Introduction: Sense of Safety and Sense of Danger
Nervous System Framework
A pragmatic and predictive framework for understanding Idiopathic Parkinson’s Disease is that PD occurs when we get stuck in the freeze/immobilization/death feigning stress response of our Nervous System programs. In essence, our subconscious sense, or “neuroception”, of safety/danger in our internal and external environments has become insensitive to cues of safeness, but hyper-sensitive to signs of potential threats. This subconscious, but overwhelming, sense of danger puts our system in to a shutdown or hibernatory-like state to wait it out until the danger has passed. Exogenous dopamine supplementation then signals the body and brain to feel more secure, and hence provides temporary relief from the hibernation state.
This framework predicts that to ameliorate symptoms, we need to build as many cues of safety that we can into our environment, and also learn how to tune into these better, whilst also minimizing our exposure and sensitivity to sources of perceived danger. Symptom reduction can therefore be accomplished through taking actions such as addressing inflammation, infections, and injuries, in order to downregulate alarms arising from within our interoceptive environment, or removing ourselves from stressful situations and being very careful about the company we keep in our external milieu.
It is for this reason that I believe one of the most impactful actions people with PD can take to help themselves is to stop consuming News Media, which is literally designed to hack the fear programs of the Nervous System to keep our attention. Similarly, I recommend watching comedy and romantic films and television, in preference to horror, thriller and crime genres. It is also why, in my recent article on Relationships and PD, I wrote:
“what people with PD need most of all is to be surrounded by caregivers, therapists and healthcare providers who can act as well-balanced co-regulators, who can beam ventral vagal states at us, constantly send us strong cues of safety, be our anchors to calm, poise and grace, and help us feel that we are seen, heard, unthreatened and valued”.
Body Budgeting Framework
The above predictions and recommendations would also seem to concur with those arising from an alternative, but related, framework, namely the Body Budget concept of neuroscientist and psychologist Prof. Lisa Feldman Barrett. The following summary of this concept is adapted from Prof. Feldman Barrett’s book How Emotions are Made: The Secret Life of the Brain.
When the brain moves any part of the body, inside or out, it spends some of its energy resources.
The body’s resources are recovered by eating, drinking, and sleeping, and spending is reduced by relaxing or being with loved ones.
The brain constantly forecasts a budget for the body, making prediction using past experience as a guide.
When the brain predicts that the body will need a quick burst of energy, it instructs the adrenal gland to release cortisol, flood the bloodstream with glucose, breathe more deeply, dilate arteries.
Withdrawals from the body’s budget don’t require actual physical movements, e.g. upon seeing an antagonistic person in the street the brain makes a budget withdrawal, releasing cortisol and glucose.
Just viewing pictures of animals, flowers, babies, food, money, guns, surfers, skydivers, car crashes, impact the body budget, and images which prepare the body to fight or flee result in withdrawals even if the viewer is not moving and has no conscious plan to move.
Even imagining stressful situations can result in withdrawals.
Other people can positively co-regulate the body budget too.
With friends, parents, children, lovers, teammates, therapist, or other close companions, the brain synchronize breathing, heart beats, and other physical signals, leading to tangible benefits.
Holding hands with loved ones, or even keeping their photo on the desk at work, reduces activation in the body-budgeting regions and makes pain less bothersome.
The body-budgeting regions keep predicting adjustments to the budget long after the predicted need is over, and may take a long time to calm down, even if there is nothing wrong.
Whenever a big deposit or withdrawal from the body budget is made, e.g. eating, exercising, an injuring, the body has to wait for the brain to catch up.
In this framework, then, Idiopathic PD is what happens when the body budget is exhausted, and the brain has become desensitized to the factors which result in deposits, associated with safety, yet hyper-sensitized to factors linked to perception of threats and danger that result in withdrawals. The body budget can then never build up any reserves. In this way, similar predictions as to what will help or hinder progressive symptom reduction follow as above. Exogenous dopamine supplementation then provides a time-limited deposit to the body budget, and allows temporary relief.
Cell Danger Response Framework
A third semi-equivalent framework, this time at the cellular level, is the Cell Danger Response of Dr Robert Naviaux. In this framework, Idiopathic PD occurs when the cells of the body are stuck in a threat response mode, which again puts the body into a hibernatory state. The interventions which help to dial down the cell danger response are again those things associated with safety above, while those that make it worse are associated with danger and threat, inside and out.
Getting Through “Off” Periods
After a few years of dopamine supplementation, e.g. via medicines for PD, this tends to become less and less effective as a strategy, and people with PD begin to experience longer and longer periods during which we return to the hibernatory state. These are known as “off” periods in the PD community.
Indeed, unfortunately I only began to take responsibility for my own condition, and began to do everything I can to reduce my own symptoms, well after the honeymoon period of dopamine supplementation was over, six years after diagnosis, by which time I was already experiencing prolonged off periods.
Thus, for some years now, I encounter many such off periods per day as each dose of my Parkinson's drugs wear off and I re-freeze before the next dose kicked in. This resulted in lots of long hours every day where I could not do much at all but lie on the bed, in some pain, physical discomfort, and mental anguish. During these off periods, I could not stand or walk around for very long, due to balance issues and the shear energy expenditure of standing against the feeling of being crushed to the ground by gravity. Neither could I sit for very long, because the dystonia in my neck would cut off the blood supply to my head, and I would rapidly become even more frozen and feel like a zombie. I had a lot of fear around each dose of drugs running out, and the next off period starting, so that I would in effect become re-traumatized each time. Any stress or signs of danger in my environment at all would make the situation much, much worse.
All I could do was stare into space, lost in anxiety, or else try to distract myself by watching television. I eventually realized that avoiding the news, violence, tension, horror, drama, and anything which might show negative emotions being expressed on faces, in voices or through body language, on the TV was essential, as these would act as social cues of danger/threat to my over-sensitized subconscious neuroception, making the frozen state worse. On the other hand, I realized that watching light entertainment, comedy, upbeat, feel good, romantic or quiz shows (people at play) could be helpful, at least alleviating some of the fear, as well as making it more likely that the next dose would kick in sooner, because these images and sounds were sending social cues of safety to my system.
A First Taste of Podcasts as Therapy
I first began to realize that podcast-style shows could be an even more therapeutic way to get through off periods, when my friend, bodyworker and musician Michael Hamm started the Embodied Happy Hour Livestream podcast over on his Neurofascial Approach facebook page, about a year ago. Michael explained from the outset that one of his purposes was to experiment with online media/social networks as a way to provide social engagement nourishment, social cues of safety, and a friendly presence, remotely.
I quickly felt this experiment to be very successful. Michael has a kind and expressive face, a prosodic quality of voice, and makes the viewer feel seen and part of a conversation, looking directly in to camera, and is very engaging due to his performance arts training. He keeps it light hearted and fun, with jokes and impressions, yet covers topics which are deep and impactful, and imparts knowledge of anatomy and physiology with pragmatic outcomes for healing, all whilst maintaining a real time connection with viewers via interacting with their comments during the livestream..
I began looking forward to his podcast each week, as I knew there will be one or two hours of my off periods where I could just lie back and watch, during which time my nervous system would feel socially engaged, connected with, seen, safe, present with someone very kind and compassionate. This sense of safety did indeed allow me to breeze through the downtime with less discomfort and fear, so for me, Michael's concept was totally validated.
Further Explorations
Following on from my evaluation of Michael's experiments, I decided I would seek out more examples which could have similar therapeutic value, and began spend most of my off time watching such podcasts. I particular, I discovered subjects which interest me, featuring people who are calm, positive and engaged, with styles that make one feel like part of a conversation, featuring people who I think I would feel safe with in real life. Conversations which inspire me, instil a sense of curiosity and learning, make me feel engaged with, give me moments of joy, empathy, compassion, connection or hope are the ones which I am finding work best. This does feel like a much more therapeutic way to get through the day. It also provides a sense of being more productive, since even though I have a lot of enforced downtime, at least I'm learning new things, many of which are actionable and pragmatic, and hence this also assuages some of the feelings that my life is being stolen by PD.
Curiosity and learning
I particularly want to emphasise the curiosity and learning element of this concept as being therapeutic very particularly for people with PD. According to the science journal article States of Curiosity Modulate Hippocampus-Dependent Learning via the Dopaminergic Circuit, curiosity increases the dopamine release in reward and motivation parts of the brain, including in the Substantia Nigra, the part of the brain that is supposed to be problematic in PD.
Where I am now at
A testament to the concepts covered here, is my own progress during the past year or two, implementing this “podcasts as therapy” idea as part of a package aimed at sending strong signals of safety to my body and brain, and eliminating as many cues of danger or threat to my internal and external environments as possible.
I still experience significant off periods each day, but these are now definitely less in number, less prolonged, and less problematic. I am no longer terrified of the off periods, and am much more accepting of them. Often, I even welcome them as an opportunity to rest, and be in company with “good friends” from the podcast world. I can sit up and also move around for much longer whilst off without becoming exhausted, so I am not being forced to lie down as much. Some days, I can even get through the whole day without being forced to lie on the bed even once.
Suggested Podcasts
Everyone will have different tastes and there are now practically infinite types of podcasts to choose from, so finding the podcasts which speak to each us individually, and also, importantly, which don’t trigger us, will be a very personal journey. Nevertheless, below I’ve included some suggestions of what has helped me most, in case this helps others to get started too.
As an aside, I watch these at a distance, and on my TV screen, not directly on my laptop screen. I believe this is an important component, since looking at screens which are too close can put the nervous system in a state of stress, due to mimicking tunnel vision which occurs during fight-or-flight, but also because we tend not to put our faces anywhere near that close when conversing in real life, and when we do, it is usually highly confrontational.
A further point to note is to be mindful of the algorithms of social media platforms, which tend to take us down dark paths and once more highjack our fear centers for attention. Beware of getting of sucked in to political or ideological echo chambers, and avoid confrontational, argumentative or controversial topics. Remember always that the therapeutic objective is to increase the sense of safety.
Embodied Happy Hour
with Michael Hamm, a series of seminars/tutorials via facebook livestreams on all things embodiment, manual therapy, anatomy, physiology, and fascia. This now forms a large body of work with information which is seminal. Always entertaining, educational, empowering, inclusive and interactive with the live part of the audience, Mike combines performance art and very deep knowledge and many years of hands-on experience to create something very unique. As such, I undertook to create an index of these, with titles and direct links to the videos. I have uploaded this index as a file to the Out-Thinking Parkinson’s facebook group archives.
Feel Better, Live More
with Dr Rangan Chatterjee, a forward thinking medical doctor from the UK, who is on his own healing journey, covering topics on pragmatic lifestyles choices, behaviour changes and self-healing modalities which can improve health and wellbeing.
Impact Theory
with entrepreneur Tom Bilyeu, inspirational stories on topics of growth mindset, resilience, health and agency, probably one of the world’s most skilled interviewers.
Lex Fridman Podcast
with scientist Lex Fridman, a wide range of interesting topics and people, including science and technology, with a humanist ethos.
Huberman Lab
with neuroscientist Prof. Andrew Huberman, a lecture series on practical and free tools for optimizing health based on the very latest Neuroscience and human biology research. This podcast, in particular, contains vital information for people with PD. Below, for example, I’ve extracted from the podcast episode timestamps where Prof. Huberman talks about dopamine in particular,