Finding my way past Parkinson’s suffering in search of the quiet mind
Shifting mindsets is difficult, but it can be helpful in steering Parkinson's disease
In a recent column, I reflected on my use of solitude to help address the problems that accompany Parkinson’s disease. This chronic illness is frustrating because, like the automatic transmission on your car, many of the brain’s automatic functions just don’t work well. With Parkinson’s, the brakes are broken and the transmission is tricky.
My transmission doesn’t work, for example, when I’m trying to get off the sofa and take that first step. If I do this on autopilot, relying on the automatic transmission in my body, then movement is glitchy. It’s what I call mumbling, fumbling, and stumbling.
Once I’m up and moving, I may get excited about something I’m working on. That’s when I run into the second problem: the “go, no-go” effect.
My Parkinson’s body is revved up, and I’m pumping the brakes without stopping. Akathisia has taken over. The opposite can happen when my brakes finally engage, but then I’m slowing down so much that I look like a walking zombie.
This is my life with Parkinson’s.
Barking at the moon
Recently, I’ve been pushing myself and working hard to get my second book about Parkinson’s, which describes the self-management toolkit, published. I’ve also started a third book to describe a general methodology for dealing with suffering. Then, as happens every late winter, I’ve been sick with a virus, which puts me at high risk for Parkinson’s complications.
All of this has combined to create the perfect storm. As a result, I’ve been out of my normal routine of finding solitude and using it wisely to enter a quiet mind. I’d like to say that this happened for just a week or so, but it’s been months.
Finding my way back to utilizing solitude has also taken months. Even though I knew through experience and education that I should find some solitude and should practice the quiet mind, I didn’t want to. What I wanted to do was to escape the suffering caused by being sick, exhausted, and burnt out.
I used computer gaming to jump-start my inertia, but the broken brakes failed to help me decelerate. Despite my best efforts, I couldn’t shift and find solitude. There was no quiet mind. There was only my brain screaming at me to escape the suffering and fight anything that was in the way. It’s a state I call “barking at the moon.” I knew from past experiences that’s where I was. I had to stop. I forced my way back to sitting still until I could find my way.
Rediscovering the quiet mind
The first barrier was to get past the exhaustion. I slept for two days. The next step was to relieve my mind of imaginary “have to get it done” projects — all of them. I had to stop writing for a little bit. I even had to stop thinking about writing. I had one goal now, and that was to find my way back to the quiet mind.
In other words, I had to shift my expectations and routine and return to my solitude.
Mornings have always been the best time for me to sit in solitude and return to the quiet mind. But mornings can be difficult because my Parkinson’s symptoms are exaggerated when I first wake up. I needed a little time before sitting in solitude was even possible.
It’s a time not only to prepare myself for solitude, but also to limit broken brakes and tricky transmission problems. It’s a time when I’m diligently mindful of body and brain while seeking to minimize the negative effects of the disease. If I’m successful, and some mornings I’m not, then I can shift to enter solitude and seek a quiet mind.
The first moments upon entering solitude to make the shift are the worst. There is so much pain and suffering coming from so many places that it’s overwhelming. All I want to do is run away and do anything besides sit and look at myself. What helps me is knowing that this is my Parkinson’s speaking and that I can get past it. I’ve gotten past it before, and when I do, the other side is refreshing and rewarding.
I write about solitude and meditation because they are processes of retraining the brain to react constructively to Parkinson’s symptoms. Shifting into the quiet mind helps me avoid the car crash that results from broken brakes and a tricky transmission. Finding my way past suffering is what leads me to the quiet mind.
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.
Ana Maria Tamayo
Good morning Dr C.
Ah....expectations, a biggy issue for us human beings. Thanks for sharing. I am learning myself to try to be truly humble, and understand that changing expectations is a path to living well life with PD at home. Le envio un abrazo Dr. C.
Ana María Tamayo (Rays partner. We call ourselves #CeltinInkas learning to live well with PD, here in Lima, Perú.
People can flourish when alone, that is a quote from your book. Solitude is very distinct from loneliness. I find that my alone time can be a time for self-growth especially when I am struggling through stuff. I have learned many things from your writings Dr. C. Whether it is my Mindful Movement exercise program or the Neuroplasticity that we all seek. I like coping effectively at every stage. Per Ana Marie this is the human condition. Our Parkinson’s condition just makes it all the more challenging. That is our Blessing Dr. C., Mike