I’m not a scientist, a neurologist, or a diagnostic expert. I’m a patient, someone living through the confusing transition from a diagnosis of Parkinson’s disease (PD) to a diagnosis of Progressive Supranuclear Palsy-Parkinsonism (PSP-P). And to be honest, it’s been disorienting, albeit never a dull moment 🙂 It’s been a journey filled with retiring, giving up driving, using walkers and wheelchairs, and even some amusing tales, like falling over in cemeteries or performing what looked like surgery mid-flight as I changed a pump cannula three times. There have been many other (mostly) amusing stories along the way.
My confusion lies in the fact that some symptoms I associated with Parkinson’s have faded, like tremor (which was mild but has now completely disappeared) and responsiveness to Levodopa medication (which, whether by tablet or pump, was once helpful but now seems to do nothing). Meanwhile, other symptoms have emerged and worsened. My walking has become more difficult, and I’ve started experiencing eye movement challenges, which I later learned are hallmark features of PSP-P.
That shift left me with questions. I asked my doctor and many other experts, but additionally, I did something I don’t usually do, I bought a research paper instead of relying solely on freely available online material. It cost me €35, and to me, it was worth every cent.
The paper is titled “Parkinson’s disease on the way to progressive supranuclear palsy: a review on PSP-parkinsonism” by Ján Necpál, Miroslav Borsek & Bibiána Jeleňová, published in Neurological Sciences in 2021. Its title was exactly what I wanted to read about.
With the help of AI, a lot of my own reading and double-checking, and my truly favorite “work related” pastime, Excel and pivot charting, I dove into the data and produced the chart below.
I have a thirst for information. I needed to understand whether what I’m experiencing is typical, atypical, or somewhere in between. The research reminded me that I’m not a complete fruitcake, but actually following a pretty well-documented route.
From my personal perspective, the findings in this paper parallel my experience so closely that it felt like reading a map of my own symptoms. That’s not a diagnosis.
Below is a summary of my analysis. It’s not medical advice, and I’m not claiming scientific authority. But I’ve tried to cross-reference everything with the study and done my best to ensure accuracy. If you’re going through something similar, I hope this helps you feel a little less alone.
If you’ve been following my journey and aren’t familiar with PSP, this post might feel a bit technical and less emotional. That’s okay (from my side – maybe not yours :-)). This is a snapshot of a very specific part of my experience, and I won’t test you on the details. For those who are navigating similar transitions, I’d love to hear your thoughts or feedback.
To the authors of the paper, if you ever read this, thank you for putting together such a valuable piece of work. It helped me tremendously. I hope my analysis is accurate (I checked and even asked two AI engines to verify it). I highly recommend others purchase and read the article directly (I won’t breach copyright by providing it 🙂 ). I found it a truly valuable resource. My data is a personal interpretation and must not be used for other diagnosis or treatment.
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