I tried putting Parkinson's and meditation into Google and got, as you will have done if you've tried it, a lot of anecdotes from patients and a lot of thinly disguised adverts from clinics. PD is a very strange condition that you cannot really understand until you've tried it. Neurologists rarely have time to listen to PD patients, whose voices are always quiet and may be fast and slurred as well, and for whom they can do little anyway. Most have no time to read research and current topics like protein misfolding are complex and challenging even for specialists so we are given the traditional story that 80% of the neurons in our substantia nigra have died. One consequence of the lack of attention is that symptoms are usually lumped together inappropriately. For example:

"Speech problems" include: slurring due to poor coordination of tongue and teeth (which also can cause problems, as they did in my case, with biting tongue and inside of mouth); failing to use the word you intended to use but speaking a related word, maybe because of slowness in the searching mechanism but possibly mainly in patients who suffer from….; festination (speaking so fast that they miss out syllables or whole words); speaking quietly because in PD you often breath shallowly and you don't have enough breath to finish a word.

"Postural instablility" may be because of: failure to lift the feet sufficiently so that they trip over trivial obstacles; inability to move the feet fast enough when off-balance; failure to realise that your centre of gravity has moved outside the virtual cylinder formed by projecting their footfall vertically so that they are already falling when before they realise.

There are strategies for beating some of these symptoms that can be mechanical or mental.

Biting my tongue was so painful that I learned, without much conscious effort, to eat slowly and carefully and I only do it occasionally now and much less severely than I used to. But my speech is still slurred, although not worse than it used to be a year or two ago. The LSVT programme is designed to make you concentrate on speaking loudly but does not emphasise sufficiently the need to breathe deeply before you start. LSVT is useful but the effort required to shout is usually too great to sustain for long. I can speak at normal speed for a few words but, if I have to tell even a message short enough to rehearse in my head first, I gabble.

My normal walking speed is about 2.5 kph but on a treadmill I can maintain 6 kph up a 5% gradient for 30 minutes.

I'm sorry about all this information but I want to illustrate the point that there is no research on meditation probably because it's too difficult to design a useful experiment. It is already notoriously difficult to assess the stage or the rate of progress of PD because of the absence of objective methods of measurement for most of the symptoms and the high standard deviations of the methods that do exist. In any case the severity of a patient's symptoms varies from hour to hour, day to day and week to week so you need a lot of subjects and a long time to find out whether a treatment or intervention has any effect. The patient's state of mind also affects how severe the symptoms seem to him or her. Meditation undoubtedly will affect how a patient feels but this is not a measureable outcome. It can also affect the patient's ability to concentrate and this can temporarily alleviate some symptoms.

In general - mediation is worth a try for anybody. It can do no harm, it may make you feel better and help with some symptoms but it is hard to see how it can repair physical damage to the brain or how you'd be able to tell if it did. T'ai chi is also beneficial and aerobic exercise even better. Physical (aerobic) exercise releases proteosomes and BDNF in the brain and may actually prevent further damage or even repair some existing damage.

I know someone who trains people far better than the LSVT program, using the diaphragm, posture and toning.

You are right about the absence of consistent measures of symptom progression. I do not have your biochemistry background enough to understand protein misfolding. My approach is more behavioral, driven by the question: what can people with Parkinson's (PwP) do for themselves to develop neuroplasticity?

Because PD is so complex and affects so many brain areas, I use a 4-pronged multimodal approach: meditation, visualization and mindfulness; exercise along the lines of principles to develop neuroplasticity in Umpred's Neurological Rehabilitation; proprioception and interoceptive awareness to process emotional states through the body instead of dissociation from physical or emotional pain; and bodywork or massage to relieve pain, increase proprioception, increase mindfulness of internal states, increase the parasympathetic response, increase dopamine, serotonin and oxytocin.

There is good research on the benefits of meditation and the areas of the brain it affects using imaging studies. Moderate research on brain areas favorably influenced by massage and bodywork--the neuroscience of touch. Combined, they cover nearly all the areas affected by PD. I have submitted a case report with my research on it, and don't think I can publish it here while it is still under consideration.

A question for you: For a case study series, as I mentioned above, how many successful cases would be needed to support a claim of improvement or reversal of symptoms? Would a dozen get a toehold, and hundreds be required for substantive evidence? The medical consensus that PD is a uniformly disastrous, progressive neurodegenerative disorder is a barrier to people who might seek alternatives. There exists a substantial body of anecdotal evidence of recovery, but none supported by research. Skeptics would claim they were all misdiagnosed. Not hard: there is 15% rate of false positive diagnoses shown by autopsy, for whatever that is worth.

Many years ago, a substantial number of people (I think over 60%--would have to look it up) undergoing cancer therapy were using CAM therapies and the vast majority were not reporting it to their doctors. When that report came out, it was with an appeal to physicians to encourage their patients to disclose CAM therapies, to prevent adverse events with medication conflicts. There has been a huge progression since then, of both weeding out the therapies that are not beneficial and research supporting the ones that are. In 2010, 75% of women with breast cancer used CAM, and 50% reported it to their physicians--excellent progress.

I feel PD is the next to need this kind of awakening. There has been a small study showing a majority of PwP use CAM and don't report it to physicians. How serious would the adverse effects of medication conflicts with symptom reversal need to be?

Exercise protocols that have been shown to be beneficial for PwP include boxing, tango, almost any enjoyable dancing to music, Tai Chi, forced exercise cycling, Irish dance, and others. I believe the common factor is focus and concentration on the quality of movement. There was even research that showed exercise with focused attention had far more gains than simply aerobic exercise. Again, brain chemistry is not my specialty.

NOt much systematic research has been done on the subject but there are references and links .Check out this one too.

http://mountainsangha.org/meditation-practices-for-parkinsons-disease/

Thank you, Steven and Neeta. I will follow up.

Rosi - I'm afraid there is no simple answer. For example a course of 20-30 mg predisnolone produces a dramatic improvement in PD patients but it diminishes as the dose is reduced and the patient is usually worse when off prednisolone than before it started, presumably because production of adrenalin by the adrenal gland has been suppressed and takes time to recover. A symptom may sometimes abate for a long period without obvious reason. In order to convince a sceptical profession you would have to provide evidence that:

There has been a verifiable improvement in (a significant proportion of) the patients;

The improvement is a direct result of the treatment/intervention;

The improvement outlasts the treatment by a convincing period;

The treatment is effective on a predictable proportion of a cohort of patients;

(Ideally) there is a convincing rationale for the treatment.

You would therefore need:

Two groups of subjects matched for age, type of condition (ie similar symptoms), stage (of severity) and gender, one of which would have the treatment and the other would act as controls. Ideally this would be double blind and the controls would undergo a treatment that superficially resembles the real treatment but which is expected to be ineffective, but treatments and subjects would be randomised so that neither subjects nor experimenter would know who had had what until the end.

To decide what measures of improvement you were going to use and establish their repeatability and standard deviation. The problem here is that most PD symptoms have a measurement scale of 0 - 5 and a precision of 1 (ie you cannot record intermediate values like 2.3). I could go on but I think (hope) this is enough to show you why drug trials are so expensive and the cost of an error in designing a trial.

For PD, because every patient is different it's very hard to define the criteria for matched cohorts and then you have to search for 20 or 30 subjects (to allow for dropouts) who meet the criteria AND who are willing to participate. You could well need to screen a total population of around 1 million to find them.

On the other hand ….. there is no doubt that meditation makes some people feel better. Most GPs probably dread a visit from a PD patient because there is so little they can do for him/her, at least for now and many would welcome anything they can offer - including meditation and other CAMs providing they are not over-sold or aggressively promoted.

On a personal level I view PD with mixed feelings. Yes it's inconvenient and frustrating but I am lucky in that my background and temperament gives me a passion and a capacity to understand the condition. At the age of nearly 75 a passion like this has compensations. I'm never bored and when I concentrate on the science I forget that I'm also a patient!

Rosi - I agree with you about the medical view of PD. When you receive the diagnosis the most optimistic message you get is that it may take a while before you get much worse but that you will get much worse. There is little or no advice on self help - no one told me about LSVT until I asked for a referral to a speech therapist and you can do a lot of things - exercise, sing, use trekking poles to improve posture and balance, prisms for double vision ...most important of all - use your brain .... etc..., but we seem to be expected to give up and wait for the end. The only empty consolation is that the medical attitude to Alzheimer's is much worse!

Rosi - SciAm has just published a long article about putting on a sound scientific basis observations that our state of mind affects the immune system and also the progress and outcome of disease processes. You can find it at

http://www.scientificamerican.com/article.cfm?id=how-happiness-boosts-the-immune-system&WT.mc_id=SA_CAT_HLTH_20131203

Stephen,

All these answers are very, very helpful. For now, I am just answering one from 2 weeks ago which is especially to the point.

I recognize there are several skeptical professions and appreciate them. I am grateful to have some standards to avoid errors in reasoning and methodology. I would not want to promote something that is misleading, or base conclusions on data which I have interpreted incorrectly that might give false hope. However, I still have a lot to learn.

I have been stumped about a randomized controlled trial for a while, and which criteria to use for matched cohorts, and decided to just continue doing the research until I find a systematic approach that gives consistent results for most of the patients I see. Right now I am testing too many hypotheses, based on both my observations and published research findings. It is hard to attribute the changes I see in my patients to the methods I use, until I determine if there are different responses based on variations in Parkinson's symptoms and history, including variables such as hemispheric differences, optimism and other personality/temperament features, exercise levels and kinds of exercise, experiences vs inexperienced meditators, idiopathic vs known familial or other known risk factors such as toxic exposures and head injury. And that's not even accounting for known differences in symptom progression based on other factors.

You're so right. Every patient is different!

Stephen,

As for verifiable improvements, I don't have sophisticated ways of measuring. For example, here is an odd one: 3 of my patients have reported spontaneous improvements in sense of smell, and they are able to identify them, and it astonishes them after decades of diminished smell. Is that significant? Hard to say, too small a sample. No controlled conditions. Anosmia or hyposmia has been proposed as one of the most significant non-motor symptoms for early diagnosis (Berendse, et al). It occurs in 90-95% of Parkinson’s patients tested (Alexander; Haehner et al). Olfactory neuronal loss has even been suggested as a primary initial site of Parkinson’s (Hawkes).

There are no reports in the literature of a reversal of olfactory disturbance in treatment of Parkinson's, so there's no comparison data. And I don't have an array of olfactory detection kits to give standardized tests or correctly assessed data. How would I even know if it was a direct result of the interventions, except a guess on account of the novelty? I have read that newly generated olfactory neurons are short-lived, so I am encouraging my patients to repeat the effort to both detect and identify the smells, as the sensory processing areas including limbic regions, and are more than just the olfactory bulb.

As I said, I will continue the research, until I come up with a hypotheses that is testable, and learn more about methodology and study design.

Rosi - I have a reply but too long so I've attached it as a separate doc. It is too difficult to carry out trials involving matched patients with PD but there are other approaches that might work.

Here is the doc.

Stephen,

I loved the SciAm article, thank you. When you said "our state of mind affects the immune system and also the progress and outcome of disease processes," it set me to thinking. In 2006 there were clear indicators that certain exercise programs might be neuroprotective for PD. It wasn't definitive. It took some years for it to be proven by controlled studies. It wasn't until 2013 that it has been fully embraced, although the mechanism of their benefit is poorly understood or controversial. At least in Portland, Oregon, I hear that doctors are strongly recommending these exercise or dance programs for all newly-diagnosed.

I believe the next field that has the potential for some promise, yet has not been adequately researched or well accepted is meditation and mindfulness approaches combined with bodywork and somatic processing of emotions. Theoretically, some of the brain areas and neurotransmitters affected by PD respond to meditation and others respond to massage. My research suggests meditation as a component of a multimodal approach might make a difference for Parkinson's. Andrew Newberg et al (https://www.researchgate.net/publication/255705545_Meditation_and_neurodegenerative_diseases) was the first research I saw that suggested meditation for PD, and it only came out in August 2013. And he uses the brain scans you suggest. There have been two other research papers published since. And Newberg has published many other articles and some books.

Although not peer-reviewed, there are some people who claim "recipes" for Parkinson's recovery. There is enough anecdotal evidence out there, from both individual websites, and from reading posts on discussion boards to wonder what, if any of this, could be tested by research? Have you seen Howard Shifke's posts? He has become symptom free, and had the tenacity to believe in his capacity for self-healing. He has coached two others who have become symptom-free. And about 8 others on his program have reduced or eliminated their medications.

http://www.fightingparkinsonsdrugfree.com/2012/06/12/fighting-parkinson%E2%80%99s-and-two-years-symptom-free/ It makes me wonder what elements of his program are effective, and for which of the many subtypes of PD?

You are right about how hard it would be to carry out trials of matched PD cases!

Article Meditation and neurodegenerative diseases

Mindfulness based intervention in Parkinson's disease leads to structural brain changes on MRI: A randomized controlled longitudinal trial Clinical Neurology and Neurosurgery

Volume 115, Issue 12, December 2013, Pages 2419–2425

John,

Thank you for finding and posting this. Much appreciated!

This is a ten-minute guided meditation, focusing on expanding the breath, deepening body awareness, and using non-judgmental attention on the present moment. Can be done sitting in a chair or on a cushion.

https://www.mixcloud.com/parkinsonspodcast-mindfulmovem/parkinsons-disease-and-meditation-a-brief-guided-meditation/

vigorous exercise stimulates the production of brain-derived neurotrophic factor (BDNF).  It also produces oxdative free radicals, which, far from being harmful, stimulate the release of lysozomes, which break down, for recycling, waste products, particularly proteins, that are no longer functional.

The probeme is that no-one has identified a the cause of virtually any of the 70 or so symptoms of Parkinson's.  Doctors treat them as if they are mysterious apparitions - par of the curse of haviing PD.   For example- low  lood pressure is almost certainly caused by low levels of tyramine.  At 1300 h my BP s below 90/60; After lunch, at which I am carefult to consume cheese (a good source of tyramine), itv ises to about 115/75.   Rapid breathung is the cause of low oxxygen saturation in the blood.  Carbon dioxide accumulates and makes yoy breathe faster (but not deeper).  If you take some  deep breaths it all goes away.  The problem is shallow breathng caused by dopamine defciiency but which is easily corrected.  Apart from the patients,  large vested interests have grown up in research prgrammes to investigate PD and in drugs cmpanies to sell Sinemet and Madopar.  Anyhing which cured PD or eve offered to alleviate half of its  symptoms would thresten hundreds or even thousands if careers and  $billions in profits.  This is why the MJ FF is so important.!

There is another difficulty with Parkinson’s: The Placebo effect.

Most patients (PwP) have tried (usually on recommendation or suggestion from different sources and without professional guidance) a range of more-or-less unconventional treatments in the hope or expectation of improving their condition.

Faith and/or optimism is so strong that they can convince themselves of a marginal Improvement for a while (maybe three months or even six), until, inevitably, reality supervenes, and they accept the incapacity of the treatment to produce a significant or lasting benefit.

It may be the long time that has passed without the development of an effective treatment, which leads people to believe that one must be increasingly likely to happen sooner rather than later. This is one motivation for people to participate in trials. Those who run trials are aware that Parkinson’s is notorious for the strength and persistence of placebo effects, and make allowances for it, particularly where patients must self-report the effects of the treatment under trial.