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Progressive Symptom Reduction Strategies for Parkinson's Disease
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Breathing Disorders and Parkinson's Disease

September 22, 2020

Introduction

Some of the common “symptoms” of Parkinson’s Disease could be reframed as behavioural patterns contributing to overall symptomology, but which can be ameliorated through appropriate retraining to help with progressive symptom reduction. Examples of such retrainable “habits” include issues with posture, mindset and breathing. These patterns tend to impact each other, for example habitual mouth breathing can result in the forward head position common in PD. People with PD will often see in hindsight that, once identified, these problematic habits were apparent years before diagnosis. In this article, we specifically consider how unhealthy, but fixable, breathing patterns could be an exacerbating factor in PD. We will cover how poor breathing interacts with, and may even be causal of, many other symptoms, and explore what we can do to improve our quality of life by taking action to retrain our breath.

In her book, “Music as Medicine: Particularly in Parkinson’s”, Daphne Bryan reviewed the scientific literature of breathing problems in PD:

“One study… found that 35.8% reported shortness of breath on exertion (dyspnea), 17.9% reported a cough and 13% reported phlegm production… a higher proportion of Parkinson’s patients die of pneumonia than in the general population. There is also a chance of increased respiratory infections… “;

“…the most common manifestation of which is soft speech which affects as many as 70% of people with the disease… people with Parkinson’s produce more variable and less efficient movements of the chest wall when preparing to speak, taking in less breath before speaking and continuing to speak when breath reserves were finished… identified inspiratory muscle weakness, even in early-stage patients. Rigidity, a common symptom of Parkinson’s, can affect the muscles of the chest wall and the diaphragm, which will restrict the movement needed to breathe fully… stooped posture, affecting many, can reduce lung volume… the reduction in dopamine of the condition itself may cause shortness of breath or the perception of shortness of breath… the loss of dopaminergic input to the brainstem and carotid bodies can cause altered regulation of the carbon dioxide and oxygen and consequently an altered perception of breathing. “

Also, people with PD tend to breathe fast and shallow, through the mouth not through the nose, and from the chest or the neck not from the diaphragm. Taking myself as an example, at the time of writing this, I breathe unconsciously once every two to three seconds, or 20 to 30 breaths per minute, and the more symptomatic I am, the faster, but the shallower, I breathe. Although the breath is shallow, the rapidity of it means I am moving much more gas in and out of my lungs than normal. I have observed similar patterns of breathing in other people with PD. We will see that the very same features of dysregulated breathing are associated with generalized breathing disorders, outwith PD, and, moreover, that the symptoms associated with these general disorders overlap strongly with those of Parkinson’s Disease. Consequently, breath retraining methods which have been developed to ameliorate these disorders are likely to significantly benefit people with PD.

Recognizing Breathing Disorders

A good introduction to this field is the book “Recognizing and Treating Breathing Disorders: A Multidisciplinary Approach,“ by Leon Chaitow and co-workers, and his blog post “Remembering the Connection: Respiratory Alkalosis and your Patient’s Symptom Catalogue”. These provide very clear explanations of how unhealthy hyperventilation or overbreathing, corresponding to shallow, but fast breathing with many more inhales and exhales per minute than normal for the resting state. can become habitualized, how this is associated with anxiety or chronic stress, and also the list of symptoms these breathing disorders cause.

The major mechanisms at play here are to do with the role of carbon dioxide (CO2) in the blood. CO2 arises as “waste” products from the normal metabolic activity of cells, and is partially expelled out of the body during the exhalation part of breathing. For example, during sustained active exertion, the faster energy conversion in the cells results in increased levels of CO2 being produced, and hence to maintain safe levels, chemical sensors in the body and brain, which constantly assess CO2 levels, tell the body to involuntarily breathe more rapidly in order to expel the excess CO2 from the system, and to restore balance.

However, if one is persistently overbreathing or hyperventilating even when the body is passive or at rest, as in common in people with PD, then the CO2 in the body is constantly being expelled faster than it can it build up, resulting in chronically low levels in the blood. This has huge implications for health, not only because then the blood becomes too alkaline, but also because CO2 levels in the blood have an absolutely vital role in the delivery of oxygen to the tissues of the body and brain.

In the normal course of events, oxygen taken in from the air via the lungs during inhalation is circulated around the body by becoming bound to the haemoglobin of red blood cells. Some of this bound oxygen can dislodge from the blood cells and pass into the tissues to oxygenate the muscles, organs, brain, etc. However, the degree of stickiness of oxygen to haemoglobin, and hence the ease with which it can dislodge and enter the tissues, depends sensitively on the amount of CO2 present in the blood. The less CO2 there is, the more sticky the oxygen and haemoglobin become, and the less easy it is for the oxygen to detach. Thus, far from just being a “waste” product, the CO2 has a crucial role in regulating oxygen delivery.

We now see why chronically low levels of CO2 in the blood caused by overbreathing has enormous implications for health, because when the blood is low on CO2, the oxygen and haemoglobin become tightly bound together: the oxygen becomes very stuck to the red blood cells and does not readily detach in order to diffuse into the tissues. This means that although the blood may be completely saturated with oxygen, the brain and body are in fact getting very little of the oxygen which the tissues need to survive and thrive.

Moreover, when overbreathing becomes habitual, a vicious circle occurs, because the body gets used to the low CO2 levels, and settles into a new equilibrium. Once this occurs, the body becomes intolerant to more CO2, such that any increase sets off alarm bells in the system, causing even more hyperventilation through panic attack like symptoms in order to quickly bring the CO2 levels back down to the habitualized low level. Overcoming low CO2 tolerance, and hence returning CO2 levels to normal is therefore not easy or straightforward and requires a programme of graduated breathing exercises performed daily over the long term in order to gradually reacclimatize the system to tolerate normal levels of CO2.

Chronic overbreathing, and the resulting low levels of blood CO2 and increased alkalinity of the blood, creates a wide variety of symptoms and health issues. Since these arise in part due to a lack of oxygen to the muscles and brain, it is pertinent to compare the symptoms of these types of breathing disorders with those of PD, and indeed to consider if overbreathing is compounding or may even be causing other symptoms of PD. According to the article by Leon Chaitow cited above:

“The ramifications of altered blood pH, towards the alkaline end of the spectrum, may also relate to more general features such as muscle tone, balance and motor control.”

These are the primary features of PD. Furthermore,

“symptoms associated with alkalosis emerge - fatigue, brain fog, increased pain sensitivity, anxiety”

which are also primary symptoms of PD. Leon also lists tremor, one of the most obvious signs of PD, as a possible symptom of overbreathing. The figure below, taken from the article, summarizes the principle symptoms of breathing disorders, and people with PD will recognize many of these.

105407232_2731117183838571_7691929225632804657_n.jpg

Medical Recognition of Breathing Disorders

The existence of these breathing disorders have been known about, but largely ignored, in medical circles, for decades. Indeed, L.C. Lum, a cardiologist at Papworth & Addenbrookes Hospitals, Cambridge, UK, wrote an article on this entitled “Hyperventilation: the Tip of the Iceberg” in 1975. Here are some relevant excerpts:

"...this syndrome... shows up in medical clinics under many other guises. This is merely the tip of the iceberg; the body of the iceberg, the ninety nine per cent who do not present [with extreme/obvious hyperventalition], presents a collection of bizarre and often apparently unrelated symptoms, which may affect any part of the body, and any organ or any system. The many organs involved are often reflected in the number of specialists to whom the patient gets referred, and my colleagues have variously dubbed this the ‘multiple doctor’ or the ‘fat folder syndrome’. Indeed the thickness of the case file is often an important diagnostic clue."

"The main symptoms observed by a general physician in a series of 270 cases are below. Symptoms may show up anywhere, in any organ, in any system; for we are dealing with a profound biochemical disturbance, which is as real as hypoglycemia, and more far-reaching in its effects. Such patients are often pursued relentlessly with every investigative device known to modern science, and end up with the label of ‘anxiety state’ and the implication that they are inadequate or in some way inferior. They may be advised: ;’pull yourself together, it's only your nerves"‘or possibly a more sympathetic surgeon may be persuaded to tinker with or remove the complaining organ--an organ, which, I may say, is merely protesting against an unbalanced diet deficient in carbon dioxide, bicarbonate, oxygen, and calcium ions: to name but a few of the well-known biochemical disturbances which accompany acute hypocapnia [lack of CO2]."

Lum lists many symptoms, many of which are also common in PD: palpitations, disturbance of consciousness/vision, shortness of breath. "asthma" chest pain, dysphagia, muscle pains, tremors, tension, anxiety, fatigability, weakness, exhaustion, sleep disturbance nightmare, constipation, diarrhea, twitching eyelids, headache, giddiness, difficulty in breathing, weak limbs, painful limbs, vague pain, weakness, irritability, insomnia.

"Some forty years ago [in the 1930s], Kerr, Dalton and Gliebe wrote ‘patients presenting the well known pattern of symptoms haunt the offices of physicians and specialists in every field of medical practice, they are often shunted from one physician to another, and the sins of commission inflicted upon them fill many black pages in our book of achievement.’ Unfortunately… this to be still true today, despite the many and excellent reviews which have appeared in the intervening years. Among the sins of commission are fruitless operations on the abdomen, the spine, and other organs-- invasive investigations which are not without risk--and, even worse, damaging diagnoses like epilepsy and cardiac infarction".

Origins of Breathing Disorders

The book by Leon Chaitow and co-authors cited above explains how breathing disorders are intrinsically linked to chronic stress and anxiety. The shallow, fast chest breathing through the mouth is a hallmark of the body preparing itself for the exertion of flight or fight due to a stress response. While this adaptive in acute stress situations, when stress is chronic and the body is spending a lot of time in fight or flight, the associated pattern of breathing becomes habitual, and eventually the system gets stuck in the new equilibrium of the CO2 intolerant state. However, the vicious circle work both ways, because overbreathing itself puts the body into a stress response state and feeds anxiety. A very good tutorial about the two way links between anxiety and breathing patterns is given by Robert Litman in the video below.

It is not surprising therefore that people with PD can present with disordered breathing associated with chronic stress and anxiety, since there are very significant overlaps between the other symptoms of chronic stress and those of Parkinson’s Diseases, and ingrained fight or flight behaviours are common to the pre-diagnosis background histories of people with PD. Conversely, it is important to note that techniques which have been developed to treat breathing disorders should also help to decrease the symptoms of PD, including reduction of anxiety and increasing resilience to stress.

Robin Rothenberg, author of “Restoring Prana: A Therapeutic Guide to Pranayama and Healing Through the Breath, for Yoga Therapists, Yoga Teachers and Healthcare Practitioners”, which contains perhaps the most accessible, yet thorough, exposition on the biochemistry and biomechanics of healthy and unhealthy breathing that I’ve read, lists other factors which may contribute to the onset of disordered patterns of breathing:

  • prolonged low grade stress;

  • overeating or eating highly acidic/processed foods;

  • lack of exercise/movement;

  • overuse of stimulants;

  • exposure to pollutants;

  • chronic pain, illness;

  • grief;

  • emotional outbursts;

  • excessive talking (teachers and sales people especially susceptible);

  • allergies, hay fever;

  • chronic cough, COPD, asthma.

Self-Assessment of Breathing Disorders

There are a couple of simple methods for self-assessment of breathing patterns, and in particular for giving some rule-of-thumb measures for CO2 intolerances. The first is from the Buteyko breathing method called the “Control Pause” test, as demonstrated in the video below with Patrick McKeown, author of The Oxygen Advantage, who refers to it as the BOLT (Body Oxygen Level Test) score.

To measure the Control Pause: close mouth and breathe normally through the nose for 30 seconds; take a normal breath in and out through nose; at the end of the exhale gently close nose with thumb and forefinger and start stop-watch; as soon as first feeling the need to breathe, release the nose, stop the clock and take a normal breath through the nose.

Remember, it is not how long the breath can be held, but how long it takes before feeling a need to breathe. Thus, the first breath after the test should be normal, not gasping for air. The rule of thumb indicator is that a Control Pause measurement of less than 10 seconds signifies serious breathing disorder problems, less than 25 and breathing needs attention, 30-40 seconds is satisfactory, while 60+ seconds is excellent. At the time of writing this, when I measure my Control Pause, it is consistently under the 10 second mark, and the more symptomatic I am while doing the test, the lower the score. So this indicates that I for one have a marked breathing disorder. I suspect many people with PD will have similar low scores.

Another self-assessment breath test has been developed by SH//FT, a human performance company, which they refer to as the “CO2 Tolerance Test”, claiming this is a good indicator of personal response to stress.

Here are the directions for this test:

“Get a stopwatch, all breaths are through nose only; take 3 normal nasal breaths; take one more full nasal inhale and fill lungs all the way; start to nasal exhale, start timer; exhale through nose as slowly as possibly, for as long as able; don’t hold breath or swallow, when no air left to exhale, stop timer, record time".

Here is their interpretation of the test:

  • 60-80 seconds - advanced, reflects a healthy pulmonary system, good motor control, and relatively low arousal;

  • 40-60 seconds -intermediate, this range generally improves quickly with a focus on CO2 tolerance training;

  • 20-40 seconds - average, moderate to high arousal state, breathing mechanics need improvement.;

  • <20 seconds - poor, very high arousal and stress sensitivity.

At the time of writing, whenever I do the test, my score is consistently below 7 seconds, and the more symptomatic I am, the lower the score. This test therefore also indicates I have a severe breathing disorder and high stress sensitivity. Again, I believe that many people with PD will have similar outcomes.

Exercises for Restoring Health Breathing

There are various suggested types of exercise which can help gradually shift the equilibrium point of CO2 intolerance back to healthy states. However, all of these emphasize nose breathing over mouth breathing (at least for the inhale), and diaphragmatic breathing over chest breathing. This represents an immediate roadblock for people with PD, for whom mouth breathing is likely to have become so ingrained that it feels like the nose is permanently stuffed up, and who have diaphragms which are so frozen that it cannot voluntarily be flexed. However, it is possible to open the nose in the majority cases through some simple exercises. Robert Litman in the above video demonstrates this, and below is another video of Patrick McKeown on the topic. See also my article on how I restored nose breathing with the help of a red light anti-allergy device. It is also possible to restore access to diaphragmatic breathing, as I covered in another article, which explains how I used Block Therapy to achieve this.

Once nasal and diaphragmatic breathing is made possible there are a few different types of breathing exercises one try for restoring CO2 tolerance to more normal levels. It is important to note that these exercises are not necessarily targeted at immediate regulation of the Nervous System, unlike breathing methods designed for in-the-moment relaxation or mobilization, but are aimed at long term retraining of breathing patterns in order to restore healthy oxygenation levels to the brain and muscles.

An example of such exercises, that I found particularly easy to access, was developed by Leon Chiatow specifically for treatment of hyperventilation/overbreathing disorders, which he terms “Anti-arousal Breathing Exercise”:

"…in a comfortable (ideally seated/reclining) position, exhale fully through partially open mouth, lips just barely separated. This outbreath should be performed slowly. Imagine a candle flame is about 6 inches from your mouth and exhale (blowing a thin stream of air) in such a way as to not blow the candle out… exhale, count silently to establish the length of the outbreath [or use a stopwatch app on phone]. After exhaling fully, without any sense of strain, allow the next inhalation to be full, free and uncontrolled [through nose]. Count to establish how long inhalation lasts. Without pausing to hold the breath, exhale fully, through the mouth, blowing the air in a thin stream (again, count at the same speed). Many people find a brief (one second) pause at the end of the exhalation helps to establish an unhurried rhythm."

"Continue to repeat the inhalation [through nose] and the exhalation for not less than 30 cycles of in and out (with a one second pause after breathing out). The objective is that in time – after some weeks of practising this daily – this should, without strain, achieve an inhalation phase which lasts for 2–3 seconds while the exhalation phase lasts from 6–7 seconds. Most importantly, the exhalation should be slow and continuous. It is no use breathing the air out in 2 seconds and then simply waiting until the count reaches 6, 7 or 8 before inhaling again. By the time you have completed 15 or so cycles, a sense of calm is frequently apparent. Apart from practising this once or twice daily, it may be useful to repeat the exercise for a few minutes (about five cycles of inhalation/exhalation takes a minute) if feeling anxious or ‘stressed’".

I've personally found this useful to get started with, because I can extend the mouth exhale through pursed lips much longer than I can out through the nose, hence it allows me to more easily reduce the amount of gas moved in and out per minute, and hence give time to build up CO2 levels.

Buteyko type methods are another example of this type of exercise, and focus on breathing as lightly and as little as possible, all via the nose. In his video above, Robert Litman provides some instructions on how to do Buteyko stylre breathing.

SH//FT also provide a series of cadence breathing exercises (timing of inhales and exhales and breath holds in between) for increasing CO2 tolerance. The exercises are bespoke depending on the score on their CO2 tolerance test. They have also developed an app to assist with0 these exercises.

In her book on Music as Medicine cited above, Daphne Bryan suggests a couple of prolonged (slow) diaphragmatic breath exercises for people with PD. She also surveys the research on the benefits of singing and humming exercises for PD. Both may help because they not only help teach better breath control and awareness, but also can significantly slow down the number of breaths taken per minute, which allows time for CO2 levels to build up, and hence allow proper oxygenation of the body and brain. Indeed, according to Daphne, humming practices can reduce breathing rates to 4–6 breaths per minute.

As a person with PD herself, Daphne practices what she preaches, with a daily programme consisting of ten minutes slow diaphragmatic breathing, five minutes humming and five to ten minutes singing each day. Daphne has relatively mild symptoms and slow disease progression. Perhaps unusually for someone with PD, she scores in the higher end of normal on the CO2 tolerance tests mentioned above. It would seem that these breathing exercises, along with other music based therapies, has afforded Daphne much protection from the ravages of the disease.

In her book “Restoring Prana” cited above, Robin Rothenberg provides a complete programme of breath retraining for increasing CO2 tolerance, including a Buteyko style exercise she terms “Subtle Breathing” . Robin has incorporated this breath work into her yoga teaching. Furthermore, Robin has developed yoga based programmes specifically for people with MS, Parkinson’s Disease and other types of dystonia, combining the breath work, and elements from somatics and Feldenkrais. Her students enthusiastically express how yoga and the breath retraining has provided a crucial tool in their treatment protocol.

I would like to give special thanks to Stephen Donald, Tore Kersten and Nicky McLeod for many valuable and educational discussions and pointing me to various resources.

In Books, Brain Science, Therapies, Video, People, Mental Health Tags Breathing, Anxiety, Breathing Exercises, Hyperventilation, Symptom Relief
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Survival Instincts and Parkinson's Disease
February 3, 2022

To help shake off the gloom about this, I call our survival instincts our superpowers, because it is a more resourceful way to look at the body and the problems we might be experiencing. Try saying "thank you, body, for keeping me safe, but now it is time to bring me out of the safe survival state and back to the normal range of health and grow." This ought to give us a little more faith in the dispositions of our body.

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February 3, 2022
Feeling Trapped and Parkinson's Disease
December 13, 2021
Feeling Trapped and Parkinson's Disease
December 13, 2021

As a first step, we perhaps need to identify the places where we are stuck in our lives, those stressors which come with a sense of being trapped, the stressful things we can’t fight or flee from, and try to address these. This is because the tonic immobilization framework of PD predicts that it will be very hard to reduce symptoms in circumstances that our nervous system is constantly feeling trapped by a proximate threat. Examples include being in a toxic relationship, living in a house with neurotoxic mould infestations, workplace exposure a chemical agent, enduring a long and stressful daily commute to work.

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December 13, 2021
Motivation, Pleasure, Pain and Parkinson's Disease
November 4, 2021
Motivation, Pleasure, Pain and Parkinson's Disease
November 4, 2021

The activation of the habenula inhibits or deactivates the dopamine neurons in the substantia nigra and ventral tegmental area, and, conversely excites or activates them when it is deactivated. This has profound implications for PD, as this points to the possibility that it is not cell death which causes the issues in PD, but chronic activation of the habenula permanently switching off the cells in the substantia nigra from producing dopamine. This is a more hopeful hypothesis, as it means the cells are just dormant, not dead. If we can figure out how to deactivate the habenula, this could provide significant symptom reduction.

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November 4, 2021
Dopamine Cell Receptors and Parkinson's Disease
October 2, 2021
Dopamine Cell Receptors and Parkinson's Disease
October 2, 2021

Cell receptor population dynamics therefore may play a primary role in environmental interactions (nurture) and can profoundly affect biology (nature), and may be the mechanism through which history gets written into the body, such as affects of childhood trauma in later life. Cell receptor population dynamics also provide strong and significant neuroplasticity without the need for new neurons or new synaptic connections/wirings per se, by profoundly affecting the functions and sensitivities of the existing neurons themselves.

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October 2, 2021
Dopamine and Parkinson's Disease
August 15, 2021
Dopamine and Parkinson's Disease
August 15, 2021

The Huberman Lab podcast is a lecture series by Prof. Andrew Huberman, professor of neurobiology and ophthalmology at Stanford School of Medicine, on practical and free tools for optimizing health based on the very latest neuroscience and human biology research. This podcast contains vital, actionable, and need-to-know information for people with Parkinson’s Disease, in particular of the latest pragmatic research into dopamine biochemistry. Dopamine is the major neuromodulator which is most problematic in PD, and the target for the mainstay medical interventions. So here I’ve extracted from the podcast episodes the timestamps of everything Prof. Huberman has to teach us on the subject of how to optimize our dopamine biochemistry. The format is the episode title, in order of release, followed by the corresponding timestamp links and descriptions whenever dopamine is referred to.

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August 15, 2021
Visual Cues and Parkinson's Disease
July 26, 2021
Visual Cues and Parkinson's Disease
July 26, 2021

I learned about the connection between the eyes/vision and movement of the body in an online course run by my friend and "Wisdom Coach" Cheryl Townsley, where a tutorial showed how, looking up or down with the eyes (not via movement of the head) creates an immediate increase in the range of specific arm/shoulder motions. I could quickly check this was indeed true for myself. Indeed, the connection between eye and body movement is so important that professional athletes are being trained in these types of techniques, and are given specific eye exercises to improve sports performance!

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July 26, 2021

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Testimonials Carousel: What People Say
March 13, 2025
Coloring with Parkinson's
March 13, 2025

By D.M. via email

Works for me, I am coloring mandalas now and everyone tells me they are very beautiful. I find coloring helps my focus and my tremors. I fall asleep in my chair, if I start coloring I am wide awake and on the ball. I started by coloring adult swear word books, they were most amusing. Mandalas are complex sometime take four or five days to complete. By the way: I am 90 years old and have had Parkimson’s about three years.

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March 13, 2025
November 28, 2024
Very Encouraging and Refreshing
November 28, 2024

By Katrina B.

I thank Gary and Lilian for sharing their experiences, findings, and recommendations regarding Parkinson’s. I have a Parkinson’s diagnosis and also experienced the cold news of “no cure, progressively degenerative,” etc. I purchased and read Lilian’s book. Very encouraging and refreshing. I also bought a book Gary recommended called Music As Medicine (Daphne Bryan, author), which has helped me to walk without firing the dystonia in my left foot. That’s a huge win for me! I followed links in Gary’s material to videos on breathing techniques to release stress and reduce my adrenaline. That’s helped my tremoring remarkably. So… many thanks to Gary and Lilian. I will continue to follow and engage. Oh, and I have shared your names and resources with my occupational therapist, physical therapist, and speech therapist. They were very interested. I tried to share with my neurologist. He wasn’t interested. No surprise there.

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November 28, 2024
April 19, 2024
Stuck on Pause
April 19, 2024

By Dave F.

Hi Gary, I just found your Parkinson's online information a week ago or so. Your perspectives on a potential root cause of PD being related to trauma, stress, inhibited parasympathetic system, etc. seems synergistic with my path to address my PD. Although I do not call it PD anymore. I call it being "stuck on pause". I have a list of over 150 things I could be doing (does not include pharmaceuticals), and the therapy I am primarily focused on is based on the books "Recovery from Parkinson's" and " Stuck on Pause" by Janet Hadlock (available as pdf's on pdrecovery.org). While I address symptoms with 2 hrs of exercise daily, meditation, clean vegan diet, etc... my approach to recovery is getting unstuck. Unstuck from a norepinephrine/adrenaline based nervous system back to a parasympathetic/sympathetic balanced nervous system. Are you familiar with Hadlock's work? If so, what might be your perspective in relation to your findings? If not, I created a 2 page overview I can send if interested... or you can download the books for free.

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April 19, 2024
August 12, 2023
Photobiomodulation or Red Light Therapy
August 12, 2023

By S.S. via email

I have late onset vascular Parkinsonism-diagnosed age 83, and came across Dr Catherine Hamilton’s blog redlightsonthebrain.blog. The author is a retired general practitioner who is involved in research in Australia. I have been using transcranial and intranasal lights for 5 months and have experienced relief from symptoms that has greatly improved my quality of life and am surprised not to see many (1 only) references to the benefits of this therapy.

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August 12, 2023
July 7, 2022
Tremors Reduced
July 7, 2022

By Facebook Group Member

I have been having great success with the Hope Shortcut programme. I have both Lilian Sjøberg and Gary Sharpe courses. The material really resonates with me and this approach together with John Coleman Rethinking Parkinson’s is really helping. The tremor I have been experiencing is much reduced and often gone completely. I notice how it ramps up when I am stressed or self conscious. My mood and energy levels are much improved.

What hasn’t improved is the slowness and stiffness in my right hand and leg. It is probably not noticeable to others but I notice when using static bike and when folding washing etc. any thoughts on root causes of this slowness? Left hand side fine.

Thank you all for your work

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July 7, 2022
March 29, 2022
Accessible Knowledge
March 29, 2022

By S.A.

Thank you both for all the work you have done. Lilian Sjøberg for your knowledge and Gary for helping to make it accessible. My daughter who suffers from anxiety and panic attacks and myself with PD found it so enlightening. I can also see how when my father 93, who also has PD, gets stressed his cognition deteriorates dramatically

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March 29, 2022
October 19, 2021
Staying Positive
October 19, 2021

By Brad Maybury

Gary, I mainly want to thank you for this site and for your inspiring example. I was diagnosed with PD two months ago. On top of that, I'm in my sixth week of radiation therapy for Prostate Cancer with the accompanying hormone meds (fatigue). Your attitude and example are helping me to stay positive and feel that I can beat both of these! I've been doing the fast-walking per John Pepper, plus a bunch of other things. I'll get a mini-tramp soon. I already understood the trauma link, having discovered my own about six years ago, as well as being a fan of Gabor Mate (I see his book on your site). I had not made such a precise connection with PD until reading your story (thanks!). You are a huge inspiration and have already helped to improve my life!

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October 19, 2021
July 28, 2021
Suggestions for Exploration
July 28, 2021

By Frederick Lowe

Your understanding of the many important factors that contribute to Parkinson's and the many practical suggestions on how to address them runs parallel to my learning over the last 5+ years. You are a man after my own heart. Love the Polyvagal theory knowledge. I knew somewhat of the importance of improving vagal activity, but not to the depth you have shown. Thanks. Totally agree with knowing how the Cell Danger Response is involved with being stuck in the inflammatory and alarm state. And few others besides ourselves appreciate the amazing role the fascial system plays in this, from head to toe. This is besides nutrition, movement, social interaction, meditation, breathing, eye exercises, inflammation, etc, etc. Big thanks for mentioning the Eye Guide. That looks amazing. Hope it is available in the U.S. sometime soon.


Now suggestions of a couple of things: 1). More exploration on the ramifications of mitochondrial dysfunction, all the factors that affect that, and how it can be addressed (so far, all genetic abnormalities affect mitochondrial function). 2) Learn about Stephen Kaufman's Pain Neutralization Technique work on rapidly, effectively improving vagal function. I believe it works reflexively via its effect on the fascial system primarily, but also probably the nervous system.

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July 28, 2021
June 20, 2021
Educative Posts
June 20, 2021

By Milan Hoste

Dear Gary, I really enjoy and admire your educative posts. Thanks to you my lectures at University and my private coaching are better.

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June 20, 2021
March 24, 2021
Parallels with Trauma
March 24, 2021

By Dennis S.

I am 45 years old and I was diagnosed with Parkinson’s in 2015, at an age of 39. I always thought about chronical stress as a possible reason for Parkinson’s and recently I discovered the Polyvagal Theory. I guess similar to you, the parallels between Trauma and Parkinson’s seemed to be quite obvious to me. I had the experience that Somatic Experiencing can be helpful. Later someone recommended your website to me and I feel excited that you see it like I do. Thank you for that. it is always good to know that someone is sharing your point of view. I will read through your articles.

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March 24, 2021
February 4, 2021
Correcting Dysfunctional Sleep
February 4, 2021

By Jacob Kidney, Essential Movements Yoga for Parkinson’s/movement disorders (ET/Dystonia)

I really love reading everything that Gary Sharpe has to write about his experiences with Parkinson's. He is always spot on. I know this is true from my own experience as well. My symptoms are always worse when I don’t sleep well. I love what he says here about sleep being the foundation for symptom reduction and moving in a positive direction.

So what can we do to have better sleep? I would love to hear what everyone does to help them sleep better.

For me, doing some sort of intense exercise earlier in the day and followed by a few different deep relaxation techniques/routines in the evening have dramatically changed my sleep patterns.

My sleep patterns were always very inconsistent all throughout college. Between working full time and full time school I would often go for three or four days at a time with only sleeping three to five hours per night. This pattern persisted for more than four years. It resulted in my tremors and overall health getting worse.

It has taken me two years of persistence to correct these dysfunctional sleep patterns to the point where I can manage my symptoms much more effectively and have begun to move in a positive direction.

This has been done by doing intense exercise every day. This can include biking, running,, hiking, weightlifting, yoga, etc. you need to effectively use the adrenaline in your body or else it is going to exacerbate your symptoms.

Then in the evening I will try a number of different things to help my body wind down and prepare it for sleep. This could include deep breathing, meditation, Yin Yoga, Restorative Yoga, and Yoga Nidra. I always have an air mister defusing essential oils and gentle soothing music while falling asleep.

Also, scheduling daily free time to rest and take a nap if I need it has been invaluable. Especially, right after doing intense exercise.

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February 4, 2021
October 27, 2020
REM Sleep Behaviour Disorder
October 27, 2020

By Darrell L.

REM sleep behaviour disorder (RBD) and the onset of PD

I stumbled on your site while probing the internet for info relating to a sleep disorder known as REM sleep behaviour disorder (RBD). This has been a fixture in my life since I was a child...and has continued into my middle-aged years (I'm 37 now). At times it's been a mere curiosity as it doesn't noticeably disrupt my life to any great extent; however, in the resent years I've been sharing a bed with a partner who is somewhat less of a deep sleeper...so I've been hearing more about my night-time adventures. The curiosity took a bit of a turn when my reading suggested that RBD is a very common marker for the onset of PD. Statistics range from 80-90% of those who develop RBD receiving a PD diagnosis within 10 years. Interesting. From there, I started to investigate possible therapies/treatments. Currently, the sleep disorder could be considered ideopathic. Very little is known about the origins. Aside from lifestyle changes (diet, exercise, caffiene/alcohol intake, sleep hygiene, etc.), Clonazepam is recommended. There's an aversion to this treatment for obvious reasons. Melatonin is another potential option, as is, full spectrum CBD. Beyond these suggestions, there's not much else; however, Clonazepam is used to treat anxiety, so it got me thinking about the potential emotional links that may be embedded in the disorder. This got me thinking about Gabor Mate and his book, ''When the body says No.'' So, with PD and Gabor, I found you!

Such a wealth of information. I've only just scratched the surface, but feel a wellspring of gratitude that it's here. Just delving into the Polyvagal theory...and trying to put together some ideas for a course of action. I don't know that I'll develop PD, but so much of the material here rings true for me...so it's got me thinking about what I can do now.

I'm wondering if you've got any material on this link that exists (PD and RBD)...or if within your network you've encountered those who have story that's similar to mine.

Thank you so much for sharing your own journey. Such a helpful resource.

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October 27, 2020
August 11, 2020
Yoga Therapy
August 11, 2020

By Theresa Conroy, C-IAYT (certified yoga therapist by the International Association of Yoga Therapists).

Gary Sharpe's website provides something invaluable to my Yoga Therapy clients with PD: informed, personal experience. My clients are engaged and knowledgeable about their disease, but they crave real-life input on treatments and wellness. Gary does that with clarity, style and humor. That's why his site is one I often use as a resource for my students.

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August 11, 2020
November 27, 2019
Strategies of Recovery
November 27, 2019

By Babs Meade

Thank you Gary ! Your work is informing my work and life. As a healer-bodyworker, neuromuscular integrative movement therapist, Acupuncturist nerd, Esogetic Colorpuncture person with neuroimmune issues - addressing trauma awareness and recovery for people. Trauma-shock, shake, Reaction Patterns, Adaptations, Addiction. Sorting these out...sorting out strategies of recovery. Nourishment, laughter, music, art, emotions, Soul, Body, Spirit... thankyou Gary Sharpe for your excellent life’s work

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November 27, 2019
September 3, 2019
Applications of Polyvagal Theory
September 3, 2019

By Olivia Streater Lavizzari

I spent the day reading your blog and videos -- SO profoundly MOVED AND AMAZED by what you are doing! It is incredible and wonderful. I wondered if you have the new(ish) book Clinical Applications of Polyvagal Theory. In the chapter on strokes by Deb Dana there is some great stuff that I think could also be applicable to PD. A lot of which you already cover in your blog; things like frozen facial expression etc. Very glad I came across and shared with my professor, who is researching use of Flamenco and Tango in dance movement therapy PD interventions.

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September 3, 2019
May 24, 2019
Hope and Inspiration
May 24, 2019

By Rick Potvin

Your site was the very first thing I read the day I came home from the neurologist with my diagnosis of PD. It gave me so much hope and inspiration that I started the very same day on program of strenuous exercise, diet, etc. I actually picked up my guitar, my one true passion, and thought I can do this. Two years latter I'm still doing it thanks to your insight, research and sharing of knowledge.

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May 24, 2019
February 7, 2019
Headed in the Right Direction
February 7, 2019

By Cheryl Nicholson

I’ve been very inspired by these posts. I have a Parkinson’s client who was in a wheelchair and who would crawl to get places. He’s now able to get up and walk to the washroom on his own. He even went out and shoveled his driveway. We are using targeted nutrition, intentional movements, red light intranasal therapy and Natural Bioenergetics to improve his life. He still has days where he goes backwards, but overall things are headed in the right direction. Many thanks for reporting on your own progress and providing information that helps others!

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February 7, 2019
September 10, 2018
Husband Diagnosed
September 10, 2018

By Kay Pyke

Did a quick search this morning and found the website which has so much info that I’ve been looking for. My husband has just been diagnosed and I’m researching how to help him. This is so inspirational and I’ve forwarded it onto our neuro physio. Oddly enough she came today armed with hand exercises which is what led me to this website. I’m in tears. So happy to have found you.

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September 10, 2018
September 10, 2018
Making Changes
September 10, 2018

By Adam M.

Gary, I want to say a huge thank you for your website! It has been a big help. I’ve changed my diet to fit Dr. Mischley’s recommendations generated by her research. I also bought the smovey rings. Right now I’m doing a Feldenkrais style movement intensive which seems to be helping.

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September 10, 2018
June 21, 2018
Craniosacral Therapy
June 21, 2018

By Sue Watson, Sue Watson Craniosacral Therapy

Hi Gary,
I am so excited to come across such a refreshing approach/understanding of Parkinson's sisease. I am a craniosacral and physiotherapist doing a bit of digging for useful info about gut health and P.d. for a client when I came across your website. I don't know if you have had any experience of craniosacral therapy, but big into the effects of whole systems harmony, polyvagal theory and impact on neurophysiology/psychoneuroendocrinoimmunological etc.

I have recently taken a career break from the NHS to follow my passion for cranial work and develop how I integrate the understanding that comes from cranial teachings with movement based practice. Your findings sit so in harmony with my experience. I have to say that I haven't gone out of my way to look further into similar approaches to P.d. - from what I see on you website, you appear to be pioneering a way forward - is this all your own research, or can you point me to other sources too?

I have worked with a number of Parkinson's clients very effectively, but - as is often the case with 'complementary' approach, the challenge is in embracing quite a different way of thinking - and the medication/grip of disease/anxiety and stress are powerful and seductive hooks. The gentlemen I am looking into gut health for has found after a couple of our sessions, but not all the time, he is able to play piano after 9 years of his tremor being too disruptive. Our next work is with me carrying out cranial work while he is playing and exploring the sensory experience/interoceptive experience of doing so - then looking at ways he can find balance and access that 'place' for himself.

We (therapists) do a lot of work with trauma recovery, establishing resources with - building stronger neural pathways to grounded/balanced CNS states etc., as well as the benefits of the hands on work itself. Familiar with Gabor Mate/Lavine/Roschild etc, all sitting comfortably with how trauma affects movement and inhibition of such.

My experience as a physio in the community has involved lots of work with Parkinson's and increasingly I see the effects of stress and the social engagement system being critical to understanding and improving movement, and in the last 3 years have done much more work with body awareness during activity, whether it be gaining flexibility or strength or balance. The toughest part is engagement especially when the general physio community is not promoting the same message. As you're website implies, it requires such a commitment to your well-being. I totally admire your perseverance and have empathy for how challenging it must be for you at times.

Is your approach being embraced by the professionals researching the rehab/recovery work? I would be really interested to hear more. You may be interested in the work of Body Intelligence/biodynamic craniosacral therapy, Pain is Really Strange (FB and blog site) - although name implies about pain, it's that full mix of what you have been exploring yourself (Steve Haines, craniosacral therapist).

Kind regards, Sue Watson (Scotland)

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June 21, 2018
May 27, 2018
Music is Medicine
May 27, 2018

By Consuela Harper

Gary, I love your approach, and the way you describe and illustrate it so well in this article. Watching the music and dancing video was a true delight. I also read your post about digital music as medicine, and wanted to comment on that because I felt so moved by it. I love this post so much!!! I can relate fully. I've said for a long time that music is medicine for my body. And it's a delight to see the videos of the effects of your music medicine on your body and spirit! :)

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May 27, 2018
April 26, 2018
Social Isolation
April 26, 2018

By Marva Lee Weigelt

What a revolutionary week this has been for me to integrate new understanding, launched by Gary Sharpe’s post about how trauma and chronic dysregulation affects other people’s perceptions of us in social situations. I had a giant aha that helped me understand and have compassion for my own mysterious social isolation as a child and well into adulthood.

Integrating that with my increased awareness after taking a class a year and a half ago and staying in touch through groups like this, I am able to understand that honing my interoception skills allows me to recognize virtually instantly when I am in the presence of a dysregulated person. I’m sure I’ve always done this, but without the comprehension of what’s happening.

I am using this raised awareness to great advantage in my peer support practice, and also observing how I am assisting others with cor-egulation.

Then, last night, in a community ukulele group I lead, I could understand why I was reacting as I was to a young woman who is a beginning player. It is quite clear that the rest of the group is having a similar reaction to her. In fact, one player stayed afterwards to talk to me privately about how the awkward young woman made her feel unaccountably “nervous.” I was so happy to have the language and concepts to help her understand what I thought was happening at the nervous system level. Then she said, “I used to be that way myself,” and I knew I had a new ally in building compassion instead of following the natural, but heartbreaking impulse to avoid and exclude this young person."

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April 26, 2018
March 31, 2018
From Malta
March 31, 2018

By Mildred Atanasio

Hello Dr. Sharpe, I am very glad I came across your videos and messages on facebook! I just want to say a huge thanks as all your info is very useful. My mum was diagnosed last year. In Malta, even medication is limited. But anyway, I have lately also started helping out with managing the page Malta Parkinson's Disease Association, which tries to bring Maltese people with PD (and others) together. I find your articles (and especially your improvement) very admirable and much more helpful! Thank you once again.

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March 31, 2018
March 6, 2018
Impactful Discoveries
March 6, 2018

By Julie Brown Sheil

I really admire this man. Gary Sharpe is a Warrior in the fight against Parkinson’s Disease.

He has been tirelessly researching therapies and documenting their effects along the way so that others can witness how he is healing himself. He also shares them with the world so that others can benefit from them, too.

He has refused to let doctors convince him that there’s nothing that can be done to slow or reverse symptoms. He has refused to become a victim of, or defined by, his disease. The best part is, he’s winning. He’s improving his quality of life (and that of others).

I follow Gary because once I found out I had neurological disease from Post-Concussion Syndrome, I began researching ways to help myself. Even though I don’t have Parkinson’s, I do have a chronic disease and I have found all of Gary’s insights (listed below) to be true in my case as well. Doctors don’t know everything. Specialists only know their specialty. Doctors chase symptoms rather than chasing the cause of the symptoms. Patients who are intimately involved with their own healing do better. Patients who think outside the box can make some impactful discoveries, not only for themselves, but for others.

It’s a sad state of affairs that patients are left to navigate their own recovery and healing. But it can lead to some amazing discoveries.

Gary is the reason I started my Mind Matters Mondays posts. I want my journey to be able to help others, to make it a little less likely that someone will have to struggle to find answers or relief the way I have.

Thank you, Gary, for all that you do!

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March 6, 2018
March 6, 2018
Co-Regulation
March 6, 2018

By D. Hutton

I experience chronic pain on a daily basis due to chronic disease. Chronic pain is mentally and physically exhausting. Part of my self care is co- regulating my nervous system with my husband everyday. We sit quietly, calmly together and observe how our bodies feel, just breathing/existing. We are in physical contact, sitting on the couch. We practice observing how our thoughts, conversation and emotions affect our nervous systems. Sometimes I get very anxious if he shows empathy when I don't want it. Sometimes we just sit quietly. I actually resisted the co regulation aspect of the poly vagal theory, but you were so persistent with this information that I finally tried it out. Life is so much better now!! Thank you for your persistence, dedication, and information Gary Sharpe!

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March 6, 2018
February 6, 2018
Outstanding Information
February 6, 2018

By Brandon Knight

Outstanding information, you are very helpful as you explain what you are feeling in a clear way. Thanks for putting in the effort to make these. Disconnect between the brain and body feels about right to me and I will be making some devices for myself to test out. Just started with sinemet and I am 40 so far it has been a big help my right foot has been about like yours since I was 34. I am not even sure if I have Parkinson's maybe some other dopamine issue have dat scan scheduled seen multiple neurologist and they have not been able to pin it down they are going off medication response at this point thinking it might be a dopamine responsive dystonia. Any way just wanted to thank you for putting these together and explaining that the medication on its own will not be enough. The sinemet gave me to mobility to move with less pain so I can work out again as well as helped me think more clearly but I do believe that it is what you do with the room the medication buys you that will make the difference although I understand we are all different. Thank you again for posting these they do help.

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February 6, 2018
January 21, 2018
Slowing Down Progression
January 21, 2018

By Simon Clarke

I came across your website at a very opportune time - much of your research, information and experience corroborate my own. Many of the PD symptoms (before and after life hacks) you demonstrate in your videos bought a smile to my face, seeing someone else taking a proactive role and showing real progress. Thank you!

I was diagnosed with idiopathic PD at the age of 48. As you know- getting that diagnoses and prognosis ruined my day... and the rest of my life (or so I thought). I went through the various stage of grief and went on Meds with resignation to my fate.

However about 2 years after diagnoses, I had an epiphany (of sorts) and realised I no longer needed to be a victim as there must be some way of alleviating and/or slowing down progression. This led me to shiatsu, yoga, yin tuinna, mindfulness, meditation and to Zhineng QiGOng which I have been doing for the least 2.5 years with great success. During this time, I have searched the web relentlessly (PD trait!!) and come across some useful info..

However I think your website is one of the most comprehensive resources I have seen of all the information and practical, holistic guidance collated in one place. It’s a very useful place to start when looking for a way through PD that encourages the understanding and healing of the entire BodyMind system.

The last week I have been reading Norman Doige's book-the brains way of healing. Full of good information

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January 21, 2018
October 25, 2017
Exploring All the Potential Causes
October 25, 2017

By Ken Howard

May I also add my humble gratitude for all you are doing to help us tackle Parkinson’s. In a recent “Live Loud” session organised by the Cardiff branch of Parkinson’s UK, we were asked to nominate someone who has inspired us to fight against this pernicious disease. I nominate you, Gary! You have shown me that we should not give in and accept the inevitable, but should keep on fighting! Rule 1 in any battle is “know your enemy”. You have been tireless in exploring all the potential causes - physical, chemical and psychological, and sharing your findings with us. Secondly, you have amazed us with your enthusiastic approach to trying any potential treatment, no matter how obscure it may seem. I am trying out many of these, principally the exercise, diet and mindfulness related therapies. These have helped me significantly, and I’m particularly interested in your research into the Vagus nerve issues. Please keep up the good work - I shall keep on fighting with you!

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October 25, 2017
September 10, 2017
Can-Do Attitude
September 10, 2017

By Tina Gebhart:

Gary, I may have been researching before finding your page, but your consistent encouragement, posting of your supplement and exercise trials, and general can-do attitude have been super motivating for me. I would not have gone gangbusters on this fish oil and fasting thing if I had not seen your experimental models. I may not have built up the nerve to go against my first neurologist and then find a better, awesome one. Thank you a million times over. I consider you my big brother, as sappy as that may sound.

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September 10, 2017
August 28, 2017
Connecting the Dots
August 28, 2017

By Gregory Layer:

Gary, you are a gift to this world. Your effort to connect the dots of our daily life and daily choices to our long term health and how disease manifests in our bodies is making a huge difference in my life. I am inspired by your work but more importantly, I am inspired by the spirit with which you share your experience with others. Keep up the great work and know that you are loved and appreciated, just as you are!

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August 28, 2017

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