Bridging the Gaps

Lessons From a Decade in Parkinson’s Disease Patient Advocacy

Thirteen years ago, a neurologist in a dreary basement office told me to quit my job in China and move back home. At the time, Shanghai was my world—a vibrant, chaotic landscape where I was building a life that felt like mine. I was twenty-nine and convinced that my future was a straight line of upward mobility. I didn’t know the first thing about Parkinson’s, so I did the only thing that felt natural: I stubbornly ignored him and went back to work.

But biology is indifferent to our ambitions. The transition from healthy man to ‘patient’ didn’t happen all at once; it arrived in cruel, steady increments. Soon enough I could no longer ignore the tremor in my foot during meetings or my faltering gait on the frenetic sidewalks of the city. I felt as though my own machinery was breaking down.   

That launched a quest, one that first found fuel in Dr. Jeanne Loring’s lab in San Diego nearly a decade ago. Staring down a microscope at induced pluripotent stem cells—seeing the potential of cellular reprogramming—changed me. In Dr. Loring’s enthusiasm for translational medicine I saw that the distance between a patient’s suffering and a scientist’s breakthrough is often just a matter of persistence and a willingness to look where others haven’t. 

Then about five years ago, I reached a crossroad. The On/Off fluctuations that are the trademark of this disease had become too bothersome to ignore. I faced a choice; which of the yet-to-be-proven therapies for advanced PD should I gamble my future on. It is a decision no one should have to make, yet too many still do because the gap between the bench and the bedside remains a chasm too wide for most to cross.

I was fortunate to find my answer in my hometown of Toronto under the brilliant care of Dr. Alfonso Fasano. The therapy was adaptive Deep Brain Stimulation, which involved getting electrodes surgically implanted six inches through both halves of my brain while awake. Now I can navigate life again thanks to those revolutionary electrodes and the care I received.

However, my recovery is the exception, not the rule. According to the WHO, the vast majority of people with Parkinson’s still lack access to these kinds of life-saving treatments. What I experienced shouldn’t be a miracle of geography; it should be the standard of care. Translating that standard will remain out of reach as long as the metrics for success are divorced from the human beings they are meant to serve.

To the scientific community, I say this: We no longer have time for promising papers that exist only to bolster journals. We need tangible results for people in need. Measure your success not by your H-index, but by the number of lives you impact. Stop viewing us as data points and start seeing the gaps in science as a personal affront. We now have tools that allow us to measure with increasing fidelity how real patients are doing in real time, use them!

Now, despite everything Parkinson’s has forced upon me, I feel a strange debt to this disease. It stripped away my illusions of control and replaced them with a hard-won perspective: we are but specks in time on a beach that stretches to infinity. While the tide eventually takes us all, there is a profound beauty in getting the chance to shape the shore before it does.

Note: this piece was inspired by a series of conversations with Dr. Peter Lansbury whose relentless pursuit of better therapies for people with Parkinson’s exemplifies many of the points raised above. This field could use many more scientists like him.