5 Years Post DBS Surgery…

It has been over 5 years since they burred holes all the way through my brain. Seems like a good time to answer the simple question: how am I doing these days? The answer is remarkably well considering I was diagnosed with Parkinson’s disease 13 years ago. In the words of my neuropsychologists, “You are still very much a poster child for adaptive Deep Brain Stimulation.”

On good days, I hardly notice the disease. Even on the bad ones, I still live independently. My impulse to jump in the car and go wherever I want is occasionally checked by an increasingly annoying tremor, and anxiety still has an ugly habit of stealing my sleep. Yet, this baseline of relative freedom is something I once considered impossible. Before the surgery, the slope of my decline was simply too steep to ever imagine living the life I do today.

I’d be remiss if I didn’t start by acknowledging that it took a village to get me here. Not only was I lucky enough to have my parents still around and incredibly supportive of me throughout this journey, but I have access to the best neurological team anywhere on the planet.

Playing God

At my most recent aDBS programming session earlier this month, I asked Dr. Alfonso Fasano how many of his colleagues he would trust to program his own DBS if he had to have one. We had just stress-tested my settings again. In order for a physician to feel confident that their patient can live within the boundaries of the parameters they set for their adaptive algorithm, they need to test what the current limits of those settings are. That means he needed to push me beyond the ranges in which I am still comfortable, and boy did he ever.

There is nothing else in human experience quite like being programmed. A few feet away, you see a doctor with a tablet pressing buttons on a screen, and with every incremental push, you feel within you a tingling of electricity as your nerves constrict your muscles one half of your body at a time, contralaterally to the side of your brain being programmed. I recall during our session at one point jumping out of my chair and twirling around in a wild fit. A few moments later I felt pinned to my chair, unable to speak, with my right hand fixed in position clenched above my head.

Despite the state I was in, I still trusted Dr. Fasano implicitly. It’s a trust that has been built up over 10 years of patient-doctor visitations from which I know that he will do whatever he has to to ensure that I leave his office feeling better than when I walked in. And on this visit he was finally unencumbered by the demands of a nearly 5-year-long clinical trial and all the impositions of a corporation looking over his shoulder; Alfonso was free to spin his artistry in me. One term that might be helpful to know is VTA, Volume of Tissue Activated, or to put it more colloquially: a blob of electricity. Around each activated electrode, a blob is created and depicted on his tablet. Shaping and molding that blob to best fit each patient’s particular needs at any given time is what gives programming physicians using DBS—and particularly adaptive DBS—such ability to control their patients.

However, it’s not just the physical amelioration or exaggeration of visible symptoms that they have power over. The structure of the basal ganglia, and the brain really, is such that nothing is rigidly compartmentalized. There are no nicely defined boundary areas in the brain itself. Though there are regions which we generally know control certain parts of who we are, they are by definition not only plastic but borderless. Thus, while textbooks might say things like “The amygdala is where fear and threat detection is processed,” that is not the reality that the brain knows itself to be. This is crucial for programming physicians to have an intrinsic understanding of, because when they tweak those blobs inside each of us, despite the electrodes being in the sub-thalamic nucleus known to regulate movement, they are also altering our moods, our disposition, our proprioceptive capacities, our very beings.

It’s taken years of such visits to get Alfonso and myself to a point where we know that my symptoms tend to be best ameliorated by activating the blobs around the two central electrodes in each half of my brain. The exact shape of each makes for a structure that looks somewhat like a Russian nesting doll, with the blob around the bottom-most electrode being plumper than the one above.

Now despite the fear that the words above would have inevitably evinced in some readers, I should also mention something that even I find strange; it feels good to get programmed. Each session begins with an impedance check that feels like a quick reset of one’s settings. For a moment, I tense up as the battery runs its check and leaves me without the benefits of its life-giving electricity. Then, mere moments later, comes the release as the check completes. Simultaneously in me, something releases that makes me feel good. You might think it to be dopamine, but it happens far too quickly for it to be a chemical reaction; it is more likely to be the reactivation of the dopamine pathway, driven by an electrical reaction. That sense of euphoria is similar to what I now experience when I begin to crank up the speed on a treadmill. There is something about the forced cadence of a treadmill that ignites a similar feeling of happiness that washes over and through my entire being.

The Biological Maintenance

But that electrical euphoria is only half the equation. The adaptive DBS does its job—modulating my brain signals so I can live within a functional range—but it is not a magic wand. The goal of each visit is not perfection; it is about finding a functional range, a “Goldilocks zone” where I can exist with some semblance of normalcy, leaving me with the capacity to take ownership of the variables I control. I protect my sleep (8–10 hours is non-negotiable, though granted that sleep is able to be largely undisturbed because of what DBS does to calm my symptoms), I eat well, I minimize alcohol, and I make sure I get 70-minutes of heart-rate elevated exercise damn-near every single day.

Beyond my daily gym routine, I’ve become highly intentional about preserving the neuroplasticity I’ve fought so hard to maintain. I recently joined a local boxing and balance class, and I’ve also begun studying languages again. I do so not so much to achieve fluency or learn new movement patterns; it’s about immersing myself in novel brain-enriching environments that require active engagement that I feel will allow me to maintain myself for as long as possible.

Despite all the work I put in to maintaining myself, life is still far from perfect. I still deal with an annoying tremor, usually in my left foot. I still shuffle my feet when navigating tight spaces, and I still experience anxiety that can be relentless, surfacing in ways that no amount of programming can entirely suppress. 

That said, we are still just beginning to understand what DBS can do. For one, these adaptive algorithms we deploy are still blunt instruments tied to even blunter electrodes. Not only do they read for just one discrete signal (Beta) and adjust only one parameter of the VTA (amplitude), but they still do damage as they pass through the brain that activates all sorts of neuroinflammatory pathways that themselves do more damage to their environments. There is a library of other signals that theoretically could be read and at least four more dimensions of VTA parameters that could be adjusted in response as well as much finer materials that could be utilized than the ones we have today. 

In addition, there is so much that needs to be done to open up access so that more individuals can benefit from DBS. It is a cruel twist of fate to live in a part of the world where one does not have access to DBS—or even to more basic remedies like Levodopa, which too much of the world still lacks. We all desperately need to do more to open access to these life-saving therapies.

From Observation to Action

I left the session with Dr. Fasano feeling more limber, stronger, and more dexterous. A friend who happens to be a movement disorder specialist pointed out that my gait looked much improved. Even my Dad remarked that my speech was clearer. If only there were some way we could nicely integrate those feelings into an objective measure of patients’ real-world experiences. Alas, we are not there yet. 

How long these benefits will last is the great unknown. I went almost a year between previous programming sessions and this most recent one. The tremor banging away at the floor beneath me as I type tells me that I likely will not be given so long a grace period again.

One rather bizarre side-effect of this entire experience is the fading of a compulsion. For years, I was driven by an urgent need to write, to document every idea, every shift in my symptoms, and every nuance of my neuro-evolution. The fact that this very essay took me weeks to begin shows that urgency has waned. It isn’t that I have run out of things to say, but rather that the crisis of the self has somewhat stabilized as I no longer feel trapped in the exhausting cycle of chronicling my own decline.

The electricity humming in my basal ganglia, coupled with the strict discipline of my daily routine, has bought me the ultimate luxury: bandwidth. Instead of observing myself, I can finally look outward. I direct my energy toward tearing down the silos that have defined how we treat these diseases—convening researchers working to isolate specific biological subtypes and imploring the industry to make better use of real-world patient derived data in clinical trial designs. The objective is no longer merely keeping my own symptoms at bay. It is engineering a systemic infrastructure where access to targeted, precise therapies isn’t a stroke of geographic luck, but the universal standard.

I am not alone in this engineering effort. There is a vast network of people actively working to build a more patient-centered paradigm, designing the macroscopic equivalent of those electrical blobs to better fit the collective needs of the afflicted. There is a long road between where we are today and the future we are trying to build. It is a project of constructing bridges and laying new pathways—one that will almost certainly outlive me. But as the battery runs its current through my brain, I am profoundly grateful simply to have the health, and the bandwidth, to continue to build it.