When Something Feels Wrong, Trust What You Notice

TL;DR

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A Being Patient report describes Scott Cunningham’s posterior cortical atrophy diagnosis and Sean Terwilliger’s Alzheimer’s diagnosis after years of cognitive concerns and delays. The cases highlight the role of patients’ and families’ observations, while the report’s broader message is an editorial argument rather than a clinical guideline.

Being Patient has published accounts of two men who received neurological diagnoses after noticing changes in their thinking and daily abilities over several years, underscoring the importance of recording and discussing concerns with health professionals. Scott Cunningham was diagnosed with posterior cortical atrophy, a form of Alzheimer’s disease, in December 2020; Sean Terwilliger received an Alzheimer’s diagnosis at age 60 after seeking cognitive testing.

Cunningham, a psychiatrist for 40 years, began having difficulty with visual and spatial tasks several years before his diagnosis, according to Being Patient founder Deborah Kan. 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, 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 (PCA), which the report describes as an Alzheimer’s form that mainly affects visual and spatial processing. Anne, a social worker, had already become concerned after observing changes including Cunningham placing cabinet knobs out of alignment.

Terwilliger, a former information technology 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, the report says. He requested a cognitive test as a baseline, but it took four years, four primary care doctors and moves across three states before he received one. He missed the test threshold by one point, which led to a neurology referral and his diagnosis at 60.

Why Early Concerns Deserve Attention

The accounts show how changes that affect ordinary tasks can be hard to interpret. Vision difficulties may appear to point to an eye condition; slower speech or trouble with numbers may have several possible explanations. In Cunningham’s case, the report says repeated eye examinations did not explain the problems, while further evaluation led to a diagnosis. Terwilliger’s experience illustrates how a patient’s request for testing can take time to reach specialist assessment.

Kan argues that patients and people close to them can notice changes before those changes are documented in a medical record. That is an argument drawn from the cases and her own experience, not evidence that any single observation establishes dementia. The practical relevance is narrower: concrete examples and a timeline can help explain a concern during a medical appointment, and persistent or worsening changes may merit follow-up with a qualified clinician.

For families, the report also highlights the emotional strain of uncertainty. Kan says Cunningham cried with relief when his condition finally had a name. That reaction does not remove the challenges of living with a diagnosis, but it shows why answers can matter to people who have spent time wondering what is happening.

From First Changes to Diagnosis

The report is part of Being Patient’s Journey to Diagnosis series, which shares interviews with people affected by dementia and cognitive changes. Kan says the series aims to bring forward experiences that may not appear in formal medical records, including what patients and caregivers notice at home.

Kan also relates the issue to her mother, who, she says, had visited a doctor with memory concerns five years before her formal diagnosis. She found that information later in her mother’s patient portal. The report does not provide details of what happened at that earlier visit or explain why a diagnosis did not follow then.

In the two featured cases, the paths differed: Cunningham’s eye doctor prompted further evaluation after noticing that his symptoms were not explained by his eyes, while Terwilliger repeatedly sought cognitive testing after changes following a mini-stroke. These accounts describe individual experiences; they do not establish how common similar delays are.

““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 the Being Patient report

What These Cases Cannot Establish

The report presents two personal accounts, not a study measuring diagnostic delays or the accuracy of patient and caregiver observations. It does not establish how often similar symptoms lead to PCA or Alzheimer’s disease, or how long diagnosis typically takes. Cognitive and visual changes can have different causes, and the accounts cannot determine what a particular person’s symptoms mean.

Some details of the diagnostic process are also absent. The report does not specify the cognitive test Terwilliger took, provide his full medical evaluation, or describe the findings used to reach his diagnosis. It also does not report later clinical outcomes for either man. Kan’s broader call to listen to families and patients should be understood as her conclusion from these experiences, not as a substitute for clinical assessment.

The Series and Survey Continue

Being Patient says its Journey to Diagnosis series will continue sharing interviews with people and families navigating cognitive concerns. Kan also invited readers to take the publication’s survey on behavioral symptoms of Alzheimer’s, saying that changes families observe at home may offer insights relevant to patient care. The report does not state how many responses the survey has received, how its findings will be analyzed or when results may be published.

For readers concerned about changes in themselves or someone close to them, the report’s examples are not a basis for self-diagnosis. It describes documenting specific changes and discussing them with a qualified health professional; people whose concerns remain unresolved can seek further medical evaluation.

Key Questions

What diagnosis did Scott Cunningham receive?

According to Being Patient, a scan in December 2020 confirmed posterior cortical atrophy, an Alzheimer’s form that mainly affects visual and spatial processing.

How long did Sean Terwilliger wait for cognitive testing?

The report says four years passed between Terwilliger’s request for a cognitive test and receiving one. It says he saw four primary care doctors and lived in three states during that period.

Do these cases show that every memory or vision change is dementia?

No. The report describes two individual experiences and does not show that particular symptoms establish dementia. Changes can have different causes, so concerns should be discussed with a qualified health professional.

What does the report advise if a concern is dismissed?

Kan says neurologist Marwan Sabbagh advises people to keep asking questions and see another doctor if concerns are dismissed. This is advice reported by Kan, not a diagnosis or replacement for individual medical care.

Source: rss