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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. He later received Leqembi infusions and has written about his experience, while a blood test result has complicated his effort to join further clinical trials.
Sean Terwilliger says he spent four years seeking a cognitive assessment before testing and follow-up examinations led to an early-onset Alzheimer’s diagnosis at age 60. In an interview with Being Patient, the former IT director and educator discussed the diagnosis and said writing about the disease later gave him a sense of purpose.
Terwilliger told Being Patient that his memory and thinking concerns began after a transient ischemic attack in 2018. He noticed slower word retrieval, difficulty with numbers and some balance problems, which he initially attributed to the effects of the event. He said he asked doctors for a cognitive test, but did not receive one during visits with four primary care physicians across three states.
After moving to Massachusetts, Terwilliger said a primary care doctor gave him the Montreal Cognitive Assessment, or MoCA, a 30-point screening test. He failed by one point, according to his account, and was referred to a neurologist. Further evaluation included thyroid blood work, an MRI and a PET scan. Terwilliger said the PET scan showed significant amyloid plaque buildup, and that result contributed to his Alzheimer’s diagnosis.
He recalled being told he had an estimated eight to 10 years to live from diagnosis, a prognosis he says was given at the time. Terwilliger said he was distressed after the appointment and had limited guidance about next steps. He later received Leqembi infusions for 18 months, participates in Alzheimer’s research and documents his experience through The ALZBlog and his book, ALZ Fired Up!
The Cost of Delayed Memory Testing
Terwilliger’s account describes the difficulty he says he faced getting concerns about memory and thinking evaluated. He said his symptoms were not obvious to others and that doctors reassured him without offering the screening he requested. His experience is a personal account, not evidence that every patient will encounter the same barriers, but it illustrates why people with cognitive concerns may seek further evaluation when changes are subtle.
His diagnosis also shaped decisions about treatment and research participation. Terwilliger said early diagnosis made him eligible to pursue disease-modifying treatment, while a later blood test result has complicated his attempts to enter additional clinical trials. The interview does not establish the test’s medical meaning or the specific trials involved. His account describes how diagnostic findings may affect access to research.
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From Stroke Recovery to Diagnosis
Terwilliger initially connected his changes to the 2018 transient ischemic attack, which can be followed by ongoing symptoms, according to his recollection of that period. He said he wanted a cognitive test mainly to establish a baseline, rather than because he already suspected Alzheimer’s disease. The interview does not provide his full medical records or independent confirmation of each diagnostic step; the details here come from his account to Being Patient.
Being Patient described the interview 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 material before publication. Terwilliger’s treatment with Leqembi and research participation are part of his personal experience; they should not be read as a treatment recommendation or a prediction of outcomes for other people.
“I was never 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
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Questions About Trials and Prognosis
The interview says a blood test result has complicated Terwilliger’s efforts to enroll in additional clinical trials, but it does not identify the test, explain the result or name the trials. It is also unclear from the supplied report whether he is currently receiving any treatment or what his present health status is.
The eight-to-10-year estimate was reported as something Terwilliger recalls being told after diagnosis. The interview does not describe how that estimate was calculated, whether it was presented as a general projection or individualized prognosis, or how his doctors view it now. His personal experience cannot establish how the disease will progress for other people.
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Terwilliger’s Ongoing Research Efforts
Terwilliger says he remains involved in Alzheimer’s research and continues to write about living with the disease. His next steps regarding clinical-trial enrollment are not specified in the interview, and the report gives no timeline for a decision. Any further account of his participation or treatment would need to come from Terwilliger, his representatives or the relevant research teams.
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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, after cognitive screening and further neurological testing.
What led to his diagnosis?
After he failed a MoCA cognitive screening by one point, he was referred to a neurologist. He said further evaluation included thyroid blood work, an MRI and a PET scan that showed significant amyloid plaque buildup.
What treatment did Terwilliger receive?
He told Being Patient that he received Leqembi infusions for 18 months. The interview recounts his personal treatment experience and does not offer medical advice.
Why has he had difficulty joining more clinical trials?
The report says a blood test result complicated his efforts to enroll in additional trials, but it does not identify the test, its result or the trials concerned.
What does Terwilliger do now?
He participates in Alzheimer’s research and shares his experience through The ALZBlog and his book, ALZ Fired Up!, according to the interview.
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