Thursday, December 31, 2009

The Coconut Experiment.......

It occurred to me today that it had been just over a year since my first post, "The Diagnosis."

I just finished reading it and it depressed me. Not because of the contents but because I remember my physical condition and the state of mind I was in at the time. It is disturbing to know how bad I've gotten in this past year and to know that this illness does not stop until I quit. There are no timeouts or vacations from it. It is relentless and insidious.

One of the Anonymous commenters on my blog challenged me to eat two Mounds Bars a day for two weeks with the implication being that the coconut would have beneficial affects to my "starving brain."

A year ago I dismissed the coconut oil fanatics on the assumption that if it worked my doctor would have prescribed it for me. Now I'm more I tried it.

Now let me paint you a picture. Every morning as I leave for work I grab a banana and a 12 ounce can of V8 that I consume on my 25 minute drive to work. Coffee is the first thing I do when I get to my desk (coffee CAN be a verb).

Now let's add 21 grams of sugar and 250 calories packed into a very tasty combination of dark chocolate and coconut. Can you say buzz! Then eat another one on your commute home. Can you say appetite killer!

About three days into the regimen I noticed that my mid section began to gurgle a bit. Two days later my stomach had developed a language of its own. Still I persevered because I said I would.

At the end of two weeks the results were in:

1. Tom Hanks was right about coconut being a natural laxative.
2. It will be two years before I eat another Mounds Bar. (On a side note, Superwoman put two Mounds in my Christmas stocking).
3. No noticeable improvement in motor skill function.

I can cross the Mounds/Coconut experiment off my list of things I have tried in moments of weakness.


I still walk about my land, camera in hand. It has been wet though not too cold.
I cannot tolerate cold without my right arm shivering uncontrollably.

Leaves this year are gigantic. Either that or I'm just paying closer attention.



  1. I don't blame you for trying the mounds bars, I'd be open to suggestion as well.

    That leaf is HUGE!

  2. When Thomas Edison was interviewed by a young reporter who boldly asked Mr. Edison if he felt like a failure and if he thought he should just give up by now. Perplexed, Edison replied, "Young man, why would I feel like a failure? And why would I ever give up? I now know definitively over 9,000 ways that an electric light bulb will not work. Success is almost in my grasp." And shortly after that, and over 10,000 attempts, Edison invented the light bulb.

    So, this experiment didn't work out so well. There are other things to try.

    There are a lot of other substances in whole coconut meat that are not necessary for this purpose. The active ingredient is called "medium chain (fatty) acid" (MCT). The MCT of greatest interest is called "caprylic acid". Health food stores sell "MCT oil" products for bodybuilders.

    This symptom of "glucose hypometabolism" in the brain is common to many neurodegenerative diseases including CBD and Alzheimer's disease. What we're doing is lunching off of research done for AD.

    Here is the link to the Alzheimer's Association message board where a woman taking care of a woman with Down Syndrome AD describes in detail the experimentation she has been going through to find the right levels of MCT oil.

    Our own experimentation with MCT oil has been promising. In my mother's case, 20g of MCT oil 3x per day has reduced her CBD-related myoclonus (involuntary jerking) to the point where most days it is not present.

  3. Mounds bars are good, and the taste is kind of unique. If it makes you live another 30 years, do it!


  4. Hey Bob, happy new year. By the way i hate coconut, i know i have read also the research on coconut, on cinnamon,, then i read all the commments from the support group over the years, and know it does not help. You know i am determined to read everything on the support group postings, of which there are over 20,000 postings, it started in 1999, and this week i am just starting 2004 but i will get it done.
    We rang in the new year at a friends house, the guys always include Kel in all their outings, and now they are taking snow board lessons (these are all men in their mid 50's) starting next week, well Kel has decided he is going with them and he is going to see if he can still ski, i am not for this, Kel used to be an excellent skier, but his body doesn't react quickly anymore, can't get him to back down on this one, he will at least rent the new short skis rather than his long skis but i shall be a nervous wreck tuesday night when he goes with the guys. He has decided to let his hair grow too, beginning to look like a hippie. Tieing a tie, he forgot how to do that 2 years ago, i remember when he was going to an interview and he could not do it. His right hand / arm i noticed this week is jerking more. But else i think he is doing well and no other symptoms.
    BTW your xmas table looked gorgeous ,Superwoman does a nice job.
    Kel is going to AZ for two weeks with his brother who will drive him down, and they will stay with their mom and dad who are snobirds, that will be the longest in 36 years we have been apart. He is really looking forward to getting out of winter, sometimes i feel resentful that i am up at 5 am headed to work and would love a vacation. I have to stop those feelings, as i know he would much rather be out in the workforce.
    Bob, i love the pics you put on, seeing the cell phone by the leave really showed me how large that leave was , wow.
    Happy 2010. Karla

  5. Hey CW! Sorry I haven't written lately... you know, with the holidays and all...
    Anyway... I love love love your 'love letters' entry! You and 'Superwoman' are very 'lucky' to have each other! (as a very wise man told me once... "I'd rather be lucky than good any day!") Congrats!! I think y'all are it! :)
    Well, I would say "Happy New Year!", but my my... how meaningful WORDS become within the boundaries of knowledge... or diagnosis... or... ... corticowhatever! :(
    So... "CONTENT NEW YEAR!" my friend!
    Continue to count ALL your blessings and be sure to share them with us! :)

  6. you are 1 inspiration :)
    happy new year!!

  7. Everyone,
    I've been a bit under the weather so please forgive me for not responding to your comments in a timely fashion. I read them as soon as you post but as with everything else in my life it takes more time than it should to answer back.

    Mr. C and Secretia,
    I am way more concerned about my quality of life rather it's length. I don't want to live an extra two years in a near vegetative state.

    I think of you often. I hope Kel's ski trip was good. I know you can use the breaks too.

    Content would be good.....Hell, contentment would be Great at this point.

  8. I tried to post the following two articles on the Yahoo CBGD_support message board, but they never appeared. Since CBD is such a rare disease, we have to take advantage of the research into related diseases that have a LOT more funding.

    "Cinnamon Extract Inhibits Tau Aggregation Associated with Alzheimer's Disease In Vitro"
    Journal Journal of Alzheimer's Disease
    Publisher IOS Press
    ISSN 1387-2877 (Print) 1875-8908 (Online)
    Issue Volume 17, Number 3 / 2009
    DOI 10.3233/JAD-2009-1083
    Pages 585-597
    Subject Group Neurosciences

    Dylan W. Peterson1, Roshni C. George1, Francesca Scaramozzino1, Nichole E. LaPointe1, Richard A. Anderson2, Donald J. Graves1, John Lew1
    1Department of Molecular, Cellular, and Developmental Biology, University of California, Santa Barbara, CA, USA
    2Beltsville Human Nutrition Center, Beltsville, MD, USA


  9. I have seen what this disease will do to a person.

    I have been panning the backwaters of the Internet for four years now trying to find some way to help my mother since mainstream medicine offers no hope at all for someone with CBD. I have found some things.

    For someone who can still swallow, trying the cinnamon idea is extremely easy. Target sells bottles of cinnamon capsules, 200 for about $8. If you are not taking a blood thinner, then all you have to do is take 2 500mg capsules 2x per day. It takes about 4 weeks to see a benefit. Then, the improvements should continue for about 13 weeks.

    When you read the messages on the Yahoo CBGD_support group, you will find that only the person who followed this protocol saw a benefit. Those who did not follow this, failed, and gave up.

    I have seen messages from several people saying that while they don't notice any benefit from taking MCT oils (from whatever source: bodybuilder supplements, Axona, coconut oil), when they STOP, that's when they realize that it was helping.


I read ALL comments right after they're posted. I may fail to respond, but please know your input is appreciated.