Strategies for navigating the inner journey of Parkinson’s disease

The diagnosis of Parkinson’s disease threw open soul-searching questions in my dad, Jack, that I was unaware of. However, his probing became apparent when I was donating books to the library. My mom gave me a small box from my dad, who was no longer able to read because of a sight issue unrelated to Parkinson’s. I rummaged through and found the book “The Power of Now: A Guide to Spiritual Enlightenment.” I leafed through it and saw highlighting.

“Mom, whose book is this?”

“It’s your father’s.” Really? It wasn’t like my dad to pick up a paperback spiritual book — ever!

A few years earlier, I was introduced to Eckhart Tolle, the author of “The Power of Now.” I knew of him from the talk show “Super Soul Sunday,” but his message didn’t spark an interest. Now my curiosity was ignited: What did my dad get that I missed?

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When my dad was young, he held a strong belief system that shaped his future. Jack lost his position as an insurance adjuster when his employer discovered he was moonlighting as a writer. My mom was nine months pregnant, with four girls younger than 10 running around. He had no job and five kids to feed. Instead of being devastated, he was excited. With what was left in his bank account, he took my aunt and uncle out to dinner to celebrate his new life in advertising. It was a dream. I’m sure many said he was reckless, and few believed he would succeed. But he believed he would. In the age of “Mad Men,” that belief manifested into reality. Jack became the owner of a successful ad agency.

Now his belief system was being tested like never before. When a degenerative disease hits, understanding what is happening and then creating a strategy is critical. Finding the right doctors, making the home functional, and learning about lifestyle and medications are all part of the external game plan.

But what about the internal world and coping with a radically unexpected future?

The emotional and psychological reality is an intimidating cliff. Parkinson’s disease forces open a Pandora’s box of questions. I wondered how he was surviving this mental gauntlet.

Navigating mental obstacles

By opening the aperture to a new way of thinking, the book helps to answer some important questions for those diagnosed with Parkinson’s: Where do you begin? What prevents the disease from defining you? How do you manage your mental health?

Tolle’s writing has a spiritual essence, focusing on our shared humanity and universal obstacles. At some point, most of us will deal with one of life’s biggest struggles: a degenerative change or disease. He encourages us to take a wider-angle view. Observe the constant stream of mental chatter. Be the objective observer. Is our internal monologue true or even helpful?

Separate identity from the diagnosis. A person can be physically challenged while their inner world remains independent.

Tolle argues that mindfulness is key because mental suffering is created in the mind, worrying about “what-ifs” that may never happen. Stay in the moment. Grief takes hold when we avoid the present and engage with a regretful past or anxiety-filled future. Unconstructive thoughts can pull us into a downward spiral. Tolle invites readers to a regular meditation practice to calm the mind.

When events unfold beyond our control, we should embrace acceptance rather than resisting. It frees up energy, creating mental clarity. A wise person understands the value of being present. Focusing on reality and only what is necessary helps us make better decisions. Emotionally reactive thinking clutters the thought process. It wastes time and energy on the wrong things.

Adopting some of Tolle’s mental framework is straightforward, but not easy. Being overwhelmed can pull us into a negative space. Tolle’s framework is a compass that can guide us out.

A disease like Parkinson’s can make you question everything you thought you knew. As a caregiver, I connected to Tolle’s message in a way I couldn’t earlier in my life. I was a student of this new way of thinking and a slow learner. You know the type that is constantly asking questions while the instructor is thinking, “Haven’t we gone over this before?” Over time, I realized real learning happens in difficult times. It strips away the unnecessary and leaves behind what is truly important.

There were many times I was in a dark place, especially when Dad entered a new stage of the disease. It’s hard not to be. Sometimes the light during his illness was so dim it barely reached us. In those moments, it was as if the universe was saying, “Pay attention, I’m speaking to you!”

If life is a school and the universe is a teacher, navigating Parkinson’s was a challenging mental curve. My dad’s passing said he was ready for what was next.

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.