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A Being Patient first-person report describes two men whose concerns about cognitive or visual changes preceded their Alzheimer’s diagnoses. Their accounts show how observations by patients and family members can prompt evaluation, while the reasons for delays in their individual cases are not fully detailed.
Being Patient founder and CEO Deborah Kan has published a first-person report describing how Scott Cunningham and Sean Terwilliger pursued medical evaluation after noticing changes that eventually led to Alzheimer’s diagnoses. The accounts highlight the role patients’ and relatives’ observations can play in seeking assessment, while also describing delays before testing and specialist care.
Cunningham, a psychiatrist for 40 years, began having trouble interpreting visual information several years before his diagnosis, the report says. He stopped on a freeway because he could not make out the lanes and later told his wife, Anne, that 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 his eyes were healthy, according to Kan’s account.
During a later visit, the eye doctor recognized that the symptoms might have a neurological cause and contacted Cunningham’s primary care physician, recommending an MRI and a neurologist. A scan in December 2020 confirmed posterior cortical atrophy, or PCA, a form of Alzheimer’s that primarily affects visual and spatial processing. Anne, a social worker, had already suspected a brain disease affecting vision, based on changes she observed at home.
Terwilliger’s route to evaluation followed a different course. After a mini-stroke in 2018, he said words came more slowly and numbers became harder to manage. He requested a cognitive test for a baseline, but, according to the report, four years passed and he consulted four primary care doctors across three states before receiving one. He missed the test’s passing threshold by one point, which led to a neurologist and an Alzheimer’s diagnosis at age 60.
Why Early Observations Can Matter
The report centers on the gap that can arise between noticing a change and obtaining an evaluation. Cunningham’s visual difficulties and Terwilliger’s language and number problems were not, by themselves, diagnoses. In their cases, however, continued concern led to further assessment and, ultimately, diagnoses that gave the symptoms a medical explanation.
That distinction matters for patients and families: noticing a change is a reason to discuss it with a qualified clinician, not proof of a particular condition. The report argues that observations from daily life can give clinicians useful information, especially when symptoms are subtle or appear in familiar routines. It does not establish how common these diagnostic delays are or show that every similar symptom indicates Alzheimer’s.
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Two Different Routes to Diagnosis
Kan presents the accounts as part of Being Patient’s “Journey to Diagnosis” series, which is based on interviews with people affected by dementia. She writes that such personal experiences can describe changes that may not appear in medical records. Her report also mentions a Being Patient survey about behavioral symptoms of Alzheimer’s, intended to gather information about changes families observe at home.
The two stories differ in how concerns reached medical care. Cunningham’s eye doctor connected his continuing visual problems with a possible brain-related cause and recommended further investigation. Terwilliger requested cognitive testing himself and described difficulty getting a clinician to act on that request. Kan also reflects on finding, after her mother died, a patient-portal record showing that her mother had raised memory concerns five years before her official diagnosis. The report does not provide further details about that earlier visit.
““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 report
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What the Accounts Cannot Establish
The report does not explain why Terwilliger’s request for testing was not acted on sooner, or provide records from the doctors he saw. It also does not detail the medical assessments behind either diagnosis beyond Cunningham’s MRI and the testing pathway described for Terwilliger. The accounts are individual experiences, not evidence about how often diagnostic delays occur across health systems.
It is also unclear from the report when it was published. It does not state whether the Being Patient survey has produced results or what those results might show. The reported symptoms and diagnoses should not be treated as a basis for diagnosing another person.
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Further Reporting and Clinical Follow-Up
Kan says Being Patient is continuing its “Journey to Diagnosis” interviews and is seeking responses to its survey on behavioral symptoms of Alzheimer’s. The source does not give a publication date for future findings or a deadline for the survey.
For readers concerned about changes in themselves or someone close to them, the report’s practical point is to describe observed changes to a qualified health professional and raise concerns again if they persist. A clinician can decide whether assessment or referral is appropriate; the article does not recommend a particular test for every person.
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Key Questions
What happened to Scott Cunningham?
According to Deborah Kan’s report, Cunningham developed visual and spatial difficulties and was diagnosed with posterior cortical atrophy after an MRI in December 2020. The report identifies PCA as a form of Alzheimer’s that mainly affects vision and spatial processing.
How long did Sean Terwilliger wait for a cognitive test?
Kan reports that Terwilliger sought a cognitive test after a mini-stroke in 2018 and that four years passed before he received one, after consulting four primary care doctors in three states.
Do visual or memory changes mean someone has Alzheimer’s?
No. The report recounts two individual cases and does not say that these symptoms alone establish Alzheimer’s. A qualified health professional can assess a person’s symptoms and determine whether further evaluation is needed.
What does the Being Patient report recommend if concerns are dismissed?
Kan says neurologist Dr. Marwan Sabbagh advises people to continue raising concerns and seek another doctor if they are dismissed. That is the report’s attributed guidance, not a diagnosis or individualized medical advice.
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