This article, written from the insider's perspective, covers a hidden, internalized side not only of Parkinson's Disease, but also of being under stress more generally. Our reasons for creating and sharing it include:
- to increase understanding of why we exhibit certain types of thoughts and behaviors when we are under stress or feeling ill;
- to raise awareness that we are all far from alone or unusual in having such thoughts and being stuck in such patterns;
- to explain the steps we may each take to ameliorate the negative feedback cycles of these patterns;
- to provide caregivers more knowledge of what's going on inside the heads of those they care for, in the hope that this may, in turn, help the caregivers reduce their own stress and anxiety through increasing understanding and empathy;
- to help explain to those involved in the healthcare of Parkinson's Disease the major role which these hidden symptoms and emotional states have in the real lives of people with the condition and how they impact on suffering.
Indeed, in my experience, while most people will be familiar with the external, physically manifest symptoms of PD, very few have a good grasp of these internal, hidden states, and so don't realize that people with Parkinson's (PwP) are also frozen, rigid and trembling on the inside too. Having engaged with very many PwP around the world, I've learned that there are common personality types, and we tend to have shared overarching themes of internal emotional states. In particular, I've found that many of us can be described as high achievers, but are wracked with self-doubt and guilt on the inside. This finding appears to be especially true in the cohort of PwP who eventually end up with a rigidity dominant form of Early Onset Parkinson's Disease. I have previously written about my own inner-self in this regard:
The Brainstem Perspective
An understanding of these inner, emotional problems for PwP can be gained from the perspective that chronic stress goes hand-in-hand with the condition, and indeed, overlap very considerably:
My friend and mentor, Cheryl Townsley, teaches us that when we are stressed, our brainstem takes over our thinking and actions, relegating the human cortex's decision making and emotional intelligence. The more primitive brainstem then defaults to learned programming, which is neither logical nor rational, and is largely based on past experience.
This behavioural response to acute stress (perceived threats) by humans exists for vital reasons of survival in dangerous situations, and it really is meant to protect us. Therefore, the brainstem gets programmed by past negative experiences, and then makes us err on the side of caution of to avoid re-experiencing these negative outcomes. In order to do this, the brainstem naturally speaks to us through a negative inner voice, using self-doubt and guilt to ensure we don't put ourselves in harms ways, at least according to its evaluations of potential threats to our own safety. Unfortunately, in the modern world we tend to be stressed a lot or most of the time, which is actually a highly unnatural situation, causing the programs of the brainstem and the associated negative inner voice to become amplified above healthy levels.
The Nervous System Perspective
The perspective that PD involves a critical weakening of the all important Vagus and Cranial Nerves, details of which can be found in the articles
also helps to explain these emotional issues in PD very succinctly. Reasoning from a "Polyvagal" perspective, it appears PwP have an "active vagal tone" (which quantifies how easily a person can relax) that has become very weak. In this case, a more primitive, passive or "reptilian" branch of the Vagus Nerve takes permanent control of the biological functions. This is the part of the nervous system responsible for the Freeze or Playing Dead stress response to extreme perceived threat, while the "mammalian" branch of the Vagus Nerve system is responsible for sociability, communication (facial expression and vocalization) and the higher emotions in humans. Since the symptoms of PD arise when the role of the mammalian nerve gets relegated, its associated sociability factors get shut down too. This leaves us feeling isolated and negative thoughts abound. Again, while a temporary ascendance of the primitive reptilian Vagus system is a critical evolutionary survival mechanism for times of crisis, when we are in acute extreme danger, it is not meant to be switched on all the time.
The "Script" Perspective
A third perspective comes from another friend and colleague, Liz Ivory, who does not have PD, but does experience pain and has had similar emotional issues around guilt and self-doubt as many PwP do. Indeed, from Liz's experience, the types of emotional freeze and rigidity that we PwP experience may be much more common than we may have realized - it may truly be a hidden form of PD in our society.
Liz has written a general book on this subject, "It's Not Your Fault, Because You're Not Choosing", which I would recommend to anyone, and has also developed techniques to combat these issues with her partner, Richard. They refer to the negative inner voice as the "Script" which we get handed through such things as family and school experiences. The Script even has a "genetic" factor, as our parents can unintentionally pass on their Scripts to us too.
Given Liz's experience and insights into this area, I therefore asked her to help me write this article, because I hope Liz's wisdom in this regard may help PwP to begin to defrost from their own emotional states. I am glad to say Liz agreed, and her very welcome contribution is below.
ARE WE WHO WE "THINK" WE ARE?
by Liz Ivory, Ministry of Inspiration
Hi everyone, Gary has asked me if I would write an article for you, to be honest at first I was really hesitant as I do not have Parkinson's and therefore don't have the experience to comment on it, but what I do have is experience of living most of my life feeling bad (mostly about being me but also experiencing daily physical pain), watching horror movies in my head of my terrifying future, and therefore feeling terrified most of the time and not really knowing how to fix this.
Let me tell you the short version of my story. I have done very many courses in my time and I'm now qualified in everything from NLP, EFT, TFT, Reiki, Hypnosis to Firewalking. I even used to run my own events teaching people to walk over hot coals (as you do). I've studied with Native American Shamans, undertaking ten day Silent Retreats with Buddhist Monks. and many many more weird and wonderful things in an attempt to find a way to live in peace with myself and to feel safe and at ease in my own body.
I had a very turbulent and abusive childhood, my dad would have been labelled an alcoholic but he was a functioning, perfectionist, hyper critical, extremely violent kind of alcoholic. I was terrified of him and this feeling of being in fight or flight mode became my normal daily set point - I was hypervigilant, always on the lookout for possible danger and feeling constantly under threat but also feeling that somehow "it was my fault", that he was how he was because I just wasn't good enough (which is what he would tell me) - if only I was better then maybe it would please him, and I'd be safe, but unfortunately no matter how good I was it was never good enough.
Over time this became my Identity/self image - how I saw and felt about myself - "I just wasn't good enough" - it felt as true to me as my name and no matter how much external evidence there was to prove this wasn't true or how many people praised me, my opinion of myself was the only one that I believed. It felt like it was now set in stone, and therefore could never be changed - "once you're an apple, you can't ever become an orange".
Even after my dad physically left my life, mentally he was still living in my head "rent free". The enemy was now on the inside and their was a daily civil war going on but nobody would have ever known this, as I was a fabulous actress and always had my shield up and my"I'm fine" coping mask on to face the world. In fact, everyone used to come to me with all their challenges.
So one day I decided that I was the one who had to fix this because I realised I wasn't the only one who felt like I did. In fact most people I met didn't really feel good in their own skin, and I was determined to solve this problem.
I began studying Psychology, but unfortunately it focused more and more on the problem and not the solution, as did most of the personal development courses that I studied. Eventually I worked out that you don't get rid of darkness by focusing on the darkness, you get rid of darkness by switching your focus to the light.
This now sounds so obvious but it took me more years than I care to remember to realise this. In fact, it wasn't until I met my partner Richard about fifteen years ago and we started running events together. We ran this one day course called "Beyond Words" and on it people told their story, not what they had achieved but how it had really felt to be them. This wasn't just an exercise it was like an exorcism as they dared to share things that they had never shared with anyone, some things they had not even truly admitted to themselves. We had hundreds of people do this course and yet in every single one, the person who was always the most critical of them was them.
This taught me that Identity is everything, because everything follows this including what we notice and value about our own behaviours, thoughts and feelings. If you own the identity of an angry person you will feel angry. If you have the identity of a smoker you will value cigarettes and therefore you will smoke. If you have the identity of someone in pain you will own the feeling of pain as who you are. So if you own the identity of someone who is ill, what kind of feelings do you think you will notice and feel each day?
I think that many of the illnesses and pain we experience are actually habituated symptoms of accepting and owning the wrong identity and then we try to cure the symptoms not the cause. We live in an inclusive universe which means whatever we focus on even if our intention is to fix it, all we end up doing is feeding it. It's like we are asking the universe for more of it because you get more of what you focus on.
So where is your focus? On the problem or on the solution? On what you do want or what you don't want? Learning to consciously choose to maintain our focus on wellness instead of illness, in my opinion is one of the greatest things all of us can ever learn. As my favourite comedian Billy Connolly (who sadly also has been diagnosed with Parkinson's) says "if you find yourself in a hole the first thing to do is stop digging".
The problem with pain/illness is that if you own it, the more you own it, and the more you focus on it. As the saying goes "the squeaky wheel gets the most oil", so you can not get rid of something by focusing on it and owning it - trust me: I tried this for over 30 years.
I experience pain daily, my mum has lupus and the negative voice in my head tells me that this is what I have, hence the pain, but I refuse to own that illness as me, and I refuse to own the symptoms of it because I don't believe that owning this will ever serve me long term in a positive way.
We all have a negative voice in our head - it's a 24 hour horror channel and if you constantly listen to it and believe it's who you are, you will end up feeling horrible too. It's like there are two separate identities, negative and positive, Horror and Heart residing within each of us, and we must consciously "choose" which of these identities we allow to define us.
Due to the inclusiveness of the universe we live in, you only get rid of something by disowning it and focusing on the opposite of it. Therefore a great question to ask yourself is "where is your focus hour to hour?" Is it on illness or on wellness?
I set the timer on my phone every hour to remind me to focus on this, and find a place in my body where I feel at ease, where I feel like the real me. This is usually my heart. I place my hand on my heart and I breathe in and out through it, and I own this feeling as my true identity and I imagine spreading this feeling through every single cell in my body like a positive virus. Surprisingly the more I do this the better I feel, and the more I do this the less pain I notice.
My daily focus and identity are now on heart wellness and ease, because I do not want or enjoy the alternative!
Hope this makes sense and helps someone in some small way Gary. Sending you all huge heart hugs.