TL;DR
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A Being Patient report recounts how Scott Cunningham and Sean Terwilliger sought medical help for changes that preceded their Alzheimer’s diagnoses. Their experiences highlight delays in recognizing cognitive symptoms and the importance of documenting concerns and seeking further evaluation when they persist.
Two men received Alzheimer’s diagnoses after years of experiencing changes that initially went unexplained, according to a report by Being Patient. Scott Cunningham was diagnosed with posterior cortical atrophy, an Alzheimer’s-related condition that mainly affects visual and spatial processing, in December 2020. Sean Terwilliger received an Alzheimer’s diagnosis at 60 after seeking cognitive testing for years. Their accounts describe how patient and caregiver observations helped bring attention to the changes.
Cunningham, a psychiatrist for 40 years, began having difficulty with tasks involving vision and spatial judgment, according to Being Patient founder and CEO Deborah Kan. He stopped on a freeway because he could not make out the lanes and later said he could not read an analog clock. He initially thought the problem was his eyesight and underwent cataract surgery in both eyes. His eye doctor repeatedly found that his eyes were healthy.
Kan reported that the eye doctor eventually contacted Cunningham’s primary care physician and recommended an MRI and a neurology consultation. A scan in December 2020 confirmed posterior cortical atrophy, or PCA. Kan wrote that Cunningham cried with relief when he learned the diagnosis. His wife, Anne, had noticed changes at home, including difficulty placing cabinet knobs in a straight line, and suspected a brain condition affecting vision.
Terwilliger’s account involved a different set of symptoms. After a mini-stroke in 2018, he felt unlike himself, with slower word retrieval and increasing difficulty with numbers. He asked for a cognitive test as a baseline, but, according to the report, waited four years, saw four primary care doctors across three states, and failed the eventual test by one point. That result led to a neurologist and an Alzheimer’s diagnosis when he was 60.
How Early Observations Can Prompt Evaluation
The accounts show how subtle changes in everyday abilities may be difficult to interpret, particularly when they resemble vision problems or are mistaken for ordinary frustration. They also illustrate why details from people close to a patient can be relevant to a clinical assessment: Anne noticed changes in Cunningham’s spatial judgment, while Terwilliger himself repeatedly raised concerns about cognition.
The report does not establish that all similar symptoms indicate Alzheimer’s or that earlier recognition would have changed either man’s outcome. It does show the practical value of describing specific changes, when they began, and how they affect daily life. For readers, the key point is not to self-diagnose, but to treat persistent concerns as information worth bringing to a qualified health professional and asking about further evaluation.
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Two Paths to an Alzheimer’s Diagnosis
Being Patient is a journalism platform covering Alzheimer’s disease, dementia and brain health. In the report, Kan connects the two men’s experiences to the publication’s Journey to Diagnosis series, which shares accounts from people with dementia and their families. She said those conversations can capture changes that may not appear in medical records before a diagnosis.
The article also describes Kan’s experience with her mother. After her mother died, Kan found a patient-portal entry showing that she had raised memory concerns with a doctor five years before her official diagnosis. The report does not provide details about what happened at that appointment or why the diagnosis came later.
PCA is described in the report as a form of Alzheimer’s that mainly affects vision and spatial processing. Cunningham’s initial visits to an eye doctor reflected that symptom pattern, but the diagnosis followed an MRI and specialist evaluation. Terwilliger’s route involved a request for cognitive testing and a referral to a neurologist after he did not pass the test.
“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 presents two personal accounts, not a study measuring how often patients’ concerns are overlooked or whether delays change health outcomes. It does not include medical records, statements from the clinicians involved, or an independent review of either diagnostic timeline. Details about the precise clinical criteria used in the diagnoses are also not provided.
It remains unclear why Terwilliger waited years for a cognitive test, what discussions took place during the primary-care visits, and whether additional factors affected either man’s care. The article’s examples cannot determine the cause of cognitive or visual changes in other people. Such symptoms can have different explanations, and assessment by a qualified clinician is needed.
Further Reporting and Ongoing Evaluation
Being Patient says its Journey to Diagnosis series will continue to feature conversations about the process of recognizing and diagnosing dementia. Kan also said the outlet is running a survey on behavioral symptoms of Alzheimer’s, seeking reports of changes families observe at home before diagnosis. The report does not give a survey closing date or describe how its results will be analyzed.
For people experiencing persistent changes, the article’s cited advice is to explain specific examples to a health professional and seek another opinion if concerns are dismissed. Any next steps depend on an individual’s symptoms and clinical assessment; the report does not set out a diagnostic protocol or predict outcomes.
Key Questions
What is posterior cortical atrophy?
Posterior cortical atrophy, or PCA, is described in the report as a form of Alzheimer’s that mainly affects visual and spatial processing. Cunningham’s diagnosis followed difficulty with tasks such as reading an analog clock and judging visual information.
How long did Sean Terwilliger wait for cognitive testing?
According to Being Patient, Terwilliger spent four years seeking a cognitive test, during which he saw four primary care doctors across three states. He was diagnosed with Alzheimer’s at age 60 after failing the test by one point and seeing a neurologist.
Do visual or memory changes mean someone has Alzheimer’s?
No. The report describes two individual experiences and does not establish that similar changes always indicate Alzheimer’s. Persistent or concerning symptoms should be discussed with a qualified health professional, who can assess possible causes.
What does the report recommend if concerns are dismissed?
Kan cites neurologist Dr. Marwan Sabbagh advising people to keep asking for help and seek another doctor if their concerns are dismissed. The article also emphasizes sharing concrete examples of changes with a clinician.
Source: rss
