I recall seeing a news item on the television about how medical researchers had taken people with Parkinson's Disease and asked them just to think about moving. With one group, they used an MRI scanner to help the group members think in ways which lit up various motor areas of the brain. The second group were just told to think about it without brain monitoring. Apparently, the first group showed significant reduction in the symptoms, whereas little changed for the second.
I have been thinking about this a lot and experimenting with the potentials. Although I have no MRI scanner to check, it seems to me that, with all my practicing of mirroring the dancing of people in music videos, I can indeed now help myself to switch movement back on through mirroring the dance in my mind - without actually physically moving. If so, this has a major advantage in that it does not require the large energy spend of pushing through freeze, pain and stiffness when opening up movement via actual large physical movements.
There is nothing far fetched about this, because similar techniques have been proven, for example the building of muscle mass by imagining lifting weights. Indeed, although I am not physically moving much, I do get twitches and spasms of my muscles when I get into the zone of imagining the dance. As evidence that this may be an idea worth pursuing, I have included a couple of photos I just took of myself to show the definition of my arm muscles. Given that back in January I had no muscle mass at all, and indeed was in danger of muscle wastage problems, and that I don't do any weights or aerobic exercises at all [to avoid oxygen deprivation to the brain - the only types of exercise I have done is what you see in my video diaries], I find the large physical changes in my muscle definition quite remarkable.
Certainly, whether I am correct or not that the mind dancing has significantly contributed to this change, these photos do show there are obvious health and wellness benefits to the gentle movement therapies I have been developing. I believe that this kind of muscle growth is unusual in Parkinson's, which is often associated with muscle atrophy. At the very least, they show that something about our Out-Thinking Parkinson's ideas is indeed working.
One other very important point to share on this subject. Oddly, I can't "mind dance" when I'm very symptomatic or very tired. Then I am also frozen and immobile in my imagination too! Trying to push or maintain the image of myself dancing then just results in a rapid drain of mental energies. The fact that I have Parkinson's in my mind too might tell us something important about the nature of the disease.
We know that dopamine has different roles in different areas of the brain, such as for motor control, motivation, and reward, but dopamine also controls so-called “Go” and “No Go” processes, governing “action” or “inaction”.
As I've improved my condition, both mental and physical, I'm more able to tune in to what is actually happening in my mind and body when the Parkinson's takes hold. As I've pushed the envelope of my understanding and incorporated more interventions into my own life, tested, tried, self-experimented, it has become clearer to me...
Now for the very good news. Since we now understand that PD is principally a problem with the Nervous System, it is entirely possible that we can pro-actively prevent further degeneration, and even regain what we've already lost, because Vagal Tone can always be improved, neurons regenerated, neural pathways re-written, and senses retrained
Here is the book review for the new book on Parkinson's (search for "Lilian Sjoeberg" on your local amazon and the book should come up).
Dysregulation in the DAT ferrying system is associated with a number of chronic conditions, including ADHD, Bipolar, depression, eating disorders, substance abuse, Parkinson’s, and dystonia. If there is too much DAT activity, it means that there is a deficiency in active Dopamine outside the cell, as it is being pulled back inside the cell constantly.
In Part 1, we looked at how the MAO enzyme breaks down Dopamine in the brain and body, via what we termed the “MAO pathway”. In this part, we consider another pathway by which Dopamine is broken down, via another enzyme called Catechol-O-methyltransferase (COMT).
Indeed, I was recently contacted on this topic by Dave Faller, a person with a PD diagnosis, who has been exploring ways to help himself. Dave has written a very useful two page summary of Janice’s “Stuck on Pause” book and other work, and so I asked him if we could reproduce it here. He agreed, and hence the article below.
In this follow up article, we will explore the various ways by which dopamine is chemically broken down, degraded, or metabolized. In doing so, we will provide yet another, more hopeful, story, that the reversible problem may be more to do with the breakdown of dopamine occurring too fast after it has been synthesized, rather than cells dying.
In recently re-reading this excellent article, it struck me that, as part of their own literature review, the authors describe what it is like on the inside to be in the fright response, and hence according to my thesis, what is like to be symptomatic with PD.
In reality, the interactions between very many different neurotransmitters is super strong. It is not just the lack of one chemical that causes the problems in many cases, but actually it is the resulting lack of balance with other chemicals.
At that time, I had not quite perfected my routine or sleep quality. I am now doing quite well with it, and my sleep is much better than it has probably ever been. So in this second part, I will just do a show and tell about the things I ended up implementing that actually worked for me, in case this is helpful for anyone else to follow.
I am working with folks with movement disorders to explore the use of neurofeedback and photobiomodulation to aid them in their recovery. In this article, I cover my background, and how I arrived at these as a solution.
I began following this line of research, and I discovered very many curious inter-relationships and joined up a number of seemingly disparate dots.... dots which would never have been connected by the specialist-centric nature of our healthcare systems!
I have been working in the fascia system for twenty three years and have come to understand this system intimately. Spending over 60,000 hours working on both patients, and myself, the changes I have seen from Fascia Decompression, is helping people all over the world.
If I had been seen by the neurologist only, then I simply would never have received the intensive physiotherapy for thoracic outlet - which did relieve the very worst of the pains, numbness and pins and needles sensations. However, I know from networking extensively with other people diagnosed with PD, many neurologists routinely discount injuries and body traumas as contributing factors and ascribe virtually all symptoms, including those more normally associated with nerve damage, to the Parkinson's.
I will cover below how I managed to resolve this for myself, and then we will look at the potential mechanisms of why constipation and PD symptoms are linked, I will first explain my self-observations which lead me to this conclusion.
The Endocannabinoid System (eCBS) runs throughout our bodies and brains, and, as we will see, seems to have many of the functions we currently ascribe to the Autonomic Nervous System and the Vagus Nerve, or at least is a parallel system for these functions. This includes having a vital role in regulating stress and dopamine, indicating this system is likely to be highly relevant to Parkinson’s Disease.
Fortunately, from the perspective that tremors are a manifestation of a stuck stress response, this type of symptom can be progressively alleviated through stress reduction techniques and therapy, by learning how to calm the nervous system, and by spending more time in totally relaxed states. Indeed, this is demonstrated in videos of people’s tremors disappearing when they are put into a trance state by a hypnotherapist, as in the video below, or by common anecdotal reports that when meditating, the tremors are not present.
This is a follow on from previous articles on the subjects of the roles of lack of oxygen to the brain, the neck and breathing problems in Parkinson’s Disease. Here, we focus on the potentially profound role of special chemical sensors in our necks, which most people affected by PD will never have heard of, called “carotid bodies”.
I have used three hours a day for three years (more than three thousand hours) searching the internet for videos and studies that could give me answers. When I made my small test experiment with people with different diseases, I found that I could help them all with stress reduction. Regardless of diagnosis, I could help them reduce symptoms.
What was needed was for someone to gather and review all the research done on HDT for PD so far, collect all the anecdotes of what has and hasn’t worked for individuals with PD, and to resurrect as much of Dr C.'s knowledge, experiences and wisdom as possible. Then to pull it together and come up with a working plan or a guidebook for other people with PD to follow in order to try to optimize HDT the potential benefits of for themselves.
It is in the nature of chronic diseases that symptoms manifest most when our survival instincts (fight, flight, freeze) take over our body's function. This is why the severity and range of symptoms can vary moment to moment, hour to hour, or day by day, according to how stressed or how relaxed we are in that moment, for most chronic diseases. Here, I use the word stress in its widest possible interpretation, to denote anything which may be troubling us in the present moment, e.g. feelings, accidents, trauma, troublesome relationships, financial problems, small unresolved situations from childhood, that may seem insignificant to an adult.
By Florencia Cerruti, person with Parkinson’s Disease and author of Rebirth at 50: in the end, it was not The End.
Very shortly after my diagnosis of Parkinson's disease at age forty seven, I asked a neurologist how long I should work. His answer was: "Until the last day that the disease allows it." His words echoed within me: what would happen that day? Would I be the one to decide or would it be my colleagues and bosses at work who would warn me before I had the chance to decide? What would the signal be? In any case, what would it be like to work until the last day the disorder would allow me to?
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.
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.
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.
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.
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.
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!
A Guest article bty Toine Schoutens, Propeaq
Several years on, that conversation is evolving and one technology that continues to attract attention is our wearable technology, in the form of light glasses. Light glasses are a type of light therapy device, ours are using blue light, delivered through the eyes. The idea behind this approach is that specific wavelengths of light may help support the sleep/wake rhythm which is often disrupted in people with Parkinson’s.