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Sean Terwilliger says an early-onset Alzheimer’s diagnosis at age 60 left him devastated and changed how he understood his life. After four years of memory concerns and multiple doctors, a cognitive screening led to further testing; he later received Leqembi infusions and began writing about his experience.
Sean Terwilliger says an early-onset Alzheimer’s diagnosis at age 60 left him devastated and made him “a completely changed man.” In an interview with Being Patient, the former IT director and educator described spending four years seeking an assessment for memory and thinking changes before cognitive screening and further tests led to his diagnosis.
Terwilliger told Being Patient that he first noticed changes after a transient ischemic attack (TIA) in 2018. He recalled being slower to find words, having difficulty with numbers and experiencing some balance problems. At the time, he thought the symptoms might be lingering effects of the TIA and wanted a cognitive test to establish a baseline, rather than arriving with a suspected Alzheimer’s diagnosis.
He said four primary care doctors across three states did not arrange the screening he sought. In Massachusetts, a physician administered the Montreal Cognitive Assessment, or MoCA, a 30-point screening test. Terwilliger said he fell one point short of the score required to pass. That result prompted a neurology referral, where he and his wife described concerns about his functioning.
According to Terwilliger’s account, clinicians checked for other possible explanations, including thyroid problems and lasting brain damage from the TIA. He said an MRI did not show lasting stroke-related damage and a PET scan showed significant amyloid plaque buildup. He was then diagnosed with Alzheimer’s disease. Terwilliger recalled being told he might have eight to 10 years to live from diagnosis; that estimate is his recollection of what he was told, not a prognosis independently established by the report.
Since the diagnosis, Terwilliger has spent 18 months receiving Leqembi infusions, according to Being Patient. He also participates in Alzheimer’s research and has written about his experience through The ALZBlog and his book, ALZ Fired Up! He told the publication that writing helped him move through the despair he felt after diagnosis and find a sense of purpose.
The Cost of Delayed Memory Screening
Terwilliger’s account highlights a practical challenge for people who report changes in memory: symptoms can be difficult to measure in a brief appointment, and concerns may be attributed to other conditions or aging. His experience is a personal account, not evidence that other patients will encounter the same delays. Still, it illustrates why a patient’s reported changes and a clinician’s decision to investigate can shape how quickly further assessment begins.
The diagnosis also altered Terwilliger’s plans and sense of identity, by his account. His decision to write publicly and take part in research has given him a way to describe life after diagnosis and to connect with others facing dementia. The interview does not establish that his experience or treatment response is typical, but it offers a first-person view of the effects of receiving a diagnosis and looking for support afterward.
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From TIA Symptoms to Alzheimer’s Testing
Terwilliger initially connected his word-finding difficulty, trouble with numbers and balance changes to the TIA he experienced in 2018. He said he wanted a cognitive assessment because he felt he was not back to his previous level, although he did not initially know what evaluation to request. The delay he described lasted four years and included moves between states and visits with four primary care physicians.
Once he received the MoCA screening, the pathway continued through a neurologist and additional tests. Terwilliger said a PET scan’s finding of amyloid buildup informed the Alzheimer’s diagnosis and made him eligible for disease-modifying treatment. Being Patient described the interview as part of its “Journey to Diagnosis” series and disclosed that the series is sponsored by Eisai, which has no role in selecting guests, shaping questions or reviewing content before publication, according to the outlet.
““There was a precipitating event, which was that I had a TIA back in 2018.””
— Sean Terwilliger, speaking to Being Patient
What the Interview Does Not Establish
The account is based on Terwilliger’s interview; the report does not provide his medical records or an independent clinical assessment. It does not detail his current cognitive status, the effects he experienced during Leqembi treatment, or whether he is still receiving infusions. Terwilliger also said a blood test result has complicated efforts to enroll in additional clinical trials, but the available report does not specify the test, result or trials involved.
The report gives no further explanation of the eight-to-10-year estimate he recalls being told, including how clinicians arrived at it. That figure should not be read as a confirmed life expectancy for people with Alzheimer’s. The article also does not establish whether the delays he experienced reflect a wider pattern among patients seeking memory evaluations.
Terwilliger’s Research and Writing
Terwilliger told Being Patient that he remains involved in Alzheimer’s research and continues to share his experience through The ALZBlog and his book. He said he hopes to take part in further clinical trials, although a blood test result has created an obstacle to enrollment. The interview does not name a next trial or provide a date for any change in his eligibility.
For now, the development reported is his account of diagnosis, treatment and life afterward, rather than a new clinical finding or change in his care. Any updates on trial participation, treatment or his health would need to come from Terwilliger or his representatives.
Key Questions
When was Sean Terwilliger diagnosed with Alzheimer’s?
Terwilliger said he was diagnosed with early-onset Alzheimer’s at age 60, after four years of seeking an assessment for memory and thinking changes.
What led to his diagnosis?
He said a MoCA cognitive screening, which he failed by one point, led to a neurology referral and further testing. He recalled that a PET scan showed significant amyloid plaque buildup and informed the diagnosis.
What treatment did Terwilliger receive?
According to Being Patient, Terwilliger received Leqembi infusions for 18 months. The interview does not describe his treatment response or whether he is currently receiving the drug.
Why did he say the diagnosis changed him?
Terwilliger described feeling devastated and uncertain after being diagnosed. He said writing about his experience helped him process that period and find a new sense of purpose.
What is unclear about his next steps?
Terwilliger said a blood test result has complicated his efforts to join more clinical trials, but the report does not identify the test, the trials or whether he has since become eligible.
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