Posterior cortical atrophy is a rare form of Alzheimer's disease that shows up first in vision and spatial processing rather than memory — which is why it is so often missed.
Scott Cunningham was a psychiatrist for 40 years. He couldn't cut a board straight. He couldn't assemble a log rack. He stopped being able to read an analog clock, despite a perfect SAT math score. He went through two cataract surgeries before an ophthalmologist realized the problem wasn't his eyes at all. His wife Anne, a social worker, had quietly pieced together what was happening before the MRI confirmed it — a diagnosis the couple first read in a patient portal, before any doctor called.
In this conversation with Being Patient founder Deborah Kan, Scott and Anne Cunningham describe the years of subtle signs that preceded his December 2020 diagnosis, why his ApoE4/4 status led his neurologist to advise against anti-amyloid treatment, the gene therapy trial he's now in year three of, and the vision services Anne argues are almost entirely missing from PCA care. They also talk about what has let Scott stay independent — contrast tape, an induction stove, an orange suitcase — and why he still rollerblades every day.
Journey to Diagnosis is a Being Patient series sponsored by Eisai. As with all of our reporting, the sponsor has no role in choosing guests, shaping questions, or reviewing content before publication.Eisai: https://www.eisai.com/index.htmlJourney to Diagnosis: https://beingpatient.com/journey-to-diagnosis/
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If you loved this Live Talk, visit our website to find more of our Alzheimer’s coverage and subscribe to our newsletter: https://www.beingpatient.com/Follow Being Patient: Twitter: https://twitter.com/Being_Patient_Instagram: https://www.instagram.com/beingpatientvoices/Facebook: https://www.facebook.com/beingpatientalzheimersLinkedIn: https://www.linkedin.com/company/being-patientBeing Patient is an editorially independent journalism outlet for news and reporting about brain health, cognitive science, and neurodegenerative diseases. In our Live Talk series on Facebook, former Wall Street Journal Editor and founder of Being Patient, Deborah Kan, interviews brain health experts and people living with dementia. Check out our latest Live Talks: https://beingpatient.com/live-talks/
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