Living Inside a Thinning System: A Series Introduction

A series for people living with Parkinson’s

Introduction

These essays grew out of my own days and feelings as I’ve tried to understand what Parkinson’s has changed—and what it hasn’t—and from many conversations in the last 2 and a half years. These reflections are my best attempt to make sense of what’s happening, offered without certainty and without expectation that they will fit anyone else exactly.

This series was also written for care partners and support communities. It is not a medical guide, a motivational program, or a collection of coping strategies. It is an attempt to name something many people with Parkinson’s already know—but rarely see described clearly.

Many of my thoughts here are reflected on the thick pages of the graphic novel My Degeneration. Anyone who knows Parkinson’s understands how challenging it can be to paint an accurate picture with words alone.

I am writing as someone living inside this disease–a disease which in its all-encompassing reach is not so much a condition as an oddly fractured ecosystem. With a lifelong interest in how systems behave, I found myself trying to make sense of Parkinson’s through that lens as well.

I was diagnosed with Parkinson’s in late September 2023, two hours before driving downtown for my 50th high school reunion. My doctor called my cell phone with the results of a DAT scan and said, simply, “I can now give you a formal diagnosis of Parkinson’s disease.”

The timing was surreal. I was getting dressed, revisiting old memories, and preparing to step back into the now long arc of my own life—while quietly crossing into a new one I had hoped I wouldn’t need to plan for.

I was fortunate. A few days later, a nurse practitioner at the Memory Center—where my wife and I had taken my mother for testing prior to her Alzheimer’s diagnosis—made a referral to the head of the Movement Disorders Department at Rush. That care path ultimately led me through DBS candidacy and, on May 1, 2025, to bilateral adaptive deep brain stimulation implantation.

My primary Parkinson’s physician advised bilateral implantation. I was approaching my seventieth birthday, and she had begun to see tremor activity in my left hand as well. Implanting both hemispheres at once slightly increased my surgical risk, but it also meant I would not need a second brain surgery later, when I was older.

I've been fortunate, both with my doctors and in the course of my treatment. Thanks to Bilateral Deep Brain Stimulation, my right forearm tremor—so severe that when it surged my hand would flap at my side—is now fully controlled. My medical team describes my version as tremor-predominant Parkinson’s. That tremor, the most visible marker of my illness, is no longer the center of my daily life.

Which means I can now focus on everything else. And true to Parkinson'sSystemic nature. That everything else Is all-encompassing.

That fact is why this series exists.

Parkinson’s often makes life harder before it makes it look worse. Even when tremor is controlled, even when medication or technology is working, daily life may still require more effort, more planning, more recovery, and more vigilance than it once did. Conversations can be tiring. Decisions can feel heavier. Multitasking becomes risky. Fatigue does not match what others see.

I inadvertently deleted two excellent sentences here, one about isolation.

The essays in this series are built around a simple idea: Parkinson’s is not only a disease of movement. It is a disease of regulation.

Much of human life depends on background systems that work automatically—systems that coordinate movement, attention, emotion, timing, and energy without conscious effort. Parkinson’s gradually interferes with those systems. What once ran quietly in the background begins to require supervision. Ease is replaced by effort. Flow is replaced by management.

This does not mean ability is gone. It means the cost of using ability has increased.

Understanding that difference matters. Without it, people with Parkinson’s are often encouraged—by others or by themselves—to “try harder,” “push through,” or “stay positive,” even when effort itself has become the scarce resource. These essays offer a different frame: one that treats adaptation as intelligence, not surrender, and redesign as dignity, not defeat.

Each essay explores a different aspect of this experience:

• Why effort increases before function disappears
• Why fatigue doesn’t match what others see
• Why willpower stops working the way it used to
• How identity can feel shaken without being lost
• How structure and environment can restore stability
• What Parkinson’s reveals about how complex systems fail quietly

This series is brief, but it is not meant to be read quickly or all at once.

The goal here is not optimism or despair. It is clarity. And if I’m lucky, you will find some of these ideas resonant.

Parkinson’s takes different shapes in different lives. I don’t expect these essays to mirror every experience. I hope only that some part of what I describe feels recognizable.

Parkinson’s narrows margins. It reduces slack. It increases the work required to live an ordinary life.

Seeing that accurately does not make anyone weaker. Accuracy is a foundation of dignity.

© 2025 Michael A. Pink. All Rights Reserved.