When I heard about Joseph's announcement that he had been "un-diagnosed" with Parkinson's, I was shocked. Until I wasn't. You see, my background is in healthcare risk management and compliance, where mistakes occur in hospitals. Every complaint, error, and variance ends up on the desk of someone like me. No diagnostic test is perfect or without error. I could bore you by explaining sensitivity vs. specificity, but we all became experts during the pandemic. Ever take a test when your entire family is sick, and one of you tests negative while all the rest test positive? There you go.
Joseph's story is more than a tale of diagnostic error, although that is important too. Research has shown that perhaps a quarter of people with Parkinson's are misdiagnosed in the first year. The Dopamine Transporter Scan, or DaT, is often touted as the test for Parkinson's, but it is simply another tool in the toolbox; it is not perfect. As we move toward the era of biomarker tests—blood, spinal fluid, etc.—it is essential to remember that all tests can and do fail some percentage of the time. But this is not just a tale of diagnostic error. It's a case study of an experience that so many of us share: doctors who simply don't listen to us, who dismiss our feelings and insights into our conditions, making us doubt our own bodies. How one doctor's opinion influences the next and the consequences that follow can be devastating, yet it's often treated as just a statistical anomaly.
Joseph's story is also a cautionary tale about another often glossed-over issue that can leave a trail of destruction in its wake: dopamine agonists and impulse control issues. Long the stuff of whispers and shame, these experiences are now increasingly being shared by brave individuals like Joseph Schweinzer. A velvety-voiced 47-year-old family man and long-time member of the YOPN community, Joseph was diagnosed in 2020 amidst the global pandemic. He had no history of the issues some of us are warned about—gambling, sex, or shopping. No way. Never. But the dopamine receptors said otherwise, as did his credit card bills.
You can hear the rest of Joseph's story on our upcoming podcast.
This month's YOPN Living Well Starts podcast marks a new direction, perhaps even the beginning of something quite unique. It's real talk about the things that no one else is discussing. I hope you will listen and let us know what you think. Feedback is always appreciated. And you know what we say: "Once young onset, always young onset." You are always a part of this community, Joseph. The YOPN podcast is available for free on the YOPN website, Spotify, and Apple.
Esther Labib-Kiyarash, MSHA, CPHQ, a former hospital Quality Director turned Parkinson’s Ambassador, resides in West Texas with her husband, a Hospital Pharmacy Director, and their two children. With 20 years of marriage, she passionately advocates for Parkinson's awareness.
