I have a lady that I care for who has Down Syndrome and Alzheimer's that I've been giving Coconut Oil and MCT oil. I have a thread at the Alzheimer's Association forum that I use to document what I'm doing and any changes or results. I found this site a short while ago and I thought it might be good to post my results here too. The posts at the other site are very long but I'm going to post them here if it's okay with the Admin. I don't know if this is proper protocol on message boards, so if I'm stepping out of bounds, I apologize and please let me know.
I have left out responses to my posts on the message board because these posts belong to their author's and I don't want to post them here without their permission so some of my posts will be in response to other's if you can't understand what I'm talking about.
Don't worry after writing all of this stuff and trying to keep track of everything I do, I don't understand anything I'm saying these days. LOL
Part 1 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.
Part 2 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".
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.
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.
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.
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.
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.
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.
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.
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.
I had increased her dosage to 1/2 tablespoon plus 1/2 teasppon of mct oil and 1/2 tablespoon plus 1/2 teaspoon of Coconut oil with each meal with no problems with diarrhea so far. I have seen more improvement, with more words and recognizing some people by name and it's only been 2 days. I am definetly going to start the cinnamon and curcumin because I have read about some great results from these. I'm only waiting because I want to make sure of any results, good or bad from each supplement. I want to start them one at a time, but I don't want to wait too long either, because I'm afraid that I may be keeping a potentially helpful thing from helping her. So I'm trying to up the co/mct oil up as quickly as I can without any side effects.
Today, I mixed 1 cup of mct oil with 3/4 cup of CO in a jar. I will continue with the 1 tablespoon and 1/2 teaspoon for a few more days and then try to increase the dosage. I'm incrementing the dosage by 1/4 teaspoons at a time, because she has always had problems with diarrhea and her body needs to get use to the increases slowly. I increased the MCT oil by a ratio of 4 to 3 over the CO to see if this will bring better results.
swarfmaker, I started giving the cinnamon to my lady today. I decided not to wait until I can get the dosage increased for the MCT/CO. I figured that since it takes about a month for the results to show for the cinnamon that this would give me plenty of time to see any additional results from the oil.
I have increased the dosage of the MCt/CO to 5 teaspoons at each meal. No diarrhea at all. The last few days I have noticed a decrease in some things. It's like she doesn't understand what I'm asking her to do, but it only is with a few things. But on the other hand she is remembering a few more names and words. She has also been a little more emotional, but only about the things I've asked her to do. The emotion is more of a fake whining crying type of thing. This seems to me to be related more to a behavior type of thing. I don't know. It's hard to read her because of the DS along with the AD.
I wanted to let you know that I increased the CO/MCT oil 3 days ago. I mix 1 cup of Ultimate Nutrition MCT Gold oil with 3/4 cup of Louanna coconut oil together in a glass jar. I then give her 2 tablespoons of this mixture in her food at breakfast, lunch and dinner. I tried the Extra Virgin coconut oil but didn't see any difference, so I went back to the LouAnna brand because it can be mixed with many more foods.
She only had a few bouts of diarrhea the first day when I increased it to 2 tablespoons, but I gave her another Immodium that day and it stopped it. She has a problem with diarrhea so I increased the oil slowly over the past 4 months so as to give her body more time to adjust to it. Before I even started the oils, in order to curb the diarrhea, I had been giving her 1 Immodium in the morning, 1 heaping tablespoon of Metamucil at around 7:30 pm, and 8oz. of V8 Juice with Extra Fiber daily, and a container of yogurt that contains the most bacteria cultures. This has helped her tremendously and I think this is why she has tolerated the oils so well from the beginning. I can't stress the fact that she has always been plagued with diarrhea so it's a miracle that she can tolerate the oils at all.
I also try to give her at least 2 servings of vegtables and fruit a day. I have just started giving her applesauce every day because swarfmaker recommended it on another thread. I think it contains some of the good ingredients that cinnamon contains or something similar to what's in the cinnamon. The oil mixes very well with applesauce or yogurt if you have food that's difficult to mix the oils in.
She has improved with using more words, (except the ones I really want her to remember). I noticed that she has started to remember a person's name from Day Treatment Program who has been working with her lately. This person is a new staff person who didn't start until after the AD had set in. So this isn't remembering but learning someone new. I'm very happy with this developement! It proves that she can learn new things. She has also learned a few things in the past month that are new to her and not remembering how to do something from before. Even though it seems the improvement has slowed down considerably, there are still small improvements even if it's just a new word and that is better than losing a word.
As I read over my previous post I realized that my lady has improved with some other things such as clearing her dishes off of the table and bringing them into the kitchen and doing this with no prompting. Like I said before, it's small things but they are improvements. I think that maybe I'm expecting too much too soon. I just need to be more patient. The AD took a while to start doing damage, so it's only logical that any treatment will take a while too.
One other thing I just discovered. I couldn't understand why last week, she suddenly wouldn't pull up her own depends after using the bathroom. She would just stand there and wait for me to do it. She had been doing really well before this on her own. I automatically thought that the oils had quit working and she was getting worse. A very depressing thought!
After just now talking to the person who works with her at the Day program, she told me that she has my lady hold on to the support bar next to the toilet and she pulls her Depends up because she is afraid that my lady will fall on her head because she bends over so far to do this. I told her that my lady always has bent over like this whenever she does anything like this or picks something up off of the floor etc. This is a new learned behavior although it is not one that I want her to learn. It also explains why she did better with doing it herself over the weekend and then after a couple of days at school, she reverted back to me doing it.
I realize that my lady also has Down Syndrome which makes things more complicated, but I truly believe in making your LO do as much as possible for themselves. Maybe if you feel that your LO isn't making the progress you think they should, it may be that like me, you are overlooking the small things. I am really going to make an effort to "see" and "hear" everything she does, and write it down. I have to write it down because I can't remember very well at times. I told my lady that I'll have to start taking her medicine too so I can remember things. Her response was "Oh, shut up!" and "I'm gonna get you!" as she chased me around the table.
There's something that I should also mention after reading about it on another thread. I need to stress to everyone reading this thread that I have not given my lady anything, and that means anything, that I haven't first discussed with her doctor and had the pharmacist double check against all the medications that she is taking. I also have incremented everything slowly and let her body adjust to it. I want to help her but I don't want to cause any injury in my trying to help her through my ignorance or haste to see results. Before you do anything, you should always talk to you doctor first and then your pharmacist.
This evening at supper, I thought that I would try to give her 2 Tablespoons of just the MCT oil to see if it made any difference. I thought since she had tolerated the 2 tbls. of CO/MCT oil so far that she wouldn't have a problem with it. Big Mistake! She complained of her stomach hurting and then had a bout of diarrhea. Afterwards she was fine, but I won't do that again! I will stick to the regimen we have been on. Evidently, she would have to build up a tolerance to just using MCT oil by itself, if we would cut the CO out. I thought the MCT oil would be more tolerable than the CO. Of course the CO might do the same thing if I tried to give her just that without the MCT.
I imagine that she would have to build up a tolerance to Axona because I think it would affect her the same way as the MCT oil since it contains higher doses of the C8 and C10 like the MCT does.
Wanted to let you know that I'm switching from the Walmart LouAnna brand of CO because I've discovered that it is Refined even though it's Non-Hydrogenated, 0 Trans fat. Refining in the CO industry means it has been refined, bleached and deodorized. I don't know how it was refined, but I don't want any changes to the actual CO by any means in case it destroys or changes the MCT's in it.
I ordered the Nutiva Organic EVCO and will use that. I just picked that brand over others because it was the most for your money. 54 ounce jar for $22.48 which includes shipping, thru amazon.com.
I also ordered a bottle of the NOW MCT oil instead of the Ultimate Nutrition MCT Gold oil. Price was about the same but Now has 55% Caprylic and 45% Capric. Ultimate Nutrition has 67% caprylic and 33% Capric. This is a fairly big difference in the amounts, but I can't find which of these ingredients is the major ingredient in Axona. Axona states that it is made of >95% Caprylic Triglyceride which is a combination of both, but I can't find the amounts of each that is in it. So I thought that I would try to use the Now brand and see if it makes any difference. swarfmaker and Dr. Newport use this brand and have reported good results with it. The ultimate gold has shown much improvement with my lady, but I thought that I would try this also and see if there is more, less or no improvement.
Forgot to report that I'm seeing more and more words and sentences coming back. Also seeing better cognitive thinking. Energy level is still very high, but she doesn't have any problems sleeping at night. Very slight improvement with some short term memory items such as days of week. She also has the ability to learn new things. I don't know if this is the normal thing for AD but she is still capable of learning actual new simple things. She's showing more ability to follow and understand conversations around her.
I believe that I'm seeing improvements due not only to the CO/MCT oil but also to the cinnamon, even though it has been only 2 weeks since starting it. I've been checking her glucose and urine, and it is very good. Glucose has been between 84 and 90 and the urine has been clear of ketones at the 1 hour and 2 hour intervals after eating. I have a glucose monitor and I bought some ketone strips at Walmart to monitor her urine output. I know that her glucose is very good and I'm assuming that it is a good thing that she doesn't have any ketones in her urine after eating. I hope this means that they are going straight to her brain where they belong.
I can't say what these figures would have been before starting any of this because I didn't check them. Her labs never showed any problems with glucose before, but she never had the insulin resistance testing either. My husband just discovered that he is insulin resistant but his labs didn't show it either until he had the insulin resistance testing. His problems showed up after the 2 hour interval glucose was 225 and urine showed ketones and then he would experience a sudden drop of glucose. He was experiencing hypoglycemia symptoms but we didn't know it was due to hypoglycemia, because we weren't aware that he had any glucose problems. His glucose is being held in check now with changes to his diet. He is a risk factor for AD because his mother was diabetic and also had AD.
June 29, 2009 08:15 PM jab, I've been using the Ultimate Nutrition MCT Gold since reading about your recommendation on another thread. (Thank you!) I saw from all the brands I researched that it also had the highest caprylic content, at 67%. I also bought it from All Star Health. It was only about $15 for a 33 oz. bottle. This is the only MCT oil that I have used, along with the CO, since starting this in February, and my lady has shown much improvement.
I was researching the Axona ingredients and I mistakenly thought that caprylic trigylceride was a combination of both the Caprylic and Capric. I thought that there may be more of the capric in Axona than the caprylic which was one of my reasons for changing to the Now Brand and along with the improvements reported by swarfmaker and Dr. Newport. No wonder I couldn't find how much of each was in the caprylic trigylceride! This is what I get for not taking notes and just wandering from one article to another. Boy, am I embarrassed! I've researched so much stuff lately that I can't keep anything straight. It just didn't register in my brain. I think I better start using it myself!
Thank you for your kind remarks about my lady! I would love to see "miracle improvements" but I'm very happy with the ones she has made in the last few months. If she stays where she is, then that's okay too because she still knows me and the rest of the family. She is now happy and aware of her self and others, and is very active. She takes much joy in her life and this makes me happy for her. She also brings joy to the people who are around her, even strangers we see at stores, restaurants etc. She makes them smile and laugh and that is good for everyone. These things are more important than if she remembers the day, or to go to the bathroom on her own or to remember all of the time that her shorts don't go on her head. (Although, the bathroom one would make ME deliriously happy.)
swarfmaker, I am ordering more Ultimate Nutrition Premium Gold MCT as soon as I post this. I think I'll stick to it since it has the higher Caprylic trigylceride content. I'm really anxious to see if you have better results using this and I hope you keep us updated on your mother. I think you'll probably see more improvement. I was also wondering if you monitor your mother's glucose while using the cinnamon? I mentioned earlier today in another post above about this and I thought maybe you could input on the results I was getting for my lady. If you do monitor your mother's glucose at home, are you getting the same kind of results? I don't know if they are even relevant for what the cinnamon is doing to help or if it can even be monitored this way. All I know is that my lady's glucose is very good.
I appreciate all the info that you and jab contribute to all of us here, it really makes a difference and is so very helpful, especially to us that can't seem to think straight anymore!
swarfmaker, I don't know if you can check glucose accurately without the meter. I don't think the urine test strips are as accurate, but you could use them. This used to be the only way diabetics could test their glucose at home. I don't know if you need a RX for these test strips. You could always ask your doctor if he might have a glucose meter. Many of the companies that make them will give the doctors free ones to pass out to patients. He would have to write a RX for the strips that go in it, but they are covered under most insurances. I may be wrong but I don't think that Medicare or Medcaid will pay for the injection needles that go in it. I believe they are no more than $10. A lot of time, Kroger or someplace like that will run ads in the paper to give out free machines and you just have to bring in a RX for the strips.
I just happened to have one here and thought that I would use it to keep an eye on her glucose. The Ketone urine testing strips you can buy OTC in the diabetic section at walmart etc. You could use these strips to check her urine to see if she has ketones in it. I believe the Dr said that the ketone urine strips should be negative at all times after eating. If the strips show a result than I believe that means they are burning too much fat and dumping ketones out and their body's insulin isn't working correctly.
My lady isn't a diabetic either but none of us know if they have an insulin resistence either unless they are tested for it. My husband didn't know it either until he was tested. His fasting blood glucose tests were always less than 100, so there were no flags other than his symptoms, which have occured sporadically over the last few years. We just didn't know what was causing them. He had an MRI of his brain, the carotid artery ultrasound, echo, cardiac stress tests, you name it, he had it. They were all negative so we thought it may be stress, or not sleeping enough, diet, glasses etc. All this time it was due to insulin resistance and the hypoglycemia it caused.
This is what puzzles me, if our LO is taking all this MCT/CO or Axona, shouldn't we be seeing at least some ketones in the urine? I haven't detected any in my lady's but I don't test every day. Just a few times a week. I also only test at the 1 and 2 hour period after eating her meals which is when she eats her oil and cinnamon. Maybe 2 hours is too soon to see if the ketones are in her urine, or maybe all the ketones are being used up. (I hope by the brain). They say that ketones are a by product of burning fat, so wouldn't we see them in the urine after consuming so much oil no matter when we checked? I didn't begin to test her until after she had been taking the cinnamon for about a week and a half so maybe it could be due to that. I know cinnamon regulates glucose, do you think it could also be doing something for the ketones as well and that's why I'm not seeing any ketones in the urine? Tomorrow I'll check the urine at different times than 1 or 2 hours after eating to see what the results are and I'll let you know if they show up later than 2 hours after consuming the oils. The other line of thought I had may be that the cinnamon is regulating the glucose and the insulin is working properly, which means the fat is burning at a rate that is producing the right amount of ketones which is why I'm not seeing any being dumped in her urine. She is taking 6 Tablespoons a day of the MCT/CO, which is quite a bit and she is a small person. It just perplexed me that I haven't seen any ketones yet in her urine. I was expecting to see at least some small amounts.
I may be just trying to over analyze this and it means nothing. I would appreciate any thoughts or information you or anyone else may have on this.
Something else I should mention, last September, my lady had an episode where she became irritable, then sweaty, and clammy, and then weak and dizzy. I took her to the ER and as we were walking in she started to act as if she were going to faint. She bent over so far that I had to hold her up and get help from a security guard to get her in the ER. She was admitted and was in there for 3 days. Her blood pressure was 72/25. Her blood pressure usually runs 90/60. They started giving her glucose and she returned to normal in just a little while. They tested her for everything in those 3 days. They never found out what caused it. This episode she had happened about an hour or so after she ate breakfast.
She had similar episodes, only not as severe, in the months of Oct. to Feb. One doctor said it could be to the Aricept, another the Celexa, another said dehydration which I knew it couldn't be because she drinks constantly. She has been on Aricept almost 2 years with no problems. This wasn't a side effect of Celexa either.
I remember about a year and a half ago, I had to get my lady from school because they said she was sick, and it was similar symptoms but not nearly as severe as last Sept. I took her straight to the doctor and her blood pressure was 70/40 but no fever etc. He thought she was getting the flu and may be a little dehydrated so he prescribed some meds and fluids. After she drank some gatorade she was fine.
I think she was experiencing hypoglycemia because the symptoms match. It would just happen out of the blue, one minute she would be fine and then the next it would hit. Sweaty, clammy, weak etc. and this would caue her blood pressure to drop which would cause the weakness, and faintness, and she would have to sit down or lie down. After a short while she would be fine.
This all started when the traumas I mentioned in my first post, hit her and the AD went from very mild to moderate or more virtually over the course of just a few weeks. The trauma kicked the AD into overdrive and I think along with it, the glucose went haywire.
Since she started the Coconut oil in Feb. she hasn't had another episode since. I don't know why that is unless it can be attributed to the ketones getting to the brain in place of the glucose. I have no idea except she hasn't had an episode since starting the CO. No other meds have been discontinued.
Until a few months ago, I didn't know very much about AD and that limited glucose and insulin resistance was a factor in it. The doctors didn't know it either or they would have recognized the symptoms knowing that she had AD. I have learned so much in just the last few months that now in hindsight, I believe she may have been experiencing insulin resistance or something similar to that effect as in her glucose being out of whack, and it was causing hypoglycemia. I really don't know for sure, but I would bet some money on it now. I don't know if it was a cause or effect of the AD but it is plain to me now, that it was something to do with the glucose and insulin. I will have the Dr. do the insulin resistance test on her when she goes later this month.
Since there haven't been any symptoms since starting the CO/Mct oil and now the cinnamon, I don't think it will show up. Her glucose is testing very good now, but I wasn't testing it when all this was going on. She had regular blood glucose tests but now I know they don't show the insulin resistance problem.
This is all just my opinion and my observations. It really didn't hit me until tonight about all of this happening in the past. I also apologize if it is a little confusing, but it is really late and I'm getting sleepy.
July 02, 2009 Another observation is that my lady has not had a cold, flu or anything at all since starting the CO/MCT regiman. She used to get a cold every 1 or 2 months. This was due to the fact that she is a very social person and is a very affectionate person. She would run up to people hug and kiss them before you could even take 2 steps to stop her. She also goes to a Day Treatment Program (which is like school) and is exposed to many people there almost daily.
Nothing has changed except that she may be more affectionate and social than ever before.
Just wanted to let you know and to see if anyone else has noticed a side effect of the CO/MCT like this.
3.25 hours after breakfast - Ketone strip - Negative. I didn't test the glucose because there was no point in it and I didn't want to stick her finger again for nothing new.
Medications before breakfast - 1 Immodium, Synthroid, Celexa, Namenda.
Medications during breakfast (more towards the end) - Multivitamin and 500mg of Cinnamon.
2 tablespoons of Mct/Co was mixed into her eggs.
I don't know how much more regulated her glucose could be by using these numbers. They are so consistant that I don't know if I should be worried about them or not.
It is surprising to me that her fasting glucose was 88, and is actually higher than the glucose numbers of 83 and 85, which registered after eating - but also after taking the cinnamon. These numbers should have been higher.
I guess I'll add this to my search lists which seem to be growing every day.
I wish that I would have done this glusose/ketone testing before I started the CO/MCT oil and the cinnamon. I didn't know much about glucose and AD until in the past few months, so I have no idea if any of these numbers would be different. I only have my suspicions.
The only other factor that I can attribute to the theory that these numbers would have been different is that she has not had an episode such as I described above in another post, since starting the CO/MCT.
If anyone has any theories or knows about this kind of thing then I would really appreciate your input. Thanks!
I'll also post this at the cinnamon thread.
Wanted to add that I give her 500mg of cinnamon in the morning during or right after breakfast and then 500 mg of cinnamon at bedtime. These are just the cassia cinnamon capsules that you can buy at Walmart.
This is a response to my previous post from Dr. Mary Newport. I don't think she will mind if I post it here too, since I see that she also posts here at this forum, and it is relevant to the subject that I was discussing in my previous post about ketone testing. I haven't posted other responses to my postings because they belong to those persons and I don't think it is right if I copy their posts here without their permission.
July 03, 2009 02:12 PM
"I asked Dr. Veech early on about the Ketostix and he said they are "worthless" for the levels of ketones we are concerned with. Also, on the front of the bottle is says that they are measuring the ketone body called acetoacetate, and therefore not beta-hydroxybutyrate, which is produced in larger quantities than acetoacetate from the medium chain triglycerides. They are more useful for a diabetic to monitor for ketones which can become many times (25-50 x) higher than the levels we are hoping for. The ketogenic diet produces levels 2-4 x higher than from eating medium chain triglycerides - it is just a relatively difficult diet to stay on for the long haul.
Hi Dr. Newport! I tried to post these last few posts at your blog but google wouldn't let me. It kept telling me that I wasn't registered. I'm going to try again, so people who read your blog but not this board may follow my lady's progress. That's if it's okay with you. I don't know if this clutters up or slows down your website but if it does just let know and I'll just keep these novel length posts here. I just can't seem to write anything shorter than a 300 page novel.
Thanks so much for the ketone input, I was starting to worry that something was wrong when I kept getting negative results. I've been trying to research the ketones, but I haven't had much time lately and I could only find info about testing ketones if the person were on a ketogenic diet. I started to wonder if she was getting too many carbs and it was affecting the level of ketones produced from the MCT oil she was taking. I'm glad we won't have to do this anymore because my lady was getting a little irritated with me trying to catch her urine.
I remember reading that your husband had times when he would become weak etc. and have to lie down. Did you ever discover what was causing this or was this a condition caused by the AD? I was curious because apparently this doesn't occur anymore since he started the oils, and my lady hasn't had any more episodes since starting the CO. She actually seems more healthy physically and as I mentioned above hasn't had an illness since before the oils. She also used to get cold sores/fever blisters but hasn't had any since beginning the CO.
I believe her episodes were caused by hypoglycemia, after seeing how it affected my husband. They both had the same exact symptoms. When she was in the hospital, they didn't bother checking for insulin resistance, because she didn't have a history of diabetes and like my husband, her glucose labwork was fine. I don't know for sure of course but for 6 months they just could not find anything else wrong, and then when she started the CO, the episodes just stopped.
I had to decrease the amount of CO/MCt oil because it was causing some diarrhea. We are now using 5 teaspoons of the same mixture at each meal. (The mixture is 1 cup of MCT oil and 3/4 cup of Coconut Oil).
She is using more words that I haven't heard for a long, long time. She is not only using more sentences, but is communicating with more clarity when she wants something or is commenting on anything, or telling me something in general.
She is also improving in small steps in her daily living skills programs more than she was before.
But along with these improvements, she is also a little depressed at times. She is also very grouchy and very inclined to tell me "NO" when she doesn't want to do something. This is a behavior problem that she had last summer, but had gone away last fall when she was regressing and had become more docile. It appears to me, and this is just my opinion, that she is going back in time with her improvement, and also with everything else that she was experiencing at that time, hence the bad behavior and the depression.
By this, I don't mean that she is regressing, but that she is literally unlocking things in a backward manner through time. It is very strange and I have no explaination for it.
We also increased her Celexa to 20mg once a day to see if it will curb the depression and bad behavior like it did late last summer.
I'm happy that she is unlocking things in this backward manner just as long as she keeps going backwards and doesn't stop. I love the improvements, but I could do without the depression and especially the bad behavior! LOL
I'm sorry that I can't give you more of a reason why this is happening, but I couldn't find anything on the internet about this anywhere, in any postings about using Co/MCT or Axona. If there is anyone out there reading this, who has experienced something similar, I would really appreciate it if you could tell us your story too.
She had bloodwork done yesterday and sees the DR. next week, and I'll let you know how the cholesterol etc. is and if there were any changes.
Something else I should have mentioned, she had an MRI on her brain in May of 08 and then a Cat scan in Oct. of 08. The neurologist had them compare the two and he said there was no change in the brain, between the two.
They both showed "the lateral ventricle was moderately dilated, and the 3rd and 4th ventricles were relatively normal in size. There is mild spotty white matter nonspecific signal abnormality. There is mild to moderate generalized atrophy with prominence of the sulci."
The rest of the brain and stem were fine and showed no abnormalities. It also said that there was "mild paranasal sinus disease. DWI images show no areas of restricted diffusion".
I'm not sure what all the terms mean exactly, but the neurologist said that she had moderate brain atrophy.
He will do another MRI this fall and I'm anxious to see if there is any change with this one.
My lady was having some problems with sleeping last week and I thought it was due to her taking a 500mg cinnamon tablet and a 1200 mg. fish oil capsule at bedtime. I cut out the fish oil capsule and started giving her the cinnamon in the afternoon around 3:30 pm instead. She still was waking up and staying awake for a while and whining and being grouchy etc. I didn't restart the pills though because I wasn't sure how long they needed to get out of her system if they were the cause. She had also been extremely irritable and grouchy during the day too, with some behavior problems.
Well they weren't the culprits, yesterday we found out that she had a light sprained ankle and it must have twinged in the night which is what woke her up and caused the behavior problems. (I have no idea how she sprained it.) After the doctor put an ace bandage on, she slept all night. I decided that I would start the pills back today since they weren't the problem.
This morning she had another episode like she had last September, irritable and refusing to make her bed, she was cold, clammy and sweating. This time I checked her blood pressure which was a little higher than normal and I checked her glucose which was 116 fasting and then 1 hour after taking a 500mg cinnamon capsule and eating breakfast, her glucose was 110. I didn't take the 2 hour test because it was clear that it would be around the same as the 1 hour test. (I didn't want to stick her again).
If you read my previous post about the glucose you know that her glucose was running in the 80's for all three tests since starting the cinnamon capsules last month. Normally, fasting glucose should be below 100 and the 1 and 2 hour tests should be less than 180 by my doctor's recommendations but the American Diabetes Association says 140.
I attributed it previously in Sept. to hypoglycemia (low blood sugar)which I still think it was at that time because it was about an hour after she had eaten and her symptoms were much worse.
This time I think it was due to the fact that, for her, at 116 her glucose was too high. Some people don't tolerate changes in their glucose well even though it falls into safe points range. I've had a few people with diabetes tell me that if it changes too much either way, it will make them feel bad. Today her glucose at fasting registered about 30 points higher than what has been her normal fasting, which can cause the same kind of symptoms of hyperglycemia (too high blood sugar). Like before, the 1 hour test showed her glucose at 110 which is lower than the fasting, even though it should have been higher but she had taken the cinnamon capsule with breakfast.
It is apparent, at least to me, that cinnamon does help regulate her glucose. I will start the cinnamon at bedtime today and check it again in a couple of days to see if her numbers go back down. I'm also going to do a glucose test after lunch or dinner to check her levels at this time of the day to see if her glucose is being regulated through the day. If it isn't then I will ask the doctor if I can give her another capsule with lunch or dinner. I always check with him first before I make changes in increasing anything, even if it's not a RX medicine.
You also have to remember that when she has had her routine bloodwork done, every 4-6 months, her glucose always was fine. If you have insulin resistance, your glucose will fluctuate up and down and it will do it sporatically so that you may not be aware that you have an insulin resistance. Our LO can't tell us all the time if they feel bad, or may not know why they feel bad.
Just wanted to add this to the thread in case anyone is having similar problems. For myself, I have seen that the cinnamon does work. You may not see "improvements" with the cinnamon, but it is working to keep the glucose regulated and that helps the brain.
Thank you swarfmaker, for all the info you have posted about cinnamon, and for bringing this to my attention.
Checked her glucose before breakfast (fasting) this morning. It was 92. I gave her a 500mg cinnamon capsule at bedtime. This is apparent to me that the cinnamon does regulate the glucose, at least for her, and it appears to do it in a short amount of time. (Yesterday morning the fasting glucose was 116).
Just wanted to let you know that since Sunday, I have seen a much greater improvement in speech and cognitive thinking. Much, much less of the garbled speech. Much less of the behavior problems also.
I started giving her the cinnamon capsules on June 10th and Sunday was July 26. This has been about 6 weeks. Even though, I didn't give the cinnamon capsule at bedtime, I still gave it to her at 3:30 pm so she was still getting 1000 mg a day. I already have seen that it regulates her glucose, so I have to attribute these recent improvements to the cinnamon because nothing else has changed. I know that AD has it's ups and downs, but if these are sustaining improvements, then it has to be attributed in part to the cinnamon. I think it is a combination of the cinnamon, CO, MCT oil. I don't know for absolutely sure, but I know these things are helping her. They are the only new things that she has been taking since we started this journey in Feb. She has not declined and her speech before was that you couldn't understand maybe 3/4 of it. Now you can understand at least 1/2 or more. Her daily living skills have improved in some areas also, though not as much as her speech has.
I will keep you posted on any more improvements, declines etc. I hope these improvements get better and stay.
neuroprof, thanks for the suggestion about monolaurin. I will research this and talk to her Dr. about this.
My lady got slightly sick with a runny nose for 2 days and a bout of diarrhea that I think was related to whatever bug (if any) she had. I decreased the CO/MCT oil to 4 teaspoons a day. I have noticed a decrease in her speech and memory and she has been especially grouchy. She has also developed a cold sore on her upper lip. I took her to the doctor and he did a blood test for the flu and swine flu. I'll post the results when I get them.
I'm going to increase the oils slowly back to 2 tablespoons with each meal. I'll let you know the results. This may take a while because she has problems with diarrhea and we need to take it slow.
Thanks Jab, she seemed to be feeling much better yesterday. She was in a better mood and only said "bull____" about 100 times which lately seems to be her favorite reply to most requests from me, to do something for herself. LOL
I got the results for her cholesterol levels back. She had blood work done in Feb. 09 just before we started the coconut oil. I'll post both sets of numbers here so everyone can see the difference.
Since using the CO/MCT oil her cholesterol has improved. I was a little worried about the cholesterol getting higher but it actually lowered. This is good news. I will have her tested about every 4 months just to keep an eye on it.
As you have read in my previous posts, I've been giving her a pretty large amount of the oils after building them up slowly. She is only 4.6 ft tall and now weighs 129. When we started the oils, she weighed 117. She has gained 12 lbs. but I think it has leveled off because she has kept this weight for about 1 1/2 months now. I have cut out almost all other fats in her diet, except for Canola oil which I cook with if I can't use CO. I haven't really cut back on her carbs etc. because she loves FF and any pasta dishes. She also has ice cream every night now which might have contributed to her weight gain. All in all I am happy with all of this
Sorry I still haven't checked her glucose levels in the afternoon but I plan to do it today. I'll post the results later. I started giving her a 500 mg capsule of cinnamon at lunchtime on Friday.
I just wanted to note here that I have been experimenting with the dosage of CO and MCT oil in the last couple of weeks. For 5 days I gave her 4 teaspoons of just the MCT oil at all meals, and then I added 2 more teaspoons of CO to it at all meals.
I have seen more words and cognitive thinking and more attempts at independant things whether they were successful or not, that she hasn't attempted since a year ago. For example, she used to always empty the bathroom trash can by taking it from the bathroom and taking it to the utility room big trash can and dumping it into this. Twice this weekend she brought the trashcan out of the bathroom and carried it to the door of the utility room and then set it down there. She hasn't even thought of the trash can at all in the past year at all except to mention a few times that it was getting full.
She will not get out of bed by herself until I come in and get her up in the morning. In the last week she has not only got out of bed most mornings but has taken her Pj's off and on one occasion also her depends which caused a mess, but hey, whether it's a mess or not, at least she got out of bed and did it on her own. She has not gotten out of bed on her own in the morning since last August.
The last few days I've been shutting the bedroom door and having her open it by herself, while we are both in the bedroom. There is a shoe holder on the door that I may remove so she can see the doorknob better. I am going to start teaching her to get up, open the door, and go in the bathroom on her own. Maybe one day she will remember how to do this.
She has many training programs that we have to do, but there is so much more we do. It is very consuming to try to do this training and then do all of the other things that just come up such as these things. But if she attempts anything on her own, I'm determined to keep it up in the hopes that by her doing it daily, it will eventually sink in. I think I'm running out of hours in the day and my energy level is getting low sometimes.
We have a good support system though with my husband and her respite worker and adult companion which gives me a break and time to get other things done. Right now, I look at this as the most important thing in our lives. We are trying to save her mind and we love her.
This is so strange, and as I said before, it's like she's going back in time. I don't know, maybe this is a part of Alzheimer's but it doesn't seem like it. She is not regressing, but talking more coherently and remembering words and phrases and following conversations and still progressing with her daily living skills and is still able to learn new small things.
She also in the last couple of weeks, has had worse behavior such as saying "No, I'm not going to do it" when verbally prompted to do something such as wash her hands etc. She is also more argumentative and talking to herself, such as herself saying "come on baby, you can do it by yourself" and then answering herself in an argumentative way with, "No NO I can't". This is separate from when she tells me directly that she won't or can't do it. I call it her Dr. Jekyl and Mr. Hyde syndrome because that is what it is similar to. LOL Although when I ask her who she is talking to, she always says, "My own self". So it doesn't appear that she is a multiple personality, I hope. She says she doesn't hear voices talking to her, but I can't say if that is true or not. People with Down Syndrome do have imaginary friends sometimes and do talk to themselves, especially when they are depressed or ill. She always did talk to herself before the AD but not as in talking to another person but as just talking out loud to herself.
She is also telling everyone or people on TV to "Shut up" constantly it seems like. I tell her it isn't nice and she says she's sorry and won't do it again but 5 seconds later she's back to it again. I believe this is related to depression, because last summer she was extremly depressed over the deaths of the other two people and she had the exact same behavior. She has been talking about them a lot lately. She is on Celexa but we have had to adjust her dosage frequently due to different changes in her. She takes 10mg daily but 20 mg. is too much so we put it back to 10 mg and then increased it to 15mg a few days ago. We'll keep it here for about 3 or 4 weeks because it takes that long to show a difference. Maybe if she tolerates this dose well then we can up it to the 20mg and she will be able to tolerate it then. Going from 10mg to 20 mg. seems to make her dizzy and irritable, with diarrhea. She is the type of person who has to be incremented slowly when it comes to meds. The instructions with Celexa state that elderly women should not take more than 20mg of Celexa a day. So we will try this and if it doesn't work then maybe the Dr. will change it to something else.
New phrase yesterday she said was in talking about her friend who died, was "I give him some, I divided it up" this is in regards to talking about marshmellows. This morning when walking out to the bus, the neighbor's dog was on the front porch and scratching herself, she said,"Oh baby, she's got pleas" (meaning fleas). (She talks with a lisp). The, I divided it up concept, and she's got pleas, are new phrases I haven't heard for over a year or so, and they were used as a result of a thought process in her mind after seeing something. She talks much more than this but I thought I would mention how these new words or phrases occurred.
What this all means, I don't really know, I just have my past experiences with her and thank God for my notes. I can't remember hardly anything anymore because it seems like the days just run together and if I am trying to adjust the CO/MCT oil or something else, she will have other external things occur that just can't be ruled out, as also having an impact on her. Such as getting sick or spraining her ankle or depression getting worse etc. This is one of the hardest things that I think I've done. It is definetly the most mentally stressful thing. If anyone is embarking on a journey like this, I strongly urge you to document in detail, everyday if you can, everything that is done or that happens, because it is almost impossible to remember it all. If it's easier for you, then start a thread like I did here and document it here. You can always cut and paste it to a word document to save on your computer. It will also help anyone out there looking for some answers for their LO with AD. That's why I document here also. If it helps someone else or gives me answers to my questions then that is good.
I'm so thankful for this forum and all the members at Alzheimer's Association and I hope I can help someone who is looking for answers just as I was when I first came here. That's why my posts are so long, I put all the detail in I can because it seems like it's the details that help me.
Just wanted to notate that when I decreased the CO and increased the MCT oil, this is when she got sick and broke out with a cold sore. Dr. Newport's husband also had a break out of cold sores when she cut back on the CO and increased the MCT. My lady has not been sick since starting with the CO in Feb. 09 until just here recently. She use to get a cold almost every month prior to this.
I personally believe that there is some truth to the anti inflammatory, and anti bacteria etc. properties in CO, or at least in regards to my lady. Whether this is the case for other people, I can't say, even though it appears that it reduced the occurance of cold sores for my lady and Steve Newport, who both had a history of getting them.
If any one reading this has had something similar occur, I would appreciate you posting it here. Or anything that you may want to post here that you have experienced, or have information about. Everything helps, whether it is relevant to this subject or not. Thank you!
August 11, 2009 09:09 AM
I'd like to thank Dr. Newport and Steve Newport for all the help they have given me and for answering all my many questions. I appreciate you taking the time to answer them, I know how busy you must be.
Amelia, I really admire your perseverance and dedication in this extensive documentation. I have been giving my husband CO and MCT for about five weeks (he has AD, stage 4) and I do not see any improvement, at least not so clear that it would not be part of the ordinary AD roller-coaster. Your example may inspire me to make more of an effort to achieve a consistent (and well-documented) dosage. One problem is that I cook for both of us, using the oils, and don't know how much of it he gets. He would not accept my adding anything "medicinal" to his food, so the whole process has to be invisible to him, or just look like part of the ordinary food preparation process.
I must say that I have also seen no decline during this time period. Also, we both feel great physically. I have not gained any weight. I think that he has, but this is not (or not entirely) due to the oil. He has been eating a lot. Thank you for posting here.
If you mix the co and mct oil together and set it in the sun or somewhere warm, the co will melt down until it looks just like the mct oil. I mix it together in a jar like Dr. Newport does because it is easier to use like this. I found that if you take a cup of yogurt or pudding and put this mixture in it and stir it well, it mixes really well and you can't see it and the sweetness will cover most of the taste. I also mix the oil in spagetti or any pasta and you can't tell it's there. Rice dishes are good too. Maybe you could try this or bake the macaroon cookies. Another thing that is good is putting the co on toast or bagels like butter and adding jelly or apple butter. This tastes pretty good. Maybe if he is still able to read, you could print out some articles for him and this might make it more receptive for him, if he is able to see the benefits for himself, if not, then maybe you could read it to him. If you need to disquise the taste then you could use the Louanne brand at Walmart. I use this now to cook with but I used it until just last month with the same results as the EVCO. I changed because even though it was non hydrogenated and 0 trans fat, it was refined to take the coconut taste out. It still worked the same though with excellent results. Good Luck!
Thanks Amelia. I don't have any trouble using enough oil: the issue is really the measurement. (How much of the spaghetti does he eat, how much do I eat, how much is left over and put in the fridge, and who eats that?) I know of course that this is a question of preparing and dishing the food out individually but this is not how we've always done it, so . . . I should just get it organized. I'm off to make him some more fugde; at least I don't eat any of that.
Art has such a sensitive digestive system since his surgery for GERDS 10 years ago. He will have the coconut oil on a bagel for breakfast and that gives him diarrhea. I really have not worked on alternatives. We do buy coconut cookies - not sure how much he gets from them. The only store that has coconut macaroons - they seem to always be burned so he won't eat them.
charlotte, i buy the ones recommended by dr mary newport that have high lauric/ caprylic acid count. they are natural and only have egg whites, unsweetened coconut and honey/no preservatives=i found them at the local health foods but they have a web site, jennies-macaroons.com if you like to see them. DH gobbles them they are very good- and not burned and like spongy and soft-. delicious and no preservatives.
Okay, the past few days I've been giving her 2 tablespoons of a mixture of 4 to 2 co and mct. That is 1 cup of mct oil and 1/2 cup of co mixed together in a jar. The first day I put 2 tablespoons in a packet of instant oatmeal with 1 piece of toast added to it to help soak up the oil with milk and Splenda added. I added 2 tablespoons of coconut flakes to it for the fiber. First I gave her a banana to eat and then gave her the oatmeal about 5 minutes or so later. She "dumped this about 10 minutes after eating.
Next day I did the same thing but put 2 pieces of toast in it. Very small amount of very soft stool. (Sorry to be so graphic, but it might help if you have found yourself as I have, actually examining someone else's stools).
Next day same thing but I only added 1 tablespoon of coconut flakes and 1 piece of toast to oatmeal. No dumping but just a small regular BM.
This morning same routine as yesterday. Banana first, then instant oatmeal pack with 1 toast and 2 tablespoons of the 4 to 2 oil mix with 1 tablespoon of coconut flakes added. Forgot to add that she also has black coffee. No dumping or BM at all 3 hours later.
It took a few days to get where she won't dump the oils in the morning, so far. She usually only has problems with the dumping syndrome in the morning. It doesn't affect her very often at lunch or dinner.
I've also been giving her 2 tablespoons of the 4/2 mix at lunch and after dinner in applesauce or yogurt and I have been adding 1 or 2 tablespoons of coconut flakes with it.
I have noticed a few more new words and about the same in the daily living skills, but she has been especially grouchy, and prone to more crying jags and last night, wanted me to sleep in her bed with her. She actually tried to push me in the bed. She seems to be afraid of the dark again as she was after her roomate died. She has been talking about them much more this week and this always results in the crying/laughing jags etc. This has only worsened this past week.
I increased her Celexa from 10mg to 15 mg on Sunday and this is when I saw an increase in the behavior problems more so than before. So I'm inclined to believe it's from the Celexa. The doctor said it takes about 3 weeks or so to get it regulated in your system and the company that makes Celexa says that it takes a week for it to reach levels in the blood and 4-6 weeks to feel the impact. So I'll continue for about 3 more weeks and then talk to the DR. and see what he thinks we should do if she doesn't get better emotionally.
As I said before, I went back a year and 1/2 ago and read my notes on her and these are the same behavior symptoms that she was displaying at that time. I have seen her going backward in time and I don't mean regressing but an actual movement back through time, in opening memories or what ever it is, in the things she was still capable of doing at that time along with the behavior caused by her depression. In my opinion only, I think the oils and cinnamon are unlocking memories backwards in the order that she lost them. This is my impression from my notes and my own memories from what she was doing before.
I honestly don't know what this is all about, and I haven't read anything anywhere about other people with AD doing something like this. So if there is anyone out there who's loved one has done this, would you please let me know. I would appreciate it so much! If anyone out there who is seeing improvement with their LO on the oils, is also seeing this type of thing, would you please let me know?
I tested her glucose this weekend in the afternoon after lunch to see if she needs a cinnamon capsule at lunchtime. (I did not give her a cinnamon capsule at lunchtime even though I had been giving her one at lunch last week).
1 hr after lunch glucose was 92, 2 hrs. after it was 105, 3hrs. after it was 104. With numbers this good, I will discontinue with the cinnamon capsule at lunch. I'll continue to give her the 500 mg at breakfast and the same at bedtime. This equals 1000mg a day and seems to work well for her by keeping the glucose regulated.
I've continued the 2 tablespoons of the 4/2 oil mix with the coconut flakes and she is tolerating it well. I found that if you mix the oil in a bowl of 1 1/2 cups of dry cereal like honey bunches of oats and stir it a few times the oil really soaks into the flakes. I sliced a banana in it and then added 2 tblspoons of Coconut flakes and the milk. This, with some toast and jelly, worked very well with no dumping syndrome at all.
Much better behavior also which I think is due to the increase in Celexa. More words and much better cognitive thinking, which is due to the increase in the mct oil I think. I added the coconut flakes to her diet in place of more co because they help with the fiber and help to prevent diarrhea. I wanted more mct oil but I also don't want to decrease the other benefits I believe that CO offers in the rest of the medium chain fats it contains, so therefore I added the coconut flakes instead of more co.
Just a side note, I just watched a 9 part series on AD at youtube. I recommend it highly. It has a lot of info and is very interesting. It talks about ketone energy and mct oil. One part deals with chronic infections that may play a part in AD. My lady has a history of cold sores, cysts under her arms and also has a toenail fungus. These were all mentioned as being some of the culprits that may be factors leading to AD. Here's the link to it, which is also on another thread, Tau tangles.
I posted this at another thread, in reply to a comment at that thread, but I need to post it here also.
"Comment from bluedaze
amelia-is your LO a spouse? Our site is for spouses only and we prefer to keep it that way. "
bluedaze,
No my Lo is not a spouse, she is someone that I care for. I didn't realize that this forum was for spouses only. I won't post here anymore and I'll leave it to the administrator to delete any posts of mine if she feels that they don't belong here.
My purpose here was to let people know about the results of using CO/MCT oil, or anything else, and any benefits or declines that we may have. I felt that if any of this information could help someone, then I was more than happy to post it in case it would help them with anything pertaining to their LO's, whether it was the oils or something else. I'm very familiar with documenting in detail because of my job, which I thought may help people who don't do this type of thing.I know that personally, I have been desperate to find some answers for questions, and I thought that if people could read some of the details of what we are trying to do, then it may answer some questions for them, one way or another. There aren't many places on the internet that people can go to and find answers to questions, that involve something more than the scientific explaination of this disease.
If anyone is interested in the ongoing results of CO and MCT oil for my lady, then you can read about it here:
These message board systems typically allow more than one "forum" to exist at a time. May I suggest the creation of another forum (i.e. another "category") devoted to "medications and treatment options", since when it comes to physical care, medications and treatments, it really doesn't matter if you are caring for a spouse, parent, neighbor, or you are a medical researcher caring for no one at all. The challenges are pretty much the same, no matter what the relationship the poster has to someone with AD. Discouraging those not caring for a spouse with Alzheimer's disease (or those caring for a spouse with some other disease, such as FTD), from contributing on these topics only results in a loss of information for the denizens of this message board.
and there are other message boards around that can give that information here. We have welcomed Mary Newport because she is caring for a spouse. It's Joan's call as to whether or not to allow us to be inundated with coconuts on one thread or a different forum. For many complicated reasons, it is not a subject that I am interested in, nor do I wish to be chastised for my choice.
Many here also read at the Alzheimer Association site, so posting there will enable people from here to read the information. Amelia i have found your post about your friend very interesting and if you are posting on the Alzh. Assoc site it can be found by people from this site.
Joan has tried setting up different categories but it does not seem to work here.
swarfmaker - you have really posted some nasty, not too caring attacks towards us here on this site because we do not all agree with you. I take offense to that and really do not want to see you posting here anymore.
I have allowed swarfmaker and amelia to post because their posts are all about the scientific aspects of coconut oil/axona/MCT oil. Many find these informative postings interesting and helpful. If like me, they are of no particular interest to you, please just skip them.