TL;DR
Turn quiet afternoons into listening time
- Thousands of audiobooks, podcasts and originals
- Listen on your phone, tablet or Echo — also offline
- Cancel anytime
Retired psychiatrist Scott Cunningham was diagnosed with posterior cortical atrophy (PCA) in December 2020, after years of problems with visual and spatial tasks that were not explained by his eyesight. In a Being Patient interview, Scott and his wife, Anne, described how the diagnosis was reached and how the condition has affected daily life.
Retired psychiatrist Scott Cunningham was diagnosed with posterior cortical atrophy (PCA) in December 2020, after years of increasing difficulty with tasks involving vision and spatial processing. In an interview with Being Patient, Scott and his wife, Anne, described how the symptoms were initially treated as possible eye problems before an ophthalmologist recognized that his eyeballs appeared normal and further evaluation led to the diagnosis.
Scott said his difficulties had begun roughly five or six years before diagnosis, though Anne recalled early signs appearing six or seven years earlier. He described being unable to cut a board straight or assemble a log rack he would previously have handled easily. He also found computer-based household finances increasingly difficult and stopped managing the detailed entries, a change he said had stretched over about 10 years.
Visual challenges became more apparent in activities such as reading an analog clock and playing board games. Scott said he struggled with Qwirkle, in which players identify and arrange shapes, and eventually sat out or relied on family members for help. He first sought care for his vision and underwent cataract removals in both eyes, but said his vision still did not feel right afterward.
According to the couple, the ophthalmologist later emphasized that Scott’s eyeballs appeared normal, suggesting the difficulty was not simply an eye problem. The source report says a brain scan confirmed PCA. Scott also said he carries two copies of the ApoE4 gene and is participating in the third year of a five-year gene therapy clinical trial. These are details from the interview; the report does not provide the trial’s name or results.
When Visual Problems Point Beyond the Eyes
PCA can affect a person’s ability to interpret visual information and judge spatial relationships, rather than beginning with the memory problems many people associate with Alzheimer’s disease. The Cunningham account illustrates how a person can struggle with practical tasks even when the eyes themselves are not the source of the problem. That distinction matters because persistent difficulties may prompt repeated eye-focused care before the cause is identified.
The interview also shows the effects on daily routines and independence: Scott described giving up household financial tasks and board games that had once been familiar. Anne said vision services are often missing from PCA care and discussed practical adjustments that have helped him remain independent. The account is an individual experience, not evidence that every person with PCA will have the same symptoms or care pathway.
Products Worth Considering
Philips Hue Large Smart Light Tube, Black – White and Color Ambiance LED Color-Changing Light – 1 Pack
Dreame L50 Ultra Robot Vacuum and Mop
Dyson Ball Animal 3 Corded Upright Vacuum
As an affiliate, we earn on qualifying purchases.
How the Diagnosis Took Shape
Being Patient describes PCA as a rare form of Alzheimer’s disease that tends to affect vision and spatial processing first. Possible difficulties include interpreting what is seen, judging distance, reading, and finding objects, even when eyesight is relatively normal. The source report says that people with PCA may initially seek help for their eyes and that reaching the correct diagnosis can take time.
Scott had worked as a psychiatrist for 40 years and said he had not expected Alzheimer’s to affect him. He recalled no family history of the disease. His symptoms were subtle at first and, in his telling, became clearer in retrospect as more everyday tasks grew difficult. The interview was part of Being Patient’s “Journey to Diagnosis” series, sponsored by Eisai; the publication says the sponsor did not select guests, shape questions, or review the interview 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
Details the Interview Leaves Open
The source account does not give the date of the brain scan, the full diagnostic work-up, or the name and design of Scott’s gene therapy trial. It also does not report trial outcomes or explain what clinical benefit, if any, has been observed for Scott. His participation should not be taken as evidence that the therapy is effective.
The interview says Scott’s neurologist advised against anti-amyloid treatment because of his ApoE4 status, but it does not provide the clinician’s reasoning, the specific treatment considered, or details about Scott’s individual risk assessment. The report likewise does not specify which vision services were unavailable to the couple or describe every practical change they made at home.
Following Scott’s Trial and Care
Scott was in the third year of a planned five-year gene therapy clinical trial when the Being Patient interview was published. The source does not state when the trial is due to conclude or when results may be reported. Further updates would be needed to establish what happens in the study and whether its findings apply beyond individual participants.
For the Cunninghams, the account points to ongoing needs around practical support and vision-related care, alongside medical follow-up. The report does not announce a new diagnosis guideline or treatment change; it documents one couple’s experience and the questions they say remain important for people living with PCA and their caregivers.
Key Questions
What is posterior cortical atrophy?
PCA is a rare form of Alzheimer’s disease that often affects visual and spatial processing early. A person may have trouble interpreting what they see or judging distances even when the eyes themselves appear healthy.
What early difficulties did Scott Cunningham describe?
Scott recalled struggling to cut a board straight, assemble a log rack, manage detailed computer entries, read an analog clock, and play a shape-based board game. These are details from his personal account, not a checklist that applies to everyone.
Why did the couple initially seek eye care?
Scott was concerned about his vision. He underwent cataract removals in both eyes, but said the problem persisted. His ophthalmologist later noted that his eyeballs appeared normal, after which further evaluation led to a brain scan and the PCA diagnosis.
Is Scott’s gene therapy trial proven to treat PCA?
The interview says Scott was in the third year of a five-year gene therapy trial, but it does not give the trial name or results. His participation alone does not establish that the therapy works.
Source: rss
