When Something Feels Wrong, Trust What You Notice

Being Patient founder Deborah Kan has published accounts of two men who noticed changes in their vision or thinking before receiving Alzheimer’s diagnoses, underscoring how patients’ and families’ observations can enter a diagnostic process. The report describes Scott Cunningham’s posterior cortical atrophy diagnosis and Sean Terwilliger’s diagnosis at age 60, while offering personal accounts rather than data on how often diagnosis is delayed.

Cunningham, a psychiatrist who had worked for 40 years, began having trouble with everyday visual tasks several years before his diagnosis, according to Kan’s report. He stopped on a freeway because he could not make out the lanes and later found he could not read an analog clock. He initially suspected an eye problem and had cataracts removed from both eyes. His eye doctor repeatedly found that his eyes were healthy.

After one appointment, Cunningham’s eye doctor contacted his primary care physician and recommended an MRI and a neurologist. A scan in December 2020 confirmed posterior cortical atrophy, or PCA, a form of Alzheimer’s that mainly affects vision and spatial processing. His wife, Anne, a social worker, had already become concerned after seeing changes at home, including his difficulty placing cabinet knobs in a straight line. Kan wrote that Cunningham cried with relief when the condition finally had a name.

Terwilliger’s account involved changes after a mini-stroke in 2018. He said words came more slowly and numbers became difficult. He requested a cognitive test as a baseline, but, according to the report, it took four years, three states and four primary care doctors before he received one. He missed the test’s threshold by one point, which led to a neurologist and an Alzheimer’s diagnosis at age 60.

Why Patients’ Observations Matter

The accounts show how changes noticed in daily life can be important information for clinicians evaluating a person’s health. In Cunningham’s case, the visual difficulties persisted despite normal eye examinations, and his eye doctor’s recommendation led to brain imaging and specialist care. Terwilliger’s experience describes a separate route: his request for cognitive testing eventually led to a neurology referral.

Kan argues that people living with symptoms, and those close to them, may notice changes before they are documented in medical records. That is the author’s conclusion from the experiences she reports, not a finding from a population study. The article provides no figures on diagnostic delays or evidence that the two cases represent all patients. Still, the stories illustrate why recording specific changes and raising them during medical appointments can form part of a diagnostic conversation.

The report also points to the difficulty of interpreting subtle changes. Anne told Kan that signs can be easy to mistake for obstinacy or frustration. A change in vision, word-finding or handling numbers can have different possible explanations; the article does not suggest that these symptoms alone establish Alzheimer’s disease. Their significance in the stories came from persistence, medical assessment and further testing.

Two Paths to a Diagnosis

The report is part of Being Patient’s Journey to Diagnosis series, which presents interviews with people affected by dementia and their families. Kan describes the publication as a journalism-driven platform covering Alzheimer’s, dementia and brain health. The piece is written as a letter to readers and connects the two interviews with Kan’s own family experience.

Kan says she found, after her mother’s death, a patient-portal record showing that her mother had raised memory concerns with a doctor five years before her official diagnosis. The report does not provide details of that appointment or explain what followed at the time. Kan uses the discovery to reflect on how an individual’s early concern can precede a formal diagnosis.

The article also mentions a Being Patient survey about behavioral symptoms of Alzheimer’s, inviting readers to share observations. It gives no survey results, methodology or participation numbers. The survey is presented as an effort to collect experiences that may not appear in medical records, not as clinical evidence about diagnosis or disease rates.

“I wasn’t diagnosing myself with anything, but I was acknowledging an issue, and I could not get anyone to join me on that quest.”

— Sean Terwilliger, as quoted in Deborah Kan’s Being Patient report

What the Accounts Cannot Establish

The report does not state when it was published in the supplied material, and it does not provide medical records or independent clinical accounts for the two cases. The diagnoses and timelines are presented through interviews and Kan’s narrative. It is also unclear what evaluations, if any, Cunningham or Terwilliger received before the events described.

The article does not quantify how common prolonged diagnostic journeys are, compare the men’s experiences with other patients, or identify why each clinician made particular decisions. It does not establish that the symptoms described necessarily indicate Alzheimer’s or PCA. The survey mentioned by Kan has no results or methods in the report, so it cannot be used here to draw broader conclusions.

Further Reporting and Medical Evaluation

Kan says Being Patient is continuing its Journey to Diagnosis series and is collecting responses through a survey on behavioral symptoms of Alzheimer’s. The source gives no publication date for further interviews or timetable for survey findings.

For readers concerned about changes in themselves or someone close to them, the article reports neurologist Dr. Marwan Sabbagh’s advice to keep raising concerns and seek another doctor if those concerns are dismissed. That is guidance attributed to Sabbagh in the source, not a diagnosis or substitute for professional evaluation. The next development described by the report is the publication’s ongoing collection of patient and caregiver experiences.

Key Questions

What happened to Scott Cunningham?

According to Being Patient, Cunningham developed difficulty with visual tasks, including reading an analog clock and seeing freeway lanes. After his eye doctor recommended further evaluation, an MRI in December 2020 confirmed posterior cortical atrophy, a form of Alzheimer’s that mainly affects vision and spatial processing.

How long did Sean Terwilliger wait for a cognitive test?

The report says it took four years, during which he saw four primary care doctors across three states, before he received the test he had requested. It says the result led to a neurologist and an Alzheimer’s diagnosis at age 60.

Do vision or memory changes mean someone has Alzheimer’s?

No. The report does not say these changes alone establish Alzheimer’s. It describes two individual experiences and says the men received diagnoses after medical evaluation. People with health concerns should discuss them with a qualified health professional.

What does the Being Patient report recommend?

Kan says neurologist Dr. Marwan Sabbagh advises people to keep raising concerns and to see another doctor if their concerns are dismissed. The report emphasizes sharing observations with clinicians, but it does not offer a diagnosis for readers.

Source: rss