How I Manage Feelings of ‘Dis-ease’ That Accompany Parkinson’s
The importance of listening to even the most subtle whisperings of disease
With Parkinson’s, there’s a chronic malaise, a sense of “dis-ease” that never leaves. In this column, I’m using the hyphenated term “dis-ease” to separate its deeper meaning from the medical use of the word.
Dis-ease is an ever-present part of the brain noise I face each day. There are days when, no matter what tool I pull from my Parkinson’s self-management toolkit, this nagging dis-ease is annoyingly disruptive.
I’m not talking about the obvious motor problems — shuffling, the body’s tipping to one side, slurred speech, or the constant dropping of objects (what I call stumbling, mumbling, and fumbling). It doesn’t include dysregulation issues, such as my body temperature flaring into waves of heat or dropping into a frost and freeze warning, leading Mrs. Dr. C to call me “Dr. Popsicle.”
Beneath all that is what the authors of the book “From Mindfulness to Insight: Meditations to Release Your Habitual Thinking and Activate Your Inherent Wisdom” call “the undercurrent.” It’s a flow of brain activity beneath conscious awareness that’s connected to my sense of dis-ease.
The Queensland Brain Institute identifies Parkinson’s as a midbrain disease that disrupts functions that process visual and auditory signals involved in the coordination of movements. Our midbrain is also involved in suppressing pain and plays a role in keeping us alert. Most importantly, it is an area that makes the neurotransmitter dopamine and is specifically damaged in those with Parkinson’s disease.
But deeper down, Parkinson’s causes a disruption in the undercurrent. I perceive this as a sense of dis-ease, a sense that something is wrong, and Mrs. Dr. C and I must do something to fix it.
This is a normal gut reaction. Chronic illness often comes with the sense that something within our body isn’t quite right. If it’s subacute — that is, not a flare-up or extreme presentation of body or brain changes — then it can haunt us like whispers in the wind.
Paying attention to the undercurrent
There are many strategies that can help us improve quality of life with Parkinson’s. Regular exercise is an action-based strategy. It does help with managing symptoms, but it doesn’t address the foreboding dis-ease throwing rocks in the undercurrent. For that, I rely on insight meditation.
Insight meditation is a way to honestly face the sense of dis-ease. The authors of “From Mindfulness to Insight” describe the process as visualizing ourselves sitting on the bank of a river and watching what flows by. But this is only a part of it. I need to envision myself immersed in the flow, in touch with it, sensing its subtle changes.
Instead, I visualize myself standing in a rowboat on a river. I’m trying to keep my balance as the rowboat is buffeted by weather, waves, and eddies in the flow. My goal is a quiet ride. Insight meditation helps make this possible for me.
The discomfort and nagging pressure of dis-ease is only one perturbation in the flow. Together, these ripples are what I call Parkinson’s brain noise. Left unattended they can, and often do, lead to my brain being highjacked and set upon by Parkinson’s crisis events. This then leads to developing coping strategies that often have their own problems — what I call the Parkinson’s developmental syndrome.
According to a 2021 article published in the Journal of Parkinson’s Disease about the causes and impact of Parkinson’s crises:
“In addition to well-recognised causes of crisis such as falls, events less widely associated with crisis were identified, including difficulties with activities of daily living and carer absence. The less-recognised crisis triggers tended to be managed more frequently in the community.”
Additionally, researchers note that “many of these community-based crises had a greater impact on care needs than the better-known causes of crisis that more frequently required hospital care.” Parkinson’s patients and caregivers who participated in the study demonstrated knowledge of potential crisis triggers, while patients were more aware of mental health issues and caregivers were more aware of cognitive impairment and medication issues.
What I’ve come to understand is that if I can maintain calmness, then my metaphorical boat on the river is more stable. I can sense the perturbations when they are little ripples that haven’t yet grown into rogue waves. This is the importance of regular insight meditation for self-managing Parkinson’s.
If I face myself honestly in the moment and take care of those subtle whisperings of dis-ease, then my Parkinson’s doesn’t manifest as full blown and out of control. I can’t do this all the time, but when I can it’s quite effective.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.