How I Find and Use Solitude With Parkinson’s Disease

Sanctuary and solitude help create the conditions for practicing insight meditation. This helps me to sense the Parkinson’s brain noise coming from my damaged midbrain, enabling me to better understand, and manage, some of my Parkinson’s symptoms.

Parkinson’s is a progressive disease of the midbrain. My Parkinson’s brain can get hijacked, leading to a crisis event. I either learn to sense the midbrain changes early or remain hijacked by dysfunctional sensations. My travels into solitude help.

Insight meditation is not a cure for Parkinson’s. It doesn’t stop the damaged brain areas from sending out malfunctioning messages. It doesn’t stop the cycles, the surges, or the crisis events. Insight meditation just makes it easier to live with Parkinson’s, and solitude makes it easier to practice. But there are trade-offs.

Over the years, I’ve learned that midbrain damage can cause brain surges and then emotional outbursts. Dysregulation comes in many forms, such as body temperature fluctuations, and gets worse as the disease progresses. The solutions I developed for me to steer the disease are in my upcoming book, “Possibilities with Parkinson’s: Developing a Self-Management Toolkit.” Much of that information came from trial and error, learned and applied through the practice of solitude and insight meditation.

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That being said, before you pack your things and head off to the nearest spiritual sanctuary, know that my experiences were an arduous journey, filled with distractions, detours, dangers, distress, and downfalls. Prepare yourself well, fellow Parkinson’s traveler.

In practicing insight meditation, I use my sanctuary to support my solitude. I don’t think of this time as being lonely.

The Davis Phinney Foundation for Parkinson’s notes that

“Social isolation is characterized by having a small social network and infrequent participation in social activities. Loneliness, on the other hand, is a personal interpretation of a psychological state. It’s about perceiving that you have a lack of social support. So, someone who is socially connected could still feel very lonely. And someone who does not have any social connections may not feel lonely at all.”

In our fast-paced, work-till-you-drop culture, we aren’t trained to sit in solitude. It can be challenging to find those solitary moments that offer us the greatest benefits. Yet people still seek it.

In a working paper for the Federal Reserve Bank of Philadelphia, economist Enghin Atalay examines the amount of time people in the U.S. spend alone and with others, as well as the impact of solitude on well-being. He poses a question: What accounts for the observed increase in solitude? Through his research, Atalay found that this increase is mostly because people spend more time on leisure activities at home.

Parkinson’s folks may have additional reasons for wanting solitude.

As Rachel Dolhun, MD, a movement disorder specialist and senior vice president of medical communications at the Michael J. Fox Foundation for Parkinson’s Research, explained in an interview for an article published in JAMA Network last year, “There’s a stigma sometimes associated with Parkinson’s. Certain symptoms, like tremors, shaking, or drooling, make it more difficult to go out in public; walking challenges make it more difficult to go out and interact with others; and this can further isolation.”

There are negative attributes of solitude, such as lacking structure, missing human contact, losing routines, or sliding into physical and mental deterioration. The quieter my brain gets, the louder the noise seems to be. I’m ever wary of these things.

However, positive outcomes can also come from moments of solitude. These focus on self-awareness and a sense of rejuvenation.

A 2021 research article published in Frontiers in Psychology identifies positive aspects of solitude:

“Solitude … is increasingly understood to confer benefits. Until now, research in social, developmental, and clinical psychology, and in medicine, has mainly examined drawbacks of solitude and certain negative psychological states broadly associated with it, such as loneliness and social anxiety. … But a growing body of work focuses on positive solitude by identifying and classifying the ways in which people flourish when alone. It is now quite clear that solitude is distinct from loneliness, the feeling of alienation from others …, and isolation, the experience of choiceless and extended alone time.”

Well-being from solitude can open opportunities for self-growth through reflection, the development of coping abilities, and the exploration of spirituality. As a Parkinson’s patient, I use my time in solitude to feel self-reliant. I allow the silence to help me connect deeply to myself so I can hear the brain noise early before it gets problematic. I get a sense of accomplishment from this.

Yet even with all that, the process of learning how to use solitude to work around a damaged midbrain has been the most difficult, and the most rewarding, thing I’ve done in my 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.