Recently, a reader asked me "have you pursued psychological help to remove the fear from your life?". In pondering the answer, I felt it would be valuable to simply share my own experience of “mental health” and Parkinson’s Disease.
We have previously explored common themes of mental health experiences of people with Parkinson’s Disease in the years prior to diagnosis, and we considered my own history as an illustrative example in detail, in
We have also explored the impacts of medical diagnosis on mental health on people with PD, again illustrated by my own case, in
The direct answer to the reader's question above is that what initially helped me to start turning things around was indeed formal psychological help/counselling, which I’ve previously covered here:
Around the same time, I was also informally being coached in positive mind-set by Mind Fit's Neville Gaunt. This combination set me on a road to literally changing my mind. However, apart from these interventions, I have not subsequently engaged in any formal work with a therapist (yet).
The main reason I did not feel it necessary for continued external support is simply because I was finding that as I continued to pursue my healing through other means, my mental health just seemed to improve naturally along side, and my chronic, ingrained anxious and stressful modes of thoughts abated too, and continue to do so.
I feel it is worth, therefore, considering here how and why these changes of my mind have occurred, what these changes look/feel like, and hence for us to consider any pragmatic and practical lessons that we might glean for other people with PD, especially in regards to breaking the vicious cycles between mental anguish and physical symptoms.
Movement Therapies and Neural Exercises
I was actually very hesitant to use the term “mental health” in the title of this article, or indeed to refer to it this at all. My research into human biology and the human experience, as well as the results of my own self-experiments, have proven to me that the separation of health into “mental” and “physical” is a complete red herring, as is the separation of “mind” and “body” more generally. Indeed, I have found that most beneficial therapies for quietening my mind have been physical ones. I would refer to the main self-directed therapies which worked best in the regard as of the "Somatic Experiencing" type, especially dance therapy, "smovey ring" exercises, body-movement mindfulness, and using a rebounder and a whole body vibrating plate machine - I feel these all helped.
I’ve provided below several examples of the type of things I have been consistently doing in this regard in the form of entries from my video diary. As I pursued these, they have not only lessened my physical stiffness, rigidity and pain and increased my access to movement, but also reduced my mental rigidity and pain, depression and maladapted “survival” modes of thinking.
Detoxification from Problem Food, Supplements, Chemicals and Relationships
A very crucial element I've found for allowing my Nervous System to feel safe in its internal self, and hence reducing anxiety and improving quietness of mind, is in being extremely careful with the food I chose to eat and the supplements I take. Indeed, the wrong choices can really exacerbate busy, anxious and looping thoughts again. I’ve also found that beneficial/detrimental food/supplement choices are highly personal, because the specific enzyme reactions that are disrupted in our system are very person dependent. For example, for me, the most notable supplement trial that made my mental state worse again was CBD oil (I am allergic/highly sensitive to alkaloids), which, while found to be very beneficial for so many people, in my case ramped up my anxious thoughts massively and uncontrollably.
Indeed, it still amazes from very many elimination/re-introduction trials of foods and supplements, just how much less than a gram of specific active chemicals from foods can make or break my new mindset. Its horrible and frightening when all those busy, anxious looping thoughts, depression, the mustering of arguments and blaming/criticising of others in my head, come back through ingesting something!
Similarly, figuring out other environmental personal toxins has been key, as exposure to these can greatly exacerbate my mental health issues. Chemical sensitivities are very common for people with PD, and exposure results in increased symptoms, especially pain, and hence mental anguish. For example, for myself, I have discovered that exposure to latex or aldehydes impacts hugely on my physical and mental wellbeing.
Perhaps analogously, I have also found that eliminating problem people and relationships from my life has been crucial, as constant exposure to triggering people and situations makes the anxieties and looping thoughts return in force too.
I’ve found that sensory stimulation has also greatly helped me, both physically and mentally. I have tried and benefited from light therapies and sound/music therapies of many kinds, and from color/art therapies, as well as creative writing, noticing games while out walking, etc. I believe these help by putting my brain into a frequency range of theta or gamma brain waves, and hence alleviating or resting from the abnormal beta wave states that are now known to be part and parcel of PD,
Empowerment through knowledge and understanding
Another thing which I feel has significantly helped my mindset is reading and researching about PD and related conditions, in a very broad way. In particular, finding out about shock, development and relational trauma, their impact and the types of symptoms they create, and possibilities for healing, has eased my mind considerably. Just knowing there are people out there who understand me and my past history, that I am "seen", and also seeing the pieces of my own puzzle fall into place, have been a huge part of my own mental healing. Furthermore, the understanding of myself this has bought me, including the role of my historical self-stressing behaviours, addictions, and relationships, has, in particular, been extremely helpful in disentangling my lifelong survival styles and maladapted coping strategies from my "innate personality" or "true self". Learning about this has provided me the understanding of what I needed to change in my life, and change has been a crucial part of my journey too.
Irene Lyon says in her e-guide
giving her own summary of Dr Norman Doidges work (see below):
“After 20 years of observations working with thousands of people, I firmly believe that people heal faster when they understand the ‘how’ and ‘why’. Without that understanding and background, people often slip back into the same old pain points - back to their misery - because nothing ever really got shifted at a core, fundamental level. That fundamental shift can only come with understanding the ‘how’ and ‘why’.
‘Give a man a fish and you feed him for a day. Teach a man to fish and you feed him for a lifetime’ ~ Chinese Proverb”
I agree very strongly with this.
I recommend that anyone affected by Parkinson's Disease, or is involved in healthcare of people with PD, read the following books to arm themselves with the most up-to-date practical and pragmatic knowledge:
Grounded: Discovering the Missing Piece of the Puzzle of the Children’s Behaviour by Claire Wilson (although written for parents and teachers, this is an extremely clear and easy to understand book introducing the important points and main issues, and, indeed there is very direct analogy to the parent-child relationship and the [health]caregiver-person with PD relationship, since the needs of the compromised Nervous System in Parkinson’s Disease has strong similarities to those of an earlier stage of development).
The Pocket Guide to Polyvagal Theory: The Transformative Power of Feeling Safe by Dr Stephen Porges (start at chapter 2 and then come back to the start at the end);
The Brains Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity by Dr Norman Doidges (see below);
Limitless: How Your Movements Can Heal Your Brain by Dr Joaquin Farias, available as PDF download from his website;
When the Body Says No: The Cost of Hidden Stress by Dr Gabor Mate (this one can be a very uncomfortable read);
Healing Developmental Trauma: How Early Trauma Affects Self-Regulation, Self-Image, and the Capacity for Relationship, by Dr Laurence Heller and Dr Aline LaPierre;
The Heart of Trauma: Healing the Embodied Brain in the Context of Relationships by Bonnie Badenoch;
The Master and His Emissary by Iain McGilchrist (first few chapters, this covers the role of left-right brain hemisphere imbalances in chronic conditions).
How have things changed?
What I can say is that the cumulative effect of the actions I’ve taken as described above has resulted in "what it's like" to be in my own head (and body) being totally transformed. When I think back to how I was all my life before diagnosis, and especially in the first years after, my mindscape is now a entirely different country, and this trek still continues to unfold. My lifelong anxious, busy thoughts, my depression, my deep sense of guilt and self-doubt, my defensive pridefulness, my internal argumentativeness and looping thoughts have all greatly diminished. Addictive and obsessive-compulsive behaviors appear to be all but gone. In short, my mind is a much quieter, calmer and peaceful place, and I am much more able to self-regulate, and am more able to break the link between physical pain and mental anguish. My sleep has also greatly improved.
Why have things changed?
In seeking to understand why my mental state has changed so much, even though I’ve not engaged in continuing psychological therapies nor taken any drugs for anxiety or depression, I have been revisiting the book "The Brain's Way of Healing" by Dr Norman Doidge, mentioned in the reading list above. I first read this about a year ago now, but refreshed my knowledge of the stages of the fundamental processes by which "neuroplastic" (or neurological re-wire) healing occurs, for this article.
This is a book near the top of my "must read" recommendations for anyone with chronic illness or trauma, not just because it contains "need to know" understandings, but precisely because it proves to us that there are indeed very many possibilities for things we can do or try, right now, beyond the medical or surgical, which have huge potential to reduce our suffering.
In this way, the book restores hope, and, ironically, that restoration of hope is, in itself, part of the neuroplastic healing process, through supporting the neuromodulation and neurorelaxation stages described below. Conversely, the removal of hope (for example, through what is said to us at the point of a diagnosis), or leaving people despondent, really exacerbates the noisy brain which is now known to be a root cause of neurodegeneration. So, through providing proof that all is not lost, in of itself, the reading of this book is a virtuous circle, and indeed can be part of starting a healing (brain detoxification) process.
Here are my notes on the brain’s way of healing, taken as abridged excerpts from the book, on what I was looking for - the stages of neuroplastic healing. I believe this is precisely the answer to why my mental health has improved, through undertaking the self-administered therapies I’ve described above - because it does fit Dr Doidge’s picture.
"Neurostimulation helps to revive dormant circuits in the hurt brain, leading a healing process through an improved ability of the noisy brain to regulate and modulate itself. Some forms of stimulation begin from an external source (such as light, sound, vibration), but other forms are internal (thoughts, visualizations)."
"Neuromodulation restores the balance between excitation and inhibition in the neural networks and quiets the noisy brain. People with a variety of brain problems can't regulate sensation properly. They are often too sensitive to outside stimulation, or, alternatively insensitive to it. Neuromodulation restores the balance. One way neuromodulation works is by resetting the brain's overall level of arousal by acting on subcortical brain systems, such as the recticular activating system (RAS) of the brainstem, and the autonomic nervous system (ANS)."
"Once stress responses are turned off, the brain can accumulate and store the energy that will be needed for the efforts of recovery, through relaxation and catching up on sleep. Many people with brain problems are exhausted and poor sleepers. Sleep allows waste products and toxic buildups to be discharged from the brain through the cerebral spinal fluid. This helps explain why loss of sleep leads to deterioration in brain function: too much sleep deprivation leads to a toxic brain. The neurorelaxation phase appears to correct this."
"In the final phase of healing, the brain is rested, and the noisy brain has been modulated and is much quieter, because the circuits can regulate themselves. The person is able to pay attention again, and is ready for learning, which involves the brain doing what it does best: making fine distinctions or "differentiating", e.g. training to make increasingly subtle distinctions in sounds."
I will end with a further nugget of wisdom from Dr Doidge's book, which is helpful in that it teaches us not to give up at the first hurdle, because there are no one size fits all solutions to any of this, so that it is important to try and try again, to keep exploring the different possibilities for neuroplastic healing, in the spirit of curiosity and play, and seek the optimal solutions which fits us best. In particular, I believe modalities which personally bring us some sense of joy, fun, interest or achievement are likely to be the ones which work for us.
"An individual's progress is never, in this neuroplastic approach, dependent solely on the technnique, or the disease or the problem alone. We don't treat disease, we treat people. No two brains are alike, and no two brain problems are identical."