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Sean Terwilliger says he spent four years seeking evaluation for memory and thinking changes before further testing led to an early-onset Alzheimer’s diagnosis at age 60. In an interview with Being Patient, he described the shock of the diagnosis, his experience with Leqembi and his efforts to share what he has learned; some details about his later trial eligibility remain unclear.
Sean Terwilliger says an early-onset Alzheimer’s diagnosis at age 60 followed four years of trying to get his memory concerns assessed, a journey he described in an interview with Being Patient. The former IT director and educator said the diagnosis left him devastated and changed how he approached his life; he has since written about the disease and taken part in research.
Terwilliger told Being Patient that he first noticed changes after a transient ischemic attack in 2018. He said he was slower to find words, struggled more with numbers and had some balance problems. At the time, he thought those issues might be lasting effects of the event and wanted a cognitive test to establish a baseline, rather than seeking a particular diagnosis.
According to his account, he asked for an assessment over four years while moving across three states and seeing four primary care physicians. In Massachusetts, a doctor gave him the Montreal Cognitive Assessment, or MoCA, a 30-point screening test. Terwilliger said he missed the score needed to pass by one point and was referred to a neurologist. Further evaluation included thyroid blood work, an MRI and a PET scan. He said the PET scan showed significant amyloid plaque buildup, and the testing led to his Alzheimer’s diagnosis.
Terwilliger recalled being told he had an estimated eight to 10 years to live from diagnosis and to return in two weeks to begin the process of starting treatment. That estimate was what he says he was told at the appointment; the interview does not establish it as a prognosis applicable to others. Since then, he said, he has received Leqembi infusions for 18 months, participated in Alzheimer’s research and shared his experience through The ALZBlog and his book, ALZ Fired Up!
How the Diagnosis Reshaped His Work
Terwilliger’s account illustrates the personal consequences of a delayed evaluation: he says he repeatedly raised concerns but did not receive cognitive screening until he found a physician willing to offer it. His experience is a personal account, not evidence that all patients face the same barriers, but it highlights the importance he places on taking a person’s reported changes seriously and considering further evaluation.
He told Being Patient that he left the diagnostic appointment with little guidance and uncertainty about what to do next. In the interview, he described writing and sharing his experience as ways of moving through the despair he felt after diagnosis and finding a renewed sense of purpose. His participation in research and public writing also puts a first-person account alongside discussions of diagnosis and treatment, while not replacing clinical guidance.
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From Screening to Diagnosis
Terwilliger initially linked his symptoms to the 2018 transient ischemic attack, which he described as a precipitating event. He said he did not at first recognize his changes as signs of Alzheimer’s and was seeking a basic cognitive assessment. The later workup, as he recounted it, included tests intended to examine other possible explanations as well as a PET scan showing amyloid buildup.
The Being Patient article is part of its “Journey to Diagnosis” series and is presented as an interview with reporter Mark Niu. The publication says the series is sponsored by Eisai, while stating that the sponsor has no role in choosing guests, shaping questions or reviewing interviews before publication. Terwilliger said he received Leqembi infusions for 18 months; the source does not give the dates of that treatment or further clinical details.
““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
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Trial Eligibility and Prognosis
The interview says a blood test result has complicated Terwilliger’s efforts to enroll in additional clinical trials, but the available account does not specify the test, its result, which trials are involved or how it affects eligibility. His current treatment status and any plans to resume or change treatment are also not given.
The reported eight-to-10-year estimate is attributed to what Terwilliger recalls being told after diagnosis. The interview does not provide the clinician’s reasoning, the medical records behind that estimate or an independent assessment of it. It should not be read as a general life-expectancy estimate for people diagnosed with Alzheimer’s.
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Further Trials and Public Writing
Terwilliger told Being Patient that he continues to participate in Alzheimer’s research and that the blood test result has complicated his attempt to join additional trials. The source does not say whether he has since been accepted into a study or when a decision may be made. He also continues to document his experience through his blog and book, according to the report.
Further information about his trial applications, treatment and the specific blood test would clarify what comes next for him. Until then, the confirmed account is his description of the diagnosis, his past 18 months of Leqembi infusions and his ongoing work to share his experience.
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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. The article does not provide the calendar date of the diagnosis.
How long did it take him to receive cognitive screening?
He said he spent four years seeking evaluation, moving across three states and seeing four primary care physicians before a doctor in Massachusetts gave him a MoCA screening test.
What testing led to his diagnosis?
As he described it, his evaluation included thyroid blood work, an MRI and a PET scan. He said the PET scan showed significant amyloid plaque buildup and that the workup led to his Alzheimer’s diagnosis.
What treatment did Terwilliger receive?
Terwilliger said he received Leqembi infusions for 18 months. The interview does not provide treatment dates or details about his current treatment status.
Why might he have difficulty joining other clinical trials?
He told Being Patient that a blood test result has complicated his efforts to enroll in additional trials. The report does not identify the test, its result or the specific eligibility issue.
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