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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, reported by Being Patient, describes how symptoms were initially treated as an eye problem and how an ophthalmologist helped point toward a neurological cause.
Retired psychiatrist Scott Cunningham was diagnosed with posterior cortical atrophy (PCA) in December 2020, after years of trouble with visual and spatial tasks that he and his wife, Anne, initially struggled to explain. In an interview published by Being Patient, the couple described how symptoms persisted despite eye procedures and how an ophthalmologist’s observation that Scott’s eyeballs appeared healthy helped redirect attention toward the brain.
Scott said his difficulties began subtly, years before diagnosis. Tasks he had once managed easily became harder: cutting a board straight, assembling a log rack from instructions, reading an analog clock and handling detailed computer work. He also found it increasingly difficult to follow board games that relied on recognizing and turning shapes. At first, these changes did not strike him as signs of a neurological condition.
His vision concerns led him to an ophthalmologist, who initially suspected cataracts. Scott underwent cataract removal in both eyes, but said his vision still did not feel right. During a later visit, the ophthalmologist stressed that his eyeballs were in good condition. The interview describes that observation as a turning point in considering that the problem might involve how his brain processed visual information, rather than the eyes themselves.
Scott was diagnosed in December 2020. He later learned he carries two copies of the ApoE4 gene, and the report says he is in the third year of a five-year gene therapy clinical trial. The couple also discussed his neurologist’s advice against anti-amyloid treatment in light of Scott’s ApoE4 status, the way he learned the diagnosis through a patient portal before discussing it with a doctor, and practical changes that have helped him remain independent.
When Visual Changes Point Beyond the Eyes
The couple’s account illustrates why PCA can be difficult to recognize: early problems may look like eyesight trouble or everyday clumsiness, while memory loss may not be the first concern. In Scott’s case, changes affected spatial judgment, reading and interpreting visual information, including activities that had previously been familiar.
The story also highlights the value of looking beyond the eye itself when visual complaints persist despite treatment. That does not mean that every ongoing vision problem indicates PCA; the interview is one person’s experience, not a diagnostic guide. But it shows how a clinician’s recognition of normal-looking eyes prompted further consideration of a brain-related cause.
For people living with PCA and their families, the impact can extend to daily activities and social participation. Scott described feeling demoralized when he could no longer take part in a board game as before. Anne also argued that vision-focused services are often missing from PCA care, raising questions about how support can better address the specific difficulties people experience.
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How PCA Affected Scott’s Daily Life
Posterior cortical atrophy is described in the Being Patient report as a rare form of Alzheimer’s disease that tends to affect visual and spatial processing early. A person may have difficulty interpreting what they see, judging distances, reading or locating objects even when the eyes themselves are relatively normal. The report does not give population-level figures for how often PCA occurs.
Scott said some changes had been present for years before the diagnosis. He recalled that detailed computer work had become difficult and that he gradually stopped managing the couple’s long-term finances. Later, challenges with a shape-based board game became particularly apparent. Anne noticed concerns before Scott fully connected the changes, and the couple described a diagnosis process that included eye care before the neurological explanation became clear.
The Being Patient interview is part of its “Journey to Diagnosis” series and was sponsored by Eisai. The publication states that the sponsor had no role in selecting guests, shaping questions or reviewing the conversation before publication. That disclosure is relevant because the interview also discusses Alzheimer’s treatments and a clinical trial.
““Your eyes are — your eyeballs are perfect.””
— Scott Cunningham, as quoted by Being Patient
Questions the Interview Leaves Open
The account does not specify the full diagnostic work-up, the tests used to confirm PCA or how long it took from the ophthalmologist’s observation to the formal diagnosis. It also does not provide clinical details about Scott’s gene therapy trial, its objectives, or any results. His experience should not be taken as evidence that the trial is effective.
The report says Scott’s neurologist advised against anti-amyloid treatment because of his ApoE4 status, but it does not identify the specific medication, explain the clinician’s full reasoning or establish that the same advice applies to other people. Treatment decisions depend on individual circumstances and require discussion with qualified clinicians. The interview also does not provide further detail on the vision services Anne said are lacking.
Trial and Support Details Ahead
According to Being Patient, Scott was in the third year of a five-year gene therapy clinical trial at the time of the report. The interview provides no timetable for results or further updates about his participation. It also does not state whether he or his clinicians expect a change in his treatment plan.
For readers following the story, the next useful developments would be additional information about the trial and the practical vision support available to people with PCA. Anyone experiencing persistent changes in vision or spatial ability should seek an assessment from a qualified health professional; Scott’s account cannot establish a diagnosis for someone else.
Key Questions
What is posterior cortical atrophy?
Posterior cortical atrophy (PCA) is described in the report as a rare form of Alzheimer’s disease that often affects visual and spatial processing early. It can make it difficult to interpret what is seen, read, judge distances or find objects, even when the eyes themselves are relatively healthy.
What symptoms did Scott Cunningham describe?
Scott recalled difficulty cutting a board straight, following assembly instructions, handling detailed computer work and recognizing or turning shapes during board games. He also had concerns about his vision that were not resolved by cataract procedures.
How was Scott’s PCA recognized?
The account says an ophthalmologist observed that Scott’s eyeballs appeared healthy despite his ongoing visual difficulties. The interview does not give the full testing process, but Scott was later diagnosed with PCA in December 2020.
Does Scott’s treatment advice apply to everyone with PCA?
No. The report says Scott’s neurologist advised against anti-amyloid treatment because of his ApoE4 status, but it does not provide enough detail to generalize that advice. Treatment decisions should be discussed with a qualified clinician who knows the person’s medical history.
Source: rss
