An UPDATED Note from Dr. Mary & How Steve is doing now!
It has been more than 6 years since Steve improved with coconut oil. He improved very significantly the first year and remained stable for 2 years. . He began having seizures in summer 2013 starting with a head injury from a fall and has not fully recovered. Although he has had some serious setbacks since then, I feel it was well worth the extra quality time that we have had together as a family. Although these setbacks have been discouraging, he remains in good spirits in our home, and has regained some strength and has been talking, smiling and being generally silly in recent weeks (much more like himself). I cannot help but think that ketones are playing an important role in all of this. Although he will most likely not win his battle against Alzheimer's, there is now at least Hope for others who are at risk or in earlier stages of this horrible disease, and their families, might actually Win their fight. Alzheimer's Awareness is coming and we will keep you updated so you may help us bring more awareness and research to this and future projects to find a cure.
I want to thank everyone who has sent me testimonials for your loved ones who have tried coconut oil and or MCT oil. I have received over 400, and while some people have no response, the vast majority has reported improvements in cognitive functions and overall quality of life. I am overjoyed that so many people have benefited from this food-based intervention as my husband Steve has!
These testimonials have helped to get grants for research at the University of South Florida (USF) Byrd Alzheimer Institute, where humane animal studies have been completed and a clinical trial of coconut oil in 65 people with mild to moderate Alzheimer’s disease is currently in progress as of June 2013, funded by an anonymous foundation. This is a pilot study that will look at whether there is symptomatic improvement and also if this treatment will delay progression to Alzheimer’s disease.
There are several other large studies of MCT oil for Alzheimer’s that are currently in progress as well. Ketones as an alternative fuel are also under study at USF in the lab under direction of Dominic D’Agostino, Ph.D. for treatment of cancer, ALS (Lou Gehrig’s disease), wound healing, oxygen toxicity, epilepsy, and status epilepticus, using ketogenic diets that contain medium chain triglycerides and also ketone esters. The cancer studies are looking at combinations of ketogenic diets with hyperbaric oxygen and glucose lowering substances to further enhance the effect on killing cancer cells, which thrive on glucose but cannot use ketones, while preserving normal cells. Results of several of these studies have now been published and others are forthcoming.
Studies of ketone esters for Alzheimer’s disease urgently need to be undertaken but funding for mass production of the ester and clinical testing has not yet materialized. For now you can provide ketones to the brain as an alternative fuel by consuming foods that contain medium chain triglycerides to produce ketones. What do you have to lose?
I heard Dr. Mary Newport speak a number of years ago at a Nutrition Conference on this subject. I'm glad to hear that her husband continued to benefit from this dietary intervention.
My husband with PD had a couple of false starts with introducing MCT and coconut oil because we didn't do it slow enough the first and second time around. (It created a lot of gas and loose bowels.)
At this point it isn't an issue. He uses 1 Tbsp. of MCT oil with his Whey protein shake in the morning and I either use coconut oil in cooking or add coconut flakes to his meals. He also gets delicious apple flaxseed muffins and almond coconut cookies made with coconut oil as snacks during the day. To raise ketones, it is also necessary to keep carbs low which can be a challenge but his A1C over the last years has come down from 6.1 to 5.7. It definitely makes a difference in improving energy and perhaps in reducing some of his PD symptoms. Must say that getting between 7 and 8 hours sleep and doing more exercise is his next target. He is cutting back on his hours at work to 30 after his current job is completed to increase his exercise by 1 hours/day and get 1 more hour sleep at night. Hopefully soon!
Since Art is not on PD meds (after 11 years) he does his best to keep focused on what he can do himself to make a difference. He does many interventions so we used tracking sheets to try and get a feel for what makes the most difference in bettering or worsening of symptoms. He is 78 today!
I set up a Google alert on "Coconut Oil" at the height of the coconut-oil-for-Alzheimer's" craze. (Google alerts send you current news of activity on the internet dealing with the subject you select.) While Dr. Newport was beating the drums for this, the alerts frequently dealt with reports of using coconut oil as a cure or treatment for Alzheimer's. But I've seen hardly any report of current activity on this. The alerts deal with the use of coconut oil for skin care and the like. Its use for Alzheimer's was over-hyped at a time when there was no real supporting evidence. Looks like now most everyone is content to wait for the results of the pending trials, which is appropriate.
I also was wondering why I hadn't seen an update on Dr. Newport's work and her husband's situation. That was why I was so happy to see Roy's posting of her update.
Gleeson, as a Clinical Nutritionist and Wellness Coach, I have learned that if 6 people come to see me with the same condition, I may give them 6 very different protocols because analyzing all the info and tools at my disposal, I see the same symptoms can be coming from different causes. When you get to the root cause and correct it, often multiple seemingly unrelated symptoms go away. The same holds true whether it is PD, cancers, arthritis or heart disease.
My attitude is I don't care to wait for something to be "proven scientifically" is I see that a little personal controlled experiment is not likely to do harm, such as the Coconut Oil diet approach. This may not be a cure but if it can turn back symptoms, it seems to me to be worth trying since the premise is scientifically valid. Like any other dietary approach I was careful in working with my husband that all his nutritional needs were met.
Some of the research on PD looks very promising, but there are also simple everyday things that have no potential downside that can be experimented with on a one by one personal level to see if they will make life easier and better in some way.
I have no problem at all with people experimenting to see what works for them. I do a lot of that myself. For example, I've benefited greatly from taking the serotonin-booster 5-HTP. But I can't find others who have had the same experience.
What I have objected to with Dr. Newport, Pat Robertson, Dr. Oz, etc. is that they tout Dr. Newport's coconut oil experience with her Alzheimer's afflicted husband Steve as a miracle cure (Robertson actually called it a miracle). Whenever i mention my experience with 5-HTP I am always careful to make the above caution. If the coconut oil hucksters did the same thing they would note that thousands of people and families being devastated by Alzheimer's have had their hopes raised and dashed by the unsubstantiated claims being made for coconut oil. The number reporting anything like Steve's experience is incredibly small given the placebo effect to be expected.
I tried it myself but with the same negative result experienced by so many others. I get very angry with hucksters who raise and dash hopes of the afflicted and their families in order to make money for themselves.
I was diagnosed with PD 4 years ago. I am now 78. Primarily tremor in my right hand. Also problems with saliva and swallowing. Started taking coconut oil 16 months ago. I use Fuel for Thought because it's convenient.
Saliva and swallowing problems went away. Tremor was reduced, my wife even commented on that. I take no meds. Just read Pepper's book and he has some good suggestions.
I am 66 yo and ten months since first dx when tremors appeared a couple months earlier. (about two years total) I realize PD was my condition long before tremor stage.
I think I have the tremor dominant PD and I also do not take P meds. I will not take P meds as long as I possibly can.
Thanks for your updates on many topics Roy, they are great.
This one is interesting, and it all depends how you read it as to what you get from it. For instance although Steve did get some benefit for a while that has not continued. I think that we need hope, realistic hope. Im not sure how much hope I can take from Steves story.
This is from an article written about 12 months ago:
"For nearly two years after starting on coconut oil, Steve stabilized and improved. His health declined in 2010 when his father died. That triggered a new bout of depression. He was convinced he saw his father's reflection in darkened windows at night.
In early 2012, he started taking low doses of Valium to help him sleep. Three weeks later, he was pacing and chattering to himself. Then came a night terror that left him so agitated and confused, Dr. Newport called 911. For two weeks, he stayed in the hospital...
Believing the drugs had made his symptoms worse, she took him off all medications, including the Alzheimer's drugs, which she said she did not believe had been effective. Today, he takes only gout medication and, after last week's seizure, an anticonvulsant.
Steve Newport still walks, but very slowly. He can't be left alone. He wanders around the house, watches television and listens to music. He was confused and weepy when a visitor whom he hadn't met before showed up at his home recently.
Some days, he calls his wife by the wrong name. But other days, he scoots close to her on the couch and asks about her day, she says.
Before the oil, Mary Newport said, "he was on a downward spiral." Without it, she believes, she would have lost him years ago"
(Author Jodie Tillman can be reached at jtillman@tampabay.com or (813) 226-3374.)
Looks like he had a couple of good years but certainly not a cure or even remission. Im waiting for the trial outcome.
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