I am 74 years old and I have Parkinson's, diagnosed 3 1/2 years ago and am under conventional drug treatment by Mayo Clinic. A year ago, while taking Mirapex Er (3mg) and Azilect (1Mg), my symptoms had progressed to severe slowness, unsteadiness, chronic stiffness and joint pain, frequent freezing episodes and I dragged my left leg. I had lost all facial expression and my lower left leg was retaining a significant amount of fluid (swelling to about 130%).
The addition of Carbidopa/Levodopa (25/100, 3 per day) eased the joint pain and the freezing episodes and restored some of the lost balance, but I still had annoying unsteadiness, slow movement, and could not rise from a low chair unassisted. I still dragged my left leg. I began to have severe lower back pain (under-medicated?) and got some relief from osteopathic manipulation.
This past April, I began taking coconut oil, worked up to 8T daily (4 with breakfast, 2 at lunch, 2 at dinner). I saw significant improvements in a couple of days. My wife and friends are astonished at my apparent recovery. It is strikingly noticeable. The reason for this dosage pattern is that I can feel a return of old symptoms 6-8 hours after the last dose, especially the return of dragging my left leg and low back pain.
Current status:
I move so quickly about the house (kitchen) that my wife and I nearly collide,
My speed on the elliptical trainer changed from 2 mph to 3.5 mph in a few days (I had to be careful with this, my knees were not used to this level of performance)
I have good balance (stand on one foot, put on pants standing without support, confidently step over small objects 6", etc)
I can rise from any chair unassisted
I can do football agility drills (shift right, shift left, step forward, step back in response to random commands)
Past and Present Photos show a pronounced change in facial expression
I can smell again
My osteopath has noticed a pronounced improvement in joint flexibility
The swelling in my left leg has disappeared.
I walk normally, but still have a tendency to stoop.
Back pain has disappeared, but returns quickly if I get behind on dosage
My primary care physician has declared my improvement miraculous, he calls me his "clinical trial of one"
I have no delusions that this is a cure. I still have Parkinson symptoms, but my quality of life has vastly improved. We are about at the end of 3 months, and the benefits are maintaining. Something real has happened to me.
There is solid science behind this: Blog of Dr Mary Newport
I strongly encourage you to look a some of her postings on the Internet and to read her book: Alzheimer's - what if there was a cure.
Saturated Fat Myths: The knee-jerk fear of saturated fats has been largely discounted by modern research results. Nonetheless, my doctor did a complete blood workup on me after 2 months: big rise in HDL (good) and all LDL in large particles (good). Healthy blood report!
I may be a lucky one. I take my coconut oil on top of hot tea or coffee, hardly noticeable. It can cause indigestion, so start slowly and work up gradually. I saw benefits in a couple of days. In the interest of science, give it a fair trial and then report your results (COMFIRMATION OF PD STATUS, dosage, time used, results POSITIVE OR NEGATIVE), preferably to tis blog and to Dr. Newport: ketones08@aol.com
Dr. Newport reports that 19 PD patients have reported benefits to her. Her initial and primary interest is in Alzheimer's. To the degree that this is a case of benefit from improved nutrition to the damaged brain, there is hope that some of the AD benefits will also apply to the PD patients. USF Health Byrd Alzheimer's Institute began double blind Clinical Trials on 65 AD patients in April, the first clinical trials of coconut oil as a therapy!
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fwes
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That is amazing!!!! Thanks so much for posting this. I'm going to start my husband on coconut oil. Are you using refined or virgin/unrefined coconut oil?
My husband has been taking one teaspoon in the morning and one in the evening. Is a T a teaspoon or a tablespoon? He is certainly more mobile, and from what you say a higher dose might help even more. We have been getting all our friends who have Parkinsons on to the oil. In one case a lady of 94 is being given it by her daughter, but hasn't been told she is having it, and it has improved her mental altertness. Great stuff!
A capital T. is a tablespoon. Small t. is a teaspoon.If you want an accurate measurement use a medicine dosage cup or measuring spoons.Silverware is not accurate.GOOD LUCK!
Hi Jill, I have just returned to Australia from the UK and found coconut oil easy to obtain in good Health Food shops. Viridian do a good organic oil that seems cheaper than other brands. I found Holland and Barrett expensive. As a Herbalist I was familiar with the viridian brand. Coconut oil should also replace other oils in cooking, but extra virgin olive oil is good also. I take coconut oil before meals, it is pleasant tasting and has many many health benefits. Hope this helps, Jenni
HI TO YOU ALL I AM RAJ ORIGINALY FROM FIJI RESIDING IN NEW ZEALAND FROM ALMOST 11 YEARS AND AM SUFFEREING FROM PARKINSONS DISEASE FROM PAST 8YEARS I AM CURRENTLY TAKING SINMET CR 100 &25 MG SEMETRYL50G BENZEXHOL AND ATIVAN .NOW I WANT TO TRY COCONUT OIL THIS IS VAASTLY AVAILABLE IN FIJI AND NZ AND ALSO V ERY CHEAP.YOU BUY IN ANY SUPERMARKET IN FIJI AND NZ. THANKS
Tesco sell a 283ml (Groovy Virgin Coconut Oil) jar for £6, and Holland & Barratt sell a 500ml jar (Lucy Bee Virgin Coconut Oil) for £10, it works out at roughly £2 per 100ml either way. Bit pricey, but worth it for the results people are getting. My dad's COPD cough has almost gone since the first time he used it, and I use it on my skin (amazing!), and eat a small amount per day for general health upkeep. Oh, and I tried it on my athlete's foot, and it's almost disappeared!
Do you have a source where coconut oil can be purchased in bulk less expensive than in the stores? Was there any mention of benefits from drinking coconut water or milk? Thanks for sharing your story.
I bought a jar in Holland and Barrett it is expensive but goes a long way . I use it when I sauté or fry . I think you can even make cakes etc with it . Possibly get it somewhere else . If you are a senior can get a card and it is cheaper on Wednesday .
tropicaltraditions.com sells virgin coconut oil in bulk. they also provide a lot of info about the health benefits. another source is vitacost.com which is probably cheaper.
Cheaper does not mean better. I encourage everyone to go to Tropical Traditions web site and explore the research on it, how it is made and the different types from refined to cold pressed virgin oil. As a retired nutrition specialist I know the value ot educating oneself before spending money.
Thank You for the positive response! Quickly: T is tablespoon, My triglycerides were checked as well, no problem. Dr Newport's book is lengthy and packed with information. It would be inappropriate to try to reproduce it in a blog. She does discuss alternative sources of medium length fatty acids. I will provide a followup blog on our (inexpensive) US sources, some recipes, and consumption strategies.
I joined healthy locked.com a few months ago. I am having 2 tablespoon of coconut oil with toast for about four months now and Iam getting better with my speech and movement. I also follow John Pepper's conscious walking and feel the improvement. I was diagnosed withPD in2014. I am wondering why I don't see the latest posts about coconut oil. Merry Christmas!
fwes, are you the Wes who created the form to track PD symptoms before and after starting with coconut in your diet? I would love to have a copy, as my husband is doing so much better and I want to show his neurologist the relationship between steady coconut oil/mct oil in the diet and when he misses a dose. Please, where can I find this form?
are any brands better than an other and which one do you take? I'm willing to try. I take 6 carbodopa/levodopa a day and a Xanax and it seems like they wear off quicker and quicker. Thank you for your info.
my friends involved in essential oil benefits recently told me about this....they buy coconut oil @ the grocery where oils are...Costco carries a bulk pkg in the foods section..better value by far....I am starting this myself...
Thanks for this info., fwes! I have been including coconut oil in my diet for over a year, but rather sparsely. I get organic, unrefined, virgin coconut oil by the jar, the 6 oz. size, for $9.95, here in Eugene, Oregon. I buy it at my local natural foods grocery store, but they do have a website:Hummingbirdwholesale.com.
After your testimonial I will be increasing my consumption now, for sure. Also, if I remember correctly in my early research on it, it is not supposed to raise the bad cholesterols.
if you are is US - I buy coconut oil at Costco - its about $15 for 54 oz - pure unrefined cold presses 100% organic extra virgin - sound good, i think.
So glad others are reaping benefit from cold pressed coconut oil, as I did when I started using it a few years ago. Although I found little advantage in taking more than a teaspoon every fourth day.
Your strategy in eating coconut oil is interesting, but leads me to another question in an effort to take it a step forward if at all possible. My question is this: we know that high fat (in this case coconut oil) is part of the Ketogenic diet, but what would be the effect if you added the low carbohydrate diet element too?
It is known that eating some carbohydrates can cause a negative response within the body, I am thinking those that are refined and some authorities claim that gluten can be toxic to some people.
Great question! I have wondered about this myself. This summer is not a good time for me to try it out (scheduled foreign travel, visiting grandchildren, etc.) There is a vast professional literature reporting on the use by epileptics. A survey of t these professional articles reports:
"The studies indicated that some children report reduction in seizure frequency. The estimated rate for obtaining complete seizure control was 15.6% (95% confidence interval 10.4-20.8%) with 33% (95% confidence interval 24.3-41.8%) reporting greater than 50% reduction in seizures. Adverse events were not frequent; however, 16 cases of death occurring while on the diet were found."
Thank you for your reply to my question fwes. Iunderstand your concern about undertaking the Ketogenic diet, but you are really doing a great percentage of this diet by taking 10 tablespoons of coconut oil every day, which as you know is saturated fat. All that remains is to change over to taking a moderate amount of protein and up to 20 grams of carbohydrate every day. Was it known for certain the reason why the16 died whilst following this diet? There are some authorities who claim that carbohydrates are not essential for our health. There are several books on the Ketogenic diet that I know of, a simple one is by Dr. Eric Westman who has eaten this way for 12 years; another is by Elaine Cantin. Both have videos on Youtube if anyone is interested.
You make good points. I intend to try this myself when I do not anticipate interruptions. Since I am a scientist and risk-adverse, it is my nature to seek professional support from my physician. But I do not anticipate problems.
The 16 who died came from a large pool of possibly some very sick people. It would take considerable effort to determine it the deaths are a significant issue for the Ketogenic diet. I take no position on this other than to lay out all of the facts.
My husband and I have been following a low-carb diet since May 2012 with no adverse affects. I am a type 2 Diabetic and a person with PD. I was on 5 insulin shots per day plus a tablet of Januvia. Even with all that medication I could not control the Diabetes. The Ketogenic diet has improved my health more than any meds I've ever taken. Look up Dr. Mary Vernon on Youtube. She has some excellent lectures about following a low-carb diet. I've lost almost 50 pounds and my husband lost over 50. If we slip up and eat more than 20 grams of carbs in a day, we feel like we've been poisoned. We both get terrible joint pain, sluggishness, headaches.
I've also switched to using almost exclusively coconut oil in cooking. When I don't get enough of it in my system the first thing I notice is it affects my ability to grab the right words out of my brain when trying to communicate. The only milk I use is either coconut milk or almond milk. Same with flour, we use coconut flour or almond flour. I'd like to try to go gluten free also but find it a little more difficult to do. Many of the gluten free products are high carb but we use as little gluten as possible.
What an inspirational post. We need to read more stories like yours. Your results with dropping the diabetes medication is little more than miraculous. However, you mentioned that your husband has PD and I for one would like to know if the Kenogetic diet has had any beneficial effect on his symptoms. Do you think the diet has slowed down the progress of the PD?
The best life style for diabetics is to go vegan. For scientific peer reviewed proof get the book "The China Study" by Colin Campbell. This book could save your life!
I am the one with PD. My husband just follows the diet to help support me. The diet does seem to help with the stiffness and brain fog. Unfortunately I can't say that it has slowed the progression. I just turned 50 last month. I was diagnosed a little over 2 years ago but had symptoms for 10+ years. I take Sinemet 6 times a day along with Cymbalta once a day for depression/anxiety and pain.
On days that I mess up and have any extra carbs, I've noticed my "off" times are worse that night and the next day as well as I walk slower/shuffle more. Another plus is that it doesn't hurt as bad when you fall if you have 50 less pounds landing on the floor. Easier on my husband too when he has to help me up
I do feel the diet has a good overall effect on general health which can't hurt those of us with Parkinson's. Not having to give myself injections with my Parky Paw has been the biggest benefit.
May I ask, how many grams of carbohydrate are you limited to on Dr. Vernon's regime per day? Also, I understand that you must eat at least moderate amounts of protein each day and we know that it is important not to eat protein too close to taking Parkinson's medication as it can interfere with absorption of the medication. With your experience, is this LCD diet a problem?
Just reading your experience using coconut oil has again raised another question with me. May I ask if taking the oil has altered the type and dosage of Parkinson's medication you take?
Also, do you have to take care with the timings of taking the coconut oil and medications? I am thinking that if taken together the oil could interfere with the digestive system absorbing the medications.
I've been on coconut oil for two months now @ 8 tbs per day. My family GP hadn't seen me for 2 years and he was stunned with my appearance and said he could not see any progression of PD. My blood work is outstanding, the best in my entire life and off the charts in the right way. I'm been seeing a significant decrease in resting tremor, but any type of stress still brings my tremor out big time. No medication change in 2 years. Balance has improved. I'm looking at a couple of years before I come to any conclusions, after all it took me ~ 20 years to get where I am today (diagnosed 13 years ago)
I understand Norton is no longer using coconut oil. But many others, including myself are continuing on with the non-clinical trial.
You should take your time and really study the information.here. There are many challenges, but the potential payoff is huge. I have a huge tremor, but CO makes it go away, sometimes completely. I suspect it will take a few years of CO usage to reach it's maximum potential.
Taking 8 tbs CO daily is very challenging. Fortunately I like the taste of CO. I started at 1 TBS with each meal and eventually was taking 1 TBS every hour. Your intestinal tract will get upset if you take too much, too fast.
Since that time I am on a ketogenic diet and take 4 TBS CO daily spread out @ 8am, 12pm, 4pm, 8pm. In addition I take 1 TBS C-8 MCT oil along with each TBS of CO. The MCT oil produces more ketones than CO, but CO has very powerful oils like Lauric Acid, that are not found in C-8 MCT oil.
Yes I believe that virgin cold pressed CO, with a minimum of processing is what you should use. Expelled is optimum but is very pricey.
I hope that you're talking to me, as the post I made was 3 years ago.
While I am certainly not cured, the ketogenic diet seems to have slowed the progression way down. I haven't had a change in medication since 2009 (diagnosed in 2000), which is amazing to me since my neurologist was suggesting brain surgery as the only way to control my tremor. My tremor has calmed way down to the point where it is gone for most of the day now, but stress will bring it out. What I have achieved is that I don't shake at my neurologist's office any longer. I achieve this by taking ketone salts, which give an extra boost to my ketones levels in my blood for several hours. My neurologist is very skeptical and simply says I don't see her throughout the rest of the day, which is true. She does acknowledge that my tremor has decreased over the past few years. The action of the ketone salts in stopping the tremor and improving my walking gait is undeniable. I am constantly making adjustments to my diet plan to elevate my ketones, and now only require ketone salts under stressful conditions. Consumption of protein is very tricky for me, I have to avoid taking too much, but I must take sufficient protein to repair my body. Too much protein in a day will bring my symptoms back and my blood ketones decrease significantly.
So my conclusion is that elevating ketones in my blood slows the progression and decreases the symptoms, and I will therefore continue the course.
Take it easy with the dosage at first, coconut oil can be a laxative for some people. My blood work results were miraculous and has cemented coconut oil into my life forever, regardless of how it works on Parkinson's disease symptoms. Some early signs of improvement will be no more mind fog, and improved eyesight. My grey hair is even growing in with it's natural hair color. My wife tells me I've lost the frozen Parkinson's face, which is probably what my GP saw.
Remember this is a life long commitment you are about to begin, not a quick fix.
Thank you again Satwar. It is other people's experiences that gives you confidence when you try something new to yourself. For instance, I would never have thought to take 8 tablespoons of coconut oil, more like 2 a day, but as Fwes reported the beneficial effect wears off after a few hours during the day time, so it needs topping up. May I ask you one more question please? What time do you take your last dose, as I do not want an energy boost when I am ready for bed?
I spread it across the entire day: 2 tbs breakfast, 2 tbs lunch, 2 tbs dinner, 2 tbs before bed. I'm thinking about trying more frequent 1 tbs dosage instead. I don't like the feeling when it wears off.
I am interested in the reversal of greying. I had the same experience over five years ago. I started greying and reduced from a lower carb diet to very low and reversed the greying. When I tell or post about this it is generally met with skepticism and derision--people want their sugar.
My understanding is that ketones enhance and multiply mitochondria so cells have more energy for functional operation. Hair cells thus have more energy to sustain pigmentation. I find that sometimes after being in the sun, a lot of my chest hairs will grey, but then a couple of days of very low carb and the normal pigment returns. The same hairs, but they de-grey.
Yes I am experiencing this also, but have been reluctant to say anything because I don't understand how it can be possible. Glad to hear someone else has experienced this.
I remember asking my neurologist why the temple hair is the first to grey and he said he didn't know. I laugh to myself every time I see a new colored hair growing in the temple area.
Hi Satwar & Lacchus - I'll be very interested in seeing if CO will put the colour back in my hair. I am quite lazy & have not been consistant with my CO use - but it has helped with my not being so PD constipated - which is good. My daughter bought me 3 tubs of virgin pressed CO for a birthday present so no excuse now for not taking it reguarly - & I will keep a jar in the kitchen also - for using in cooking - although I do think this an extravagant way of using it. (we get our CO from Amazon - I'll post later the name of the make & price)
I am on the Ketonetic way of eating (low carbs, high fat & protein) for about 4 to 6 months (not always sticking to it) I will finish this post later as I feeling a bit crocked out now - my shoulders hurting - gone all tensed up - whikes....
Great to hear about the success! I have been able to drop my dose to 5 tbls/day.
Tried to cut back (from 8) to minimize slight indigestion. My GP is ecstatic. He has suggested it to 6 other PD and Alz. patients. Similar comment about my frozen face.
Dr. Mary Newport, who has done so much to push this for PD is sort of a clearing house for PD reports:
"Dear Wes,
Sorry I am behind on emails.
This is a very exciting report you have shared with me. I am so pleased to hear that this has helped you so much. You are the nineteenth person with Parkinson's to report improvement to me. I am going to pass this on to Dr. Theodore VanItallie who researches ketones and Parkinson's. He will be most interested!
Best wishes and continued progress to you!
Dr. Mary Newport"
IT IS IMPORTANT THAT WE HAVE AN ACCURATE COUNT. SHE HAS USED HER COUNT FOR ALZ PATIENTS TO GET THE FIRST CLINICAL TRIALS FOR COCONUT OIL FOR ALZ!
PLEASE REPORT YOUR SUCCESS TO HER ketones08@aol.com
Thank you too Fwes for updating me/us on your progress with the CO. It is an amazing medicinal food that may become part of the standard treatment for those with PD who have mobility symptoms. I just wonder if it will delay the progress of the disease?
I am into my 4th month, still getting good results from CO and trying to establish a procedure for long-term use. I have considered asking to adjust meds, but have decided to wait and see how I'm doing this fall. Will keep you posted.
Thank you Fwes. It has occurred to me, when reading the improvements in your life after starting the coconut oil, that they are probably greater than those you get from many allopathic medications. Some people believe that Parkinson's is more than just a dopamine deficiency disease and from where I am standing the evidence from yours and Satwar's experiences tend to confirm that hypothesis. I am sure that several PwP will follow your progress, meanwhile I have finished my first jar of the oil found a definate improvement in my walking; that is only on X2 tablespoons in the morning, but will increase the dose as I get to acquire the taste.
welcome to our little lab, nice to have another rat!
I have been reading the first ten comments to "GABAPENTIN for nerve pain?"
I am impressed that there are significant differences. Is it different physiology or a different disease? In other blogs I have encountered speculation that there are several different diseases, which masquerade under the heading "Parkinson's disease".
For whatever reason there are differences.
It is important that we find treatment options that serve a significant part of our community. I want to emphasize "part". If some significant group gets benefits from coconut oil, then that is a group of people who share a common fortunate trait, and that situation deserves to be recognized and encouraged. If another significant group discovers that after an honest trial, they received negligible benefits, then that situation also needs to be documented. So far, I can find no evidence that those who are paid to investigate treatment options for PD have taken up investigations of benefits of coconut oil for PWP. I intend to use this forum to collect evidence that is less than fully scientific, but which is compelling enough that it will encourage professional investigators to take up the cause. For that to happen, we probably need identifiable honest trials by at least 20-30 people who are willing to impose some discipline on their approach, who will apply this discipline over a period of time that is at least a few weeks, and who will share their results (positive or negative). The easiest way to identify these results is to have them reported in identifiable single source. I shall initiate a new blog "coconut oil lab rats" which will seek to collect results from individuals who have agreed to follow simple procedures. I will tabulate the results and report them on a regular basis, and when we have some sort of solid evidence, I will pass the report forward to Dr. Mary Newport.
So far I know of three potential "lab rats" (fwes, satwar, norton) . Others have indicated that they are going to give it a try, and perhaps they are waiting for some time to pass before they report.
It it will make tabulation easier for me and reduce errors if the results are all reported in one place. That is why I am establishing a special blog: Coconut Oil Lab Rats.
Even if you have made a report elsewhere, please repeat the report in that blog.
The rules for participation will be stated at the beginning of that blog. We are trying to make this as scientific as possible so that others will follow our lead. The content is to be rigorous but not onerous. For a limited time we will be open to suggestions for adjustments to the rules. When we start tabulating results, there will be value having everyone following similar procedures.
Of course navyrat is welcome. it will be interesting to compare coconut oil with the full ketogenic diet. I don't think his cancer will matter unless he goes on chemo. What is your status, KD vs CO?
My status is that I am gravitating towards a Ketogenic diet and have been doing so about one week. I have been taking the CO only a few days and then only 2 tablespoons a day except for yesterday when I took four. I may limit it to 4 a day as I don't care for the taste. Would that be OK?
Thank you for your your questions and compilation of data. I should say that my eyes began to glaze over when you mentioned Excel. There are two reasons for this: 1. I use only an apple iPad. 2. I barely am better than computer illiterate so I need things to be simple if I am to participate. I find that I need things like how to do it spelled out. Sorry, for this Inauspicious start!
Hi fwes-Damn good work you are doing. I will input as much as I can, good or bad but like Norton Excel is not in my vocabulary, sorry but am willing to learn. As you know, I am on a hyper-Kdiet and I consider Coconut oil an essential part of my success to date. I will never go back to the western diet. The improvement to my health over all has been astounding and even though I was concentrating on cancer issues my PD is the true beneficiary to my changes. I have been reluctant to express my new found health as I think everyone would dismiss me as a lunatic but after reading up on your blog I see that a lot of other people are seeing the results from CO that I have seen. It is hard to distinguish whether it is Kdiet or CO or in combination that is working for me. I am starving my cancer to death, I am almost to the point where I am going to stop sinemet and use MP, and most importantly my mental attitude has changed from negative to positive and only good things can come from that. One other thing I would like to add to your readers. Practice deep breathing in conjunction with CO use. Everyone needs to oxygenate their blood more to get the full benefits from dietary change. It is easy and plenty of info on the internet as to how to do it. Lets all enjoy our new found health and show the Docs there is another way to treat PD!!
What about filling in data at the end of the line in a text file template and pasting it into a comment or a message (for privacy)
Communications methodology is important -- it has to work and be easy!
How do you feel about the template below? It is the best that I can think of within the limitations of this Comment & Message capability.
I can make real forms for you to fill out, they would be easy and foolproof, but they would require that we use regular email to send them back and forth. Thoughts?
Content is also important. What about the other ISSUES?
Good work you're doing. My only comment is that monthly data is perhaps too often. Maybe every 3-6 month is more realistic. For example: In the last month, I have experienced a breakout of my hand tremor, and I can't see my neurologist for another week. It takes a while to get the dust to settle. Coconut oil worked quickly on my blood work but works slowly on my PD..
Before I started coconut oil my triglyceride level was 2.74. I am taking 8 tbs per day of coconut oil and my triglycerides are now 0.63. My Total Cholesterol / HDL ratio dropped from 5.0 to 3.0.
Sorry, but I like the taste so much that I eat it right out of the jar. Some people make what is referred to as bullet-proof coffee, made by high speed blending 2 TBS butter + 2 TBS CO in a cup of coffee
You can hide it in smoothies, Cook with it, put it in soups, sauces, baked goods.. It is good in hot chocolate.. I add it to everything.. You don't have to eat it all in one thing.
I usually suggest organic and cold pressed, as good words to look for on the label.
I personally use MCT oil now, it is liquid all the time. I chose to use MCT oil because of the potential increased production of ketones. I also have been on a kitogenic diet for the past few years, which raises ketone levels far higher than just using coconut oil alone.
I usually suggest organic and cold pressed, as good words to look for on the label.
I personally use MCT oil now, it is liquid all the time. I chose to use MCT oil because of the potential increased production of ketones. I also have been on a kitogenic diet for the past few years, which raises ketone levels far higher than just using coconut oil alone
Yes I'm on Mirapex and Levocarb. Since I started taking coconut oil and eating a ketogenic diet, I have not needed to increase my dosage of prescription drugs. It's been about 6 years since I've increased my medication.
I would not say that coconut oil taken on top of hot tea or coffee is hardly noticible. I think it is horrid. I wish there were a palatable way of taking it. Also there are a lot of calories in it and no matter what you say, if you eat too many calories, you gain weight Eight tablespoonsful of coconut oil is about 1,000 calories. I can eat only about 1200 calories a day without starting to gain weight.. If it is applied externally, does any benefit get through transdermally?
I just spent a little over two weeks in Germany, and I carried two cases of Fuel for Thought and 2 quarts of pure coconut oil. For the first 2 to 8 days mostly on the plane I use the fuel for thought. The company told me that one vial was equivalent to 2 tablespoons of coconut oil. It was convenient to take and I was taking 4 to 5 files per day, attempting to mimic my 8 tablespoons of coconut oil. By the end of the second day I was crashing quite badly. Having arrived at my hotel I opened the real coconut oil and began to take it at my usual pace. Within a few hours I had a marketed improvement. Fuel for thought is very convenient, and is made by extremely reputable people. Unfortunately for me, it did not have the same benefits as coconut oil in my one brief trial.
This may be a bit of a sacrilege, but it is useful. For my return trip I melted some coconut oil and poured it into the fuel for thought vials. Of course the coconut oil gets firm even in a moderately heated room or airplane. I found that if I set it in a half a cup of warm water for a minute or two it would melt and easily pour out of the vial. By this process I had what I needed: coconut oil they could carry on an airplane. One vial actually holds nearly 3 tablespoons, but I did not fill them to the top thereby preventing a mess.
Interesting report on Fuel For Thought. The research scientists are using this product in clinical trials for Allzheimer's @ USF. Presumably a mixture of MCT oil and coconut oil with improved taste.
I agree with you that melted oil on top of coffee or tea is less than fully appetizing. When that is the only option I slurped the oil off the top and then enjoy the coffee beneath. Slightly disagreeable, but for me not nearly as disagreeable as dragging around with returning pain.
When I have a choice I drink my coconut oil with coffee by the following process:
1. Put 1 cup nonfat milk and 2 tablespoons coconut oil in a pitcher and heat itto just below boiling in the microwave.
2. Pour the hot milk mixture and appropriate amount of instant coffee into the cup of a mini blender and mix it until it is quite frothy.
3. Enjoy your "latte"
Adding the oil to the skim milk and blending it to a homogenized state is rather like using whole milk or perhaps light cream in the coffee. My wife and I find it very pleasant.
Someone has asked me where to find a mini blender. In the US they are everywhere made by several manufacturers. I looked at the Galleria in Germany and found one made by Phillips. There are also a few manufacturers that sell what they call a stand blender or stand mixer. They are slightly larger than a mini blender. Everything I saw was priced in the range of €40-€50.
I'm coming up on 6 months @ 12 TBS daily and find that improvements are coming slower. The easy gains seem to be achieved early and the heavy lifting has started. I haven't lost any benefits, but new improvements come slower. My first symptom was my right hand tremor,so it makes sense that it would be the last to go. When relaxed I have no tremor, but stress brings it out.
Is this what you are talking about or are you saying you've lost some of your gains ?
In 2009 my left leg became very stiff and I began to limp. At first I thought it was pressure on my spine. That was ruled out by an MRI. My specialist diagnosed me as having Parkinson's. I do not have tremor just extreme stiffness and pulling on my left leg only. I began the gold standard of three levodopa/carbidopa per day and selegiline twice daily approximately three years ago. It was absolutely amazing and everything was perfect. Now I have "wearing off periods" before the next pill and my foot becomes like a claw, pulls on my calf and I cannot walk for a bit and must sit it out no matter where I am. My doctor suggested adding one more Levo/carbid daily, but this has not helped.
I was looking for something natural that may help the symptoms. I was very interested in fwes' results. I am feeling weaker than four years ago. I exercise one hour, plus do weights three to four times a week.
I will do further research on coconut oil. I am willing to try a couple of TBS per day. I really don't know if I could take 12.
Did you begin with 12 TBS right from the beginning?
I am dictating this with the Dragon, and sometimes it makes funny slogans out of my words. If I fail to get something blame it on the Dragon I'm quite sober. I sent you a lengthy response yesterday but apparently it got lost in the ether. The long and the short of it is I am in Germany right now and a little out of touch.
Thanks so much to satwar for his responses. He and I are on very similar diets and agree so much about so many things that it's a little scary. We are not twins!
I'm not quite sure how you found this old post, good detective work! If you look at my profile and dig around a bit you'll find a list of several posts on coconut oil. I point them out only partially because I think my words are brilliant. Actually not. what is brilliant is all of the thoughts and ideas that are shared by the many responders. There is a lot of value in the wisdom of the community. One of the things on my to do list is to assemble all that material in a coherent form on my webpage. tending-the-iris.us/
So far there is just one page devoted to anecdotes about coconut oil and another page which we are holding private, for people that want to participate in our "non-clinical" coconut oil trials. Dr. Mary Newport is the instigator of a lot of this she has successfully created funding for a clinical trial at the University of Southern Florida neurological center (coconut oil for moderately impacted Alzheimer's patients). This is the first formal trial with coconut oil for anything other than getting blasted as a saturated fat. Our hope is that it the Alzheimer's trial is successful and we collected enough data to show that there is benefit for Parkinson's that just maybe some funding for a clinical trial on coconut oil for Parkinson'.s. YOU ARE INVITED!
I personally started with 2 tablespoons and have now worked up to eight sometimes 10.. My ritual is 2 tablespoons with each meal and two before I go to sleep. I find I can sleep much better with the evening dose. Don't go too fast on this stuff. It can cause a little stomach distress. For me the pure (no flavor) is a little kinder to my system than the organic. I use LouAna, $6 per quart at Walmart.
Absolutely not, I worked up to 12 TBS from 3 TBS daily over a period of 4 months. CO is a laxative and can cause intestinal distress. From my experience CO will ease the symptoms, but the optimal effect wears off after a few hours. I am constantly hunting for the best dosage frequency, but two hours seems to be working well right now to keep my tremor away. I am meeting calorie challenges @ 12 TBS, but am still losing weight. You really must watch your carbohydrate input. I eat a lot of complex carbohydrates in the form of kale, broccoli, red cabbage etc.
This therapy is a life time commitment. I believe a target of 6-8 TBS daily is a good battle plan, and then see what it can do for you.
Thank you Satwar for your response and good advice. I really do appreciate your help!
Could someone please tell me which coconut oil they are taking, so we can try it, and that I can obtain in the UK as my other half is keen to give it a go, as his syptoms with parkinsons are changing, drooping eyelids, pins & needles, tremor moving etc thank you
I recently tried coconut oil to help regain my sense of smell but had terrible abdominal cramps and had to quit. Dosage was 1 ounce. Anyone else with this experience? Did coconut oil help you? Would it have the same effects if I took it in capsule form? Where could I get this?
I am having trouble getting my replies to stick on the page. So I will try again and perhaps you will get multiple replies from better than none.
By the numbers: 1 ounce = 2 tablespoons = 32 g = 32,000 mg. One equal 1 g equal 1000 mg. To get at the high dosage levels we find successful you would need to eat a lot of capsules. If digestion is a problem, it is probably the oil and if you eat enough capsules to get the oil you need then you will have the same problems.
A better approach is to follow the guidance of Dr. Mary Newport (a review of her comments can be found on my website tending-the-iris.us/ ) briefly start with 1 teaspoon per day.
Fwes , Do you have to do the kentogenic diet in order to take coconut oil? How many calories are in a tablespoon of CO. I am also taking MP. (Mucuna P.) Has anyone tried the two together ?
I know of no one that I am interacting with in the Coconut Oil discussion who is on a strict ketogenic diet. If you check out my most recent blog, you'll find that I am taking 8 tablespoons which is about 960 cal at 120 cal per tablespoon. This is not as bad as it sounds since your body cannot store medium chain triglycerides as body fat. However as we have discussed in other posts, your body may use the ketones for energy and then store some surplus carbs as body fat. So most of us that are on the higher levels of Coconut Oil are cautious about how many carbs we ingest, and we really stay away from those with high glycemic index.. I have several comments on this elsewhere in this blog and in my more recent discussions. Another good source is satwar who posts frequently here.
Regarding the Mucuna P., I have no direct experience. I do know that many people using Coconut Oil are also taking some levodopa as one of their meds, and are having no complications. For me I usually take my Coconut Oil in a latte, and with the high milk (protein) content I separate the ingest by at least a half an hour. A typical scenario is pill, wait a half an hour, Coconut Oil latte, wait fifteen minutes or so, and then eat a light meal. Consuming the latte a bit before the meal tends to numb my appetite. That is a big factor in weight control.
Dr. Mary Newport who is a leading MD in the push for more Coconut Oil therapy has written several good articles on the use of Coconut Oil dietetic concerns etc. I give some of her work on my other website, and references to places where you can find more for stuff:
tending-the-iris.us
Thanks for the contact, we would love to have you join our lively discussion.
I recall user Norton posted he was on a ketogenic diet while taking CO and things did not go well. You may want to contact him directly.
I myself was on a reduced carbohydrate diet (50-60 g) and lost 25 lbs, but I found I kept having to cut more and more carbs to maintain weight loss until I started crashing between meals. Crashing with PD is not pretty. I added high quality carbs back into my diet and I have not gained any weight. I am back on track with very reduced or no Parkinson's tremor for most of my day. I take 10 TBS CO daily. Before CO I was barely able to feed myself because of my tremor.
Fwes, are you still taking conventional meds? What are taking? How are u sleeping, do you have any problems? Can your turn in bed better than you could before? Thank for all your responses.
I am taking Sinemet,Mirapex, and Azilect, all at minimum dose for 2 years before I started the coconut oil. Will see my neurologist next week and will discuss the continuation of meds with him. From what I have read it is dangerous to go off of the Parkinson's meds without a doctor's supervision. I am being very cautious in this.
My greatest concern is long-term effects from levodopa. It has provided significant improvements for many people and yet has the most broadly documented downside. I am especially interested in what the potential is to remove it from my cocktail.
Sleeping: I sleep well and turn over easily on a firm mattress since i started taking CO just before bed. I have a lot of trouble on a soft m mattress.
Hi Drevy. I feel sure that the inability to turn in bed is more to do with poor muscle tone than the brain's inability to send the messages to the core muscles. Do you do any exercises to strengthen your core muscles? John
Congratulations on your success! I am curious if, during the initial months of your coconut oil intake, did you continue with your doctor recommended meds for Parkinsons, or did you stop?
I was taking a minimum dose before I started the coconut oil. See my neurologist in a few weeks and will discuss the continuation of meds with him. From what I have read it is dangerous to go off of the Parkinson's meds without a doctor's supervision. I am being very cautious in this.
By the way, I have seen a vast improvement in my quality of life but in no way am I "cured". I still have some Parkinson's issues in the coconut oil did not change that. Most people who have tremor find the coconut oil has no influence on the tremor. I'm developing a tendency to drool, which has gotten slightly worse over the last several months. My balance remains really improved, together with agility and quickness. I must accept the fact that I have Parkinson's and I will live with it for the rest of my life. But with coconut oil I don't have to be miserable.
Have you tried using cannabis oil extract, or specifically oil from the cannabidiol (CBD) compound found in cannabis? Research some on CBDs or visit the CBDProject website.
As you know I have reported making gains with tremor (sometimes a full body, locked jaw tremor) while at 6 TBS per day. I have since upped my dosage to 10-12 TBS for a long term treatment. Unfortunately I am having weight control problems and may have to cut back on the CO. I was also starting to crash before meal times and had to introduce carbohydrate snacks.
My tremor is very sensitive to stress, it can be from lack of food, lack of sleep, exercise, speaking with non-family, emotions etc. I'm hoping I can address the snack food timing to address day time tremor problems. My tremor has hugely improved but I'm trying to do better. Another interesting observation is that after supper I generally have few if any tremors, which are easily eliminated by taking CO or snack. Probably because I'm more relaxed and gearing up for bed.
CO has greatly improved the quality of my life, and I feel like a human being again. But it takes a lot of trial and error to optimize the treatment.
We are in this together, and sometimes it is a bit of a struggle. My tremor is less, but certainly heightened by stress. At eight T per day I found no reduction in the tremor. I am gingerly trying ten T per day. 1200 additional calories, oh my! Weight gain is a serious complication and I have two hopes:
1. Carb restriction will provide less opportunity for my body to store fat
(I am trying to avoid going to a full ketogenic diet, but the jury is out)
2. Taking my Coconut Oil dose, usually in a latte, about one half hour before a meal should reduce my need for food at the meal. However, I usually eat with others who are inclined to eat a full meal, and I find that in the social situation I remain at the table and end up consuming food beyond what I need to curb my hunger. Still working on this.
Like you I find the benefits in reducing my Parkinson's symptoms to be so important that I am unwilling to give up the Coconut Oil. Finding a life-style adjustment to balance all of this is an important issue. Let's continue to share what we learn.
I've tried to find alternatives to carbs for dealing with hunger emergencies. Some that work for me are the Mary Newport chocolate-Coconut Oil cubes, cheese and sliced apple, peanut butter and celery. And for me the coffee latte does a pretty good job. In the evening when I'm getting ready to go to sleep I make a warm milk and Coconut Oil frothy with a little vanilla. It tastes good and the warm milk usually knocks me out. By the way, I use skim milk and let the Coconut Oil provide the filler to restore it to something like whole milk.
Please continue to share with you learn, we are all interested.
I'm in the freaky position of my tremor actually stopping, but I'm still trying to figure out what levers to pull to consistently reproduce it and still maintain
long term weight control.
I believe time may be required, rather than simply dosage to resolve the tremor issue to the maximum extent. It may take years to complete the heavy lifting. This seems reasonable since it took the disease 23 years to get where I am today.
Update: I started adding some high quality carbohydrate (sweet potatoe) to each meal and mid morning & mid afternoon carbohydrate snacks and I'm back on track with a very suppressed tremor, it even stops completely.
Surprisingly I have only gained 1 pound, which makes me very happy.
I'm seriously beginning to wonder if it is smart to be reducing carbohydrates to nil and persue a ketogenic diet when you have Parkinson's. I found the stress induced by a low carb diet to cause unacceptable flare up of Parkinson's symptoms. Then again I have a very pronounced tremor (without coconut oil) while others with lesser tremor may be able to tolerate a flare up better than I can.
may have been taken too literally. I include carbohydrates in my diet, and do not advocate a ketogenic diet except for those who are operating with medical advice & medical supervision. In my diet I receive carbohydrates from skim milk, green leafy vegetables, beans, and a limited amount of whole-grain. I spurn foods with a high glycemic index: sugar, white starches, almost anything with corn or corn products, and concentrated fruit juice.
satwar, you and I continue to follow the same path with just a little communication through this blog and that after the fact. It's Scary! Last week I started some special recipes with sweet potatoes. Let me share one that we found to be very rewarding:
Sweet potato chips
- slice a sweet potato very thin 1/32 to 1/16 inch, on a mandolin slicer.
- Heat enough Coconut Oil to cover a frying pan 1/4 inch the over moderate heat
- when the oil is hot, distribute the slices thinly and cook until they have turned- yellowish with perhaps a little browning
- remove the cooked slices allowing the Coconut Oil to drip off and allow to cool on paper towels
- sprinkle lightly with sea salt and a little paprika,
Tastes wonderful, provides low glycemic index carbohydrate, and a dash of Coconut Oil to boot. We use organic Coconut Oil for this, adds a little special flavor. Pealing the sweet potato is optional.
I've lost 25 lbs over the past year, in spite of consuming significant amounts (6-12 TBS) of CO daily. I did this by restricting carbs, but was puzzled by the come and go of my tremor. I had lost enough weight that I was willing to experiment with my carb input. Nothing was directed toward any of your statements, just sharing my thoughts.
Hi fwes. Drooling is the result of not swallowing often enough. In a healthy person, the mouth is regularly cleared of saliva, but with us Parkies, that no longer happens. There are two things we can do about it: First of all, hold your chin level with the ground, so that the saliva does not run down out of your mouth; Second, try to consciously swallow regularly, when you feel the saliva collecting in your mouth. There is another problem associated with this excess saliva: When you tip your head backwards, the saliva tends to run down into your windpipe, causing you to choke, and that is no 'joking' matter! Don't give up on yourself; it is very therapeutic to get one-up on some of these problems.
As I tell my wife, when I find something that works for me I stick with it, that's a good trait in a husband!
I am not a chemist so I cannot say what the content of the other oils is.. What Dr. Newport has discovered is that medium chain triglycerides have the property that the liver converts them to ketones that can quickly nourish the brain. Most saturated fats are long chain triglycerides, which do not have the beneficial property and which can cause high cholesterol. Coconut oil has 55% medium chain triglycerides as far as I know it is the highest concentrated source in nature. You can actually get a little bit, 5%, from cows milk. But you would have to drink eleven times the amount of cows milk as coconut oil to get the same level of medium chain triglycerides. Another factor is that coconut oil is a widely available commercial product, and generally at a lower price than the other oils you have mentioned. I consume about a quart week. Many of the nut oils cost as much as twenty or thirty dollars a quart, which compares unfavorably with the six dollars per quart I pay for pure coconut oil at Walmart.
So there are several factors. No one is claimed that this is the optimal solution, only that it is a solution that many have found beneficial. Hope this helps.
Some other virgin oils have also been reported to be useful for lowering Alzheimer’s pathology in animal models. These include extra virgin olive oil and virgin grapeseed oil, both of which are high in polyphenol content as well. So, one benefit of coconut oil in Alzheimer’s could derive from polyphenols acting as antioxidants.
The second possible way coconut oil could be useful for Alzheimer’s is based on the high levels of “ketone bodies” in the oil. Coconut oil produces ketone bodies when the fats in the oil are digested by the body. Ketone bodies serve to provide dearly needed “fuel” and energy to the brain when glucose levels are low, as in the case of Alzheimer’s patients. When brain glucose levels are low, the brain breaks down fats to produce ketone bodies as an alternate source of energy. This energy is needed for nerve cell survival and for synaptic activity that underlies learning and memory. Virgin coconut oil contains the fats that can be converted into ketone bodies, which can serve as an alternate energy source for the brain. The ketone bodies could potentially provide energy to nerve cells and synapses in the glucose-deprived brains of Alzheimer’s patients.
Hi, eating coconut oil doesn't have to be a chore/medicinal. Here is a lovely recipe to get you started, as an added benefit raw cocao powder has huge health benefits of it's own.
Coconut oil Chocolate, put 1 cup coconut oil in a bowl and set it in a pan of hot water, once it has melted add 1 cup raw cocao, 2Tbsp sweetener(I've successfully used organic maple flakes, crystalized honey, xylitol and coconut palm sugar), and optional is up to 3 cups of add-ins(such as nuts, brown rice krispie, coconut, dried fruit etc.). Mix well and pour into a wax paper lined pan or cookie sheet(I use 9x13 pan) and put in fridge to set. Once set break up into pieces and store in the fridge. You can totally experiment with proportions and add ins. I also like to sprinkle litely with pink himilayen salt. Ps. I'm a nurse and have had several patients who have been quite successful with coconut oil and even though I don't have specific health problems I regular eat this chocolate.
Nice recipe. I used something similar that I got from Mary Newport's book. Two comments:
1. I poured into ice cube trays so that the 1 cup of Coconut Oil is distributed into sixteen cubes, which means I have 1 tablespoon of Coconut Oil in each serving. One of the problems of getting your Coconut Oil through food is that you have to find a way to measure that does the you are taking.
2. I often use a mixture 1 cup Coconut Oil, 1/3 cup peanut butter (organic), 2/3 cup chocolate chips (as little sugar as possible). One reason for this mixture is that it tastes good and another is that the peanut butter softens the cubes so that they are more chewable right out of the refrigerator.
I was taking a minimum dose before I started the coconut oil. See my neurologist in a few weeks and will discuss the continuation of meds with him. From what I have read it is dangerous to go off of the Parkinson's meds without a doctor's supervision. I am being very cautious in this.
My greatest concern is long-term effects from levodopa. It has provided significant improvements for many people and yet has the most broadly documented downside. I am especially interested in what the potential is to remove it from my cocktail.
By the way, I have seen a vast improvement in my quality of life but in no way am I "cured". I still have some Parkinson's issues in the coconut oil did not change that. Most people who have tremor find the coconut oil has no influence on the tremor. I'm developing a tendency to drool, which has gotten slightly worse over the last several months. My balance remains really improved, together with agility and quickness. I must accept the fact that I have Parkinson's and I will live with it for the rest of my life. But with coconut oil I don't have to be miserable.
Hers is a different kind of approach and I found her information to be fresh and logical. It was a reminder to me that the mind and the body are not separate. I learned long ago that fear was a huge component in illness. When I developed PD I somehow had forgotten it. She does discuss weaning off meds and says it is challenging and not without risk but certainly possible.
I have started a support group for people with PD (myself included) on Meetup called PD Explorers: adventures into the CURE working with the information on her site. I will be creating a blog to work as a clearinghouse for information on alternative treatments and results. It will include info from both patients (and we are indeed patient for enduring this challenge) and service providers. Contributions of personal experiences are welcome.
I think our mistake is to believe the medical community about PD being incurable. They don't really understand what it is and research changes what's "true" all the time. Just because they can't cure it doesn't mean it is incurable.
My symptoms started in 2009. I denied that they were PD until June of this year and managed them with diet, chiropractic and herbs but when I dropped my vigilance in applying these they did progress. I have not taken meds other than supplements, NAC at 1800mg in the morning and 1800mg at night, briefly, which was helpful in restoring energy. I also have seen a "functional neurologist" to work with retraining the brain. I had a completely frozen shoulder, (for the second time, the first, in 2012, was relieved by rolfing) and horrific pain starting in May of 2013, which is now nearly normal in range of motion and pain free. I believe this is due to my decision to "cure" myself and was aided by the work with the functional neurologist and a chiropractor that did straight chiropractic using specific adjustments and shoulder rotation rather than the "crack it all" technique.
Your experiences, and those of others with coconut oil, acupuncture, energy work, retraining the brain, etc., tell me the case is not closed on "curability." We are still learning. I think if we keep exploring we will find the cure.
Hi Laura. Pd is, at this moment, not curable. However, there appear to be many ways of reversing the progression of Pd. I for one have experienced a tremendous tunaround with my Pd. I know there are many Pd patients out there who do not believe what I am telling everybody, but that does not make it untrue. I was diagnosed with Pd in 1992. Since then I have been able to reverse it to the stage where I no longer need any Pd medication at all for the past ten years. I know this is not popular with doctors and the pharmaceutical industry but it works for me. The big difference between my history and that of most others is that at the time of diagnosis, I had been doing serious exercise, on a regular basis for the previous 22 years. What was more important is that my neurologist only prescribed selegiline, and no other meds. After ten years of that medication and regular, three times a week, walking for one hour at a brisk rate, I was able to walk properly again, do up my shirt buttons and had no more movement problems, other than still being fairly rigid. If you would like to read more about it, then go to reverseparkinsons.net. Good luck! John
Hi Laura. I would be delighted to be interviewed by you. However, over two years ago, a well-known scientist came from another country to investigate my Pd history. He writes books on such subjects. I have given him an undertaking that I will not go international with my story until his book has been published. He has given me the date next year, when his book will come out. Knowing this, if you want to interview me and your blog will not cause him any problems, then I am very keen to talk to you. Thanks for the information on this website.
The intention of my blog is to be a clearinghouse for stories from people with PD regarding their experience with alternative treatments, good and bad. I would like it to function as a support group also. We as a group could explore new treatments together.
There will be interviews from alternative health care providers also.
It is not a project to publish. I don't think that would step on the author's toes.
Let me know if that is something you feel comfortable with.
Have you looked at pdrecovery.org/. It is worth reading and investigating. If you give me your email address I will put you on my mailing list. You can get my email address from my website: reverseparkinsons.net. What about your planned interview?
Hi Laura. Yes I read your blog and respond to everything. I did not check to see who gave me that website. I must get some system for doing that. I think you live in the States. I live n South Africa and we are 6 hours ahead of New York, I think. I will be at home on Wednesday . How does this work? Do you phone me or Skype me?
hello everyone, I'm new to your blog. I have had PD for about 10 yrs...just got on meds the last 3/4 yrs...I take ldopa/cdopa 6 1/2 per day & Amantadine 3 X per day & 1 Comtan....I had started using coconut oil on a health wim awhile ago but when I read your blog and saw it was been tried for PD I'm all for it... I haven't been measuring it out, which I now will. I've just been using it to replace margarine or adding to give flavor. I "butter" my toast with it and add it to oatmeal as well. I've been buying Dr. Bronner's Magic "all-one" fresh pressed virgin coconut oil and really like it. Once I space out the amounts during the day, I'll keep more of a log to review.
Welcome, you've found the right place. Wes has managed to create a very informative site and there are quite a few people here who can help you along.. It is a path not without challenges, and we're all learning, so your joining is most welcome.
I see you have found a coconut oil that agrees with you. The first big step.
Hi Satwar, it is great to see everyone's challenges, don't feel so alone. I didn't know coconut oil doesn't agree with some people. I first bought it for natural beauty & spa products...then started using it with food. I try to follow a vegan diet...85% of the time and especially no processed foods, try to stay away from pesticides and helping with the fight against GMO foods! I notice (in myself) that eating sugar tends to make the tremors worse....anyone else?
Satwar, I notice you're in Canada, I'm about 8 miles from Quebec, nice to meet you.
I have come to believe that managing the types of food I eat is a big part of a successful resolution of PD. Coconut oil gave me a beachhead to fight PD from but I eat lots of kale, broccoli, and red cabbage to supply micronutrients to feed my cells. Sounds like you already know this.
I also believe in moderate physical exercise and have a brisk 5 km walk every day of the year, and that's not easy in Canada.
And I do it in 50 minutes. My doctor said that is faster than most and just stared at me when I said, not bad for someone with PD
for 13 years
But you're right about calories, I'm trying to keep my weight down by taking my last CO dose at ~5 pm (I've taken 10 TBS for the day) and suffer any symptoms until I go to bed.
Hi Satwar. I would like to warn you that doing brisk walking every day can be very damaging to your body. If your walking is not very brisk, then take no notice of this warning. If you do walk as fast as you can, or thereabouts, you will pick up serious injury. Your muscles need a day to recover from serious exercise. If you don't allow this, they start to eat themselves up, in order to get the energy they need to continue working. I am not a scientist or a doctor, but you can follow this up elsewhere. Good luck!
Yes, I am aware of the potential and don't walk at maximum speed every day, but I have been walking every day for years. I do stretch out my muscles after every walk.
I recently learned that Steve Newport, Dr. Newport's AD-afflicted husband, has had a bad year culminating in a stroke this summer that has left him incapacitated. No scientific studies support the claims for coconut oil as a treatment for AD and PD but unfortunately plenty of studies establish a link between high saturated fats and strokes and heart ailments.Coconut oil is higher in saturated fat content than lard and each tablespoon has nearly 200 calories. I know some ( among them Dr. Newport and her supporters Pat Robertson and TV doctors Oz and Mercola) argue that coconut oil has unique features that make it a safe and healthful fat but the American Heart Assn., Mayo Clinic, and many others disagree. I just posted a piece on my blog -- bit.ly/195Av1i -- that looks at the coconut oil claims using a recommended five criterion way of evaluating unsubstantiated medical claims. Coconut oil doesn't fare too well. But our Fewes is heads and shoulders above Dr. Newport under one of the five criteria since he has no financial conflict of interest and is advocating a safe and sensible approach to evaluating coconut oil as a treatment for PD.
I'm sorry but you are misinformed. Steve Newport suffered seizures and is being treated with anti-convulsants. The original news reporter got it wrong.
Furthermore my blood work is outstanding since I started eating coconut oil, better than ever before CO.
Glad to hear it wasn't a stroke and that you are doing so well. I remain concerned about the debate over coconut oil's high fat content and whether or not it's a healthy fat. As I recall Fewes said he'll be checking in with his Mayo Clinic doctors soon. Be interesting to get their views.
Now we're back to our history lesson fwes gave us several weeks ago:
I am so sorry to hear of your unfortunate encounter with a Coconut Oil advocate. One of the very attractive things about this forum is that "reamings" are very rare. You make some good points, however there are also other good points to be made. Most of the Coconut Oil work that has been done for the benefit of those with neurological diseases has been led by Dr. Mary Newport, not a lightweight. She has found dedicated scientists from around the world who have added credence to her theories and her findings.
One of the benefits of freedom is the freedom to do and the freedom to do not. Some have chosen to try a therapy, which is counter to traditional medicine, but which has clearly benefited a few Parkinson's patients (Dr. Newport reports nineteen impressive cases, a couple of whom participate in this forum). She has concentrated more on Alzheimer's and has documented evidence on a few hundred improvements from massive doses of Coconut Oil, for those suffering from the disease. The (unproven) hypothesis is that the medium chain triglycerides in Coconut Oil are converted to ketones by the liver (that is a fact, verified by science) and that the ketones more easily cross the blood brain barrier to nourish brain cells that are otherwise undernourished. She hypothesizes that undernourished brain cells are a common factor in several neurological diseases and that the benefits which she has observed for Alzheimer's patients may be more generally available in the neurological disorder community.
I am a professional scientist, who has an interest in history. I have observed many situations where the big advances in the field or made by people who dared to depart from the conventional ways. Imaging is one of the most important tools for the diagnosis of disease available to medical science. The first physicist who discovered that invisible rays could penetrate objects and expose photographic plates discarded that information as an annoyance that exposed his photographic plates. Shortly thereafter another physicist made the same discovery and asked why, became the father of x-rays and received the Nobel Prize in medicine. He followed on as a medical researcher to become the father radiology.
We learn from history that it is foolish to grab desperately because we have lost hope in conventional approaches, but that it is also foolish to discard promising discoveries, just because other experts pooh-pooh them.
We share your concern that there is no organized scientific basis for understanding the process, the measures of success and failure, and the scientific basis for the benefits we have seen from Coconut Oil on a few Parkinson's patients. To that end we are conducting a non-clinical trial based on quarterly reports from people who have dedicated themselves to a regular consistent Coconut Oil treatment. You can find an introduction to our non-clinical trial as a forum topic under Research. Our hope is that we can generate enough evidence to encourage a more conventional medical team to conduct regular clinical trials. We have received encouragement in this effort from several doctors. You may want to consider the fact that there are some dedicated levelheaded people who are trying to lend understanding and to motivate conventional approaches to the understanding of the benefits of Coconut Oil. I
I repeat that we all have the freedom to do and the freedom to don't. The best we can do is to respect the choice that each one of us makes
Well said. And you confirm what I've sensed in my short time on this forum. The tenor of the exchanges is very positive and non-vitriolic. I've been disappointed with PatientsLikeMe because of some of the angry exchanges. Would you have any objection to my posting your "history lesson" on my blog?
Confusing. The link I used originally had both the video and the text and, as you say, I found the stroke report in the text. After your correction, I went back to the site and used the link Ctv uses to report errors in a story and gave them your corrected information. I now see that when I go back to the original link they have dropped the mention of a stroke. I've reported this correction on the blog and anyone who uses the blog's link to the Ctv story will only see the corrected version.
Now that Ctv has removed their erroneous report about Steve, I've taken all reference to Steve out of the main blog content and just added a comment about what happened for those who may have read the original posting.
Started Coconut oil (2T/day) in April. May bloodwork: higher HDL, all LDL in large globules -- Healthy Blood! Aug. bloodwork - same story. (8T/day) My doctors are not concerned. Good Reference: Know Your Fats, by Mary Enig, Ph.D.
Welcome aboard. I see you and my friend satwar have been having a lively exchange. We all appreciate the civility. Being challenged forces us to re-evaluate our own words and is a valuable learning experience. You have raised a couple of questions about me in the recent days, and every time I am about the answer you two do another cycle and I am out of date!
Mayo Clinic. I had a good visit and my Doctor who is very scientific in his approach. He will not endorse coconut oil without clinical evidence, but he sees the change for the better in me and encourages me to continue what I am doing. He agrees that my non-clinical trial is not fully scientific, but believes that it has value. He suggested an avenue to funding for clinical trials based on our results if there is interest. He recommended that I continue at my minimal level of PD Meds. I am very happy with my treatment at Mayo. They are efficient, intelligent, and communicative. The environment is amazingly cheerful considering that almost all their patients have a very serious problem. I cannot imagine a more agreeable medical treatment center. Declines I have suffered are partially due to my own physiology and largely due to my stubbornness regarding increasing dosage of the meds. Fortunately for me, coconut oil has covered the gap, and my doctor is supportive.
Nonclinical trial. The third-quarter results are in and have been analyzed. The results are very positive, and I am preparing a report on them which will first be distributed to the participants and then with their approval to the public. Briefly we look at progress or regress for twenty-three symptoms, and the participant determines their current status at five levels from insignificant to debilitating. An important difference in our study is that we accept people with a long-term affliction and we trust them to tell us how they feel. While at Mayo I was rejected for a study because I am nearing five years since diagnosis. The clinical trials tend to cherry pick their participants. We accept participants at all stages of the disease.
Of the twenty-three cases, more than half of participants are affected in fifteen cases and less than half are affected in eight cases. In the following table entries are of the form A (B, C) where A is the total number, B is the number with large participation, and C is the number with small participation. This is followed by a sample case for each category. We compare the current status with the reported status before coconut oil therapy and measure progress by median number of categories reduction in the impact for all participants who were impacted by that case. Categories are: 2+, 1.5, 1, <1. So a reduction with median impact from 3 to 2 would be counted in category 1. Some results:
improved 2+: 2 (1, 1) e.g. (sense of smell, general pain)
improved 1.5: 5 (2, 3) e.g. (blank face, freezing)
improved 1: 13 (10, 3) e.g. (bradykinesia, depression)
improved <1: 3 (1, 2) e.g. (tremor, double vision)
We were pleased to see the broad general improvement. This was also reflected in my case at Mayo, where my UPDRS score dropped from 22 in 2012 to 16 in 2013, about 25% (I began using coconut oil in April, 2013).
Permission to use my history discussion. This piece was written in haste as an answer to a particular situation. I am flattered that others think it is worth circulating, but I believe it needs a little polish. Let me polish it and then I will publish a version that is suitable for general circulation. I promise to maintain the style and the appeal for civility. The history needs a little touching up.
It is a pleasure dealing with the people in this forum and with you two guys in particular.
fwes
PS We are always looking for new participants in the non-clinical trial. Send fwes a message if you are interested.
I've been firing away on my blog about my doubts about the coconut oil claim but at the same time felt my readers should hear the other side of the story. But I had a hard time finding a spokesperson who didn't have a financial conflict of interest, Fortunately you turned up when I surfed the internet on c.o. and Parkinson's. So you're it. See my blog post today -- bit.ly/1aRa1Hh. Please let me know if you have any problems with what I've said.
And congratulations on your good news and good work.
This was my first visit to your site. Nicely done!
At your invitation, I came to read your piece;I find it informative, well written,and fair. I will view it an honor if you choose to comment on other of my writings.
I do not expect or want automatic concurrence. I am a well-regarded professional scientist and I try to be accurate and careful. But I am human; errors happen. Better to catch and snuff them early than to have them join the Great Internet Misinformation Library.
LOL at your "Great Internet Misinformation Library." I hope this won't be an example -- my blog post tomorrow is about a report on "photo therapy that may cure brain diseases" like AD and PD.
These conversations are very interesting and enlightening. Since I changed my email address I missed all this. As someone who is seeing the benefits of coconut oil, I always like to put in a word of encouragement to those who haven't tried it. Wes, I was very interested in your visit to Mayo Clinic and this statement you made: "This was also reflected in my case at Mayo, where my UPDRS score dropped from 22 in 2012 to 16 in 2013, about 25% (I began using coconut oil in April, 2013)." Please, what is a UPDRS score? What does it measure?
Unified Parkinson Disease Rating Scale (UPDRS) score Is computed by a trained neurological specialist, based on an interview with the patient. During the interview the examiner conducts 30+ tests and assigns a score from 0 to 4 to each test, where 0 indicates no PD impact and 4 indicates full PD impact. UPDRS is the sum of these scores. Higher UPDRS values mean more PD impact. The disease continues to advance from year to year. So the drop in my UPDS from 22 to 16 suggests that my symptoms have a better response to treatment this year. More detail: phusewiki.org/wiki/index.ph...
Thanks. I wonder how widely used it is. Certainly my neuro has never used it with me. That is great news about the reduction in your symptoms.Does that mean that you have been able to reduce your meds? I'm just so happy I've remained stable since my last med adjustment in February except for that scare I had when I had an illness and also missed taking CO for about 4 days around the same time. Now that I've stablised again I'm just hoping I'll won't experience any change between now when I next see my neuro in March.
So happy to hear that you are feeling better. We all have good days and bad days and on the bad days it is easy to wonder whether the treatment has stopped working. Fortunately the good days come back.
The UPDRS is used to track progress of the disease during clinical trials and many neurologists use it as a matter of course in their clinical treatment. How accurately it tracks the progress of the disease is a research topic, which I expect will get more attention based on a recently popular belief that there are several ramifications of Parkinson's.
You are the second person is asking about a possible reduction of meds the last two days. I have already responded at
Thanks for your encouragement about the good days coming back. I had a mild case of malaria last Feb and I could barely walk after that so my meds had to be strengthened. Now I guess I panic every time I have to take treatment for malaria.
Yes ALL my numbers were off the charts. In a good way. I'm slipping back a little bit to my old ways as I was feeling hungry with such few carbs/sugar. I never started the CO as part of the diet but plan on trying it again starting this morning. Good to see you again.
In fact there is a lot different expert opinions on the effect of ketogenic diets on brain health. A researcher in Canada, Stephen Cunnane, who is investigating ketone therapy, has a ketone PET scanner and also does a glucose PET scan back to back, studying Alzheimer's. He has found that most of the areas of the brain can use glucose perfectly well, and also that the areas that do not take up glucose DO take up ketones just as well as a healthy young brain. He suggests that we NOT use a very low carb diet so that the areas of the brain that can use glucose, get glucose, and don't use up the ketones we are providing through ketone therapy.
Update:
I now believe that it is not possible to experience both eating carbs and having therapeutic ketones levels simultaneously. The key to maintaining healthy ketone levels is low carb diet. The coconut oil therapy should make the transition to low carb diet relatively painless.
I've also been reading papers on post-exercise ketosis, the reason PWP symptoms decrease with rigorous exercise. Some investigators found that eating carbs suppresses ketone levels in the blood.
It seems eating slow digesting carbs, to prevent spikes of insulin may be a way around the coexistence of ketones and carbs. There is an interesting but very long video from a ketogenic man:
The complexity of the ketogenic diet really scares me, a lot of technical understanding is required. I'm hoping to find a solution with a more main-stream diet plan.
Update:
I have now concluded that a low carb diet is the best way to provide ketone therapy. The ingestion of carbs is constantly depleting the ketones produced from coconut oil. My coconut oil diet (12 TBS per day) should make the transition easy, and I can use coconut oil as my lever for controlling weight.
Ketones may bypass the defect in complex I activity implicated in Parkinson disease (PD). Five of seven volunteers with PD were able to prepare a “hyperketogenic” diet at home and adhere to it for 28 days. Substituting unsaturated for saturated fats appeared to prevent cholesterol increases in four volunteers. Unified Parkinson’s Disease Rating Scale scores improved in all five during hyperketonemia, but a placebo effect was not ruled out.
I gauge the result by brushing my teeth. My right arm did freeze now it does not. Is it normal for variation of symptom's intensity from time to time? Was it the coconut oil? My nutritional ketogenic diet or both? I choose to continue this course.
Could you tell me how you take coconut oil I have been spreading it on toast and putting it on porridge as the hot milk melts and easier to take . Thankyou
Most find it best for PWP to stay away from blends with MCT oil. The taste/aroma in organic (virgin) comes from natural extras, which sometimes gives me slight indigestion. Pure CO has these filtered out.
Guidelines:
1. Look for Organic or Virgin if you can tolerate it
2. Pure is good, provided it is not heated in the processing (in the US, I use LouAna Pure from Walmart, $6/qt)
3. Anything that is liquid at room temperature is a blend -- avoid
4. Shop in the baking aisle, not the health food aisle; it's much less expensive.
Does anyone know if MCT oil is as beneficial as coconut oil? It's a medium chain triglyceride like CO. My husband takes it 1 tbsp a day in a glass of juice - it is easier to take than CO .
I have used both. I cannot say one is better than the other from any experience. I am still experimenting. I recently dropped my modified keto diet and remained on CO. I think I will now try using mct oil exclusively and gauge the results.....
4 parts MCT Oil 60/40 ratio to 3 parts Virgin Coconut Oil – and an Essential Omega-3 Oil
Daily Dosage of this mixture: Depends on body weight: 155 lbs or less – 1 tbsp 3 x day; 155-190 lbs – 1-2 tbsp 3 x day; over 190 lbs – 2-3 tbsp 3 x day
If you’d like to have more of the active ingredient MCT (medium chain triglycerides), you can get pure MCT oil. You may find that taking 4 tsp of MCT oil once or twice a day may be more effective.
MCT is usually CO with lauric acid removed to be used in some manufacturing process. From WebMD: "Lauric acid is used for treating viral infections including influenza (the flu); swine flu; avian flu; the common cold; fever blisters, cold sores, and genital herpes caused by herpes simplex virus (HSV); genital warts caused by human papillomavirus (HPV); and HIV/AIDS. It is also used for preventing the transmission of HIV from mothers to children.
Other uses for lauric acid include treatment of bronchitis, gonorrhea, yeast infections, chlamydia, intestinal infections caused by a parasite called Giardia lamblia, and ringworm."
Limited research and the current Fuel for Thought trial show some indication that a CO+MCT mixture is beneficial for Alzheimers. Anecdotal evidence provides a few PWP's who benefit from a mixture and several who achieve substantial additional benefit when they switch from the mixture to pure CO. I am one of these. I have heard of no cases where there was good benefit from CO which was maintained with a switch to a mixture. I would be very interested in hearing some details in such cases.
Since there is very little validated science about any of this there is only speculation about what might be the difference. Both approaches produce ketones. Lauric acid is known to have some medicinal benefits. Could it be that lauric acid has value for PWP?
Coconut oil contains around 10% MCT oil. MCT oil which is mostly derived from coconut oil is 100% MCT oil.
MCT oil: 1 Teaspoon (5 mL.) 4.75 g of MCT
3 tsp X 4.75g = 14.25g / 1 Tablespoon = 14.25g
1 tbsp = 14.8 ml / 1 Tablespoon = 3 Teaspoons
Therapeutic levels of MCTs have been studied at 20 grams per day. (1.40 tbsps)
Early on in diseases like Alzheimer's and Parkinson's, the brain starts to lose its ability to use glucose, which leads to a kind of starvation of the brain. But the brain can still use ketones.
Thanks for this information ..... Sounds like 2 tbsp per day would be enough for my husband to see some benefits. Should he add in some CO too? He doesn't always take the oil every day but he has been taking 1 tbsp most days for awhile and I haven't seen much change. I keep hoping if he stays committed to this that it will make a difference.
I have started with the coconut oil in my mothers diet. Now how do I work up to 8 tablespoons per day? Smoothies ? Or old fashion just a tbl spoon periodically by mouth?
BE CAUTIOUS, EVEN THE AGGRESSIVE MARKETING ON THE F4T SITE, FAILS TO MENTION PWP.
I KNOW OF ONE PWP WHO CLAIMS BENEFITS FROM F4T AND SEVERAL PWP's WHO HAVE EXPERIENCED SIGNIFICANTLY REDUCED RESULTS COMPARED WITH PURE CO (INCLUDING MYSELF)
F4T INGREDIENTS: WATER, MCT, SUGAR, CO, ...
AT BEST 25% CO AND IF SO, THEN 50% SUGAR WATER (TASTES GOOD!??)
COST: CO 10-20 CENTS PER T, F4T CO $1.20 PER T
(SINCE THEY DO NOT DISCLOSE PROPORTIONS, THE LAST 2 LINES ARE GUESSES, PROBABLY GENEROUS TO F4T)
Yes , I have not yet increased my meds. But some of the benefit of coconut oil seems to be waning, or at least the longevity of that benefit is reduced. I am still in the range of 8-10 T per day and I find that I have a little less balance. Also some low back pain occurs after about four hours (used to be six hours). Before I increase anything I am trying some strengthening and physical therapy. I doubt if that will change the six-hour to four-hour issue, but it may help with the back pain.
According to my experience there is some misinformation above: for me, the active ingredient is lauric acid and MCT oil is a inexpensive want-to-be. For more information, read the post "Coconut Oil, Lauric acid, and Cholesterol".
As for Fuel for Thought it is an expensive pretender. According to its list of ingredients, the first four are "water, MCT, sugar, coconut oil".since ingredients are written according to the quantity available (decreasing), there cannot be more than 25% coconut oil. Since coconut oil costs about $.25 an ounce and MCT oil is about three cents per ounce, it is easy to see that there is a healthy profit in selling this mixture$3.54 for 2 1/2 ounces i.e. $1.42 per ounce. Make your own: 1 ounce water +1 ounce MCT oil +1 ounce CO costs $.28 per 3 ounces, i.e. $.093 per ounce. Add sugar to taste, enjoy! To call this a coconut oil beverage is about as honest as calling a concoction which is 90% sugar water and 10% cranberry juice a cranberry cocktail. But it is legal. Caveat Emptor!
If you start using CO at too high a dose, some people experience loose bowels. Dr Mary Newport recommends starting out with 1t at each meal and increasing the dose gradually. Many people get a noticeable benefit when their daily dose reaches the level of 2T tp 8T a day. (t=teaspoon, T=tablespoon). Statin drugs may negate the benefits from CO. Some people notice very little benefit.
There is a lot of good info in Dr Newport's latest book which I reviewed here
Is co effective with psp? My husband used to take it for memory issues but hates the taste of it. He was diagnosed with psp about a year ago and with hospital stays and rehab facilities they all refused to let me give it to him. Any feedback would be appreciated.
He also takes carbadopa, levadopa 4 times a day. I am going to put him back on the coconut oil. I think I was giving him 3 tablespoons a day with meals. He hates the taste but will take it if I insist on it.
One of the best tips I have gotten from this site is how to get the coconut oil into my body wIthout gaging. I am sorry that I cannot give credit to the person who posted this but this is the greatest idea. You simply fill 1/3 of a coffee cup with coconut milk. Heat it in the microwave, then put in the coconut oil to melt. Drink with a happy heart, because it tastes good. Two days taking 2 tbls in am and 2 in the pm, and I am noticing positive results. I thought it took 60 days to work so was I pleasantly surprised. Immediately I am able to function two exTra hours each night. I am a night owl but have not been able to function this late in over 3 years. My friend Bailey might call this a placebo effect. I don't really care. I get to enjoy the benefit, something I was not expecting this quick, PTL!
Hi fwes, I have recently been diagnosed with PD within the last 9 months and after reading your blog, i'm going to follow through with the coconut oil. I had a chuckle at your lovely sense of humour and I have found answers to some questions I had been asking. I notice this was written 3 years ago and I would be interested in hearing from you again with another progress report. You have been an inspiration to me and I thank you.
I was diagnosed 2 years ago at age 63. Symptoms were tremor in right leg, loss of handwriting ability, and soft voice. I also have difficulty rising from a seated position and have balance issues. I started out taking only Azilect, then Mirapex, and 6 months ago Sinemet. Several months ago I started falling frequently, hence the reason for Sinemet. I tried every shots available but nothing worked. In June 2018, my neurologist and I decided to go with natural treatment and was introduced to Natural Herbal Gardens natural organic Parkinson’s Herbal formula, i had a total decline of symptoms with this treatment, the Tremor, falling frequently, stiffness, body weakness, balance issues, depression and others has subsided. Visit Natural Herbal Gardens official website ww w. naturalherbalgardens. com. This treatment is a breakthrough for all suffering from Parkinson’s, don’t give up Hope. Keep Sharing the Awareness, herbs are truly gift from God.
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