With Parkinson’s Disease, Some Days All I Can Do Is Wait
Waiting out the disease's natural cycles has tested this columnist's patience
I had plans for a day in paradise. Crisp fall weather beckoned me outside to the garden. It was also day three of my 10-day Parkinson’s week, which is usually a good day. I was eager to get into the day, but Parkinson’s disease had other plans.
The night had been unusual with repetitive bursts of akathisia, the inability to sit still. The following morning was abnormally loud with Parkinson’s noise. I walked outside three times to survey the garden project I had planned to work on.
I decided on my third attempt at reconnoitering, when I nearly toppled over from nausea and back spasms, that something was amiss. Plans had to change.
I discovered that this day was going to involve a bowel movement. With Parkinson’s, there is an increased occurrence of constipation. It had been three days since my last foray into the bathroom for this necessity. I have learned there is no rushing nature’s natural course. While I don’t wait to pee, sleep, or eat, I must wait for other things to move along at their own pace.
Living with Parkinson’s involves inclement days that require special considerations. I need to know the precursors to such days, and how to wait until the storm passes.
My body now signals me in different ways from before Parkinson’s. Here is where the practice of being a gentle observer is so helpful. From that vantage point, I can hear what my body is telling me through the Parkinson’s noise. I can then act in a way that enhances my ability to function better throughout the day.
Parkinson’s is transient in nature, going from good days to bad and then back to good again. There are things I can use, like the tools in my Parkinson’s self-management toolkit, to improve the good days and lessen the impact of the bad ones.
But Parkinson’s is still a chronic, progressive illness. It always makes demands. It will drain the well of resources and my energy levels. When that happens, all I can do is wait for the well to replenish. There is no rushing that part of returning to baseline.
Letting go of perfection
I am not a patient man. I demand a certain level of perfection in my writing and projects. I can be demanding to those around me whose actions influence or otherwise affect my own. My history of working hard and refusing to be stopped by life’s obstacles served me well through several careers. Waiting and patience were never part of my daily practice — until now.
Parkinson’s does not allow me to slack off. It requires patience all day, every day, at a level I have not yet achieved. Depleting my well of resources, not managing the stressors in my life, and not allowing myself to rest can all push me past my threshold.
Waiting requires me to allow my body to return to natural cycles. I wait to replenish my energy. I wait to heal. I wait to engage in life and even talk to my wife.
Waiting is the opposite of the “go, no-go” cycles that have started to manifest in my life. It’s the opposite of the impulsivity that permeates the Parkinson’s brain.
When I start to increase my “go” in life and then wrestle with impulsive thoughts, I need to find that “pause between” — a brief pause before the start of any change in motor movement.
I am still learning about threshold management using the “pause between.” It’s difficult to shift perception away from the Parkinson’s brain-body noise of pain and big emotion. I need to use my “TBM” tools (threshold management, brain rewiring, and mindful movement) every day.
Putting TBM into daily practice is difficult. Relearning every movement and every inner reaction is a full-time job.
Overall, the “pause between” helps with managing emotion and pain, but I can clearly see room for improvement. I still lose control. The “pause between” helps me to take the brain path less traveled. It provides me the opportunity to turn my back on the old habits and make myself act and think in new ways.
I have so much more to learn about patience. And waiting. And accepting that my plans for the day might require both. The old way of cramming everything into one outing under the guise of “efficiency” must end. Some things can wait till tomorrow.
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.