How Going Blind Has Helped Me Better Manage Parkinson’s Disease

I have scars on my retinas I can’t see through. Parkinson’s disease doesn’t cause them, but they do significantly limit my vision.

Imagine you’re in the car, looking through the front windshield. A bird flies by and leaves a big dropping right in the middle of your view. It’s not obscuring the whole view, but you can’t see through it. That is my world of vision now — permanent droppings obscuring the view.

We can clean the car windshield with soapy water and some scrubbing. But no amount of scrubbing can clear the damaged area in my eye. I’ve had to learn to use sideways viewing to look around the area that’s permanently blocked.

It’s tough living with these medical diseases. I’ve had to retrain my brain to see the world differently, to look sideways around the opaque scars. It took hundreds of hours of retraining for me to see an initial improvement and years of practice for long-lasting brain rewiring to be effective. The process inspired me to explore the experience of brain rewiring — one of my Parkinson’s self-management tools.

We don’t have to think about seeing when we open our eyes. Our vision automatically identifies objects near and far without us having to do anything. In my case, that process is broken. I had to train my brain to use sideways viewing.

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This approach is similar to how I manage Parkinson’s, a disease that attacks the middle of the brain where most autonomic processes originate. The insular cortex monitors these functions, which include the circadian clock, body temperature regulation, thirst, hunger, resting “auto brain,” impulsivity and emotions, histamine production, pain perception, postural stability, and autopilot body movements. In my case, all these processes are damaged. I had to find a way to work around that damage.

According to a 2020 article published in Neurotherapeutics, “Recognition of the importance of nonmotor dysfunction as a component of Parkinson’s disease has exploded over the past three decades. Autonomic dysfunction is a frequent and particularly important nonmotor feature because of the broad clinical spectrum it covers.” Autonomic functions can be identified and, to some extent, controlled.

A 2002 Harvard Gazette article shares some of Herbert Benson’s findings on meditation and relaxation. Benson was a doctor, professor at Harvard Medical School, and pioneer in the field of mind-body medicine.

“Benson developed the ‘relaxation response,’ which he describes as ‘a physiological state opposite to stress.’ It is characterized by decreases in metabolism, breathing rate, heart rate, and blood pressure. …

“‘My hope,’ he says, ‘is that self-care will stand equal with medical drugs, surgery, and other therapies that are now used to alleviate mental and physical suffering. Along with nutrition and exercise, mind/body approaches can be part of self-care practices that could save millions of dollars annually in medical costs.'”

When I started using sideways viewing, I looked to the farthest side. Gradually this big effort morphed into a small, subtle, smooth action that now requires little effort.

The same is true for using the Parkinson’s self-management toolkit. At first, I could only hear the big signals coming from my Parkinson’s brain due to overstimulation or emotional dysregulation. My autonomic functions (breathing, heart rate, etc.) would be hijacked by Parkinson’s and become dysregulated and out of control before I applied the big effort to rein them back.

Over time (and I’m still learning), I’ve concentrated on a body-mind calming practice, which I call ordinary calmness. I cannot cure Parkinson’s, nor can I stop its progression. I still have tough times where all I can do is wait. But what I can do is steer it in a way that improves my quality of life.

My goal was to develop a rehabilitation model that would help me navigate around the obstacles in my brain that Parkinson’s creates. I’ve outlined my experiments and trials in my books — “Possibilities with Parkinson’s: A Fresh Look,” published in 2021, and the upcoming “Possibilities with Parkinson’s: Developing a Self-Management Toolkit.”

It’s about more than believing it’s possible. It’s a firm visualization of the potential. It’s a map I hold in my mind that guides the process. This is what my books are to me — maps to guide my way.

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.