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A Being Patient report describes how Scott Cunningham and Sean Terwilliger noticed changes in vision, spatial skills, language and numbers before they were diagnosed with Alzheimer’s. Their accounts show how observations by patients and family members can prompt further evaluation, while the report does not establish how common these diagnostic delays are.
Being Patient has published accounts of Scott Cunningham and Sean Terwilliger, two men who pursued medical evaluation after noticing changes that preceded their Alzheimer’s diagnoses. Their experiences underscore the role that patients’ and families’ observations can play in seeking assessment, though the report does not establish how often similar concerns go unrecognized.
Cunningham, a psychiatrist for 40 years, began having difficulty with tasks involving vision and spatial processing, according to Being Patient founder and CEO Deborah Kan. 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 thought his eyesight was the problem and had cataracts removed from both eyes, but 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 neurologist. A scan in December 2020 confirmed posterior cortical atrophy, or PCA, a form of Alzheimer’s that mainly affects visual and spatial processing. Cunningham’s wife, Anne, had already noticed changes at home, including his difficulty placing cabinet knobs in a straight line.
Terwilliger, a former IT director and educator, said he did not feel fully like himself after a mini-stroke in 2018. Words came more slowly, and numbers became difficult. He asked for 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’s assessment and an Alzheimer’s diagnosis when he was 60.
Why Early Observations Matter
The accounts show how changes first noticed in everyday life can be relevant to medical conversations, even when their cause is not yet known. Cunningham’s difficulty recognizing lanes and reading a clock pointed to a problem that was not explained by the condition of his eyes; Terwilliger’s experience involved changes in language and handling numbers. These examples do not mean that such symptoms alone establish Alzheimer’s or another diagnosis.
For patients and families, recording specific changes and explaining when they began can give clinicians useful information to assess. The report also draws attention to a gap between noticing a problem and receiving an evaluation: Terwilliger said his request for testing was not acted on for years. His account is an individual experience, not evidence of how widespread that delay is.
Kan also said Being Patient is surveying behavioral symptoms of Alzheimer’s, with the stated aim of capturing changes families observe at home. The report presents that effort as one way to document experiences that may not appear in clinical records. It does not provide survey findings or evidence of an effect on care.
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Two Different Diagnostic Journeys
The article appears in Being Patient’s Journey to Diagnosis series, which the publication describes as conversations with people affected by dementia. Kan writes that the series is intended to bring forward experiences that may not otherwise be recorded. The source material does not give a publication date for this installment.
The two accounts involve different symptoms and routes to diagnosis. Cunningham’s vision and spatial difficulties led his eye doctor to recommend further neurological assessment; Terwilliger sought cognitive testing after changes following a mini-stroke. The report says Cunningham’s scan confirmed PCA, while Terwilliger’s cognitive test and subsequent referral preceded his diagnosis. It does not provide their full medical records or details of the evaluations beyond those points.
Kan also relates her mother’s experience: after her mother’s death, Kan found a patient-portal record showing that she had raised concerns about memory five years before her official diagnosis. The account helps explain the report’s focus on early concerns, but it does not describe what happened at that appointment or why diagnosis came later.
“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 in Being Patient
What the Accounts Cannot Establish
The report presents two personal accounts, not a study of diagnostic patterns. It does not show how common delayed evaluations are, whether other factors contributed to either man’s diagnostic timeline, or whether the reported experiences represent patients more broadly. It also does not provide the dates of publication or Terwilliger’s diagnosis beyond his age at the time.
Changes in vision, language, memory or number handling can have multiple explanations. The accounts do not establish that any single symptom means a person has Alzheimer’s. The article offers no clinical guidance for determining a diagnosis, and the survey’s results and methods are not included in the source material.
Further Reporting and Evaluation
Being Patient says its Journey to Diagnosis series will continue to document conversations with people affected by dementia. Kan also invites readers to take the publication’s survey on behavioral symptoms of Alzheimer’s, but the report gives no deadline or timetable for results.
For people concerned about changes in themselves or someone close to them, the article relays Sabbagh’s advice to raise concerns with a doctor and seek another medical opinion if concerns are dismissed. Medical decisions and assessments should be discussed with a qualified health professional; the article does not offer a diagnosis or substitute for clinical evaluation.
Key Questions
What diagnosis did Scott Cunningham receive?
According to Being Patient, a scan in December 2020 confirmed posterior cortical atrophy, or PCA, a form of Alzheimer’s that mainly affects vision and spatial processing.
How did Sean Terwilliger reach a diagnosis?
Terwilliger asked for cognitive testing after changes in language and number skills following a mini-stroke in 2018. The report says a test four years later led to a neurologist’s assessment and an Alzheimer’s diagnosis when he was 60.
Do these symptoms prove someone has Alzheimer’s?
No. The report describes two individual experiences and does not establish that any particular change confirms Alzheimer’s. A qualified health professional can assess concerns and consider possible causes.
What does the report advise if a concern is dismissed?
Kan attributes to neurologist Dr. Marwan Sabbagh the advice to keep asking for help and see another doctor if concerns are dismissed. This is reported guidance, not a diagnosis or individualized medical advice.
Is there evidence that diagnostic delays are common?
The article does not provide population data on diagnostic delays. It reports Cunningham’s and Terwilliger’s experiences, which cannot establish how often similar circumstances occur.
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