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Sean Terwilliger says an early-onset Alzheimer’s diagnosis at age 60 left him devastated and feeling like “a completely changed man.” After four years of seeking an evaluation, a cognitive screening and follow-up tests led to his diagnosis; he later spent 18 months receiving Leqembi infusions and began writing about his experience. The account is based on an interview with Being Patient, and details such as his current health and future treatment plans are not established in the supplied report.
Sean Terwilliger was diagnosed with early-onset Alzheimer’s disease at age 60 after spending four years trying to get his memory concerns evaluated, he told Being Patient. He said the diagnosis left him devastated and made him feel like “a completely changed man,” and he has since written about living with the disease and taken part in Alzheimer’s research.
Terwilliger told Being Patient that his memory and other difficulties became noticeable after a transient ischemic attack (TIA) in 2018. He recalled being slower to find words, struggling with numbers and having some balance problems. At first, he attributed those changes to the effects of the TIA and said he wanted a cognitive test to establish a baseline, rather than arriving with a specific diagnosis in mind.
According to his account, four primary care physicians across three states did not arrange the screening he sought. After moving to Massachusetts, a doctor administered a 30-point Montreal Cognitive Assessment, or MoCA. Terwilliger said he missed the passing threshold by one point, prompting a referral to a neurologist. He then had thyroid testing, an MRI and a PET scan. He said the PET scan showed significant amyloid plaque buildup, and that finding contributed to his Alzheimer’s diagnosis.
Terwilliger recalled receiving little practical guidance at the appointment. He said he was given an estimate of eight to 10 years to live from diagnosis and told to return in two weeks to begin the process of starting treatment. That estimate is his account of what he was told, not an individualized prognosis independently verified in the supplied report. He later received Leqembi infusions for 18 months, participates in Alzheimer’s research, and has documented his experience in The ALZBlog and the book ALZ Fired Up!.
The Cost of Delayed Memory Evaluation
Terwilliger’s account highlights the difficulty he says he faced in getting memory concerns taken seriously before his eventual referral. His experience does not establish how often other patients encounter similar delays, but it illustrates how subtle cognitive changes can be hard to assess and how a patient’s concerns may not lead quickly to testing. In his interview, he argued that people who report changes should be able to receive further evaluation.
The story also shows how a diagnosis can bring both medical decisions and personal upheaval. Terwilliger described leaving the appointment without a clear sense of what to do next. He says writing and research participation later helped him develop a new purpose. His experience is individual; it does not establish what other people with Alzheimer’s will experience or what treatment outcomes they can expect.
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From TIA Symptoms to Diagnosis
Terwilliger initially connected his word-finding, number and balance difficulties to his 2018 TIA. He told Being Patient that he had not researched Alzheimer’s extensively when he first asked for a cognitive assessment and did not expect the evaluation to lead to that diagnosis. The neurologist proceeded with further testing after hearing from Terwilliger and his wife and considering the screening result.
The report identifies Leqembi as a disease-modifying treatment Terwilliger received, but it does not provide details about his individual response to the drug. The interview was part of Being Patient’s “Journey to Diagnosis” series, which the publication said was sponsored by Eisai. Being Patient stated that the sponsor had no role in choosing guests, shaping questions or reviewing the interview before publication.
““I wasn’t 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
Questions About His Ongoing Care
The supplied report does not give the date of Terwilliger’s interview or a current update on his health, symptoms or care. It also does not provide details about his response to 18 months of Leqembi infusions, whether he is still receiving treatment, or the specific blood test result he said had complicated efforts to join additional clinical trials. The source describes his diagnosis and experience as he recounted them; it does not independently verify every detail of his medical history or prognosis.
His account of difficulty obtaining testing is personal testimony, not evidence about the frequency of such delays across medical practices. The report also does not identify the doctors involved or explain why earlier physicians did not arrange a screening.
Research and Writing Continue
Terwilliger told Being Patient that he continues to participate in Alzheimer’s research and to share his experience through The ALZBlog and his book. He also discussed trying to enroll in further clinical trials, while saying a blood test result had complicated those efforts. The supplied material does not say whether he later qualified for a trial or what his next treatment steps are.
No specific upcoming event or clinical milestone is identified in the report. Further updates would be needed to establish his current treatment status, trial participation and health.
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 supplied report does not give the calendar year of his diagnosis.
What led to his diagnosis?
After a cognitive screening that he said he failed by one point, Terwilliger was referred to a neurologist. He described undergoing thyroid testing, an MRI and a PET scan; he said the PET scan showed significant amyloid plaque buildup and contributed to the diagnosis.
How long did Terwilliger receive Leqembi?
He said he received Leqembi infusions for 18 months. The report does not detail his response to treatment or say whether he continues to receive it.
What has Terwilliger done since his diagnosis?
He has participated in Alzheimer’s research and written about his experience through The ALZBlog and his book, ALZ Fired Up!. He also told Being Patient that a blood test result had complicated his efforts to enroll in additional clinical trials.
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