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Sean Terwilliger says it took four years, four primary care doctors and moves across three states before he received cognitive testing that led to a diagnosis of early-onset Alzheimer’s at age 60. He has since written about the experience, received Leqembi infusions for 18 months and taken part in Alzheimer’s research; some details of his current health and treatment plans remain unclear.
Sean Terwilliger says he spent four years seeking answers about memory and thinking changes before testing led to an early-onset Alzheimer’s diagnosis at age 60. In an interview with Being Patient, the former IT director and educator described the difficulty of getting evaluated, the shock of the diagnosis and how writing about his experience has helped him find a new sense of purpose.
Terwilliger told Being Patient that his concerns began after a transient ischemic attack, or TIA, in 2018. He noticed slower word retrieval, difficulty with numbers and some balance problems. At first, he thought the changes could be lasting effects of the TIA, but he wanted a cognitive test to establish a baseline. He said doctors reassured him for years and did not initially arrange the screening he requested.
After moving through three states and seeing four primary care physicians, he received a Montreal Cognitive Assessment, known as the MoCA, in Massachusetts. Terwilliger said he missed the passing threshold by one point and was referred to a neurologist. Further evaluation included thyroid blood work, an MRI and a PET scan. He said the PET scan showed significant amyloid plaque buildup, and that result contributed to his diagnosis of Alzheimer’s disease.
Terwilliger recalled leaving the diagnosis appointment devastated and uncertain about what to do next. He 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 Leqembi infusions for 18 months, participated in Alzheimer’s research and shared his experience through The ALZBlog and his book, ALZ Fired Up!
The Cost of Delayed Memory Evaluation
Terwilliger’s account highlights the difficulty some people can face in getting concerns about memory changes assessed. He said his symptoms were subtle and could be attributed to his earlier TIA, but he continued to feel that something was wrong. His experience illustrates how a person’s concerns may not lead quickly to cognitive testing, even when they ask for it.
His story also shows the emotional and practical uncertainty that can follow a diagnosis. Terwilliger described receiving little guidance at first and having to seek information about the disease and available support himself. His account is personal testimony, not evidence that every patient encounters the same delays or receives the same advice. It does, however, put a human perspective on the process of pursuing evaluation and adjusting to a diagnosis.
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From TIA Symptoms to Diagnosis
Terwilliger said he initially connected his changes in word finding, number handling and balance to the 2018 TIA. He did not initially think those symptoms meant Alzheimer’s, and said he was seeking a cognitive assessment mainly to understand his abilities and have a baseline for comparison.
The Being Patient interview is part of its “Journey to Diagnosis” series. The outlet disclosed that the series is sponsored by Eisai, which makes Leqembi, and said the sponsor did not choose interview guests, shape questions or review the report before publication. Terwilliger said he spent 18 months receiving Leqembi infusions, but the interview material does not provide a detailed account of his medical response or current treatment status.
““I was never 100 percent of myself.””
— Sean Terwilliger, speaking to Being Patient
Open Questions About His Care
The interview does not give a current update on Terwilliger’s cognitive condition, whether he is still receiving Leqembi or what his clinicians have advised about future care. It also does not establish how the treatment affected him. His recollection of being told he had an estimated eight to 10 years to live is reported as what he says he was told; the source does not provide the clinician’s reasoning or present that estimate as an individualized prognosis readers should apply to others.
Terwilliger also discussed a blood test result that complicated attempts to enroll in additional clinical trials, but the supplied report excerpt does not identify the result, the trials involved or the specific eligibility issue. Those details remain unclear from the available material.
Terwilliger’s Ongoing Advocacy and Research
Terwilliger’s stated next steps in the report include continuing to document his experience and participating in Alzheimer’s research. His writing through The ALZBlog and ALZ Fired Up! gives readers an account of his diagnosis journey, though the interview does not specify a publication schedule or a new project.
He has also said he would like doctors to be more willing to investigate patients’ concerns about cognitive changes. The report does not describe a planned policy change, further clinical-trial enrollment or a specific upcoming medical milestone for him. Any updates on those matters would need to come from Terwilliger, his care team or the relevant research groups.
Key Questions
When was Sean Terwilliger diagnosed with Alzheimer’s?
Terwilliger said he was diagnosed with early-onset Alzheimer’s at age 60, after cognitive screening and further evaluation by a neurologist.
How long did he seek an evaluation?
He said it took four years to receive the cognitive test he had sought. During that period, he moved through three states and saw four primary care physicians.
What testing led to his diagnosis?
Terwilliger said he took a MoCA cognitive screening and was referred to a neurologist after missing the passing threshold by one point. His subsequent evaluation included thyroid blood work, an MRI and a PET scan; he said the PET scan showed significant amyloid plaque buildup.
Has Terwilliger received Alzheimer’s treatment?
He told Being Patient that he received Leqembi infusions for 18 months. The report does not specify whether he is still receiving the drug or describe his medical response.
What is unclear about his clinical-trial plans?
Terwilliger said a blood test result complicated his efforts to join additional trials, but the available report does not name the result, the trials or the eligibility criteria involved.
Source: rss
