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Sean Terwilliger says he spent four years seeking an assessment before a cognitive screening and further testing led to an early-onset Alzheimer’s diagnosis at age 60. In an interview with Being Patient, he discussed treatment with Leqembi, writing about the disease and an unresolved blood-test result affecting his efforts to join additional trials.
Sean Terwilliger says he 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, he described the long path to testing, his experience receiving Leqembi and how writing about the disease has helped him find a sense of purpose.
Terwilliger told Being Patient that his concerns began after a transient ischemic attack in 2018. He noticed that finding words took longer, numbers were harder to manage and his balance was different. He initially thought those changes could be lasting effects of the event. He said he wanted a cognitive test to establish a baseline, but did not receive one despite seeing four primary care doctors across three states.
After moving to Massachusetts, he said a doctor administered the Montreal Cognitive Assessment, or MoCA, a 30-point screening test. Terwilliger said he missed the threshold by one point, prompting a neurology referral. His account says further evaluation included thyroid blood work, an MRI and a PET scan. The scan showed amyloid plaque buildup, he said, and the results led to his Alzheimer’s diagnosis and eligibility for disease-modifying treatment.
Terwilliger recalled leaving the diagnosis appointment distressed and without a clear understanding of what would follow. He said he was given an estimate of eight to 10 years from diagnosis and told to return in two weeks to begin the process of starting treatment. Since then, the former IT director and educator says he has received 18 months of Leqembi infusions, taken part in Alzheimer’s research, and shared his experience through The ALZBlog and his book, ALZ Fired Up!
Delays Before Cognitive Screening
Terwilliger’s account draws attention to a practical issue in dementia diagnosis: he says it took years and several primary care doctors before he received a screening that led to specialist assessment. His experience is a personal account, not evidence that other patients will encounter the same delays, but it illustrates why people reporting changes in memory or thinking may seek evaluation rather than assuming those changes have a single explanation.
His story also shows how diagnosis can lead to complicated next steps. Terwilliger described beginning a treatment process, participating in research and trying to understand his options while coping with distress and uncertainty. The interview does not establish how Leqembi affected his symptoms or disease progression, and his treatment experience should not be read as a prediction for other patients.
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From Stroke Symptoms to Testing
Terwilliger connected the onset of his concerns to a 2018 TIA, which he said left him feeling slower with words and numbers and affected his balance. Because those changes followed the event, he initially attributed them to recovery. He told Being Patient that he had not set out to pursue an Alzheimer’s diagnosis; he wanted a basic cognitive assessment and a baseline measure.
According to his account, the neurologist considered his symptoms, his wife’s observations and the screening result before arranging additional tests. Terwilliger said the MRI did not show lasting brain damage from the TIA, while the PET scan showed amyloid buildup. Being Patient’s interview was part of its “Journey to Diagnosis” series, which the outlet said was sponsored by Eisai; it stated the sponsor had no role in selecting guests, shaping questions or reviewing the interview before publication.
“I was never 100 percent of myself.”
— Sean Terwilliger, speaking to Being Patient
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Trial Eligibility and Treatment Effects
The source does not give the date of the interview or provide an independent medical record confirming Terwilliger’s diagnosis, test results or treatment history; those details are presented as his account. It also does not explain the blood-test result he said had complicated his efforts to enroll in additional clinical trials, identify the trials involved or say whether he ultimately qualified.
The interview does not report whether Leqembi changed Terwilliger’s symptoms, nor does it provide a current clinical assessment or prognosis. The eight-to-10-year estimate was something Terwilliger said he was told after diagnosis; it is not presented as an independently verified prediction of his life expectancy.
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Further Research Participation
Terwilliger told Being Patient he continues to participate in Alzheimer’s research and is seeking enrollment in additional clinical trials. The reported blood-test issue remains unresolved in the source material, so it is not clear whether he will qualify or when a decision may come.
He also continues to document his experience through his blog and book, according to the interview. The article does not identify a scheduled follow-up or a specific upcoming milestone in his treatment or trial search.
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Key Questions
When was Sean Terwilliger diagnosed with Alzheimer’s?
Terwilliger said he received an early-onset Alzheimer’s diagnosis at age 60, after a cognitive screening and further neurological testing. The interview does not state the calendar year of diagnosis.
What symptoms did Terwilliger describe?
He told Being Patient that after a 2018 transient ischemic attack, he was slower to find words, had difficulty with numbers and noticed changes in his balance. He initially thought these might be effects of the TIA.
What testing led to his diagnosis?
According to Terwilliger, a MoCA cognitive screening led to a neurology referral. He said the evaluation included thyroid blood work, an MRI and a PET scan that showed amyloid plaque buildup.
What treatment did he receive?
Terwilliger said he received 18 months of Leqembi infusions. The interview does not report the treatment’s effects on his symptoms or disease progression.
Why is he having difficulty joining more clinical trials?
Terwilliger told Being Patient that a blood-test result complicated his efforts to enroll in additional trials. The source does not identify the result, the trials or whether he has since qualified.
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