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Retired psychiatrist Scott Cunningham was diagnosed with posterior cortical atrophy (PCA) in December 2020 after years of difficulties with visual and spatial tasks. His and his wife Anne’s account describes how symptoms were initially treated as an eye problem and highlights challenges around diagnosis and care.
Retired psychiatrist Scott Cunningham was diagnosed with posterior cortical atrophy (PCA) in December 2020, after years of growing difficulty with tasks involving vision and spatial judgment. In an interview with Being Patient, Cunningham and his wife, Anne, described how symptoms were first attributed to an eye problem and how an ophthalmologist eventually recognized that his eyeballs appeared healthy, helping redirect the search toward the brain.
Cunningham said early signs included being unable to cut a board straight, assemble a log rack from instructions, or manage detailed work on a computer. His wife had noticed concerns, he said, though he initially regarded the difficulties as isolated frustrations. Over time, family board games also became hard to follow, particularly one that required recognizing and rotating shapes. He said the experience was demoralizing.
He sought eye care and was told he might have cataracts. After undergoing cataract surgery in both eyes, Cunningham said his vision improved somewhat but still did not feel right. The ophthalmologist later emphasized that his eyeballs appeared normal. The interview describes that observation as a turning point before further evaluation and a brain scan confirmed the PCA diagnosis.
According to the report, Cunningham later learned he carries two copies of the ApoE4 gene and is participating in the third year of a five-year gene therapy clinical trial. He and Anne also discussed his neurologist’s advice against anti-amyloid treatment in light of his ApoE4 status. The interview does not provide the trial’s name, its results, or detailed medical records supporting the treatment decision.
When Visual Changes Point Beyond the Eyes
The account illustrates why PCA can be difficult to identify: problems may first appear as trouble interpreting visual information or judging space, rather than as a familiar memory complaint. Someone may be able to see an object yet struggle to locate it, read, judge distances, or understand how shapes relate to one another. Cunningham’s experience shows how such changes can be mistaken for an eye condition, delaying recognition of a neurological cause.
His story is one person’s account, not a measure of how often PCA is missed or a guide to how every patient’s symptoms progress. Still, it points to practical consequences of diagnosis: changes in ordinary tasks can affect independence and participation in family activities. Anne said that vision-related services are often missing from PCA care, and described practical adjustments as important to helping Scott remain independent. The interview does not specify those services or provide evidence about their availability across health systems.
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A Diagnosis After Years of Symptoms
Being Patient describes PCA as a rare form of Alzheimer’s disease that often first affects visual processing and spatial skills rather than memory. The condition can interfere with reading, judging distances, finding objects, or interpreting what is seen, even when eyesight itself is relatively normal. These are general points in the source report; they do not establish that every person with PCA experiences the same symptoms.
Cunningham said his difficulties had begun several years before his diagnosis, with subtle problems that became more apparent over time. The interview does not give a complete clinical timeline or detail all tests performed. It does describe an ophthalmologist’s role in recognizing that the problem did not appear to lie in the eyes, followed by brain imaging that confirmed the diagnosis in December 2020.
The interview was part of Being Patient’s “Journey to Diagnosis” series, sponsored by Eisai. Being Patient stated that the sponsor had no role in selecting guests, shaping questions, or reviewing the interview before publication. That disclosure gives readers relevant information about the report’s sponsorship while the medical and personal claims remain attributable to the couple and the publication.
““I found that I couldn’t do some work that normally I could do easily, like cut a board in half.””
— Scott Cunningham, describing his early difficulty with familiar tasks
Questions Beyond the Diagnosis
The interview does not identify the exact diagnostic tests beyond saying that a brain scan confirmed PCA, nor does it provide the scan findings, the name of the gene therapy trial, or any trial outcome. Cunningham’s report that he carries two copies of ApoE4 and that his neurologist advised against anti-amyloid treatment reflects the couple’s account; the source gives no additional clinical detail explaining the individual treatment assessment.
The account also does not establish what services are available to people with PCA generally or how Cunningham’s current abilities have changed. His experience should not be treated as a diagnostic checklist. Anyone concerned about changes in vision, perception, or daily functioning would need an assessment from qualified health professionals; this report is not medical advice.
Trial Participation and Ongoing Care
At the time described in the interview, Cunningham was in the third year of a five-year gene therapy clinical trial. The source does not state when the trial will end, what outcomes it measures, or when results may be reported, so no conclusion about its effectiveness can be drawn from his participation.
The couple’s account also leaves the longer-term care questions open, including what vision-focused support may be available and how practical changes can sustain independence as needs evolve. The next public milestones would be further information from the trial and any updates the couple or clinicians choose to share; neither is specified as scheduled in the report.
Key Questions
What is posterior cortical atrophy?
Posterior cortical atrophy is described in the Being Patient report as a rare form of Alzheimer’s disease that often affects visual processing and spatial skills early. It can make tasks such as reading, finding objects, or judging distances difficult.
What symptoms did Scott Cunningham describe?
Cunningham recalled trouble cutting a board straight, following assembly instructions, handling detailed computer tasks, and recognizing or rotating shapes during a board game. These are his reported experiences, not symptoms that every person with PCA will have.
How was Cunningham’s PCA diagnosed?
After eye treatment did not resolve his difficulties, an ophthalmologist observed that his eyeballs appeared healthy. The report says a subsequent brain scan confirmed PCA, but it does not give further details about the evaluation.
Is PCA the same as an eye disease?
No. The report describes PCA as a neurological condition affecting how the brain processes visual information. A person may have difficulty interpreting what they see even when the eyes themselves are relatively normal.
What is known about Cunningham’s clinical trial?
Being Patient reported that Cunningham was in the third year of a five-year gene therapy clinical trial. It did not name the trial or report results, so his participation does not show whether the treatment is effective.
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