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Sean Terwilliger says he spent four years seeking evaluation for memory and thinking changes before testing led to an early-onset Alzheimer’s diagnosis at age 60. In a Being Patient interview, he described the diagnosis’s emotional impact, 18 months of Leqembi infusions and how writing about the disease gave him a renewed sense of purpose.
Sean Terwilliger says his Alzheimer’s diagnosis at age 60 left him devastated and, in his words, “a completely changed man.” In an interview with Being Patient, he described spending four years trying to get his memory concerns assessed before a cognitive screening and further tests led to a diagnosis of early-onset Alzheimer’s disease.
Terwilliger told Being Patient that changes began after he experienced a transient ischemic attack, or TIA, in 2018. He recalled difficulty finding words, trouble with numbers and balance problems. At first, he attributed those changes to recovery from the TIA and sought a cognitive test to establish a baseline, rather than suspecting Alzheimer’s.
According to his account, he saw four primary care physicians across three states before a doctor in Massachusetts gave him a Montreal Cognitive Assessment, or MoCA. Terwilliger said he missed the passing threshold by one point. A neurologist then arranged further evaluation, including thyroid blood work, an MRI and a PET scan. He said the PET scan showed significant amyloid buildup, and that finding contributed to his Alzheimer’s diagnosis.
Terwilliger said the appointment provided little direction about living with the diagnosis. He recalled being told he might have eight to 10 years to live from diagnosis and to return in two weeks to begin the process of starting treatment. That prognosis is what he says he was told; the interview does not establish it as a definite prediction for his individual course. He later received Leqembi infusions for 18 months, took part in Alzheimer’s research and began writing about his experience in The ALZBlog and his book, ALZ Fired Up!
The Cost of Delayed Evaluation
Terwilliger’s account highlights how a person can experience changes that affect daily thinking yet have difficulty obtaining an evaluation when symptoms are not obvious to others. He said he repeatedly raised concerns but was told he was fine, and that his symptoms could be attributed to his earlier TIA. His experience is a personal account, not evidence of how commonly diagnosis is delayed, but it illustrates the uncertainty patients and clinicians may face when symptoms have more than one possible explanation.
The story also shows how the diagnosis can create an immediate need for clear information and support. Terwilliger recalled leaving the appointment devastated and unsure what would happen next. His subsequent writing and research involvement have become ways to document his experience and connect it to broader conversations about diagnosis and life with Alzheimer’s. The interview does not establish whether those activities changed his disease course.
For readers, the distinction between his experience and general medical guidance matters: the specific tests, treatment history and prognosis he describes belong to his case. The report does not offer a clinical assessment of his current condition or establish that another person with similar symptoms has Alzheimer’s.
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From TIA Symptoms to Testing
Terwilliger traced his concerns to the period after his 2018 TIA, when he noticed slower word retrieval, difficulty with numbers and changes in balance. Because those effects followed a vascular event, he initially considered them part of recovery. He said his first goal was simply to get a cognitive baseline; he did not initially expect an Alzheimer’s diagnosis.
In the interview, he described the MoCA as a 30-point cognitive screening test that helped prompt a neurology referral after he fell one point short of the threshold used in his case. The neurologist then considered possible explanations, according to Terwilliger, using blood work and MRI as well as a PET scan. He said the scan showed amyloid plaque buildup and that he was diagnosed after this evaluation.
Being Patient presented the conversation as part of its Journey to Diagnosis series, sponsored by Eisai. The publication stated that the sponsor had no role in selecting interview guests, shaping questions or reviewing content before publication. Terwilliger’s account covers both the process that led to diagnosis and his later efforts to understand and write about the disease.
““I was never 100 percent of myself.””
— Sean Terwilliger, speaking to Being Patient
Questions Beyond His Account
The interview does not provide Terwilliger’s current clinical status, details of his response to Leqembi or the reason his 18 months of infusions ended. It also does not identify the exact date of the diagnosis or spell out the treatment timeline beyond the duration he reported.
Terwilliger said a blood test result complicated efforts to enter additional clinical trials, but the supplied report excerpt does not specify the test, its result or which trials were involved. His recollection of being told he had eight to 10 years to live is not presented as a verified clinical estimate or a certainty. The source is an interview with Terwilliger; his recollections and interpretations are attributed to him, and the account alone cannot establish how typical his diagnostic path or treatment experience is.
Writing and Research Continue
Terwilliger says he continues to document life with Alzheimer’s through The ALZBlog and his book, and participates in research. The interview describes his blood test result as an obstacle to enrolling in further clinical trials, but does not say whether he has since found a study or whether that issue has been resolved.
Being Patient’s report does not announce a new diagnosis, treatment decision or research result. The next developments in Terwilliger’s individual story—including any trial participation or changes in treatment—remain unreported in the source material. Readers seeking personal medical guidance should consult a qualified health professional rather than treating one person’s experience as a recommendation.
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 obtain cognitive testing and a subsequent neurological evaluation. The interview does not give the exact date of diagnosis.
What led doctors to evaluate him for Alzheimer’s?
He said a Massachusetts doctor administered a MoCA cognitive screening, which he failed by one point. A neurologist then arranged additional tests, including thyroid blood work, an MRI and a PET scan. Terwilliger said the PET scan showed significant amyloid buildup.
What treatment did Terwilliger report receiving?
Terwilliger told Being Patient that he received Leqembi infusions for 18 months. The interview excerpt does not explain why the infusions ended or report his clinical response.
What remains unknown about his clinical-trial plans?
He said a blood test result complicated his efforts to join additional Alzheimer’s trials, but the report excerpt does not identify the test, result or specific studies. It does not say whether he later enrolled in a trial.
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