What Is Posterior Cortical Atrophy? One Couple’s Road To Diagnosis

TL;DR

For listenersOffer from Amazon

Turn quiet afternoons into listening time

• Thousands of audiobooks, podcasts and originals
• Listen on your phone, tablet or Echo — also offline
• Cancel anytime

Try Audible free →Free trial for new members

As an affiliate, we earn on qualifying purchases.Hide

Retired psychiatrist Scott Cunningham was diagnosed with posterior cortical atrophy (PCA) in December 2020, after years of difficulties with visual and spatial tasks that were first treated as possible eye problems. His and his wife Anne’s account, published by Being Patient, illustrates how PCA can be difficult to recognize and how diagnosis can affect care and daily independence.

Retired psychiatrist Scott Cunningham was diagnosed with posterior cortical atrophy (PCA) in December 2020, after years of trouble with tasks involving vision and spatial processing. In an interview published by Being Patient, Scott and his wife, Anne, described how symptoms initially appeared to be eye problems and how an ophthalmologist eventually recognized that his eyeballs seemed healthy, prompting further consideration of a brain-related cause.

Scott told Being Patient that his difficulties began subtly, about six or seven years before the interview. He had been able to do household repairs but began struggling to cut a board straight and assemble a log rack. He also found computer-based financial tasks increasingly difficult and stopped managing the couple’s long-term finances. At the time, he did not connect these changes to a neurological condition.

Scott and Anne said he sought eye care and was told he might have cataracts. He underwent cataract surgery in both eyes, but said his vision still did not feel right. Family board games became harder, particularly one that required him to interpret and rotate shapes. According to the interview, his ophthalmologist later told him his eyeballs appeared normal, helping distinguish the problem from a condition originating in the eyes.

The couple described other parts of the diagnostic experience, including learning the diagnosis through a patient portal before discussing it with a doctor. Scott said he carries two copies of the ApoE4 gene and is participating in the third year of a five-year gene therapy clinical trial. The report says his neurologist advised against anti-amyloid treatment because of his ApoE4 status; it does not provide further details about that clinical decision.

When Vision Changes Point Beyond the Eyes

The Cunninghams’ account shows how PCA can affect everyday visual and spatial tasks without initially presenting as the memory problems many people associate with Alzheimer’s disease. Difficulties reading, judging distances, finding objects or interpreting shapes may be mistaken for eyesight problems, as happened during Scott’s early evaluations.

The story also highlights the practical consequences of delayed recognition. Scott’s problems affected household work, finances and family activities. Anne said vision-related services are often missing from PCA care, and the couple described making practical changes to help him retain independence. Their experience is one account, not evidence that every person with PCA follows the same path or receives the same care.

PCA and Scott’s Diagnostic Timeline

Posterior cortical atrophy is a rare form of Alzheimer’s disease, according to the Being Patient report. It tends to affect visual processing and spatial awareness before memory becomes the main concern. A person’s eyes may be relatively healthy while the brain has trouble interpreting visual information.

Scott, a psychiatrist for 40 years, said he had encountered Alzheimer’s disease variants during medical training but did not expect to experience one himself. His first difficulties were not a clear memory complaint: household projects, computer details and visual elements of board games gradually became harder. After eye treatment did not resolve the problem, an ophthalmologist’s observation that his eyeballs were normal became part of the path toward diagnosis. Scott was diagnosed in December 2020.

Being Patient identifies the interview as part of its “Journey to Diagnosis” series, sponsored by Eisai. The publication says the sponsor did not choose the guests, shape the questions or review the conversation before publication.

“I found that I couldn’t do some work that normally I could do easily, like cut a board in half.”

— Scott Cunningham, in an interview with Being Patient

Questions the Interview Leaves Open

The interview gives the couple’s account of Scott’s symptoms and diagnosis, but it does not specify the full diagnostic tests or explain how clinicians reached the diagnosis. It also does not provide the name, design or results of the gene therapy trial, or say what outcomes Scott has experienced during his participation.

The report says Scott’s neurologist advised against anti-amyloid treatment because he carries two copies of ApoE4, but it does not give the medical rationale or details of an individualized risk assessment. The account does not establish that the same treatment decision applies to other people with PCA or ApoE4. Readers should not treat the interview as medical advice; treatment decisions require discussion with a qualified clinician.

Trial Participation and Ongoing Care

Scott was in the third year of a planned five-year gene therapy clinical trial at the time described in the report. The interview does not state when the trial will end, when results will be released or whether his participation has since changed. No new clinical milestone or treatment decision is announced in the source material.

The couple’s immediate focus, as described in the interview, includes practical adjustments that help Scott remain independent and attention to vision-related needs. Any further update on his health, trial participation or care would depend on information from Scott, his clinicians or the study team.

Key Questions

What is posterior cortical atrophy?

PCA is a rare form of Alzheimer’s disease that often first affects visual processing and spatial awareness. People may have trouble interpreting what they see even when their eyes themselves are relatively healthy.

What symptoms did Scott Cunningham describe?

Scott described difficulty with tasks such as cutting a board straight, assembling a log rack, managing detailed computer entries and recognizing shapes during board games. He also said cataract surgery did not resolve his sense that his vision was not right.

When was Scott diagnosed?

According to the Being Patient report, Scott Cunningham was diagnosed with PCA in December 2020, following several years of changes and evaluations.

Does the report say what treatment Scott is receiving?

The report says Scott carries two copies of the ApoE4 gene and was in the third year of a five-year gene therapy clinical trial. It also says his neurologist advised against anti-amyloid treatment, but gives no further details about the clinical reasoning or trial outcomes.

Source: rss