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Sean Terwilliger says his early-onset Alzheimer’s diagnosis at age 60 left him devastated and changed his life. After four years seeking an assessment, he received cognitive testing, a neurology referral and a diagnosis following further tests; he later spent 18 months receiving Leqembi infusions and began writing about his experience.
Sean Terwilliger was diagnosed with early-onset Alzheimer’s disease at age 60 after four years of seeking medical evaluation for memory and thinking changes. In an interview with Being Patient, the former IT director and educator said the diagnosis left him devastated and unsure what to do next; he has since written about his experience and taken part in research.
Terwilliger told Being Patient that his concerns began after a transient ischemic attack (TIA) in 2018. He recalled slower word retrieval, difficulty with numbers and some balance problems. At first, he attributed the changes to the effects of the TIA. He said he wanted a cognitive test to establish a baseline, but did not receive one for several years.
According to his account, he had seen four primary care physicians across three states before a doctor in Massachusetts administered a Montreal Cognitive Assessment, or MoCA. Terwilliger said he scored one point below the test’s passing threshold. A neurologist then assessed him, and subsequent testing included thyroid blood work, an MRI and a PET scan. He said the scan showed significant amyloid plaque buildup, and that result contributed to his Alzheimer’s diagnosis.
Terwilliger recalled being told he had an estimated eight to 10 years to live from the time of diagnosis, and that he should return in two weeks to begin the process of starting treatment. The interview does not provide independent medical records or further detail about how that estimate was reached. Terwilliger later received Leqembi infusions for 18 months, participates in Alzheimer’s research, and writes about the disease on The ALZBlog and in his book, ALZ Fired Up!
The Long Search for Cognitive Testing
Terwilliger’s account highlights a practical issue in his path to diagnosis: he said his concerns were not followed by cognitive testing until he had changed states and seen several primary care doctors. His experience cannot establish how often this happens or explain the decisions of the clinicians he saw, but it shows how a patient’s account of gradual changes can be difficult to assess without further evaluation.
The delay mattered to Terwilliger because he wanted an assessment before his symptoms became more pronounced. His story may help readers understand why people concerned about changes in memory or thinking seek professional evaluation, while also underscoring that one person’s experience does not predict another person’s diagnosis or care. The account does not establish that a screening test alone diagnoses Alzheimer’s; Terwilliger described additional neurological assessment and imaging.
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From TIA Symptoms to Diagnosis
Terwilliger said he initially connected his symptoms to the TIA he experienced in 2018. He described his condition afterward as not having returned fully to normal, but said he did not at first interpret the changes as signs of Alzheimer’s. He told Being Patient he had not yet researched the disease and was seeking a basic cognitive baseline rather than a particular diagnosis.
In the interview, he described the diagnostic process as moving from a MoCA screen to a neurology referral and further testing. He said thyroid testing was used to check for another possible source of confusion, while an MRI was used to examine whether the TIA had caused lasting brain damage. He reported that a PET scan showed amyloid buildup. The source article identifies the interview as part of Being Patient’s “Journey to Diagnosis” series and says it was sponsored by Eisai; it also says the sponsor did not choose the guest, shape the questions or review the story before publication.
“I wasn’t 100 percent of myself.”
— Sean Terwilliger, speaking to Being Patient
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Questions About Care and Trial Access
The supplied interview does not identify the date of publication or give a current update on Terwilliger’s health, treatment or research participation. It also does not include medical records, the full test results, or an independent assessment of the prognosis he said he was given. The reported eight-to-10-year estimate is his recollection of what he was told, not a confirmed prediction of his individual lifespan.
Terwilliger said a blood test result had complicated his efforts to join additional clinical trials, but the material provided does not specify the test, the result, the trials involved or why the result affected eligibility. It also does not give details about his response to 18 months of Leqembi infusions. Those issues remain unresolved in the account.
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Terwilliger Continues Sharing His Experience
Terwilliger’s account describes continued involvement in Alzheimer’s research and ongoing writing through The ALZBlog and ALZ Fired Up!. He told Being Patient that documenting his experience helped him work through the despair he felt after diagnosis and find a sense of purpose. The interview does not announce a specific upcoming trial, treatment decision or publication date.
For readers, the next developments to watch for are any updates from Terwilliger about research participation and the blood-test issue he said affected trial enrollment. The source does not say whether he has since become eligible for another study or whether his treatment plan has changed.
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Key Questions
When was Sean Terwilliger diagnosed with Alzheimer’s?
Terwilliger said he was diagnosed with early-onset Alzheimer’s at age 60, after a four-year effort to get his cognitive concerns assessed. The supplied interview does not state the calendar year of diagnosis.
What led to his diagnosis?
He described a MoCA cognitive screening, a neurology referral, thyroid blood work, an MRI and a PET scan. Terwilliger 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 report his treatment response or provide further clinical details.
What remains unknown about his clinical trial access?
Terwilliger said a blood test result complicated his effort to enroll in additional trials. The interview material does not identify the test, explain the result or name the trials involved.
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