Coconut Oil, Ketones and Alzheimer's

Tuesday, May 26, 2009

Picking up from "To be continued..."

Sorry, we went to visit Cincinnati for the long weekend and I just plain ran out of time! We celebrated his "Re" birthday on May 21 with our families.

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.

43 Comments:

  • So glad that you are blogging here. I've been following your current updates on your website and the message boards for Alzheimer's. This is so great to be able to read your comments and respond with any questions we may have. Thank you!!
    I posted several long messages on the Alz. Association board about a lady with Down Syndrome that I've been giving the coconut oil to. If you don't mind, I'll try to post them here. I haven't updated her condition this month but I'll do that after I post the previous posts here. After reading my posts, if you have suggestions, I would be more than happy to try them with her. You can also use these posts for any research or for your book. I just have to keep her identity and my own private because of the Hippae Laws. I work for the DHHR and Waiver Medicaid program and we are bound by these privacy laws. Thank you so much!

    By Blogger Unknown, At May 27, 2009 at 8:30 AM  

  • My first post:

    Hey everyone,

    This is my first post here but I've been lurking in the background and reading all the boards and using your suggestions and tips anyway I can. I feel it's only fair to post any results we've had from your suggestions and I hope anyone else like me will also post their results.

    I'm a caretaker for a 63 yr. old lady with Down Syndrome. She is 4ft. 6 in. tall and weighs 117 lbs. She's part of our family and has been with us for 26 yrs. I work for the DHHR and have a Specialized Family Care Home. So I'm bound by Hippa laws but I think it's okay as long as I don't give out her name or mine.

    As you know, all people with Down Syndrome will get Alzheimer's. I didn't know anything about this until about 6 yrs. ago. In the last year especially, I have learned so much more about this disease.

    My lady didn't start displaying any symptoms until about 3 years ago and they were mild. A year ago she had 2 traumatic events in her life just 2 months apart, which were the deaths of 2 other people in our home who were like her siblings. This threw her into a rapid and deep decline that I never knew was possible this quickly. One day she could do everything for herself and almost vitually the next day she couldn't do anything at all for herself. She went from doing most personal care and daily living skills for herself to not even being able to wash herself or even to get a drink if she was thirsty. She had to be taken to the bathroom and have everything done for her, where before she was going completely on her own. She had numerous health problems and depression after their deaths which were a result of the stress and emotional upheavel.

    She rapidly declined even more over the next months until Feb. 09. She forgot who people were and forgot my name, the days of the week etc. She developed the Pisa Syndrome (leaning extremely to the left) and was losing her speech such as words or the ability to talk in sentences etc. etc.

    I've been waiting for the clinical trials with Bryostatin to start at the Blanche Rockefeller Neurological Institute which were scheduled to start last summer. But I can see now that the FDA is not going to approve these trials until God knows when. I don't understand this dragging around on their part. Sorry about that, that's another topic all together different from my post.

    Anyway, I was searching, and searching everywhere for some kind of help for her. I ran across your website and found the perfect place for info. I read the boards about the coconut oil and the Newports so I thought what do we have to lose? It's only coconut oil and not a medication that may interfere with her other meds. And so I started adding the coconut oil to her diet. We started out slowly and I only gave her one teaspoon 2 times a day. And then slowly built up to 3 tablespoons a day after about 2 weeks. I now give her 1 tablespoon with each meal and use it in place of butter or oils or mix it directly in her hot foods.

    She has improved since starting the coconut oil on Feb. 14th 2009. (It is now April 3rd 2009).

    Her speech has improved. She is talking in small sentences and using words I haven't heard in a long time. She still will get her speech mangled at times but at least she knows it and says "I stutter too much" or "I get tongue tied".

    By Blogger Unknown, At May 27, 2009 at 8:56 AM  

  • continued from previous post:
    She has improved with certain steps in some of her living skills, for example when going to the bathroom she will pull her own pants down instead of waiting for me to do it or just standing there lost. She has improved with many other things also. She still needs verbal and physical promts but certain steps of what needs to be done is improving. She is showing improvement in almost all of her daily skills and mental attitude and this is with not only the hardships of Alzheimer's but also having Down Syndrome.

    She has more energy and has stopped saying she's tired when she has done something just a little physical. She has become more independant when it comes to doing something for herself and will wave me away or tell me she can do it herself. She was always very independent and liked to do everything for herself. I'm glad to see this coming back.

    She has also stopped leaning to the left almost entirely. She would virtually lay on her left arm when she sat at the table and ate. No matter how I tried to keep her upright she would automatically lean to the left. If you sat on her left side, she would be almost laying on you. She no longer does this at all.

    She can follow the conversation and have a pretty good idea about what is going on. She is doing this with TV shows too.

    She is walking better and her balance is so much better. She is always laughing now and never stops moving or joking.

    She occasionally has some sad periods but that's because she now remembers the deaths of her friends all the time now and misses them at times. Before she would forget they died and I had to tell her again what happened. This was pitiful because she was experiencing their deaths over and over again. It was just heartbreaking to see.

    I wanted to let you know of her progress and I will post more if she shows more improvement or if she doesn't. If the coconut oil keeps the Alzheimer's on hold and she stays where she's at, I will be happy. I'd like to see her gain back what she lost in the last year, but if she doesn't then that's okay if she justs maintains.

    Something else I discovered this past year is that my lady is the exception to the rule when it comes to getting Alzheimer's. Most of the people with Down Syndrome start showing symptoms when they are in their 40's or 50's but she didn't really show symptoms until about 60. I'm going to list her meds. here so if anyone reading this has someone with Down Syndrome, they will know exactly what my lady has taken and for how long in case it might help them with their loved one.

    By Blogger Unknown, At May 27, 2009 at 8:58 AM  

  • continued from previous post:

    Her niece told me that her mother gave her an aspirin every night before she went to bed because she thought it helped her sleep better. I don't know if this is what helped her or not, but I thought I should mention it.

    She has taken a Multivitamin and Synthroid for years and has taken 1 aspirin, 400 units of vit. E and 500mg of vit. C and a monthly shot of 1000mcg of B-12 for the last 6 yrs. She has been taking Namenda for the last 2 1/2 yrs and Aricept for the last year after changing from Exelon which she took for 2 years. She also takes Boniva and Calcium with vit. D. She started taking Fish Oil 1000mg 2x's a day in August of 2008. She also takes 1 Immodium a day for diarrhea. She was always plagued with bouts of diarrhea until starting this a few years ago. The doctor said she could take up to 8 a day if needed, but the most I've ever given her is 3 a day and only when needed. She also takes Metamucil every day for fiber which has also helped to curb the diarrhea. She also eats one 6oz. container of yogurt a day and drinks 8oz of Cranberry juice a day. She has always eaten all foods and had no special diet. We started the coconut oil in Feb. 2009.

    I hope this helps anyone who reads it and I truly apologize for the length of this post, but I don't post very much and I wanted to be sure that I had everything here in case there is some brave person out there who reads it all, and needs some help.

    One more item, I'm going to start giving her some MCT oil along with the coconut oil. I will decrease the CO and then add some MCT oil so that she has a mixture of both. I will start this next week and I'll keep you updated if anything changes.

    By Blogger Unknown, At May 27, 2009 at 8:58 AM  

  • Posted April 05, 2009 10:10 PM

    She is showing more improvement almost each day. She is remembering the days of the week from Mon. to Thurs. but still has trouble remembering what day today is, but when you prompt her to with "if yesterday was Monday then today is...." she remembers it's Tuesday and then she says the next day is Wednesday and the next day is Thursday. Also this weekend I held up 5 fingers she instantly said 5 and when I held up the other 5 fingers she instantly said 10. I don't even remember when she last was able to compute numbers. She is remembering more and more words. This weekend she also remembered the months of April May June and July without prompting.

    I should have mentioned in my earlier post that before the Alzheimer's she could communicate extremely well and could care for herself, clean house with very little help. She could actually run my house as well as I could. She could write and do math on a first grade level. Fix simple meals. She was very high functioning and very intelligent with common sense knowledge. She would watch the news and knew what was going on and what it meant. She could answer the phone and take messages. She was very self sufficient.

    The coconut oil is really working for her, and she has bloodwork done on a regular basis so I'll be able to keep an eye on her cholesteral. The last bloodwork done was about 2 weeks after she started the oil and it had dropped a little from 3 months before. We'll know more after the next tests are done in a couple of months. She has gained 3 pounds.

    I'll keep this updated as she progresses.

    By Blogger Unknown, At May 27, 2009 at 9:02 AM  

  • Posted April 14, 2009 11:45 AM Hide Post
    Wanted to let you know that I added MCT Oil to the coconut oil. I decreased coconut oil to 2 teaspoons and added 1 teaspoon of MCT oil to equal 1 tablespoon. I give this 3 times a day at meals. It has been 1 week and I've seen more improvement. More words being spoken that I haven't heard for a long time. Also, when going to bathroom, I always have to verbally prompt to remove depends etc. and have to Verbally prompt to get a clean one and to sit back down and put it on. Yesterday, I left the bathroom when she was finished going and came back in to check on her, which I do, because she is still able to pull up her own clothes and this gives her more independance. I always wait around the corner to see if she will flush and wash her hands. This time I went back in and she had pulled up her clothes and was sitting on the toilet seat lid and was putting a pair of Depends on by herself. Of course she was putting them on over her pants - but she had gotten up and walked over and got a depend out of the package and was putting them on by herself. She hasn't done this at all since last summer. This is an improvement and I hope the next time she will put the depends on under her pants.

    She also has improved with many small things such as when making her bed she will pull up the blanket too instead of just the sheet without any verbal prompts. I believe in having the person do everything they can for themselves even though it takes hours more time. If the oil is unlocking memories and/or creating new connections, the person will have to be trained to learn or re-learn skills. So this is why I have her do everything possible for herself. I'll update with any more results.

    By Blogger Unknown, At May 27, 2009 at 9:03 AM  

  • Posted April 15, 2009 07:58 PM

    I don't know if it is the continued use of the coconut oil or the added MCT oil because she was making very good progress on the coconut oil. I added the MCT oil because it has a more concentrated form of the caprillic acid but I am going to continue with the coconut oil because it helped her so much. It's been about 2 months since we started the CO so it might be that it is really starting to have an effect now.

    I don't know why, but I just have the feeling that the CO is either unlocking brain cells or making new connections because the improvements that she's making are like when I do training with her. This is part of my job to do training with my clients. We have programs written by a behavior specialist such as for bathing, shaving, money management etc. It is a series of steps done in the same order each day to teach them to do tasks for themselves. Over the past year when her AD took such a drastic change, she hadn't made any progress and had declined. No matter how long we worked it just wasn't helping.

    But now she is improving with the steps of the task and has even learned a few new small things. For example, every night I have her get her container for her dentures, I tell her to go the bathroom sink and turn the water on and fill it half full, then shut the water off, turn off the light, and put the container on the dresser, and then put her dentures in the water, and get a tablet and open it, put it in the water and throw the paper away.

    She used to not even understand what the container was for, and I had to take her hands and do all the steps with many physical prompts. She didn't know how to turn the water on and off and would just keep putting water in the container and then dump it out. She wouldn't even recognize the box with the tablets in it. She would only take out her dentures after much verbal prompting.

    In the last few weeks she has improved much with this task. Now I only have to tell her to take her container and put some water in it for her dentures and by herself, she will take it into the bathroom and turn on the water and put water in it and then shut the water off and bring it back in the bedroom. I then only have to tell her one time to put her teeth in the water and she will do it and most of the time now she will put both dentures in. Now I just have to tap on the box and tell her to get a tablet and most of the time now she will reach in the box and get it. She has trouble opening the package, but once opened, she then asks me if she puts it in the water and sometimes will do it without asking. This is what I mean about the improvements she is making in a lot of different living skills. This isn't the only thing she has improved with.

    By Blogger Unknown, At May 27, 2009 at 9:06 AM  

  • continued from previous post:

    This is something that she did completely for herself independantly before the AD. She hasn't been able to do any of the above steps in over a year.

    Sorry this is so long, but I just wanted to let you know the kind on improvement she has made. I realize that this isn't a super huge improvement but for her it is a major one. This is only after a couple of months on the CO. I know that this kind of thing is very repetitous and time consuming, but for training in any skills this is what is needed. It has to be the same steps, in the same order each time and must be repeated over and over. This is what it takes for someone with disabilities to learn, but sooner or later, they will learn how to do it.

    This is just the impression that I'm getting now with my lady. It feels like the training we have done in the past for other things before she got AD. I would have to say that someone who has AD and is taking the CO and is showing improvement would have to be considered as developementally disabled and must learn these things again.

    I wish too that I had known about this even a year ago. It would have probably saved many more skills that I took for granted at the time and now I wish with all my heart that she could just do 1/4 of those things now.

    This is just my opinion and my impressions, but if you have someone who is showing improvement with the CO, it might help to do this kind of training with them for maybe just a few skills that you would like to see them regain. It is time consuming and repetitious but if they are unlocking cells or making new connections, sooner or later it might kick in.

    Another improvement today, she put clean sheets on her bed and put her pillowcase on with only a few verbal prompts. This isn't somthing we have been working on but it is something she used to do for herself. I would call this unlocking some memories. This is something she hasn't done since last summer.

    By Blogger Unknown, At May 27, 2009 at 9:07 AM  

  • Posted May 11, 2009 02:10 PM Hide Post
    I just wanted to let you know that I have started giving 1/2 tablespoon of coconut oil and 1/2 tablespoon of MCT oil. I noticed the last few days she has had some confusion. but she also just underwent anesthesia for a colonoscopy but I don't know what the cause is for the recent confusion and less cognitive abilities. I will keep her on this for a week and if there's no improvement then I will go back to more coconut oil. I'm still waiting for my supervisor to approve monthly payments for the AXONA.

    By Blogger Unknown, At May 27, 2009 at 9:08 AM  

  • Posted May 13, 2009 07:21 PM Hide Post
    I've been giving my lady 1/2 tablespoon of coconut oil and 1/2 tablespoon of MCT oil mixed in with her meals at breakfast, lunch, and dinner. I haven't been giving it to her at night so I may try to give it to her at bedtime. I will also try giving it to her at breakfast before she eats. Maybe it's being eliminated too fast, with the MCT oil mixed in, before her body has a chance to absorb it, or maybe the food is interfering with it some way.

    It may be that the straight coconut oil works best for her. I'll give the MCT oil a chance to work though before I change the dose.

    I would think that a week would be enough to see if the dosage is better or worse. I'll just have to try to change things until I see her improving again.

    She was doing so well until about 2 weeks ago. There may be other factors involved such as the anesthesia. We also had decreased her Celexa from 10mg to 5mg because she didn't seem to need it anymore. This may also be a factor too because she has been crying over another client that I had for a short period of time and was upset that she had to go back home to her mother. It is so hard to pinpoint the nature of her problems at times because of the Down Syndrome. When they are sick or grieving or depressed, it will many times manifest itself as behavior problems or confusion.

    I'll let you know how it works out. I'm glad that everyone is seeing improvements with their loved ones with this whether it is small or large, or just maintaining. This is just a horrible disease and can be so depressing for everyone involved at times. The HBO special really brings that to the forefront. After watching this series, I'm inclined to agree with you that this disease may need to be fought on different levels using meds or treatments for each condition.

    I wish with all my heart that they would find a cure or at least a treatment. They say that this is the disease feared most after cancer, but to be honest with you, if I had a choice, I would choose to have cancer because then I would at least have a chance to be cured.

    By Blogger Unknown, At May 27, 2009 at 9:09 AM  

  • Posted May 27, 2009 11:59 AM Hide Post
    Sorry I haven't updated for a while. Just wanted to let you know, that instead of changing the CO or MCT oil, I increased her Celexa back to 10 mg. This has helped her depressive symptoms immensely and I'm inclined to think that the sudden stop of improvement was due to my lady's depression over the other client leaving to go back home. She has returned to the improved state she was in before this happened. Her improvement has slowed but I see more improvement each day. It isn't as fast as before, but it takes about 3 weeks for the higher dose of Celexa to fully enter her system. I'm going to try to increase her combined intake of CO and MCT oil to 4 tablespoons a day, to see if it will speed up her progress.

    I have to do this slowly, because she has a problem with diarrhea. The 1 Immodium in the morning and the heaping tablespoon of Metamucil in the evening, and 8 oz of V8 juice a day, and a container of yogurt, has helped tremendously with this problem, so much so that she hasn't had any diarrhea at all since we started this regimen. She also has regular bowel movements each morning that are normal. I never thought I would ever see this. The doctor who did her hemorrhoids said that her problems stemmed from not enough fiber and he was right. He said bowel movements should be big and fluffy, and fiber is what gives this. You have to give the Metamucil a couple of weeks to start working correctly. If anyone's LO has a problem with the diarrhea caused by the CO or MCT oil, you may be able to help them by giving them the above items. I always thought I provided a well balanced diet and never thought about fiber until talking to the doctor. I started reading lables about fiber and you know, it's hard to get all the fiber you need in a day. She is a small person so if your loved one is bigger they may need two doses of Metamucil a day or more of the other items.

    I increased her CO to 1/2 tablespoon plus 1/4 teaspoon and increased her MCT oil to 1/2 tablespoon plus 1/4 teaspoon with each meal on Sunday. I haven't seen any problems with diarrhea so I'll increase both of them to 1/2 tablespoon plus 1/2 teaspoon each with each meal, after a few more days just to make sure she can accommendate the higher dose.

    I have seen more improvement with her cognitive skills since Sunday. I'll let you know how she does with the higher dose after we implement it. I hope more of her speech improves. She is remembering more words but she still has problems trying to get her words out when she is talking about some things. It's hard to explain because some things are easy for her to talk about, but when she is trying to tell me something about another person she is getting it all garbled.

    By Blogger Unknown, At May 27, 2009 at 10:01 AM  

  • We've been giving my mother 3 tsp of MCT oil (using Now Foods brand right now, for anyone interested) 3x per day, mixed in food like apple sauce, and 1 Tbsp in "coconut oil fudge" in the morning and then again before bed. We think there has been an improvement in alterness and wakefulness.

    She was diagnosed with "probably CBD" (corticobasal ganglionic degeneration) back in December of 2007.

    In april of 2008, we learned about the tau protein correcting properties of cinnamon (from Dr. Grave's work at the UCSB), and started giving her about 1/2 tsp 2 to 3x per day, either as powder, or as a "tea". This seemed to help, especially for the first 4 months. Later in 2008, we learned about other tau-fighters methylene blue and niacinamide (nicotinamide).

    In December of 2008, we started her on first coconut oil, then later in January 2009, MCT oil. We started out with a small amount and worked up.

    We also give her 500mg of curcumin 2x per day.

    I'm trying to get the word out that this works for more ailments than AD. I think those with CBD, PSP, LBD and the rest of the alphabet soup of neurodegenerative diseases where glucose hypometabolism and tau protein corruption has been identified will probably benefit.

    By Anonymous Anonymous, At May 29, 2009 at 12:49 PM  

  • I happened across your board and it touched my heart becuase my two boys are preemies (27 w, and 33 w 4 d) and my grandfather passed away almost two years ago and had AD. Thanks for sharing your story and your treatment.

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