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Sean Terwilliger says it took four years, four primary care doctors and moves across three states before he received a cognitive screening that led to further testing and an early-onset Alzheimer’s diagnosis at age 60. In an interview with Being Patient, he discussed 18 months of Leqembi infusions, writing about his experience and difficulty joining further trials after a blood test result.
Sean Terwilliger was diagnosed with early-onset Alzheimer’s disease at age 60 after spending four years seeking an assessment of his memory concerns, he told Being Patient. In the interview, he described the diagnosis as leaving him devastated and said he became “a completely changed man”; he has since written about the disease, received Leqembi infusions and taken part in Alzheimer’s research.
Terwilliger told Being Patient that his memory and thinking changes followed a transient ischemic attack in 2018. He recalled difficulty finding words, trouble with numbers and some balance problems, which he initially thought could be lasting effects of the event. He wanted a cognitive test to establish a baseline, but said doctors did not arrange one for about four years.
After moving through three states and seeing four primary care physicians, Terwilliger received a Montreal Cognitive Assessment, or MoCA, in Massachusetts. He said he missed the threshold by one point. A neurologist then ordered further assessment, including thyroid blood work, an MRI and a PET scan. According to Terwilliger’s account, the scan showed significant amyloid plaque buildup, and he was diagnosed with Alzheimer’s.
He recalled receiving little guidance at the time of diagnosis. Terwilliger 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. Since then, he has received 18 months of Leqembi infusions, participated in research and documented his experience in The ALZBlog and his book, ALZ Fired Up!
A Long Search for Memory Testing
Terwilliger’s account centers on the gap between noticing cognitive changes and getting a clinical assessment. He said he asked for testing while his symptoms were still relatively subtle and that several doctors reassured him without arranging the screening he wanted. His experience is a personal account, not evidence that every patient with memory concerns faces the same barriers, but it shows why patients and clinicians may differ on when further evaluation is warranted.
His description also illustrates the disruption that can follow a diagnosis. Terwilliger said he left the appointment devastated and uncertain about next steps, despite being told treatment might be available. His subsequent writing and research participation have given him ways to share his experience and remain involved in Alzheimer’s-related work, though they do not resolve the medical and personal uncertainties he described.
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From the 2018 TIA to Diagnosis
Terwilliger connected the first changes he noticed to a 2018 transient ischemic attack, a brief interruption of blood flow to the brain. He said he assumed slower word retrieval, difficulty with numbers and balance changes might be part of recovery. The interview does not establish whether those symptoms were caused by the TIA, Alzheimer’s disease or another factor.
In Massachusetts, the MoCA screening led to a neurology referral after Terwilliger failed by one point, he recalled. The neurologist then pursued testing to investigate possible explanations, including thyroid-related issues and lasting effects from the earlier event, before a PET scan finding of amyloid plaque informed the Alzheimer’s diagnosis. Being Patient described its interview series as sponsored by Eisai, which makes Leqembi; the outlet said the sponsor did not choose guests, shape questions or review reporting before publication.
““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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Trial Access and Medical Details
The interview excerpt says a blood test result complicated Terwilliger’s efforts to enroll in additional clinical trials, but it does not identify the test, explain what the result showed or name the trials involved. It is also unclear what treatment he may pursue next or whether he remains on Leqembi after the 18 months of infusions he reported.
The life-expectancy estimate he recalled was presented to him at diagnosis; the interview does not establish it as an individualized prognosis supported by additional details about his health. The account also does not provide clinical records or independent confirmation of his test results. His reported experience should not be taken as a prediction of outcomes for other people with Alzheimer’s.
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Writing, Research and Further Trials
Terwilliger said he continues to document his experience through The ALZBlog and his book, and remains involved in Alzheimer’s research. He also discussed trying to enter more clinical trials, though the interview leaves the specific barrier and next steps unresolved.
Being Patient’s conversation focuses on his account of diagnosis, treatment and life afterward. No further trial enrollment, treatment change or new medical development was confirmed in the source material.
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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 a cognitive screening and further neurological testing.
How long did it take him to receive a cognitive test?
He said he spent about four years seeking an assessment, moving through three states and seeing four primary care physicians before receiving a MoCA screening in Massachusetts.
What testing led to his diagnosis?
According to his account, the process included thyroid blood work, an MRI and a PET scan. He said the PET scan showed significant amyloid plaque buildup, which informed the diagnosis.
What treatment did Terwilliger report receiving?
He said he received 18 months of Leqembi infusions. The interview does not say whether he is still receiving the drug or describe his treatment plan now.
Why has he had difficulty joining more clinical trials?
Terwilliger said a blood test result complicated his efforts to enroll in additional trials. The source does not identify the test, its result or the trials involved.
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