’s as far back as summer 2007…. From September 2009 to March 2010, Elizabeth’s condition deteriorated to the extent she had to leave work and was subsequently retired on health grounds. Early onset Alzheimer’s was confirmed by Elizabeth’s consultant in September 2010 and by her neurologist in October 2010. The neurologist told me there was no cure, and I should look about getting assistance. Two days after visiting the neurologist, I found your website and started Elizabeth on coconut oil on October 28, 2010. I initially gave her one tablespoon, three times daily, and over the following three to four weeks put her up to two tablespoons, three times daily. I also gave her a fish oil supplement. After about two weeks, I saw an improvement, and looking back I think she reversed back through the mood swings she encountered on the way down. Elizabeth continued to improve and put back on the weight she had lost by the end of December, and as I didn’t want her to continue to gain weight I sourced MCT oil. I started Elizabeth on one tablespoon of MCT oil and one tablespoon of coconut oil, three times daily on January 7, 2011. Over the next two weeks, I progressed her to two tablespoons of MCT oil and one tablespoon of coconut oil, three times daily. Elizabeth continues to take the fish oil supplement, and we eat salmon two to three times weekly. She is now much improved and I continue to see improvement in little things she can now do that she had difficulty with a short time ago. I hope she will continue to improve.”
[I asked the caregiver for more detail about his wife’s improvements:]
• March 4, 2011: “I will give you an outline of how Elizabeth was and how she is now. Her personality completely changed, she would become aggressive for the smallest thing; now [she is] a completely different person to live with, [her] personality [is] back as if a switch had been flicked, and [she is] back to her old self. [She] had problems dressing, putting shoes on wrong feet, putting clothes on inside out, or having difficulty putting them on; now [she is] much improved at dressing. [She] was always a woman who took great care of her appearance and especially her hair; she stopped taking care of herself and stopped looking after her hair, she wouldn’t even comb it; now [she] has returned to taking great care of her appearance. [She] stopped watching her favourite programs on television, I would put them on for her, she would sit staring at the wall and get up in the middle of them and go to bed; now [she is] back watching her programs and looks forward to seeing them. [She] had lost interest in her grandchildren, would say hello when she would meet them but then sit and withdraw into herself, not even being aware of what they were doing; now [she is] back enjoying their company, only yesterday we visited our daughter who has three boys under five and she spent two to three hours playing with them. [She] had difficulty knowing what time of day it was, unable to read clock; now [she is] aware of the time and able to tell me the time if I ask her. [She] would go to bed in the afternoon and I would have difficulty getting her to get up again; now [she] never goes to bed in afternoon. [She] had difficulty knowing where she was and basically looked lost especially out shopping; now [she is] comfortable in shops and knows where she is. Our children are all surprised at the improvement in their mother and they have all started using coconut oil as have a lot of their friends.”
• [Mrs. DG asked me if I thought coconut oil could help her thirteen-year-old Welsh Terrier who was having cognitive problems. I told her about a study by researchers at Accera, the company that developed Axona, using MCT oil with elderly dogs, and there was a significant improvement in the dogs (Studzinski, 2008; Taha, 2009). I suggested she try one-quarter teaspoon of coconut oil for each ten pounds the dog weighed, two or three times a day. I received this e-mail several weeks later:]
“Dr. Newport, I am very encouraged with the use of the coconut oil for my Welsh Terrier. She is getting up in the morning for breakfast without my having to do anything physical to awaken her. In fact, this morning she wanted to go into the larger exercise area and knew exactly how to navigate the doors to reach the area she wanted to enter….”
As you can see from these e-mails and letters, some people respond rather quickly to medium-chain fatty acids, and others more gradually, with improvements occurring over months rather than days. Steve had immediate improvement in some aspects of the disease, but some of the other changes became more apparent after three to ten months, such as resolution of the visual disturbance that prevented him from reading and his improvement in recent memory.
As people began to contact me with questions, I asked them to please let me know how their loved one responded to incorporating medium-chain fatty acids into their diet, even if there was no response. I did not prompt them about what types of responses they might expect. I thought it would be more interesting and helpful to hear from people, in their own words, what they noticed about their loved ones’ responses.
By May 2009, I had received reports from many others about the responses of their loved ones. At that time, Dr. Veech suggested that I put together a spread sheet documenting the reports I had received, which could help in the quest to fund research into the ketone ester. The vast majority reported positive responses, but some reported no improvement whatsoever. Not everyone reported improvements in memory and/or cognition, which can be relatively easily documented with testing. Many of the reported improvements were in other aspects of human life, such as increased social interaction, improved ability to make conversation, and resumption of activities that had fallen by the wayside.
When the spreadsheet was complete, I thought it would be interesting and helpful to make a chart showing whether there was a response or not and what types of responses were reported. I attempted to group the various types of responses into several different categories for charting purposes. Arguably, there may be some overlap among the groups, as some improvements related to conversation might be considered cognitive improvements, but I was trying to think of these from a practical point of view. Even though I heard from people with other types of neurodegenerative diseases, I limited the chart to the forty-seven people with dementia. This information was submitted and accepted for the poster presentation at the Alzheimer’s Disease International Conference in Thessaloniki, Greece, in March 2010. By the time abstract submissions were due in July 2010 for the ketone symposium in Scotland (both events were described in Chapter 11), I was able to expand the chart to sixty people with dementia whose caregivers provided sufficient information. These are the types of responses that people reported:
Improved Memory/Cognition
• Higher scores on memory or cognitive test
• Improved clock drawing
• Better cognition
• More alert
• Brighter
• Improved awareness
• Less foggy
• Less hazy
• Recognizing people or places
• Less distractible
• Better sense of direction
Improved Social Interaction, Behavior, Mood
• More interaction with others
• Better sense of humor
• Less agitation
• Improved behavior
• Less hostile
• Less aggressive
• Happy
• Improved mood
• Less anxiety
• Less depression
Improved Speech, Conversation
• Speaking again
• Clearer speech
• Less repetitiveness
• Making sense
• More logical
• Improved conversation
• More talkative
• Improved verbal skills
• Better word recall
Resumption of Lost Activities
• Showering again without help
• Performing self-care again
• Doing things around the house
• Doing household chores again
• Preparing meals again
• Resumed a hobby
• Reading again
Improved Physical Symptoms
• Less tremor
• Getting out of bed without help
• Able to walk again
• Walking without assistance
• Improved strength
• More ambulatory
• More energy
• Less stiffness
• Improved balance
• Less dizziness
• Fewer episodes of faintness, clamminess, sweating
• Improved gait
• Fewer episodes of seizure/twitching
Improved Sleep
• Fewer nightmares
• Sleeping better
• No longer sleeping excessively
Improved Vision
• Visual disturbance gone
• Able to see more clearly
Improved Appetite
Table 13.1 presents the percentage of the sixty people who showed improvement within each of these categories after consuming medium-chain fatty acids. For a graphic depiction of these results, see Figure 13.1 on the following page.
TABLE 13.1. IMPROVEMENTS OBSERVED AFTER CONSUMING MEDIUM-CHAIN FATTY ACIDS
| OVERALL RESPONSE | NUMBER AFFECTED | PERCENT AFFECTED |
| Improved | 54/60 | 90 |
| Improved memory/cognition | 37/60 | 62 |
| Did not improve | 5/60 | 8 |
| Stable over 6 months | 1/60 | 2 |
| SPECIFIC RESPONSES | ||
| Improved social/behavior/mood | 29/60 | 48 |
| Improved speech/verbal skills | 21/60 | 35 |
| Resumption of lost activities | 16/60 | 27 |
| Improved physical symptoms | 12/60 | 20 |
| Improved sleep | 4/60 | 7 |
| Improvement, otherwise unspecified | 4/60 | 7 |
| Improved appetite | 2/60 | 3 |
| Improved vision | 2/60 | 3 |
After putting this information together, it occurred to me that many of the positive responses to this dietary intervention with medium-chain fatty acids were not easily measurable. When clinical trials are carried out for Alzheimer’s disease, the testing often focuses on improvements in memory and activities of daily living. Some of the improvements reported here by caregivers may be more difficult to quantify, such as social interaction, mood and behavior, and improved sleep and appetite. It is possible that certain areas of the brain are more sensitive to mild ketosis than others, and this could vary from person to person. Some people may not have improved memory, but at the same time may have responses that are very meaningful to them and their loved ones, improving their quality of life overall. These types of responses should not be overlooked when studying potential Alzheimer’s treatments, including this dietary intervention. Ideally, a mechanism will be developed to document improvements in these other aspects of Alzheimer’s disease for use in clinical trials.
Figure 13.1. Responses of people with dementia to medium-chain fatty acids as reported by their caregivers. Reports were sent by e-mail or letter and were spontaneous, not prompted with regard to type of information. Specifics of the responses were then categorized to create this graph. Of the 60 individuals, 32 were males, 27 females, 1 unknown; 43 of 60 reported age with range of 50 to 94 years (average 76.3.); 36 used coconut oil only, 3 MCT oil only, and 21 a combination of coconut oil and MCT oil. Positive response is presumably due to metabolism of medium-chain fatty acids to ketone bodies for use by neurons as an alternative fuel in brain cells with decreased ability to transport glucose. Diagram by Joanna Newport.