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?