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

TL;DR

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Scott Cunningham was diagnosed with posterior cortical atrophy (PCA), a rare form of Alzheimer’s disease that can affect vision and spatial processing before memory, in December 2020. In an interview with Being Patient, Scott and his wife, Anne, described years of subtle difficulties, repeated eye treatment and the process that led to a brain scan and diagnosis.

Scott Cunningham was diagnosed with posterior cortical atrophy (PCA) in December 2020 after years of difficulties with vision-related and spatial tasks, according to an interview with Scott and his wife, Anne, published by Being Patient. PCA is a rare form of Alzheimer’s disease that can first affect how a person interprets what they see, rather than presenting chiefly as memory loss.

Scott, a retired psychiatrist, said his problems began gradually. Tasks he had previously handled, including cutting a board straight and assembling a log rack from instructions, became difficult. He also described trouble managing detailed computer work and playing board games that required him to interpret shapes and their positions. Anne said some changes had concerned her even before Scott recognized a pattern.

Scott initially sought help for his vision. An ophthalmologist suspected cataracts, and he underwent cataract removal in both eyes. He said his vision improved somewhat but still did not feel right. On a later visit, the ophthalmologist told him his eyeballs appeared normal, according to Scott’s account. The interview says a brain scan eventually confirmed PCA, but the supplied report excerpt does not provide the scan findings or describe the full diagnostic process.

Scott also told Being Patient that he carries two copies of the ApoE4 gene and is participating in the third year of a five-year gene therapy clinical trial. He said his neurologist advised against anti-amyloid treatment because of his ApoE4 status. Those details are part of the couple’s account; the report excerpt does not identify the trial, provide its results or explain the clinician’s full reasoning.

When Vision Problems Point Beyond the Eyes

The couple’s account shows how PCA-related difficulties can be mistaken for problems with eyesight or dismissed as isolated frustrations. The condition can affect visual interpretation and spatial processing even when the eyes themselves are relatively normal, the report explains. Recognizing that distinction may help patients and clinicians consider neurological causes when vision-related tasks remain difficult after eye treatment.

Scott’s experience also illustrates the practical effects of symptoms that may be hard for others to see: handling household projects, reading a clock, using a computer or joining a game became more challenging. Anne said the couple made practical changes to help Scott remain independent and argued that vision services are often missing from PCA care. The interview does not evaluate how commonly those services are unavailable, but it records a caregiver’s view of a care gap.

Symptoms Before the 2020 Diagnosis

PCA is described in the report as a rare form of Alzheimer’s disease that often begins with changes in vision and spatial processing, including difficulty reading, judging distances, locating objects or interpreting what is seen. Memory may not be the first or most prominent concern. The supplied material does not give prevalence figures or detailed diagnostic criteria.

Scott said his difficulties had become apparent several years before his diagnosis. His account includes trouble with home projects and board games, followed by concerns that led him to consult an ophthalmologist and receive cataract surgery. The diagnosis was made in December 2020, after a brain scan, according to the report. The interview was part of Being Patient’s “Journey to Diagnosis” series, sponsored by Eisai; the publication said the sponsor did not choose 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. It came out wackadoodle.””

— Scott Cunningham, describing a home repair task

Details the Interview Leaves Open

The supplied report excerpt does not specify the scan results, the clinicians involved in reaching the diagnosis or which diagnostic tests were used beyond imaging. It also does not give the name or design of Scott’s gene therapy trial, its eligibility criteria, or any findings. His participation does not establish that the trial is effective.

The excerpt does not provide the neurologist’s full explanation for advising against anti-amyloid treatment, nor does it establish whether that advice applies to other people with two ApoE4 copies. Treatment decisions and risks depend on an individual’s clinical circumstances; readers should discuss medical decisions with a qualified clinician. The material also does not state what specific adaptations or vision services the couple uses.

Trial Follow-Up and Ongoing Care

According to the interview, Scott was in the third year of a five-year gene therapy clinical trial at the time described. The supplied material gives no schedule for later trial updates or results, so the next research milestone cannot be confirmed from this account.

For the couple, the report focuses on continuing day-to-day adjustments and the need for care that accounts for visual and spatial difficulties as well as other symptoms. No new appointment, treatment decision or clinical announcement is reported. Further details about Scott’s trial participation and the services he receives remain unreported in the supplied excerpt.

Key Questions

What is posterior cortical atrophy?

PCA is a rare form of Alzheimer’s disease that can affect visual interpretation and spatial processing. People may have difficulty reading, locating objects or judging distances even when their eyes are relatively normal.

What symptoms did Scott Cunningham describe?

Scott described difficulty with tasks such as cutting a board straight, following assembly instructions, computer work and board games. He also sought care for vision problems that persisted after cataract surgery.

When was Scott diagnosed?

The Being Patient report says Scott was diagnosed with PCA in December 2020, after a brain scan. The supplied excerpt does not give further details of the scan or diagnostic assessment.

Does the report say that gene therapy works for PCA?

No. Scott said he was in the third year of a five-year gene therapy clinical trial, but the report excerpt gives no trial results or evidence that the treatment is effective.

Source: rss