What Is Posterior Cortical Atrophy? One Couple’s Road to Diagnosis | Anne & Scott Cunningham
Being Patient
271 views
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.html
Journey to Diagnosis: https://beingpatient.com/journey-to-d...
Posterior cortical atrophy (PCA) is a rare form of Alzheimer's disease that tends to show up first in vision and spatial processing rather than memory. People living with PCA may have difficulty interpreting what they see, judging distances and spatial relationships, reading, or locating objects, even when their eyesight itself is relatively normal.
Scott Cunningham, a retired psychiatrist who practiced for 40 years, was diagnosed with PCA in December 2020. His symptoms had begun years earlier with subtle changes, including trouble cutting a board straight, reading an analog clock, and assembling a log rack. His wife, Anne Cunningham, a social worker, began piecing together what might be happening before a brain scan confirmed the diagnosis. Scott later learned that he carries two copies of the ApoE4 gene and is now in the third year of a five-year gene therapy clinical trial.
In this conversation with Being Patient founder Deborah Kan, Anne and Scott shared the road to Scott’s diagnosis, including the ophthalmologist who finally realized the problem was not with his eyes and what it was like to learn his diagnosis through a patient portal before speaking with a doctor. They also discussed why Scott’s neurologist advised against anti-amyloid treatment because of his ApoE4 status, the vision services Anne believes are often missing from PCA care, and the practical changes that have helped Scott remain independent.
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If you loved watching 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: Twitter: Being_Patient_
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LinkedIn: LinkedIn: being-patient
Being 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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0:00 Intro
0:10 What is posterior cortical atrophy (PCA)?
1:18 Scott’s early symptoms
7:16 When an eye doctor realized it wasn’t his eyes
9:31 The signs Anne noticed at home
14:59 How Scott was diagnosed with PCA
17:41 Why PCA can be difficult to understand
20:54 How is PCA diagnosed?
22:32 APOE4 and monoclonal antibody treatment risks
25:35 How Scott is doing five years after diagnosis
27:23 Adapting daily life after a PCA diagnosis
29:24 How PCA affects vision over time
30:07 Home modifications for visual changes
33:12 Staying active and “trying to stay vibrant”
34:39 Traveling and maintaining independence
36:07 How dementia can change friendships and community
38:35 Living fully with PCA
40:04 Final thoughts and advice
2 Comments
What Is Posterior Cortical Atrophy? One Couple’s Road to Diagnosis | Anne & Scott Cunningham
Being Patient
271 views
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.html
Journey to Diagnosis: https://beingpatient.com/journey-to-d...
Posterior cortical atrophy (PCA) is a rare form of Alzheimer's disease that tends to show up first in vision and spatial processing rather than memory. People living with PCA may have difficulty interpreting what they see, judging distances and spatial relationships, reading, or locating objects, even when their eyesight itself is relatively normal.
Scott Cunningham, a retired psychiatrist who practiced for 40 years, was diagnosed with PCA in December 2020. His symptoms had begun years earlier with subtle changes, including trouble cutting a board straight, reading an analog clock, and assembling a log rack. His wife, Anne Cunningham, a social worker, began piecing together what might be happening before a brain scan confirmed the diagnosis. Scott later learned that he carries two copies of the ApoE4 gene and is now in the third year of a five-year gene therapy clinical trial.
In this conversation with Being Patient founder Deborah Kan, Anne and Scott shared the road to Scott’s diagnosis, including the ophthalmologist who finally realized the problem was not with his eyes and what it was like to learn his diagnosis through a patient portal before speaking with a doctor. They also discussed why Scott’s neurologist advised against anti-amyloid treatment because of his ApoE4 status, the vision services Anne believes are often missing from PCA care, and the practical changes that have helped Scott remain independent.
----
If you loved watching 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: Twitter: Being_Patient_
Instagram: Instagram: beingpatientvoices
Facebook: Facebook: beingpatientalzheimers
LinkedIn: LinkedIn: being-patient
Being 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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0:00 Intro
0:10 What is posterior cortical atrophy (PCA)?
1:18 Scott’s early symptoms
7:16 When an eye doctor realized it wasn’t his eyes
9:31 The signs Anne noticed at home
14:59 How Scott was diagnosed with PCA
17:41 Why PCA can be difficult to understand
20:54 How is PCA diagnosed?
22:32 APOE4 and monoclonal antibody treatment risks
25:35 How Scott is doing five years after diagnosis
27:23 Adapting daily life after a PCA diagnosis
29:24 How PCA affects vision over time
30:07 Home modifications for visual changes
33:12 Staying active and “trying to stay vibrant”
34:39 Traveling and maintaining independence
36:07 How dementia can change friendships and community
38:35 Living fully with PCA
40:04 Final thoughts and advice