A Fresh Look at Parkinson’s Self-Management
The power of the human mind to reshape itself, adapt to even the most traumatic of events, is a gift given to me by the head injury patients from my past clinical experience. Their courage inspired me to find a scientific model to help me with my own Parkinson’s disease (PD) brain injury.
Individualized presentation explained by the spectrum stage theory serves as the scientific foundation for my PD self-management efforts. Building on this is an understanding of the role of the second dopamine center and its effects when damaged by PD.
For an easy-to-use brain model, I have simplified it. There is a broken autopilot loop and a broken auto brain loop that episodically display a flicker effect. My thoughts and actions have an impact on the conditions that increase or decrease the severity of the flicker effect. I can act and think in ways that limit the problems associated with a broken PD brain, especially those associated with the broken autopilot and the broken auto brain.
I think of the PD brain as having a noisy, idle state, like when the lawn mower carburetor gets clogged. When it can’t get the proper fuel, starting the gas-guzzling grass cutter results in rattles and belches and flickers. It doesn’t hum along nicely in idle, and neither do I.
Like the lawn mower, I need clean access to nerve communication fuel for my PD brain and body to work better in synchronization. When I can manage the flicker effects, there seems to be more clean fuel in the tank.
In the broken PD brain model, both the autopilot and auto brain flicker malfunction episodically — more severely on some days. Like the lawn mower, my PD brain has days where the well of resources, the fuel tank, gets depleted. My body/brain operates in fits and starts. It flickers. My goal is to change the intensity and severity of the flicker effects to reduce the worst of times — those ugly days.
I start with the following three assumptions:
- Exercise supports homeostasis and PD self-management.
- Disruptions in homeostasis increase the flicker effect, which then decreases my resources for managing symptoms.
- Conscious control can be exercised over some aspects of the flicker effect. Doing so increases the well of resources.
These three assumptions turn into a PD self-management plan:
- Proper exercise is paramount.
- Don’t jerk yourself around. Seek equilibrium.
- Develop a brain-training workaround to deal with the broken autopilot and auto brain.
My PD self-management plan tries to do exactly that: restore homeostasis and recalibrate my tolerance for the disruption that PD causes.
Disrupted homeostasis is another term for stress on the whole body. In an article published in the journal Current Biology, researchers state:
“When internal or external circumstances give rise to a situation that takes, or threatens to take, the individual out of its zone of tolerance for one or a number of parameters, or cause it direct harm, the organism has to do the following: recognise the danger, mount a stress response that facilitates evasive action, restore homeostasis, repair any resulting damage, and, if appropriate, recalibrate the homeostatic set points and tolerance zones in the light of the new environmental circumstances.”
Every day is a new day for my PD management. Stress may come from any source, anticipated or unexpected. If left unattended, my flicker effect of symptoms can blink on and off erratically. It is then that I must sit, breathe, and manage my brain and body. If I don’t, it just gets worse, and there are more ugly days.
I have found that the cumulative effect of proper exercise, equilibrium, and brain retraining, over years of dedicated practice, makes a huge difference in the frequency of ugly days. It is the symbiosis of doing all three that yields better results. Like the lawn mower, my PD body works better when there is a steady flow of fuel, and plenty left in the tank.
This PD self-management program requires that I show up every day prepared and ready to work all day on improving how I live with this chronic illness. I am learning all over again even the simplest of things. I don’t simply walk, because that uses the broken autopilot. Instead, I “perform,” being ever mindful of each movement during the walking process.
I am still exploring the details of this PD self-management program. I have always said, “If I can’t walk it, I won’t talk it.” But thus far, I am excited about its potential for improving quality of life.
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.