As I write this it is four months to the day since Deb and I started the Out-Thinking Parkinson's project. Throughout this time, Deb has repeatedly challenged me to answer this question:
"Why do you think you developed Parkinson's?"
Deb's question is not really about the medical reasons for my Parkinson's diagnosis, but seeking the deeper truths of what it actually means to have Parkinson's. Until very recently, I had no answer. But as I've improved my condition, both mental and physical, I'm more able to tune in to what is actually happening in my mind and body when the Parkinson's takes hold. As I've pushed the envelope of my understanding and incorporated more interventions into my own life, tested, tried, self-experimented, it has become clearer to me.
The answer to Deb's question is, for me, a Very Uncomfortable Truth. While I have no idea why my Parkinson's started, what biological or environmental factors caused it, looking back now, I believe I understand why it developed and progressed so quickly.
As the symptoms became noticeable, I began to withdraw more and more into myself and as I retreated the symptoms aggressively advanced after me. With each inch of ground I gave, the Parkinson's Disease took a mile. Eventually, I had withdrawn into myself so much that I'd essentially shut down. I went to sleep and never fully woke up again.
And in the Arms of Morpheus, I started to forget.
I forgot to hear, no longer listened to music or song.
I forgot to see, I stopped looking into the distance, I stopped understanding color.
I forgot to smell the coffee, the flowers, the aroma of food.
I forgot to taste. I stopped savoring, stopped chewing. Eating became a purely mechanical exercise: shoveling it down the hatch as quickly as possible.
I forgot touch. My hands became empty claws, my fingers no longer sought contact with surfaces. I isolated myself physically, avoided contact with other warm bodies.
I forgot to speak. I stopped vocalizing, stopped sharing my innermost thoughts and anxieties. I no longer sang along to the lyrics, not even whispered, nor laughed. I barely breathed at all.
I forgot to feel. I lost love, lost expressiveness. Lost emotional context. Lost empathy. No joy, no hope, no pleasure, but neither could I cry.
I forgot to move. Forgot how to move. Forgot the joy of movement. Forgot to reach out, to stretch, to play, to dance.
I now liken my Parkinson's to sleep walking through my life and I do mean literally so. Watching videos of true sleep walkers caught on camera, I've found examples which look awfully familiar. They too "walk" with shuffling steps, blank looks, emotionless face, arms hanging by their sides. Then, in looking back through my own video diary, I found many instances where I would momentarily stop - and it's clear on inspection that this is not just a case of the body freezing. It is like I literally go to sleep for a instant: my face goes blank, my eyes glaze over, breathing becomes very shallow, I fall silent, I lose my balance, begin to topple, stumble.
Since then I have started to try to be highly cognitive of what it feels like when the Parkinson's symptoms come on and, indeed, what I've realized is that I do literally "zone out". I stop looking at what my hands and feet or doing, stop looking towards where I'm heading: my vision becomes near field, unfocused. I stop responding to any motivational music I might be listening to and become unaware of what's around me beyond my very immediate vicinity. I lose my voice. I also lose control of my "inner voice" too, thoughts either shut down or run away: I'm in a trance or I'm dreaming.
Pondering further all the interventions which we've developed, the ones that work for me, I realized they all involve senses and wakefulness. The changes in diet, avoiding the foods which promote sluggishness and incorporating those known to increase alertness. The props and balls and fitflop shoes, all provide sensual feedback through fingers and toes. The music and the dancing, of course. The mindfulness and mental alertness. The hand-eye co-ordination exercises.
But this Sleeper is Awakening.
So here's what I plan to do in the next phase of the Out-Thinking Parkinson's project. I'm going to drink and smell the coffee. I'm going to take up aromatherapy, color therapy, light therapy. I'm going outside more, and when I meet people in the street, I'm going to say "hello" in a distinct voice. When passers-by ask me in turn "how are you" I will reply "I'm fantastic, thank you" - and I will mean it. Whenever I move around indoors, I'm going to let my fingers brush surfaces, to touch and feel lots of different textures and temperatures. I'll make sure my hands are never empty and I'll carry a stress ball wherever I go. I'm going to have music in my ears as much as possible. I'm going to take lessons, learn to sing well and with real emotion. I'm going to smell each and every ingredient whenever I cook, and then savor every mouthful, to chew and generate saliva. I'm going to watch the sunlight play on the surface of water. I'll express my love more to those I hold dear and talk more about how I'm feeling: not bottle it all up inside myself. I'm going to cry more, I'm going to laugh more.
Out-Thinking Parkinson's: Phase II will focus on waking myself up again, reconnecting with the world around me, revitalizing all my senses, taking back the ground I lost to the disease, taking a mile for every inch it retreats. And what if I'm wrong about this sleep walking hypothesis? What if all this does nothing to improve my symptoms? Then I won't have a lost a thing, But I will still have come back to my senses.