What are the attributes of an effective treatment for PD?

Is a regimen of daily ingestion of Coconut Oil an effective treatment for Parkinson’s disease? If effective means effective cure, then the answer is NO. Is there something better? Again the answer is NO! michaeljfox.org/glossary.ph... “No currently available treatment for Parkinson's disease has been proven to provide a neuroprotective or neuroregenerative effect; all available Parkinson's disease treatments are symptomatic, meaning that they mask the symptoms while the underlying disease continues to progress.” There are treatments that are expensive, advertised, peer-reviewed, clinical trialed, endorsed, and recommended by the establishment. None has shown an ability to extend the life of a Parkinson’s patient by as much as a day. My expectation is that Coconut oil will be found to have some symptom benefit but will not reverse the condition or cure it. So what do we mean by ”effective”?

All traditional and holistic treatments of Parkinson’s disease are directed towards providing relief from the most onerous symptoms. Since there are a myriad of symptoms which do not affect all patients equally, it is likely that the treatment that is best for one realization of the disease, with its symptoms, may be totally wrong and ineffective for a different realization which has different symptoms. Clinical trials and years of clinical experience have established that traditional Parkinson’s medications provide symptomatic relief and at the same time may cause debilitating symptoms to appear as a result of the medication and not the progression of the disease. This situation may be corrected by expensive deep brain stimulation (DBS) surgery, which according to the MRC is suitable for about 5% of the PWP. What about the rest of us? mrc.ac.uk/Newspublications/...

“ Dr.” Dominic Carone , PhD, Psychology, wrote a post denouncing coconut oil. Instead of 10 Commandments, he has 5 Rules. A review of his rules quickly reveals that they are designed to tip you to the establishment. They are not subtle; the fifth rule is paraphrased: “trust the establishment”. His debating technique is taken directly from Hee Haw: I’m so smart I can ask myself the question and then answer it. Here’s my question: Has Coconut oil any value for PWP? Here’s my answer: Read the 5 Rules and conclude “trust the establishment”. Brilliant! Now let’s apply his five rules DBS. First surgery attempted in 1987; published paper in 1993; no trials; authorized by the FDA in 2001; paper questioning general practice of DBS without trials, 2003; first published trial results in 2010. The trial is touted for having 366 participants. No mention that it is not double-blind, no not even single blind. In the trial they compared patients that had DBS surgery with patients who had not had surgery, meds only. Presumably both the doctors and the patients knew the difference. Then they announced the benefit: A 35% reduction in drug costs for those that had the surgery, ibid. We do not question the value of DBS for PWP; we only wish to point out that there is a lot of science lacking along the way to finding effective treatments for PWP. So much for the verbal ruffians wielding clubs labeled unscientific, no clinical trials, etc.

In the end we die. The purpose of this post is to discuss how we get there; how we prefer to get there; and how to define “effective” so that our preferences are respected. Vocabulary: the GOOD days are the days when PD is at most a minor inconvenience; the DARK days are the days after the final crash, where all symptoms have progressed out of control, presumably death is near; in between is the DECLINE as we transition from the good days to the dark days. A typical scenario is a GOOD plateau, the DECLINE, and then the DARK days. We have two examples. First consider Steve Newport, Mary Newport’s husband with early onset Alzheimer’s. Steve had begun his decline when Mary intervened with Coconut Oil therapy. He came back to a good plateau lasting a couple of years, and now has had a rather sharp decline. Mary indicates that he is entered the dark days. A second example is Dick Lee Swindler, the longest surviving patient of DBS therapy. His obituary can be found in another post. Dick had the surgery in 1995 and went into a nursing home in 2011. We can surmise that he had a good plateau for nearly 16 years and then there was a rapid decline and dark days which combined for a period of two years. We have no information on what ups and downs Dick underwent before the surgery. No treatment will be perfect and we may have to make trade-offs between the length of the good plateau and steepness of the decline. Utopia might be a good plateau until the last day in which there is a decline and the dark hours to the end. That is probably not an option; so what else can we say? It has been pointed out to me that a forty-year-old PWP and an eighty-year-old PWP might have different attitudes about this.

If we discuss specific therapies like coconut oil, we may be accosted by verbal ruffians. If we start to discuss possible trade-offs between maximizing the good days and maximizing the total days we may see verbal ruffians again. We live in a free society and they seem to feel no restraints. Take heart in the following two thoughts:

- It is easier to throw rocks than to build with rocks.

- If the builders stop building to throw back then who will do the building?

So we ask: What are the attributes of an effective treatment for PD?

14 Replies

oldestnewest
  • The objective of investigating Coconut Oil (Ketone) therapy is maintaining satisfactory quality of life during the progression of an incurable neurological disease. Critics abound. There are good points to be made on both sides of this question. 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. Four decades thereafter another physicist made the same discovery and asked why, became the father of x-rays and received the Nobel Prize in Physics. 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 the 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 at tending-the-iris.us/. 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 level-headed people who are trying to lend understanding and to motivate conventional approaches to the understanding of the benefits of Coconut Oil.

    I repeat that we all have the freedom to do and the freedom to do not. The best we can do is to respect the choice that each one of us makes.

    Copyright © 2013 . Wesley Wilson, all rights reserved.

  • I often wonder with these PD drugs if there is an optimum dose which can just control. Many patients I think are over medicated to the point where the drug regime tends to cause other problems. This leads to more medication to counteract, which has its own side effects.

    Some might get by on say one dose per day(of what ever medication) where as some might require more.

    I do think the Coconut oil helps and I no longer use the neupro patch (I feel no worse without it, I did not feel any better with it)

    I have realised also I can now manage with two Madopar per day rather than three with no real problems.

    Obviously I do not recommend people experiment. That is their own decision.

    From my own personal experience I find by not doing as my Doctor says I feel I can cope better, at least at the moment

    That to me is what today is about

    Tomorrow is another day.

  • I suspect the same thing for myself, owdsod. I delay my first dose for as long as possible now. I hate to ruin the good feeling I wake upwith. Usualy, I start to feel like crap right after taking my first dose of mucuna/1/2sinemet. So I try to delay it til 11 or even til noon.

  • when I read that someone cut back on their sinimet using coconut oil, I might consider. sorry, I am cynical.

  • Hi PatV,

    Call it cynical; call it cautious. Most of us are very cautious about making changes in medications without support from our doctors. In my case my family physician suggested canceling Sinemet and motion disorder specialist was not enthusiastic. So far I have not made a change. For me, I was on minimum dose and starting go downhill seriously considering increasing dosages. When I discovered coconut oil, I not only ceased going downhill I started going uphill and was happy with the decision to keep the same dosage I'd been using. Since the disease continues to progress, even being able to delay increases in dosage is a benefit, but not one that we can score.

    However that is not what this post is about, and I hope that the discussion on this post amounts to more than discussions of each of our medications. This isn't a discussion of coconut oil or any other specific treatment, although I'm sure that people use examples that are close to them to illustrate their points. The issue is whatever choice you make in treatment, what is your personal inclination, what is your philosophical predisposition, what do you want from the treatment, for you to give it five stars. We have information from the experts that the disease marches on. In light of that sobering fact what do we want? How would we choose one treatment over another?

    For example, suppose that treatment A would give you a gradual decline in bradykinesia from mild impact to modest impact in 3 years, and treatment B would give you a gradual decline in bradykinesia from mild impact to modest impact in 5 years with a 20% chance of onset of dyskinesia. Is there a rational way to choose treatment A or treatment B. Is either treatment "effective"?

    Thank you for your interest,

    fwes

  • Hi fwes.

    I think we have talked about this before! You may remember that I told you my first Pd symptom started 50 years ago in 1963, when I found that I could not throw a ball properly. That was caused by bad coordination. I still have that problem, but who wants to throw a ball every day? My symptoms piled up, one on top of another until I was finally diagnosed in 1992 with Pd. The first question is, "Why did it take so long to develop?" The answer is, "I don't know". All I do know is that, because I suffered from a severe back problem, I had been advised to do regular exercise to strengthen my back muscles. This I did from 1970 onwards. Most of the Pd symptoms started before 1970 and tapered off a bit until 1992. My worst symptoms were depression, rigidity, speech problems, severe tremors, when trying to perform fine motor skills and typing on my computer. There was a whole host of other symptoms, but they don't stop me enjoying life. In 1992, my neurologist put me onto a monotherapy of eldepryl, which is an MAO-b inhibitor. For the next two years my performance in the gym continued to get worse, until I gave it up in disgust in 1994. Then my late wife persuaded me to start doing regular walking. I was not convinced it would help, but what did I have to lose? After walking as hard as I could for three times a week, I found that after four months, my performance had improved quite noticeably.

    To cut the long story short, by 2002, my condition had imporved to the point where I was able to stop taking the eldepryl. I then wrote a book about my experience, which the medical profession and the pharmaceutical industry has done its level best to squash. I am not selling any quick-fix solution, I am only telling everybody my story. The walking was only allowed for twenty minutes to start with, and built up by five minutes every second week until I was walking for an hour. After a couple of years of walking, I was able to walk five miles in less than one hour. How is that for performance?

    I know most people don't like walking or think they are unable to walk, but what choice do they have? nothing else works!

    I talk to groups of Pd patients as often as possible (free of charge) and regularly take patients, who shuffle slowly, and show them how well they can walk, when they concentrate on the action of walking and stop trying to will their legs to walk. I have yet to come upon a single person who has not been able to walk properly. Even people in wheelchairs! The problem is that when I am not with them they cease to practice this walking. I know it is not easy, but what is? All they have to do is concentrate on lifting one leg and placing the heel firmly on the ground in front of them, then do the same with the other foot. Don't try and will the leg to move, concentrate on actually lifting the leg up off the ground and moving forwards and placing the heel on the ground as far forward as possible. Try it, it works. Why abdicate the control of what we are doing to a bunch of pills? Why not take control of our lives and stop filling our bodies with toxins, which affect our brains?

    Come on guys, look at what is going on around you! All we are encouraged to do is to take more and more medication. But where is it getting us? I don't take any Pd medication and have not done so for over ten years. Others can do the same, it is up to them, not their doctors.

    John

  • Hi John,

    Love your smile and your posts. Have been tempted to comment but have been trapped by the tyranny of the urgent. You seem so much in control that you have dropped from the urgent category :-).

    Your fifty year track record is an anomaly, and I am delighted that others have benefited from your strategy as well. I would suggest that the methodology of our non-clinical trial for coconut oil is applicable to "walking" as well. In my case I seem to have exceptional benefit from coconut oil, and I wonder whether there is a potential broad application or whether I'm exceptionally lucky. Conventional meds are yet another treatment. As a stated above, I am open to the possibility that no treatment is effective for all PD sufferers and that there are classes of PD sufferers who can benefit significantly from one treatment or another. As you rightly note, the funding is slanted towards investigating those treatments where there is a financial incentive.

    Allow me to rant for a moment: Big Pharma is motivated and supported by advertising budgets measured in hundreds of millions, perhaps billions of dollars. I know you offer books for 10s of dollars. Mary Newport sells books the same price range and actually cut the price second edition when it became popular. There are writers on this blog and others who snidely dismiss people for any financial interest. Although I'm Pure in that regard, I want to speak out on the behalf of people like you and Mary that are recovering a tiny return on a major time investment. Comparing you with Big Pharma is silly. I have little patience with people who use name calling and other distractions to conceal the fact that they have lost their way in the intellectual discussion.

    Now back to this post. Many treatments for PD are proposed: several approaches to meds, DBS, acupuncture, turmeric, coconut oil, walking, several exercise and stretching programs, several spiritual approaches, specialized diets, etc. The legal term "standard of practice" constrains professional medical providers to a more narrow road, where "clinical trials" is often the mantra. This approach has merit for certain treatments, such as medicines. How do you conceal from the patient that they have had surgery or not, that they are walking or not, that they are praying or not, etc. There is a time for clinical trials and there is a time to seek other notions of scientific verification.

    Common sense guides many of our life decisions. We educate our children not because of clinical trials but because we have observed that education usually leads to a more successful professional life. Sometimes we jumped to the wrong conclusions. Sometimes we are right and science scrambles to catch up. If there is evidence that say 5% of all PD patients would benefit from a nonconventional treatment, for which we do not understand the mechanism, should we deny them whatever community wisdom is available on the approach? I choose 5% in this question because that means 95% will likely not benefit, and yet according to the MRC 5% in the number of patients that will benefit from DBS. Note that if we had twenty 5% treatments, and that we could intelligently guide choices among these twenty, then the aggregate system would serve a large portion of the PWP. What I suggest is more of a systems engineering approach than a medical approach. Something I learned in my years at MIT Lincoln Laboratory. It is also an approach that used for "insulin adjustment" for diabetics [Mathematical modeling of the glucose homeostatis system in humans (with C.A.Carter), LCDS Lecture Notes 72-1, Brown University, July 1972].

    Since we would only want to allow effective treatments to be entered into our systems design, we come back to the question of this post: What is an effective treatment? Once we settle on the definition, we will have to deal with the question of measuring the degree to which a treatment is "effective". This latter issue will probably be left to the geeks. But the definition of "effective" combines technical proficiency with human desire and the non-geeks deserve to be heard on this issue. Hence this post.

    Thank you for your interest!

  • Hello fwes

    What is an effective treatment? A good question. For me it would be essentially neurorestorative, but because we are all different, the degree it is restorative would be variable in the same way not everyone who undergoes bilateral DBS benefits exactly the same. I have read that there are as many as 40 symptoms grouped under the Parkinson's heading, but not all of us diagnosed as having Parkinson's have the same ones. I tend to think of Parkinson's as more a syndrome. Some PwP attribute aches and pains in other parts of the body as being 'Parkinson's'. Take toxins which are reputed to be a prime cause. Some, if not most, get to the brain through the digestive system, skin and lungs. Although I started off by saying neurorestorative, it occurs to me that we will be fighting a losing battle or at best have limited success unless we also clean up our diets and personal environment as well. It's not all about swallowing medications or even nutrients, if it ever was!

    Norton

  • Hi fwes,

    I hope I understand your question. For me, an effective treatment would:

    (1) provide me a life expectancy of another 25 years (i am 65 years old)

    (2) significantly reduce or eliminate my tremor (without treatment it is virtually disabling)

    (3) have no health endangering side effects

    (4) maintain a good level of mobility (no freezing, good gait etc)

    (5) maintain a high level of energy to meet the entire day

    (6) slow progression of the disease

    (7) available now

  • It almost appears we are focusing on A SINGLE treatment when we actually respond to an interaction of many factors (emotional, physical, medical, social etc.). I wonder how we can isolate a single factor and attribute a benefit (reduction of symptoms) to that factor. I guess that is what we mean when we say everyone one is different. Of course, we can probably all testify that Ldopa relieves our symptoms in a clear observable way. But that may not, in itself result in an "effective treatment" for everyone because of the interaction of other factors which are not necessarily quantifiable and which can not be replicated in the life of others. .

  • I continue to be surprised at all the hype coconut oil gets when there is little to support the claims for it other than anecdotal stories that could result as much from the placebo response as from the coconut oil, But relatively little attention is given to curcumin, the active ingredient in turmeric, which the Indians call the "spice of life" It has been the subject of more scientific studies than any other supplement or compound, The vast majority of those studies (which number in the thousands) find that curcumin's anti-inflammatory propensity has the potential to slow down the progression of Alzheimer's. Parkinson's, MS, diabetes, many cancers, and the list goes on. As is so often the case, these studies were conducted with mice and in the past it's been difficult to get curcumin across the blood-brain barrier in sufficient quantity to make it effective. But recently there have been breakthroughs that have greatly enhanced the ability to get curcumin into our systems. A BCM-95 version has been particularly effective. I do Google alerts on both coconut oil and curcumin to get current updates on both.. I'm amazed at the steady stream of new and encouraging scientific reports on curcumin. I see nothing but commercial hype and anecdotes on coconut oil. Too bad curcumin isn't being touted by the likes of Drs. Oz, Mercola and Newport. For more on curcumin, see bit.ly/1aAdc4q

  • Allow me to take a cut in answering my question. For those of you that expected comprehensive wisdom prepare to be disappointed. I share my thoughts in the hope of stirring more comments on this philosophical issue.

    For a treatment to be effective at the very minimum it must provide more relief (benefits) then grief (costs). In addition patients must be willing to accept the treatment, i.e. it must be acceptable. Let's look at these issues separately:

    Relief versus Grief. Most Parkinson's medications have long-term consequences that would preclude their use for minor ailments such as the common cold. The grief they are expected to cause is significant and probable. Yet we all use them because they provide short-term relief to symptoms that are comparable to the grief. Yet we go into this with our eyes mostly closed, accepting the advice of well-intentioned experts. It would be very nice to have a quantitative measure R of relief and a quantitative measure G of grief, so that we can compute benefit B = R – G. In this fantasy world you would only accept a treatment when B >0. Alas we have no quantitative measures.

    Acceptable. Most of us can remember the day we received our Parkinson's diagnosis. Few will contend that this was not a life-changing experience. Proposed treatments all seem to involve further life-changing experience: beginning to take the meds accepting the consequences; accepting Jon Pepper's advice for devoting a major portion of life to exercise; taking large doses of coconut oil and making the necessary dietary adjustments to avoid excessive weight gain; allowing a surgeon to probe in your brain and then having a technician program you; etc.These are not minor changes, and they are likely to continue for the rest of our lives. The issue is compounded by the fact that humans don't like to make changes at all. For this latter claim I refer you to the excellent book "Change or Die: The Three Keys to Change at Work and in Life" by Deutschman.

    We might add to Deutschman: change or suffer and die.

    Yet we are woefully lacking guidance. Conventional treatments have their flaws, but at least they are known and documented. Alternative treatments offer promise but with the thinnest of rational support, no consensus about treatment policy, and usually no knowledge of the long-term consequences.

    This has gotten terribly cheerful hasn't it? But no one can tell us what we want except ourselves. So the challenge remains: What do we want? What would it look like?

  • Ultrasound surgery for PwP ?

  • Really enjoy reading this post started by fwes. This site is made up of so many intelligent PWP who are so knowledgeable and well versed. I am in awe. I am one of these people who like to try anything that sounds reasonable and safe when recommended by patients or doctors and especially by time tested therapy used for thousands of years. Hence, I have a daily regimen of walking, qigong, coconut oil, turmeric, coq10 , mucuna pruriems, 11/2sinemet/daily, TMJ appliance, electro Magnetic therapy, magnesium chloride spray, and now LDN. Pharmaceutical treatments I shy away from - only visit neuros once a year just to report in. My goal is to FEEL better while battling PD on a daily basis but by taking less drugs and more natural substances that can help my own body heal itself. My challenge is to keep up the treatments and not give up on them too soon when I don't see a miracle in a week or so. I feel that most of the alternative treatments are not harmful, so why give up on them - it must be kept up with as a lifestyle change and adjustment. The thinking is different than popping pills for immeciate effect, which most of the time will bring long term bad effects anyway. My hope does not lie in the cure, but lies in a more comfortable life while waiting for a cure. That's why I run my own non-clinical trial at home - but am grateful for all trials out there - clinical or otherwise. Oh yes, the list of substances to UNDO - is equally important and also a challenge to practice...the challenge of having NO packaged snacks in the house - easier if I never watch TV....

You may also like...