In April 2023, I found myself sitting in a neurologist's office, grappling with a whirlwind of symptoms that seemed to be overtaking my life – from troublesome movements to gut issues and even difficulties with my voice. My mind raced with concerns, fearing the worst as many in my family had battled multiple sclerosis. But within five minutes of that appointment, the truth hit me like a thunderbolt: Parkinson's Disease, at the age of 48.
From that moment, I knew the path ahead would be arduous. For months, tears seemed to flow effortlessly, knowing that this relentless condition would demand meticulous preparation and a seemingly endless stream of doctor visits. Yet, amid the turmoil, I made a silent vow to confront this challenge of young onset Parkinson’s head-on, refusing to let it dictate the course of my life.
Though initially reticent to share my diagnosis with others, I was met with overwhelming support from friends, family, and colleagues when I finally opened up. Many individuals hesitate to disclose their Parkinson's Disease diagnosis due to the fear of being underestimated or limited in their capabilities. Their unwavering encouragement became a source of strength.
Regrettably, the initial neurologist who diagnosed me lacked the compassion and understanding I desperately needed. Determined not to be adrift in uncertainty, I took the reins of my care, seeking out the guidance of my primary care physician who, despite not being a specialist, emerged as a steadfast ally in navigating this new reality. Together, we forged a path forward, collaborating weekly to ensure I received the best possible care.
Building a comprehensive care team around me became essential, a tangible way to regain some semblance of control. With my primary care physician’s help, I built an incredible foundation of support with a chiropractor, physical therapist, dietician, counselor, and personal trainer.
Beyond receiving care, I also found purpose in giving back and making a difference. I found purpose in educating medical students during my visits with my primary care physician, offering her students a rare glimpse into the realities of young-onset Parkinson's.
Exercise emerged as my lifeline. I committed to a goal of cycling 1,000 minutes per month, and embracing activities like Rock Steady Boxing, pushing my physical limits but also a sanctuary amid the chaos.
In my quest for knowledge and understanding, I stumbled upon StrivePD, a tool that helped me track my symptoms and provided invaluable insights into their fluctuations, like with my tremor or dyskinesia. It is amazing how this type of technology can provide such incredible insights into one’s own Parkinson’s that many others would not notice. Armed with this newfound awareness, I confronted challenges head-on, acknowledging the difficulties posed by tremors during activities like driving, yet refusing to let fear dictate my actions.
As I continue my journey, I hope to leverage the endless amount of data from StrivePD and share it with my support team to approach my disease more strategically.
Over the last year, I’ve recognized the power of advocacy. By lending my voice to organizations like the Parkinson's Foundation, I’m hoping to become a mentor for others facing similar battles. Through education and awareness, my goal is to shatter the stigma surrounding young-onset Parkinson's, ensuring no one is navigating this journey alone.
Today, I’m more optimistic than ever because I’m taking a proactive approach to Parkinson’s, seeking out the best care and finding new avenues for staying positive. In the face of adversity, I made a choice – a choice to seize control of my destiny, to refuse to be defined by a diagnosis.
About StrivePD:
StrivePD is the next generation of Parkinson’s care.
StrivePD is a free iOS disease management application — FDA-cleared on the Apple Watch — that passively collects tremor and dyskinesia data via Apple’s Movement Disorder API. Explore interactive charts to track your symptoms over time and understand how medications and physical activity impact you. Gain insights to guide your care journey, sharing data with your clinical specialists for a personalized strategy. Download the StrivePD app on the Apple App Store today.
Download the app on App Store and join our program waitlist. Our patient specialist will contact you with more info regarding how to involve your care team.
