For my 80th birthday, I bought myself a new brain: my experiences with adaptive deep brain stimulation to assist my Parkinson’s disease

The initial effect that Parkinson’s had on me

Parkinson’s does not come at you in a straight line. It circles. It sneaks. It waits. For me, it felt like battling a mythological Greek hydra with 15 different heads: tremor, stiffness, balance, slowness, dyskinesia, fatigue and fog. Cut one off, and two more rise. Parkinson’s is no longer rare: today more than 10 million people worldwide live with Parkinson’s, and roughly 90 000 Americans receive a new diagnosis each year.1

By age 80, the hydra had been with me a decade—stealing time, confidence and capability. I bumped into things. My voice changed. My feet hesitated. My once-sure handwriting now looked like a scribbled prescription. Even shoelaces became daily battles.

Some of the early effects were most notable on the trail. Hiking had always been my reset button, the place where rhythm returned to body and spirit. But Parkinson’s began to steal that rhythm. Stumbles grew more frequent. Easy hikes became exhausting. I remember one spring outing—a day that should have been joyful—ending with me wobbling so badly that Wendie (my wife) quipped, “I'm going to wrap you in bubble wrap”.

The changes to my active lifestyle from Parkinson’s disease

Two emergency room visits for falls—the last one ending up on my back in a rocky creek—hacked away at my outdoor confidence. Each fall bruised more than skin. It chipped away at my identity. The adventurous guy who biked century rides (figure 1), climbed Mount Stuart and hiked Zion’s Angels Landing—he was slowly being stolen, too.

In my professional life I am an adventurer, catalyst and storyteller who helped pioneer a set of principles that reshaped how organisations build software. Over 60 years, I cofounded professional associations and wrote six books. I test my limits on mountaineering routes and high-profile projects, and I bring those lessons to help teams close gaps, make clearer choices and move from talk to action. Parkinson’s hit me hard in my personal and professional lives.

I gave myself a gift: adaptive deep brain stimulation (aDBS)—a form of neurosurgery that uses artificial intelligence (AI) to regulate motor function by responding to brain signals.2 Not out of desperation, but because I had seen just enough of what life could feel like, and I was not ready to surrender the small freedoms that make a day worth living. Parkinson’s had stolen my rhythm and flow. I wanted them back and to move through the world on my own terms.

This is the story of that choice—two procedures, slow programming and small returns. I now carry both a heart pacemaker and a brain pacemaker. One enforces rhythm; the other listens and learns. It is also about Byron—my writing AI—and the quiet courage to keep adapting. Even in your 80s, the climb continues.

Change begins

A turning point came in April 2025 when I had a strange reprieve from my symptoms. I had stopped taking my medications for 3 days as an experiment—not medically approved—and the calm that followed gave me a glimpse of what life could be. I woke up and felt… steady. I could write. Stumbling decreased. For 48 hours, the hydra loosened its grip. That glimpse made the risks of surgery not just bearable, but necessary.

I did not decide alone. Wendie—steady, intuitive and unflinching—was my anchor. My care team stood with us. It was a shared decision.

Parkinson’s appears in many forms. For me, the hardest were the motor fluctuations—the unpredictable bouncing into door frames, the shaky handwriting and the hesitation that quietly robs your energy. At first, medication helped. Then, it did not. The swings became too wide. That is when aDBS entered—not as a miracle, but something more precise. Not a cure, but a tool.

How aDBS and my AI writing partner changed me for the better

aDBS is different from traditional deep brain stimulation. It does not just fire—it listens. Using machine learning AI, it adapts by responding to my brain’s electrical rhythms. In my chest lies a heart pacemaker, and in my brain lies an aDBS device. One enforces rhythm through fixed rules. The other detects patterns and adapts. Together, they help keep me alive, upright, steady and moving. Byron helps me speak.

Byron is my AI writing partner, powered by ChatGPT, shaped by a 7-page writing profile we built together. He does not write for me, but with me. When I stall, Byron offers options. Neither my two devices nor Byron replaces me. They extend me. Between aDBS and Byron, I collaborate with two systems—one for motion, and one for thought.

After surgery came the slow work: programming sessions, parameter tweaks and daily reflection. It reminded me of the early software days—change a few lines of code, run it, observe and adjust. Benefits came slowly: faster laces, clearer words and steadier walks. Not miracles, just small wins. Dignities regained.

My thoughts towards embracing technology for healthcare

This is not a miracle story; it is an adaptive one—another chapter in a long, exhausting fight with the hydra of Parkinson’s. I did not wield a sword; I learnt to work with sensors, signals and stubborn will. Technology did not fix me. It partnered with me—expanding what I can do. A recent fall reminded me: setbacks remain. But now I hike faster, steadier and keep pace. That matters a lot.

Many people greet tech and ‘brain’ surgery with panic. Alarmist headlines feed our bias to scan for threats, so fear wins before facts arrive. I felt that pull but chose measured curiosity instead.

Three tips for clinicians working with patients like me

1. Address fear with clarity

   DBS sounds daunting. Explain that the surgery is usually brief, done under anaesthesia and the tech is proven. Be direct, not dramatic.

2. Frame it as a partnership

   aDBS does not fix you—it works with you.3 It adapts, but patients still shape the outcome. That shared control builds trust.

3. Name the identity loss

   Parkinson’s steals more than movement. aDBS helps restore confidence. Share real stories—not just scores—to show what is possible.

Ethics statements

Acknowledgments

Parts of this essay were edited with assistance from an AI language model (ChatGPT, GPT-5). The author reviewed and approved the final text and is solely responsible for its content.