Why "Idiopathic" Wasn't Good Enough
As for many people with young onset forms of Parkinson's Disease, my diagnosis was given the label "Idiopathic". This term, Idiopathic, is used to denote any disease or condition which arises spontaneously or for which the cause is unknown. This diagnosis was wholly unsatisfactory to me, as I'm a person who needs to know the "why" of things (we will return to this "nature" of my "personality" later in the narrative).
Nevertheless, it took me over six years of burying my head in the sand and allowing rapid decline, before I started asking the "why" question. I now understand that the reason for this very long delay was due to the manner in which my diagnosis was delivered, the narrative of which can be found in
IMPACTS OF DIAGNOSIS ON PARKINSON'S DISEASE,
which, I now realize, re-traumatized me, and caused me to go even further into a state of shock. It literally kept me too frozen inside to face and accept the diagnosis, or its implications.
When I finally did start asking the questions, and seeking the answers, something else in my personality made me pursue this relentlessly: to leave no stone unturned; to not accept the dogma and indoctrinated thinking of others; to be prepared to rip it up and start again... and again... and again; to understand how the small details of a very complex jigsaw puzzle fitted in a much bigger picture.
An important milestone along the way was learning about the Vagus Nerve, especially through Cheryl Townsley's work. This led me onto discovering the work on Polyvagal Theory of Dr Stephen Porges. The Vagus Nerve line of enquiry helped me understand the strong connections between dysregulations/disruptions of the Nervous System and real world experiences of Parkinson's Disease from the insider's perspective. From there, it became clearer to me that people with PD are stuck in the "freeze" or "death feigning" stress response of the human Nervous System. Eventually all the pieces of my PD puzzle slotted into place with the realization that my "Dorsal Vagus Nerve", responsible for that immobilization response, has become permanently activated.
At around the same time, now in communication with a large worldwide network of people with PD, and chronic illnesses more generally, as well as caregivers and therapists of all kinds, I started to notice many commonalities in those of us who had an Idiopathic PD diagnosis. Back then, I conceptualized these commonalities as "personality" traits, a concept which I now know not be quite correct, as I will cover below. I pursued this observation further by undertaking surveys of people with PD in facebook groups and forums. The results of this confirmed for me that there are indeed very common attitudes and behaviours amongst us, which many of us exhibited for years prior to the eventual diagnosis. At the time, I wrote an article on facebook based on these observations called "When the Mighty Oak Falls", which seemed to strike a chord with very many people - for completeness, I have included this in its original form, at the end of this section.
By then, I was discovering that many other people had previously come to similar conclusions around "personality types", including Elaine Godley in people with cancer. The close correspondence of the the profile of people with Dystonia that Dr Joaquin Farias had uncovered, through working with thousands of clients with that set of conditions, was remarkably descriptive of my own observations too.
"When The Mighty Oak Falls"
"One of my major themes of interest right now concerns common patterns of behaviors and personality traits in those of us who go on to develop movement disorders and chronic illnesses, all of which I now see as coming under the umbrella term "Nervous System Dysregulation". My evidence is not clinical, but is gleaned from talking and sharing of experiences with hundreds of people who have or have had such health issues themselves, from all over the world. In other words, it is gleaned from the real world of people like me, and it comes from asking the right questions which haven't been postulated before.
What I've found in the background histories, time and again, is that in many of those of us who become "dysregulated" or "disordered" have in the prelude to our health issues, tended to make ourselves into Mighty Oaks trees, isolated and standing alone in a field. The origins of this seems in many cases to arise in the acorns of rejection, abandonment and unrequited love. In order to protect ourselves from such harms in the future, we become fiercely independent, black belts at emotional "self-defence". We take on more and more responsibility on to our own shoulders, (in the very mistaken idea that by gathering Power to ourselves, we can take more control of our own lives), we begin to refuse to accept or ask for help from others and become the worlds worse delegators.
We make ourselves "strong" and "unbreakable", but we also make ourselves top heavy in the pursuit of taking on more and more in the mistaken belief we can control the world around us this way. We isolate ourselves, pushing others away, so we grow alone in the field, instead of in the safety of the forest surround by others who could support us. We become more determined, more set in our ways, and we do feel stronger as we grow.
Then the hurricane comes. An event we have no control over. We don't break. We are uprooted wholesale. We simply fall over.
I have said many times now that there can be no chemical cure for those of us with such disorders and diseases, and I sincerely believe that, because its just a sticking plaster fix for the true origins of our health problems, which lie in such patterns of behaviour.
In my conversations with others, I see two major outcomes in people with Nervous System Dysregulation symptoms, and these outcomes depending markedly on attitudes.
The first outcome is rapid decline, as in those of us continue to fall over and for whom the Oak begins to rot from the inside most rapidly. This tends to be truest in those of us who simply want to return to our old lives, to keep going exactly the way we were before. It usually therefore involves a very rigid sense of self, a holding on to their Oak personality for dear life, with a very strong sense that this aspect is their true self, and indeed is something to be celebrated.
In my view and understanding, a chemical cure in this case would simply be the unnatural uprighting and replanting of the unsupported Oak Tree. But if nothing has changed in this resetting it simply stands to reason when the next hurricane comes again, the Oak will simply fall over again. But now, already made susceptible to falling over, it won't take a hurricane this time, perhaps just a gale.
The second outcome is in the getting better, partial recovery, living well with the disease, slowest decline or being happy anyway. The common factor in all of the people I know who are like this is that they have realized the folly of the Oak. They know they cannot simply stand up in the form they were before.
They have all gone through a process of change, of evolution, and they're all evolving in to Willow Trees, in the heart of the forest. They accept help and support of others around them. They seek out water and nutrients. They become flexible in nature. In short, they not only embrace change in themselves, but learn to bend with the wind of changes which they have, and can never have, any control over."
The Impacts of Shock Trauma
My studies of the Vagus Nerve naturally led me down a path to learning about how trauma disrupts or "dysregulates" the human Nervous System, and what the outcomes of this are. At first, I considered trauma just as a shocking or near death event, such as being attacked or an accident. Exploring this in my own case, I had a revelation through recall of a hidden memory from when I was thirteen of a near drowning event, from which I was only saved at the last minute, after my Nervous System had already given up and I was sinking, my body and brain immobilzed, which is explored in
HOW A DOG IN THE FAMILY HELPED ME TO UNDERSTAND MY PARKINSON'S DISEASE.
I knew then that this "forgotten" event had been a life changing one, since the resurfaced memory itself struck abject terror in me upon remembering, but also because I could connect its timing with a sudden change in my personality and the emergence of severe IBS. I also learned from pursuing this about how anoxia or hypoxia events, where the brain is starved of oxygen, can have progressive degenerative effects on the brain long after the incident itself, with emergent symptoms not dissimilar to those of many chronic illnesses:
LACK OF OXYGEN TO THE BRAIN IN PARKINSON'S DISEASE.
I now understood that my Nervous System had learned and experienced how to feign death via my near drowning, and this strong activation of the "freeze" response in me has had profound and lasting effects on my life.
Intrigued, I once again took online surveys of people with chronic diseases, and found almost universally, that physical shock trauma events lurked in the background in the years prior to diagnosis. Car crashes, accidents and falls were widely reported. Severe injuries to neck, shoulders, back, hips and knees appear abound in people with chronic illness. Nerve entrapment or pinching is also very common, and, for example, I had a dual diagnosis of Idiopathic PD but also Thoracic Outlet Syndrome, a condition where nerves and arteries get trapped in the neck/shoulder region.
I was struck, however, by one correspondent who related to me how their own near death experience was purely emotional. When a girlfriend at college had unexpectedly told him that she was leaving him, he went into a profound out-of-body experience, and described how this shock had changed him mentally and physically, and what the lasting effects of this have been on his life too. This reminded of less severe, but still very profound, effects that a series of a rejections and abandonments by girls and women in my life had had on me, the shocks of which sometimes reverberated for years.
I then began to realize that impacts and mental injuries from emotional trauma can be, and are, just as real as from those arising from physical shock. Once again, I pursued this line of enquiry, and sought feedback from my network. I discovered that emotional traumas also abounded in the background histories of people with chronic illness, often proceeding any physical trauma. I was horrified to learn just how common incidents of child abuse and neglect, rape, psychological torture, unresolved grief and loss are in chronic illness populations.
As I began to delve into these areas of trauma more deeply, I was greatly helped along the way by discovery of Irene Lyon and Lisa Elliot and their facebook groups, Healthy Nervous System Revolution and Vagus Study Group, respectively. I had begun to understand that the physical and emotional/mental affects of trauma and chronic stress manifest in ways which are remarkably similar to the "symptoms" of many chronic illnesses,
THE OVERLAPS BETWEEN STRESS AND PARKINSON'S DISEASE, PART 1,
THE OVERLAPS BETWEEN STRESS AND PARKINSON'S DISEASE, PART 2,
but what these forums allowed to be glean was that trauma can be healed with the right combinations of therapies. This supported my observation and shared experiences of my network that progressive symptom reduction is actually possible in chronic illnesses. Moreover, the very forms of therapies I had self-discovered and self-applied, which have helped me and others to reduce symptoms, were remarkably similar to Irene's methods for healing trauma.
These forums also led me on to Adverse Childhood Experiences and the area of Development Trauma, and a mature, hard science which has proven time and again through repeated studies from all over the world, that there is a very direct link between traumas in infancy/childhood and incidence rates of trauma/chronic disease in later life.
The Lasting Effects of Early Trauma
I first began to understand the role of Adverse Childhood Experiences (ACEs) in my own case, when, based on repeated recommendations by Irene Lyon, I began to explore the work of Dr Gabor Mate, starting with his book, "When the Body Says No".
Like many, I found reading this book very difficult, very triggering and very disturbing, but it was the revelation I needed. The book also introduced me to the scientific field of "Psychoneuroendocrinoimmunology (PNEI)", which Wikipedia defines as "the study of the interaction between psychological processes and the nervous and immune systems of the human body: an interdisciplinary approach...".
This introduction gave me the certain knowledge that the brain and body and mental and physical health are absolutely non-separable, and that long term effects of emotional trauma on the body, and of physical trauma on the mind, are now very well established by a mature, robust and hard science. Starting from Dr Mate's work, I researched further and found that indeed such mind-body-emotions connectivity concepts are not just some alternative or eastern philosophy, but are absolutely proven in traditional, mainstream western science too.
In "When the Body Says No", Dr Mate uses a series of cases studies from his clinical practice, as well as those of the lives of famous people, supported by the scientific research, in order to demonstrate that many idiopathic chronic illnesses can be directly linked to specific lifelong modes of behaviours, thought processes and relationship styles.
Where this becomes very difficult for those with such chronic illnesses is the dawning realization that, through his illustrative case notes, Dr Mate is describing ourselves: in parts it can seem that he is writing the story of our own lives. Moreover, the book uncovers a very hard truth. The very parts of ourselves we consider so strongly to be our "self-identity" are not inherent personality traits at all, but what Dr Mate refers to as "inappropriate coping styles".
These coping strategies are actually patterns of responses learned through emotional or physical trauma, especially in early life, which at the time did exactly the job they were designed to do, and allowed us to survive. However, because we humans tend to get stuck in the events of the traumas and can't move forwards, we also got stuck in these high stress patterns of behaviour.
Continued onwards into adult or later life, these trauma induced coping styles become inappropriate to the context, causing us to live our lives almost perpetually in fight-flight-or-freeze stressed states. These coping styles are what make us lose connection with the present, have little sense joy or aliveness in the now, turn our relationships toxic, cause addictive and obsessive-compulsive behaviours, feelings of shame and guilt, etc., thus contributing greatly to our susceptibility to idiopathic chronic illnesses.
The books most disturbing revelation is that people with such illnesses actually tend to have a super-strong, rigid sense of self, that we feel pride in and hold dear. However, according to Dr Mate. the very "personality traits" by which we define our prideful strong sense of self, are actually, precisely, the behaviour patterns of the inappropriate coping strategies or maladaptive survival styles we learned through getting stuck in trauma!
From here, I turned once more to my network and gently probed other people with chronic illnesses as to whether they would describe their personality traits and patterns of behaviour, prior to diagnosis, in ways which matches up with what Dr Mate outlines. Indeed, the similarities to what the book describes and the real lives and case histories of people with chronic illness I found was startling in the similarities.
Based on this research, I started to explore my own early years and assess whether ACE factors could be relevant in my own case. Indeed, after my Mum asked me once "why do you think you were always so sensitive?", we were able to have a full, frank and open discussion about events around my own birth and early upbringing. I won't go in to details here, but sufficit it to say we discovered I ticked very many of the ACE boxes, including being born premature, Caesarean, poor feeder, not breast fed. My ACE score is well into the danger zone of the significant likelihood of chronic illness in later life, as proven by repeated ACE studies all over the world.
I was now back to the beginning of my own story, but also just beginning to understand how the trauma perspective of idiopathic chronic disease now gave me renewed hope. Through my ongoing networking and research, I had found a myriad of methods which can heal our traumas, but moreover, a vast array of people around the world, who, through applying various trauma healing modalities, had indeed managed to significantly reduce their own symptoms, recover or partially recover from many conditions. This included illnesses which some medical doctors believe to be "incurable" or "degenerative" or "hopeless cases".
Enjoying the Ride of the Healing Journey
Along the way of my own journey to an understanding that many instances of chronic illness are neither idiopathic nor pathological, but are rooted in developmental and shock trauma, I discovered many therapeutic modalities which can help to heal the brain, emotions and body, this reducing symptoms and pain. Researching and applying these has indeed helped improve my condition, and this feedback loop provided me the continual supply of hope to carry on, knowing that further progressive reduction of my symptoms is always achievable long term.
The beauty of these "somatic" or "trauma healing" methods, unlike some forms of psychotherapy, don't require us to keep revisiting or reliving the trauma, but allow us to heal even if we have no explicit memory of the events themselves, such as in the case of prenatal or in infantile traumas. However, these methods are no quick fixes, but take time, sometimes years, to undo the traumatic damage, because they lead to wholesale reconfiguration of the body, brain, nervous and endocrine systems, and, especially after a lifetime living in survival mode, this "neural rewiring" takes time to be written into the human biological code.
From Cheryl Townsley, I learned about the importance of the health of the vagus and other cranial nerves, and how these could be "reset" by simple electrical sparking and tapping methods, to provide in-the-moment stress relief, and many other such simple stress interruption techniques too. I discovered for myself that, if consistently and persistently applied over time, these do help the biological system relax and re-establishes the functionality of atrophied cranial nerves. I also learned profound lessons about the vital role of the eyes in overall health and of vision in voluntary movements of the body, as well as the importance of living in the now.
From Irene Lyon, I learned about the importance of reconnecting the mind and body, re-establishing and re-building proprioception (the senses of position, motion and equilibrium of our own body parts), and interoception (the senses and understanding of whats going on inside our own bodies), and also reconnecting our bodies with the surrounding physical world. I learned simple techniques such as orienting, self-touch, and grounding in order to strengthen the "self-regulation" of my own nervous system. I learned about how "somatic experiencing" of the voluntary movement of the body could quieten the mind. I also learned about the folly of suppressing and repressing our emotions and biological functions, especially in wearing emotionless "masks" via our faces, and the folly of feeling guilt and shame for feeling our own feelings. Irene taught me about the vital need for healthy aggression and the biological imperative for expressing anger in healthy, socially acceptable ways.
I was introduced to the work of Dr Joaquin Farias, a specialist in healing all forms of dystonia, by Kim Amburgey, who was at the time an admin of Dystonia Nutrition and Wellness facebook group, and who was already in partial recovery from cervical dystonia herself. Kim had personally been to a workshop with Dr Farias, and this was a huge factor in her remarkable recovery, through applying daily the techniques he'd provided.
From Dr Farias's work, I learned about the critical role of Primitive Reflexes, a set of mainly defensive reflex actions which we are all born with, but become integrated into our somatic movements with healthy nervous system development at an early age. I learned how the maladapted re-emergence of these reflexes in later life was largely responsible for movement disorders of many kinds, but, through targeted movement therapies, these could be re-integrated once more, reducing symptoms. I learned about how the brains of people with trauma are easily triggered back into a "cortical shock" state, which switches off parts of their functionality and personalities, causing recurring symptom attacks. Most of all, I learned critical lessons about touching our own pain, and had my own experiences that tailored movement therapies are vital for recovery completely confirmed.
From the work of Dr Stephen Porges, I learned all about the "polyvagal" nature of our nervous system, and that understanding the evolutionary purposes of the parts of our own human biology is vital for understanding our own lives. I learned that the vagus nerve and parasympathetic nervous systems can actually have a Jekyll-and-Hyde nature, that while a more recent adaption that came with mammals, the ventral vagus nerve, is vital for health, restoration and relaxation, an over-activation or over-arousal of a more primitive, reptilian branch, the dorsal vagus, is responsible for the immobilization of the body via a death feigning response. This gave me what I needed for a complete understanding of what my own "idiopathic disease" was actually all about, at which point self-blame, guilt and shame dropped away.
I also learned from Porges how the human system perceives and evaluates threat or safety, and how Social Engagement is the first line of defence for us mammals and pack animals, that feeling "safe" in our own bodies relies on harmonious, supportative interactions and relationships with other humans, a process called co-regulation. I learned and applied techniques for strengthening the social engagement system through stimulating the cranial nerves, such as listening to melodic, lullaby quality human voices, which help to make the nervous system feeler safer when there is no real threat.
Perhaps the most important lessons I learned was through having the pleasure of a fellow traveller along the way to recovery. Kim Amburgey, mentioned above, and I became good friends after she introduced me to Farias's work. We have had lots of discussions of the above research, and on comparing and contrasting experiences, including what it was like in our heads and bodies during the many years of life lived survival mode prior to diagnosis, and how these senses of ourselves have shifted as recovery progressed. From Kim, I learned the importance of meditation, relaxation and visualization techniques, walking outdoors, living in the present and repairing and rebuilding family relationships where possible.
Most importantly for me, Kim gave me the opportunity to witness in real life, first hand, what the ongoing journey from partial recovery to nearly full recovery looks like, and that it is indeed possible. Hence, I already have a unique perspective on what my own onward journey may be like. Kim also taught me that I need to enjoy the ride of recovery, despite the unavoidable series of set backs that occur along the way, and the importance of seeing the people in our lives for who they are, and not through the lens of our own traumas. None of us are alone in this, and every one else has brains, bodies, behaviours, emotions, hormones and nervous system which have been impacted by traumatic environmental failures at some points in their lives too - failures which were never their fault.