Biomarkers – A Game-Changer I Only Met This Weekend!

Last Friday, I posted an overview of my deep dive into my a €35 journey through a research paper on  Parkinson’s Disease (PD) and Progressive Supranuclear Palsy-Parkinsonism (PSP-P). I felt proud after hours of reading, AI cross-checks, and some Excel wizardry. Then came an email from a professor in Tel Aviv. He liked the post but added, “This really underlines the need for biomarker research.” That sentence hit me. I realized I didn’t actually know what biomarkers were. It was like hearing a word you’ve nodded along to for years but never truly understood. I’ve heard it many times (like for me,  the term “gaslighting”) but it just went in one ear and out the other.

I also realized  I’d been misdiagnosed with PD instead of PSP—a critical distinction.  I  don’t blame  doctors for, as biomarkers don’t exist  yet in the PSP world…yet…

So, I spent a few hours learning a little, and I was shocked by how much the dopamine world is lacking, compared to  other  diseases where  biomarkers have advanced and made a huge difference to patients. I wanted to share this with you because  it’s a game-changer we should all understand. Here’s my “Idiot’s Guide to Biomarkers.”

PSP, PD, and Misdiagnosis

PSP is misdiagnosed in 30% of cases, according to research, because it looks so much like PD. Even DaTscans, which I had twice didn’t  tell them apart, nor the large range of atypical variants. PD and PSP both show dopamine depletion. My doctors thought I had PD for five years. I thought I had PD. But now, it’s clear I have, and had, PSP-P, a different beast entirely. There are famous cases of this mix-up. Robin Williams comes to mind, initially diagnosed with PD but later suggested to have Lewy body dementia. It’s not the doctors’ fault; the diseases are just too hard to distinguish without better tools.

Why Early Diagnosis Matters

An earlier PSP diagnosis wouldn’t have changed my treatment (there isn’t one yet), but it would’ve shifted my emotional, financial, and life choices profoundly, like knowing sooner whether to retire, avoid  costly, ineffective PD treatments , or brace for faster progression. It would have reduced the uncertainty  of wondering why my disease was progressing far faster than PD.  Some might prefer not knowing, but clarity empowers us to plan and live better.

More importantly, biomarkers would let doctors focus on the right disease, speeding up research and treatment development for PSP and similar conditions. This diagnostic fog isn’t just personal—it’s stalling progress. Without clear ways to identify PSP, we’re stuck in a loop: misdiagnosis delays research, which delays treatments or a cure. That’s where biomarkers come in, and why the professor’s email hit home.

So… What Are Biomarkers?

Biomarkers are measurable signs in your body that can help doctors figure out what’s really going on. Think of them as fingerprints left behind by a disease, clues that tell a story. They could be:

• Proteins in your spinal fluid
• Changes in your blood
• Patterns in brain scans

For PSP, biomarkers could help:

• Spot the disease earlier
• Tell it apart from PD, MSA, or CBD (which all look similar)
• Track how fast it’s progressing
• Guide future treatments

Right now, we don’t have reliable biomarkers for PSP. That’s why diagnosis is often a guessing game, and why research is so urgent.

Why Biomarkers Matter: Lessons from Other Diseases

Other diseases have  shown how powerful biological clues can be. If we can find reliable biomarkers for PSP, they could transform lives. Here’s what that might look like:

• Alzheimer’s Disease: Biomarkers like amyloid-beta and tau proteins in spinal fluid, and now even blood, have revolutionized diagnosis. They allow detection years before symptoms appear. For PSP, this could mean catching the disease before falls or eye problems start.
• Cancer: Biomarkers like HER2 in breast cancer guide treatment decisions, enabling personalized medicine. For PSP, biomarkers could ensure future therapies target the right disease processes.
• Multiple Sclerosis (MS): Biomarkers in spinal fluid help confirm diagnoses and track disease activity, reducing misdiagnosis. For PSP, this could mean fewer years of uncertainty.

These examples show that biomarkers are game-changers. PSP deserves the same clarity to give patients and families hope and direction.

What I Found in My Few Hours of Research

Sadly, there’s a huge game of catch-up in the PSP world, but work is being done. Here’s the simplified version of what scientists are working on:

• The Big Protein Hunt: In 2024, researchers looked at spinal fluid from 120 people. One protein, ATP6AP2, stood out as more prevalent in PSP than PD.
• UCSF’s High-Tech Protein Scanner: Scientists found patterns in spinal fluid, especially proteins linked to nerve growth, that might act like PSP’s unique signature.
• CurePSP’s Fast-Track Program: Funding research to turn discoveries into real-world tests, speeding up diagnosis and drug trials.
• New Drug Trials Using Biomarkers: Experimental drugs like AADvac1 and AZP2006 are being tested for PSP, with biomarkers used to track effectiveness.

My Chart and the Road Ahead

As part of my journey, I’ve created a chart that maps my symptoms. It helps  me understand my condition and feel more prepared and in control, and it sparked my curiosity about biomarkers.  I’ve shared it below, but I hope biomarkers will one day make such charts less necessary by providing clearer diagnoses sooner.

Final Thoughts

I’m not a scientist, just a retired Excel-loving accountant with a personal stake in this fight. Biomarkers won’t change my diagnosis today, but they could help someone else avoid years of uncertainty tomorrow. And maybe, just maybe, they’ll lead to a treatment. I’m grateful to the professor for pointing me toward something I should’ve understood sooner. I got so used to thinking I had PD that I didn’t question it enough. Now, I’m asking questions, and I hope you will too.

By the way, if you didn’t know what a biomarker was, please let me know because it’ll make me feel better. To make it simple, just reply to me with “😉” or similar. If you did, give yourself a pat on the back and don’t reply.