In his classic “Awakenings,” Sacks describes the symptoms of one Parkinson’s disease patient by saying, “No two crises were exactly the same. Moreover the particular character and course of each crisis, as well as its occurrence-as-a-whole, could be extraordinarily modified by suggestion of circumstance … .”
He gives multiple examples of patients using willful intention to alter the impact of Parkinson’s symptoms. They can’t stop them, but they can steer them to live better.
Sacks also emphasizes that many Parkinson’s patients will maintain access to higher-order cognitive functions. It is those higher-order functions — working memory, mental imagery, and willed action — that support conscious influence over the disease.
Most PD patients have insight into their cognitive deficits and attempt to compensate. In this way, the impact of cognitive changes contributes to the individualization of Parkinson’s.
The intention behind every action and thought steers how Parkinson’s presents itself. That’s part of neuroplasticity. Parkinson’s has been kind enough to leave me the mental faculties I need to steer and direct my intention to move beyond the automatic and to regain some autonomy.
But Parkinson’s often leaves me feeling as if I have no control in managing my life. For example, I can easily have a “beast” day — a day filled with general homeostatic dysfunction and motor, mood, anxiety, cognitive, sensory, and autonomic symptoms.
The brain hates a vacuum. It will rewire itself to fit whatever we decide to do. If one decides that escape from self is the right thing to do, then the brain will accommodate. The escape response is linked to the “fight or flight” instinct and seems to flare up a lot with me and Parkinson’s. The cravings to chase after anything that will make me feel better, escape from myself for a moment, haunt me every day.
Chasing after a “feel good” is what I call the mental state of grasping and trying to hold on. Continuing this path leads to a dead end of brain rewiring.
That other fork in the road is hard to walk, heavily overgrown with weeds. It’s not a well-traveled path, like the one I used for so many decades to escape from my pain. I knew how to escape. I didn’t know how to sit.
Autonomic dysfunction is recognized in Parkinson’s patients. Dysfunction here can be seen as nonmotor symptoms that remain more prevalent throughout the course of PD in patients presenting initially with nonmotor symptoms, compared with those presenting with motor-related complaints. What’s difficult is I have no control over these autonomic dysfunction crisis times.
During these crisis times, my internal dialogue of “This is horrible. How can I get out?” is repeated throughout the day. I’m doing battle with the beast and losing. Slaying the beast (or even putting it in a cage) seems impossible.
What’s possible is the combination of intention and mindfulness that has the power to shift that loss of autonomic function back in my favor. This powerful concept underlies my self-management toolkit design. Intention drives the attention of the insular cortex, an important dopamine center in the brain.
Reflecting on intention:
It was a spring day doused in lilac perfume made more comforting by my future wife’s hand entwined in mine. We sat waiting, and then he appeared — her father. He was a big man, a couple of inches taller than my 6-foot frame. From my sitting position, I was looking up at a giant. Looming over me, he said, “What are your intentions with my daughter?”
Intention is the frame (or map) that we use to guide our actions, steer our thoughts and behavior. I wanted to marry his daughter. I could’ve had other intentions, ones not so noble in his mind.
My nemesis is the “go, no-go” Parkinson’s experience, strongly influenced by intention. It’s always a wrestling match between the intention that I should seek and use, and the hunger and craving to do something, no matter what the consequences.
As the disease progresses, those consequences get more severe. Even though I hunger to move, I face Parkinson’s cognitive and motor resistance when I do. To make matters worse, if I continue to chase my hunger, the Parkinson’s symptoms flare and I’m headed to crossing over threshold management, when I can’t control my emotions.
To prevent that (or at least minimize the worst effects), I use my toolkit along with the proper intention of seeking ordinary calmness to navigate the crisis.
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