Sean Terwilliger’s Alzheimer’s Diagnosis Made Him ‘A Completely Changed Man’

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Sean Terwilliger says he spent four years seeking an evaluation for memory changes before testing led to an early-onset Alzheimer’s diagnosis at age 60. In an interview with Being Patient, he described the diagnosis’s emotional impact, 18 months of Leqembi infusions and his efforts to share his experience and take part in research.

Sean Terwilliger was diagnosed with early-onset Alzheimer’s at age 60 after years of seeking medical evaluation for memory and thinking changes, he told Being Patient. In the interview, the former IT director and educator described leaving the diagnosis appointment devastated and said that writing about the disease has since helped him find a sense of purpose.

Terwilliger told Being Patient that his concerns began after a transient ischemic attack (TIA) in 2018. He noticed that words came less readily, numbers were difficult and his balance had changed. At first, he said, he attributed those issues to the aftermath of the TIA and thought they might be his new normal. He wanted a cognitive test to establish a baseline, rather than arriving with a specific diagnosis in mind.

According to his account, it took four years, three states and four primary care physicians before a doctor in Massachusetts arranged a cognitive screening. Terwilliger said he missed the test’s passing threshold by one point. A neurologist then evaluated him, and further testing included blood work to check for thyroid issues, an MRI and a PET scan. Terwilliger said the PET scan showed significant amyloid plaque buildup, and he was diagnosed with Alzheimer’s disease.

He recalled being told he might have eight to 10 years to live from the time of diagnosis and to return in two weeks to discuss starting treatment. That estimate is what Terwilliger said he was told; the interview does not establish it as an individualized medical prognosis. Since then, he said, he has received Leqembi infusions for 18 months, taken part in Alzheimer’s research and written about his experience through The ALZBlog and his book, ALZ Fired Up!

The Cost of Delayed Memory Evaluation

Terwilliger’s account centers on the difficulty he says he faced getting a basic cognitive assessment despite repeatedly raising concerns. His experience highlights a practical issue for people who notice changes: symptoms can be hard to distinguish from other health problems, while a diagnosis may require specialist evaluation and multiple tests. His story is an individual account, not evidence that all patients encounter the same barriers.

The timing of assessment can matter because Terwilliger said his diagnosis led to consideration of disease-modifying treatment and research participation. His interview also describes the personal consequences of receiving little guidance at a frightening moment. For readers, the report offers a first-person view of what one person says happened between noticing changes and learning their cause, while leaving clinical decisions to individual patients and their qualified care teams.

From TIA Symptoms to Alzheimer’s Testing

Terwilliger said the memory and word-finding issues followed a 2018 TIA, which made it difficult for him to know whether the changes came from the vascular event or something else. He initially sought a cognitive test for a score he could use as a reference point. As he told Being Patient, he was not then asking doctors to diagnose Alzheimer’s.

The screening he described was the Montreal Cognitive Assessment, or MoCA, a 30-point cognitive test. In Terwilliger’s case, the result prompted a neurology referral. The neurologist pursued thyroid blood work, brain imaging and a PET scan before reaching the diagnosis, according to his account. The Being Patient series in which the interview appeared is sponsored by Eisai; the publication says the sponsor did not select guests, shape questions or review the interview before publication.

“I was never 100 percent of myself.”

— Sean Terwilliger, speaking to Being Patient

Questions About Prognosis and Trial Access

The interview does not provide a medical record or an independent account of Terwilliger’s evaluation; details about his symptoms, test results and diagnosis are reported through his recollection. It also does not identify the clinician who gave the eight-to-10-year estimate, explain how that estimate was calculated or clarify whether it referred to life expectancy or another measure. The estimate should not be treated as a prognosis for other people with Alzheimer’s.

Terwilliger also discussed a blood test result that has complicated his attempts to enroll in additional clinical trials, but the source material does not identify the test, its result, the specific studies involved or the enrollment criteria. It does not give details about his current health, whether he continues Leqembi, or what outcome he attributes to treatment. Those points remain unresolved in the report.

Terwilliger’s Ongoing Writing and Research

Terwilliger told Being Patient that he continues to document his experience through The ALZBlog and his book, and that he participates in Alzheimer’s research. He described writing as a way to work through the despair he felt after diagnosis and develop a new sense of purpose.

The interview does not announce a new treatment milestone or a scheduled clinical-trial decision. It remains unclear whether Terwilliger will qualify for additional studies, and the source gives no timeline for further updates. Any future information about his treatment or research participation would need to come from Terwilliger, his care team or the relevant study organizers.

Key Questions

When was Sean Terwilliger diagnosed with Alzheimer’s?

Terwilliger told Being Patient he was diagnosed with early-onset Alzheimer’s at age 60. The source does not give the exact date of diagnosis.

What led to his diagnosis?

After years of reporting memory and thinking changes, Terwilliger received a cognitive screening in Massachusetts and was referred to a neurologist. He said follow-up evaluation included thyroid blood work, an MRI and a PET scan that showed significant amyloid plaque buildup.

What treatment did Terwilliger say he received?

He told Being Patient that he received Leqembi infusions for 18 months. The interview does not describe his current treatment status or report a treatment outcome.

Why has he had difficulty joining more clinical trials?

Terwilliger said a blood test result complicated his efforts to enroll in additional trials. The report does not name the test, disclose the result or specify which studies were affected.

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