As a youthful 25-year-old, I found myself hiking through the lush landscapes of Guatemala when I noticed an odd tremor in my foot. Initially dismissing it, little did I know it marked the onset of my journey with Parkinson's disease. After that initial foot shaking, my symptoms gradually worsened, progressing to bradykinesia and dystonia. It wasn't until I was 29 that I received my diagnosis from a movement disorders specialist.
Initially, my symptoms were manageable, allowing me to pursue my career in education in China. But as time passed, I realized the impact PD was having on my life. Despite starting medication and feeling like Superman for a while, I eventually had to come to terms with the reality of living with Parkinson's. At 32, I made the difficult decision to return home to seek better care and support. It was then that I delved into educating myself about the disease and became an advocate for others like me, determined to understand the complexities of PD and find ways to manage it more effectively.
Luckily, there were several patient advocacy organizations out there that provided me with valuable information. However, driven by a thirst for knowledge, I immersed myself deeper in understanding Parkinson's, diving into the scientific literature and seeking firsthand insights from leading researchers worldwide. I was enthralled and began reaching out to the authors to see if I could visit them in their labs. Fortunately, some said yes, so I spent years traveling to different parts of the world, asking these scientists to educate me on PD and the latest advancements aimed at trying to treat this terrible disease. Needless to say, I took an extremely proactive approach to my PD.
One person who has been instrumental in my education is Dr. Alfonso Fasano, a neurologist at Toronto Western Hospital and a leading expert in deep brain stimulation therapy. Early in my journey, Dr. Fasano took me under his wing. I vividly remember our early discussions where he patiently explained the intricacies of the brain to me, even sketching out all the different parts of a neuron on a napkin. This small gesture made me feel seen, dramatically changing the way I looked at my Parkinson’s and how I would approach it, and my future role as an educator and patient advocate.
Over the years, Dr. Fasano and I maintained a strong connection, even co-authoring a book together titled "Reprogramming the Brain: A Guide to the Future of the Brain and Neuromodulation by a Patient and his Doctor," slated to be released in April 2024.
Another relationship that's incredibly meaningful to me is with Rune Labs and its CEO, Brian Pepin. Rune’s work decoding signals from the Apple Watch via StrivePD is setting a new benchmark for how we manage PD. Instead of isolated snapshots during clinical visits, StrivePD gives patients the ability to provide their physicians with real-time data on how their symptoms fluctuate, enabling more personalized and effective treatment strategies to enhance their quality of life.
More specifically, with my health care team, we can analyze my data, like tremor frequency and severity, from the StrivePD app and find correlations with my brain activity using a new adaptive deep brain stimulation, which I received in 2021. This combo approach provides my clinicians with detailed insights into my condition and how to tailor my DBS settings. Exploring the possibilities of using both systems together has been enlightening, and I hope more patients will have access to such comprehensive tools in the future.
It is becoming more evident than ever that challenges persist in accessing adequate healthcare amidst limited physician time. It is astounding to me that PD patients can’t even get an appointment with a movement disorders specialist for months. However, by harnessing richer datasets like those provided by StrivePD, there's hope for more efficient patient care delivery. This highlights the urgency of broader technology adoption in the healthcare industry and underscores the crucial necessity of expanding knowledge around new technologies currently available to reach more patients.
In navigating Parkinson's, I've learned the importance of self-advocacy and knowledge empowerment. While medical professionals provide invaluable guidance, true expertise lies in understanding one's condition intimately. Armed with insights, we can navigate our journey with Parkinson's with greater confidence and resilience.
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