Lessons Learned in the Crucible of Chronic Illness

What Parkinson's Disease Taught Me

Who Am I?

I am a scientist and engineer by background, with a PhD, diagnosed with Early Onset Parkinson's Disease in 2009. After six years of dying inside, I started "Out-Thinking Parkinson's" in January 2016 in order to pursue pragmatic and practical solutions towards progressive symptom reduction for people with Parkinson's Disease. Today, Out-Thinking Parkinson's has become a major resource, where my colleagues from around the world, who also have an insider's perspective of PD, and I share our knowledge, philosophies and experience of living well with PD, and, also, record their stories of recovery.

Along the way, I developed a keen interest in, and began to write about, wider aspects of health and wellness. My current interests include living a better life, the impacts of trauma on society, and, conversely, the traumatizing aspects of modern culture, human flourishing and the human condition.

The Best Things I Learned Along the Way

Here is a list of things which my studies lead me to believe are most helpful for living a healthy, good life. These include the need to be doing everything we can to calm our Nervous Systems, Immune Systems, inflammation, stressful emotional states and anxious thoughts, to address unhealthy relationships, to restore a sense of internal and external safety, and to send the message to our biology that “the war is over”. I would currently summarize these as:

• identify and remove, or remove ourselves from, as many stressors as possible;

• prioritise sleep, rest and relaxation;

• minimize use of and exposure to non-natural chemicals and chemical products;

• remove inflammatory, highly processed and artificial foods from diet;

• restore healthy patterns of breathing from the diaphragm and through the nose;

• address, restore and maintain fascia health;

• hydrate extremely well;

• address constipation;

• clear lymph nodes;

• cultivate a daily meditative practice, whether meditation, hypnotherapy, art therapy, etc., anything which gives our minds a break from verbose, busy and anxious thoughts;

• re-connect body and brain through daily movement and dance;

• spend time in nature;

• appropriately stimulate the Ventral Vagus Complex and Social Engagement functions of the Nervous System;

• synchronise brain hemispheres, rebalance brain by cultivating the right brain’s embodied, connected, big picture, present way of attending;

• attend to ruptures in interpersonal relationships, past and present. and identify and avoid toxic people;

• practice gratitude, forgiveness, kindness and compassion, seek to let go of chronic anger, hate, despite and try not to engage in judging, blaming and shaming others;

• improve relationship with food and mealtimes through how, where and when we eat, not just what we eat;

• determine, by trial and error if necessary, our personal responses to food, and find our own personalized optimal health giving foods and food sensitivities;

• address trauma with appropriate therapies;

• engage in personal development and cultivate a growth mindset;

• reject the Medical Institutionalized Narrative, which uses the language of war such as “battling the disease” or “fighting PD”, and instead focus on making peace inside and out;

• stay curious and playful, maximise joy and pleasure in life;

• focus on what the suffering has to teach us, and not on the suffering itself;

• avoid consuming the News Agenda, don’t watch horror films and thrillers, instead cultivate an enjoyment of and appreciation for comedy and romance;

• don’t totally abdicate the responsibility for our own health to “experts”, but instead learn as much as possible about how own bodies and minds work;

• seek to gain as much agency to act independently and make free choices as possible.

• understand that perfectionism and trying control everything comes with great cost;

• develop our sense of having a right to be, the knowledge that we are enough as we are, and that we have no points to prove;

• cultivate a sense that life is purposeful;

Although this may seem like a tall order, these all support one another and there are many positive feedback loops and virtuous circles. Think of it as a menu of choices to pick from, and that not all need to be pursued simultaneously, so we start with the lowest hanging fruit for us, and this will help open up and make some of the other options easier to incorporate. None of these suggestions are individually particularly onerous or consuming of large amounts of time per day. It is more about taking a long term view of changing the habits of a lifetime, repatterning ingrained, unhealthy behaviours, and removing ourselves from toxic environments, relationships and situations, thereby decreasing our exposures to as many risk factors for worsening health.

My Recommended Reading List

These are the books that I read along the way, which were vital in my new understandings, reframing my situation, and guiding the changes I needed to make.

• The Pocket Guide to Polyvagal Theory: The Transformative Power of Feeling Safe, by Dr Stephen Porges;

• Healing Developmental Trauma: How Early Trauma Affects Self-Regulation, Self-Image, and the Capacity for Relationship, by Dr Laurence Heller, Dr Aline LaPierre;

• The Master & His Emissary: The Divided Brain and the Making of the Western World, by Dr Iain McGilchrist;

• The Fourth Phase of Water: Beyond Solid, Liquid, and Vapor, by Prof. Gerald Pollack;

• Fascia Decompression: The Missing Link in Self-Care & Unblock Your Body: How Decompressing Your Fascia is the Missing Link in Healing, by Deanna Hansen;

• Fascia: What it is and Why it Matters, by David Lesondak;

• Breath: The New Science of a Lost Art, by James Nestor;

• Recognizing and Treating Breathing Disorders: A Multidisciplinary Approach, by Leon Chaitow, Dianah Bradle, Christopher Gilbert;

• Restoring Prana: A Therapeutic Guide to Pranayama and Healing Through the Breath for Yoga Therapists, Yoga Teachers, and Healthcare Practitioners, by Robin Rothenberg;

• The Brains Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity, by Dr Norman Doidges;

• Limitless: How Your Movements Can Heal Your Brain, by Dr Joaquin Farias;

• When the Body Says No: The Cost of Hidden Stress, by Dr Gabor Mate;

• The Heart of Trauma: Healing the Embodied Brain in the Context of Relationships, by Bonnie Badenoch;

• Rebirth at 50: In the end it was not The End, by Florencia Cerruti;

• Grounded: Discovering the Missing Piece in the Puzzle of Children's Behaviour, by Claire Wilson;

• Music as Medicine Particularly in Parkinson’s, by Daphne Bryan;

• Quench: Beat Fatigue, Drop Weight, and Heal Your Body Through the New Science of Optimum Hydration, by Dana Cohen, Gina Bria;

• The Polyvagal Theory in Therapy: Engaging the Rhythm of Regulation, by Deb Dana;

• Feel Better in Five, by Dr Rangan Chatterjee;

• A Hunter-Gather’s Guide to the 21st Century: Evolution and the Challenges of Modern Life, by Heather Heying, Bret Weinstein;

• How the World is Making Our Children Mad and What to Do About It, by Louis Weinstock.

My Online Course

I have also created an online course called “The Nervous System in Chronic Illness”, in which I seek to distil all the understandings and wisdom I gleaned on my own journey into empowering knowledge, and pragmatic action steps for others to follow.