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Sean Terwilliger says he spent four years seeking assessment for memory and thinking changes before testing led to an early-onset Alzheimer’s diagnosis at age 60. In an interview with Being Patient, he described 18 months of Leqembi infusions, writing about the disease and difficulty entering further clinical trials; some details of his current health and trial eligibility remain unclear.
Sean Terwilliger says he spent four years trying to get doctors to assess his memory concerns before testing led to an early-onset Alzheimer’s diagnosis at age 60. In an interview with Being Patient, he discussed the long route to diagnosis, his experience with treatment and research, and how writing about the disease helped him find a new sense of purpose.
Terwilliger told Being Patient that his concerns began after a transient ischemic attack (TIA) in 2018. He noticed that words came to him more slowly, numbers were harder to work with and his balance was somewhat off. He initially attributed those changes to the effects of the TIA, but wanted a cognitive test to establish a baseline and check whether anything had changed.
According to his account, he saw four primary care physicians across three states over four years before a doctor in Massachusetts agreed to administer the Montreal Cognitive Assessment, or MoCA. Terwilliger said he missed the test’s threshold by one point. A neurologist then assessed him and ordered further testing, including 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 said the diagnosis came with little guidance. He recalled being told he had an estimated eight to 10 years to live from the time of diagnosis and to return in two weeks to begin the process of starting treatment. He described leaving the appointment devastated and uncertain about what to do next. Since then, he has spent 18 months receiving Leqembi infusions, taken part in Alzheimer’s research, and written about his experience through The ALZBlog and his book, ALZ Fired Up!
The Cost of a Delayed Assessment
Terwilliger’s account highlights the difficulty of obtaining cognitive assessment when a person’s symptoms are subtle and may have more than one possible explanation. He said he connected his changes to his earlier TIA, while also seeking a baseline test. His experience does not establish how common such delays are, but it illustrates how a patient’s concerns can remain unresolved while symptoms are attributed to another event or are hard to measure in a brief appointment.
The diagnosis also shows how consequential a clear next-step plan can be. Terwilliger described receiving a grave estimate of his lifespan but little practical direction at the time. His later involvement in treatment, research and public writing gives readers a first-person account of the period after diagnosis, while his story should not be taken as a prediction of another person’s progression or treatment experience.
His reported difficulty entering additional trials points to another issue for people seeking research opportunities: diagnosis alone may not determine eligibility. Terwilliger told Being Patient that a blood test result had complicated his attempts to enroll, but the interview material does not identify the test result or explain which trial criteria were involved.
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From TIA Symptoms to Testing
Terwilliger’s account starts with a 2018 TIA, after which he noticed slower word retrieval, difficulty with numbers and balance changes. He said he believed these could reflect lasting effects of the event and did not initially think of them as Alzheimer’s symptoms. He nevertheless wanted an assessment, partly to have a reference point for his cognitive function.
The eventual evaluation proceeded in stages: a MoCA screening, a neurology referral, blood work to check for thyroid-related confusion, an MRI, and a PET scan. Terwilliger said the MRI showed no lasting brain damage from the TIA, while the PET scan indicated significant amyloid buildup. The source report describes these as parts of his individual diagnostic process; it does not present his testing sequence as a universal pathway.
Being Patient published the interview as part of its “Journey to Diagnosis” series. The outlet states that the series is sponsored by Eisai, a company associated with Alzheimer’s treatment, and that the sponsor had no role in selecting guests, shaping questions or reviewing the interview before publication. Terwilliger is a former IT director and educator, according to the report.
“I failed the test by one point.”
— Sean Terwilliger, speaking to Being Patient
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Trial Eligibility and Current Health
The interview does not provide the date of Terwilliger’s diagnosis or the date of its publication, so the precise timeline from diagnosis to his 18 months of Leqembi infusions cannot be established from the supplied material. It also does not say whether he is still receiving treatment or describe his current symptoms and day-to-day functioning.
Terwilliger said a blood test result had complicated his efforts to enter additional clinical trials, but the source does not identify the test, its result or the specific eligibility rules at issue. The account also does not independently document the prognosis he recalls being given. His reported estimate of eight to 10 years is attributed to what he says he was told, not presented as a general life-expectancy figure for people with Alzheimer’s.
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More Research, Writing and Follow-Up
Terwilliger said he remains involved in Alzheimer’s research and continues to document his experience through The ALZBlog and his book, ALZ Fired Up! The interview does not name a specific upcoming study, treatment decision or public event, and it gives no date for a follow-up on his clinical-trial eligibility.
Further reporting or updates would be needed to clarify whether he can enroll in another trial, what the blood test means for that decision, and how his treatment has changed since the 18 months of Leqembi infusions he described. For now, the reported development is his account of diagnosis and life afterward, rather than a new clinical finding or change in Alzheimer’s treatment guidance.
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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. The supplied interview material does not give the calendar date of the diagnosis.
How long did he seek medical assessment?
He said he spent four years trying to get his memory concerns assessed. During that period, he saw four primary care physicians across three states before receiving a MoCA screening in Massachusetts.
What tests led to the diagnosis?
In his account, a MoCA screening prompted a neurology referral. He then had thyroid blood work, an MRI and a PET scan; he said the PET scan showed significant amyloid plaque buildup and contributed to the diagnosis.
What treatment did Terwilliger report receiving?
He said he received Leqembi infusions for 18 months. The interview material does not establish whether he is still receiving the treatment or describe his current treatment plan.
Why has he had difficulty joining more clinical trials?
Terwilliger told Being Patient that a blood test result complicated his efforts to enroll in further trials. The source does not identify the test, its result or the trial eligibility criteria involved.
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