When Something Feels Wrong, Trust What You Notice

TL;DR

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Being Patient founder Deborah Kan described how Scott Cunningham’s visual and spatial problems and Sean Terwilliger’s cognitive changes preceded their Alzheimer’s diagnoses. Their accounts highlight the value of taking symptoms seriously, while the report does not establish how common these diagnostic delays are or whether the same approach applies to every patient.

Being Patient founder Deborah Kan has recounted how two men received Alzheimer’s diagnoses after they and their families raised concerns about changes in vision, spatial awareness, language or number skills. Their experiences, described in a first-person report, illustrate how observations from patients and people close to them can contribute to seeking further evaluation, though they do not establish that any particular symptom confirms dementia.

Kan’s account focuses first on Scott Cunningham, a psychiatrist with 40 years of experience. Several years before his diagnosis, he stopped on a freeway because he could not make out the lanes. He also told his wife, Anne, that he could not read an analog clock. Cunningham initially suspected an eyesight problem and underwent cataract surgery in both eyes. According to Kan, he returned to his eye doctor because the difficulties continued; the doctor found his eyes were healthy.

Kan writes that the eye doctor eventually contacted Cunningham’s primary care physician and suggested an MRI and a neurologist. A scan in December 2020 led to a diagnosis of posterior cortical atrophy, or PCA, which Kan describes as a form of Alzheimer’s that mainly affects visual and spatial processing. Anne had suspected a brain-related cause earlier, after noticing changes in tasks such as placing cabinet knobs. The report does not provide medical records or further clinical details about Cunningham’s evaluation.

The second account concerns Sean Terwilliger, a former IT director and educator. After a mini-stroke in 2018, he said words came more slowly and numbers became difficult. Kan reports that he asked for a cognitive test as a baseline, but waited four years and consulted four primary care doctors in three states before receiving one. He missed the test’s threshold by one point, according to the article, and was referred to a neurologist. He was diagnosed with Alzheimer’s at age 60. The report does not name the test or provide additional diagnostic details.

Why Patients’ Observations Matter

The accounts show how symptoms experienced at home or in daily life may become part of the information clinicians use when deciding whether further assessment is appropriate. Changes in familiar tasks—such as reading a clock, judging spatial alignment or handling numbers—can be hard for families to interpret, and the report says they may be mistaken for ordinary frustration or behavior. The stories make a case for describing specific changes and their timing to a health professional, rather than treating an observation as a diagnosis.

Kan also points to a gap between noticing a problem and getting an evaluation. Terwilliger’s reported four-year wait and Cunningham’s visits for persistent visual difficulties underscore that seeking help may involve repeated conversations. These individual experiences do not show how often delays occur or establish that all patients with similar symptoms have Alzheimer’s. But they raise a practical issue for patients and caregivers: concerns should be heard and assessed in light of a person’s health history and other possible explanations.

For care and research, family observations may also help record changes that are not readily apparent during a brief appointment. Kan says Being Patient is surveying behavioral symptoms of Alzheimer’s, arguing that changes noticed by families before diagnosis deserve to be counted. The article does not provide survey findings, so its potential contribution remains to be seen.

Two Routes to a Diagnosis

The report is part of Being Patient’s Journey to Diagnosis series, which Kan says is based on conversations with people affected by dementia and their families. Kan founded the journalism platform after her mother received an Alzheimer’s diagnosis. In this piece, she connects the two men’s accounts with her own discovery that her mother had raised memory concerns with a doctor five years before her official diagnosis. She says she does not know what led her mother to raise the concern at that earlier visit.

The two cases describe different routes through the health system. Cunningham’s persistent visual problems were initially addressed through eye care before his doctor recommended brain imaging and a neurology visit. Terwilliger, according to Kan, requested cognitive testing after changes following a mini-stroke, then waited years to receive it. These are reported personal histories, not a comparison of diagnostic pathways across a larger group.

Kan cites neurologist Dr. Marwan Sabbagh as advising people whose concerns are dismissed to keep seeking care and consider seeing another doctor. The article does not include a direct interview with Sabbagh or detailed guidance on which tests clinicians should use. Its central point is narrower: patients’ accounts and family observations can be shared with qualified health professionals as part of an assessment.

“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 by Deborah Kan

What These Cases Cannot Establish

The article does not say how representative Cunningham’s and Terwilliger’s experiences are, how often people with similar symptoms receive delayed evaluations, or what factors contributed to each delay. It also does not provide their medical records, the specific cognitive test Terwilliger took, or the full clinical reasoning behind either diagnosis. Symptoms alone do not establish Alzheimer’s; the report offers personal accounts, not a diagnostic guide.

Kan’s proposed survey on behavioral symptoms is described as ongoing, but the article gives no results, sample size or publication schedule. It is also unclear whether the survey will be analyzed or published in a way that can inform clinical practice. The account provides no update on either man’s condition after diagnosis.

Further Reporting and Evaluation

Being Patient says its Journey to Diagnosis series will continue sharing conversations with people affected by dementia. Kan also invites readers to take the publication’s survey on behavioral symptoms; the report does not state when findings might be released. For people who notice persistent changes, the article’s cited advice is to raise those observations with a health professional and seek another medical opinion if concerns are dismissed. Decisions about testing and diagnosis remain matters for qualified clinicians.

Key Questions

What happened to Scott Cunningham?

According to Deborah Kan’s report, Cunningham experienced problems with visual and spatial tasks, including difficulty making out freeway lanes and reading an analog clock. After an eye doctor suggested further evaluation, a scan in December 2020 led to a diagnosis of posterior cortical atrophy, a form of Alzheimer’s.

How long did Sean Terwilliger wait for cognitive testing?

Kan reports that Terwilliger waited four years and saw four primary care doctors in three states before receiving the test he had requested. He was later referred to a neurologist and diagnosed with Alzheimer’s at age 60.

Do visual or memory changes prove someone has Alzheimer’s?

No. The report describes two individuals’ experiences; it does not say that any single symptom confirms Alzheimer’s. Persistent or concerning changes should be discussed with a qualified health professional, who can assess possible causes and decide whether further evaluation is appropriate.

What advice does the article give if a concern is dismissed?

Kan attributes advice to neurologist Dr. Marwan Sabbagh: keep pursuing an evaluation and consider seeing another doctor if concerns are dismissed. The article does not provide a detailed testing protocol.

Source: rss