The PSPA Report: Why the Focus on Misdiagnosis Matters
I have been reading the latest PSPA (PSP Association) report and highly recommend it: https://www.pspassociation.org.uk/pspa-survey-report-2025/ One of its most important findings is something I have written about before, but which the PSPA addresses with far greater authority and scale: misdiagnosis. According to the report, 58% of people living with PSP or CBD were initially diagnosed […]
Help! Is Anyone Listening? Why My PSP Delay Was Both a Blessing and a Curse
I was diagnosed with PSP (Progressive Supranuclear Palsy) in early 2025, but it could have been much earlier. Like many neurodegenerative diseases – PD, ALS, Alzheimer’s – it’s never 100% certain until autopsy. That uncertainty gave me three to five years of ignorant bliss, for which I’m grateful, but it’s terrible for the science of […]
Misdiagnosis – The Emotional Cost Biomarkers Could Spare
From theoretical science to the real world of emotion and consequences, misdiagnosis in neurodegenerative diseases like Progressive Supranuclear Palsy (PSP) carries a heavy toll. Yesterday, I shared a scientific perspective on biomarkers. Today, I’m speaking from the heart about my journey and the urgent need for change. The Rollercoaster of Misdiagnosis I often make it […]