My Parkinson’s Journey

I was diagnosed with Parkinson’s Disease at 62. By that point in life I’d become convinced of the close brain-body connection, and what may possibly bypass it.

Thirty-eight years before this diagnosis, I had a significant experience one evening while meditating: I was overtaken by an odd feeling in my body, related to my birth.

I was born in London amidst the bombing of WW2. Already being intuitively sensible, I didn’t want to come out into a world at war. In the urgency to complete my birth, I was pulled with forceps, damaging the brain-body’s neural connections. It left me with a less than robust left side and a network of tremors rippling through my body. They remained undiagnosed for several years. As I grew up, I accepted my body as it was, adapting its functioning unconsciously as every child does.

But during meditation that evening, the tremors completely stopped. The odd feeling was something I had never experienced. The impossible seemed to have occurred – entrenched damage to my body system had been bypassed – it was so still it felt as if I had turned to stone.

Without treatment, without effort, without intention, something happened to the autonomic nerve pulsations and my body. That something was a releasing, a letting go of identifying with my body and its tremors. It took away the conflict between ‘me’ and the body. I came away from that experience knowing how inextricably interwoven mind and body are. I also knew affecting change in the body using the mind was not a simple ‘just do it.’ Because as soon as I became aware of my now still body, it began to tremor again.
It left me with a lot of questions. So for the next three-plus decades, I embarked upon a rigorous body awareness practice as I outwardly researched all I could about the mind.

Then my diagnosis of Parkinson’s disease.

Internally, Parkinson’s feels like a poor electrical connection, such as one observes with a flickering lightbulb. My limbs, speech, and fine motor skills are subject to random on-off messages, a ‘flickering’. I will have a thought which may or may not translate into the intended movement.

After the diagnosis, I applied all that I had studied to date.

First, I decided to separate my identity from ‘having’ Parkinson’s or being a victim of it. Whenever Parkinson made demands and sought control, I’d take note, learn ‘his’ pattern.

Whilst what I did after he came along had to accommodate his presence, I continued to determine who I was and how I did it, and it remains so 19 years on. That determination began a physical and mental routine that I would have to keep up in some form or another for the rest of my life.

Ian's First Attempt at Portrait of Wife, Chandra
First Attempt at Portrait of Chandra

That was the gift.

Over the years I have surprised myself with what resulted from what may reasonably be considered a misfortune. Now at 80, physically I seem more able than most friends of my age. I walk at least five miles a day outdoors. I do the hills in San Francisco when I visit family. I still have an exercise routine, even though I have become a bit riotous about sticking to it. I meditate and still manage to remain in charge of my body.

Of course, we don’t succeed alone. I read widely. A core book I recommend to those diagnosed with PD is The Brain’s Way of Healing by Dr. Norman Doidge. I’ve also been pushed and pummeled by masseurs, manipulated at the hand of physical therapists, yoga’d by yogis, and annoyed more than a few gym owners happily humming as I lifted, pulled, and pushed iron.

As a result of my birth injury and Parkinson’s, my walk had/has a lop-sided pattern. My wife Chandra’s didn’t, but she was always interested in living better, so we both attended a course in alignment with Joan Virginia Allen, a Restorative Exercise Fitness Instructor certified by biomechanist Katy Bowman, author of Move Your DNA and other bestsellers. I got so much out of that fitness focus that while monitoring my own walk, I still continue to study other people’s walking patterns.

Portrait of Daughter Stephanie
Portrait of Daughter Stephanic

There have been many surprises in my life, both sides of the coin, including the discovery I wasn’t wholly functional. I’ve lived a diverse life: living a ‘hippy’ life, losing an infant son, working as a therapist, being a ‘late’ student, gaining a distinction for an off- the-wall theory of literature, landing up in a Buddhist monastery, migrating without intent, losing another son, meeting and marrying Chandra, the woman through whom love in its abundance has taken me over. And finally caring for her through hospice and her death.

For me, aging is just another of life’s events – of challenges, of interests, and of joys. I live it with gratitude.

Currently, I work. Threading together all the strands of my experience, I use them to repair antiques, chairs, tables, lamps, and most enjoyably, Buddha statues.

I sang in a community choir for a few years, but you wouldn’t appreciate my warbling these days. When I stopped singing, I started painting, tricky, but doable if I breathe right and watch my timing. Two years ago, I tried portraits. So far, I’ve painted my daughter, my son and myself. The current challenge is the light that is my wife, Chandra. After three tries it eludes me. I shall happily continue to search for her with brush, paint, and canvas.

Mentally, my mind is alive with interest. I teach, sharing what life has given me. I have written three books and I’m working on a fourth. I research life issues from an anarchic Buddhist perspective and write occasional articles on a radical theory of Existence and Life, (the core of my last book).

Life is full] when joy and suffering inspire an equal degree of gratitude. Adapted of Simone Weil.

Ian James aka Author Roman Yutsko
Ian James aka author Roman Yutso
Ian James
Ian James
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I live in Ojai, California where I have just turned eighty-one. My two families are spread across the world from San Francisco to England, Czechoslovakia, and India. Though we don’t live together, we live in love. I enjoy my chosen solitude in which I write, paint, study, and meditate.
Books:
Walking Between Trees: A Journey to Kindness. By James Owen. Available.
When We Read the Green Jade Book. By Roman Yutso. Available, early July.
Each Moment – Poems of Life and Death by Ian James. In publication process.
These Trees and Those – A Journey to Love. Being written.

4 Responses

  1. Thank you so much for your story, Ian, and for making the daily choice to be who you are all these years. You give me hope. I will forward this article to my sister who also has PD.
    Best wishes with gratitude,
    Nancy Williams.

  2. Thank you, Ian. I just lost my husband to ALS and now am trying to navigate through these rough waters of loss. Your story helped me to continue to find joy in life.

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