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Sean Terwilliger says it took four years and multiple doctors before cognitive testing led to a neurology referral and an early-onset Alzheimer’s diagnosis at age 60. In an interview with Being Patient, he described the shock of the diagnosis, his treatment experience and how writing about the disease helped him find a sense of purpose.
Sean Terwilliger was diagnosed with early-onset Alzheimer’s disease at age 60 after spending four years seeking an assessment for memory and thinking changes, he told Being Patient. In the interview, Terwilliger described the diagnosis as life-changing and said writing about his experience later helped him develop a new sense of purpose.
Terwilliger, a former IT director and educator, said his difficulties began after a transient ischemic attack, or TIA, in 2018. He noticed that finding words took longer, numbers were harder to manage and his balance was affected. At first, he attributed those changes to the effects of the TIA and wanted a cognitive test to establish a baseline.
He told Being Patient that he saw four primary care physicians across three states before a doctor in Massachusetts arranged a screening. Terwilliger said he failed the 30-point Montreal Cognitive Assessment, known as the MoCA, by one point. That result led to a neurology referral and further evaluation.
According to Terwilliger’s account, clinicians checked for other possible explanations, including thyroid problems and lasting brain injury from the TIA. He said an MRI did not show lasting damage from the stroke, while a PET scan showed significant amyloid plaque buildup. He was then diagnosed with Alzheimer’s disease. The account does not provide his medical records or independent confirmation of the test results.
The Long Road to Cognitive Testing
Terwilliger’s account highlights how a person can report changes in memory or thinking for years before receiving a specialist assessment. He said his symptoms were subtle enough that doctors had reassured him he was fine, despite his continued concern. His experience is a personal account, not evidence that all patients encounter the same delays or that a particular screening approach is appropriate for everyone.
The diagnosis also altered how Terwilliger understood his future. He recalled being told he had an estimated eight to 10 years to live from diagnosis and being asked to return two weeks later to begin discussing treatment. He described leaving the appointment devastated and uncertain about what to do next. The estimate was what he says he was told; it should not be read as a prognosis that applies to other people with Alzheimer’s.
Terwilliger said he later spent 18 months receiving Leqembi infusions and took part in Alzheimer’s research. He has also written about his experience through The ALZBlog and his book, ALZ Fired Up!. His account offers readers a first-person view of the emotional and practical questions that can follow diagnosis, while leaving his individual medical decisions distinct from general guidance.
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From TIA Symptoms to Diagnosis
Terwilliger told Being Patient that he first noticed changes after his 2018 TIA. Because word-finding, number handling and balance can be affected by different conditions, he initially thought the changes might be part of his recovery. He said he sought a cognitive test partly to get a baseline, not because he had already concluded that he had Alzheimer’s.
In Massachusetts, a primary care physician administered the MoCA screening and referred him to a neurologist after he fell one point short of the test’s passing threshold, as Terwilliger described it. Further assessment included thyroid blood work, an MRI and a PET scan. He said the PET scan’s findings of amyloid plaque helped lead to his diagnosis and access to disease-modifying treatment.
Being Patient presented the conversation as part of its “Journey to Diagnosis” series. The publication disclosed that the series is sponsored by Eisai, which makes Leqembi, and said the sponsor had no role in selecting guests, shaping questions or reviewing the interview before publication. That disclosure is relevant because the interview discusses the drug as well as Terwilliger’s diagnosis.
““I was never 100 percent of myself. It was a little slower to come up with words. Numbers were really hard for me.””
— Sean Terwilliger, speaking to Being Patient
What His Account Cannot Establish
The interview is a first-person account and does not include medical records, the precise scores from Terwilliger’s testing or independent confirmation of his diagnosis and treatment history. It also does not explain the clinical basis for the eight-to-10-year estimate he recalls being given, or whether that estimate was presented with qualifications.
Terwilliger said a blood test result complicated his efforts to join additional clinical trials, but the supplied interview material does not identify the test, give its result or name the trials. It is also unclear what treatment or research options he may pursue next. His experience does not establish how common delays in assessment are or predict another person’s symptoms, diagnosis or life expectancy.
Writing and Research Ahead
Terwilliger has continued to document his experience through The ALZBlog and his book, and he has participated in Alzheimer’s research, according to Being Patient. The interview does not announce a specific upcoming trial, treatment change or public event.
His immediate next steps remain unclear, including whether the blood test issue will affect future trial enrollment. The report gives no new clinical update beyond his account of 18 months of Leqembi infusions and his ongoing interest in research and writing.
Key Questions
When was Sean Terwilliger diagnosed with Alzheimer’s?
Terwilliger told Being Patient that he was diagnosed with early-onset Alzheimer’s at age 60, after a cognitive screening and further neurological testing.
How long did it take him to get cognitive testing?
He said it took four years and involved four primary care physicians across three states before a Massachusetts doctor administered a MoCA screening.
What tests did Terwilliger say he underwent?
He described thyroid blood work, an MRI and a PET scan after the initial cognitive screening. He said the PET scan showed significant amyloid plaque buildup and contributed to the diagnosis.
Did Terwilliger receive Alzheimer’s treatment?
He told Being Patient that he received Leqembi infusions for 18 months. The interview does not provide further clinical details about his treatment or current medical status.
What remains unknown about his clinical-trial plans?
Terwilliger said a blood test result complicated his effort to enroll in further trials, but the report does not name the test, explain the result or identify the trials. His next research options are not specified.
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