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Sean Terwilliger says he spent four years trying to get doctors to assess his memory concerns before testing led to an early-onset Alzheimer’s diagnosis at age 60. In an interview with Being Patient, he described the shock of the diagnosis, his experience receiving Leqembi infusions, and how writing about the disease helped him find a new sense of purpose.
Sean Terwilliger was diagnosed with early-onset Alzheimer’s at age 60 after spending four years trying to get doctors to assess his concerns about memory and other cognitive changes. In an interview with Being Patient, he described leaving the diagnosis appointment devastated and said that writing about his experience later helped him find a new sense of purpose.
Terwilliger, a former IT director and educator, told Being Patient that his difficulties began after a transient ischemic attack, or TIA, in 2018. He recalled being slower to find words, struggling with numbers and having some balance problems. At first, he thought those changes could be lingering effects of the TIA and wanted a cognitive test to establish a baseline rather than expecting a particular diagnosis.
According to his account, he consulted four primary care doctors across three states over four years before a physician in Massachusetts gave him a Montreal Cognitive Assessment, or MoCA. Terwilliger said he missed the test’s passing threshold by one point. A neurologist then pursued further evaluation, including thyroid blood work, an MRI and a PET scan. Terwilliger said the 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 and being asked to return in two weeks to start the process of beginning treatment. That estimate is Terwilliger’s recollection of what he was told; the interview does not establish it as an individual prognosis. Since then, he has received 18 months of Leqembi infusions, taken part in Alzheimer’s research and written about living with the disease through The ALZBlog and his book, ALZ Fired Up!
The Cost of Delayed Memory Testing
Terwilliger’s account highlights the difficulty he says he faced in getting concerns about memory taken seriously before they were severe enough to prompt further evaluation. His experience is a personal report, not evidence that all patients encounter the same barriers. Still, it points to a practical issue for people noticing cognitive changes: assessment may involve listening to patients and family members, screening, and additional tests to investigate possible causes.
The diagnosis also changed what Terwilliger was facing. He told Being Patient that he had not expected Alzheimer’s when he first sought a baseline test, and that the news left him unsure what to do. His subsequent participation in research and public writing offers a view of how one person has tried to respond, while the interview does not establish what outcomes other patients should expect from treatment or research participation.
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From TIA Symptoms to Diagnosis
Terwilliger connected his first noticed changes to a 2018 TIA, after which, he said, he did not feel fully back to normal. He initially interpreted the word-finding, number and balance difficulties as possible effects of that event. The neurologist’s workup, as Terwilliger described it, examined other potential explanations before a PET scan identified amyloid buildup.
His interview appeared in Being Patient’s “Journey to Diagnosis” series. The publication said the series was sponsored by Eisai, which makes Leqembi, and stated that the sponsor had no role in selecting interview guests, shaping questions or reviewing coverage before publication. Terwilliger said he received Leqembi infusions for 18 months; the supplied report does not provide treatment dates, details of his response, or a clinical assessment of the therapy’s effect on him.
“I was never 100 percent of myself.”
— Sean Terwilliger, speaking to Being Patient
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Treatment and Trial Questions Remain
The interview does not state the date of Terwilliger’s diagnosis, provide medical records, or independently verify the test results and prognosis he recalled. It also does not detail how his symptoms have changed, what effects he experienced during 18 months of Leqembi, or whether treatment is ongoing.
Terwilliger also said a blood test result has complicated his efforts to enroll in additional clinical trials. The supplied report does not identify the test, explain the result, name the studies or say whether he has since qualified for a trial. Those details remain unclear, as does what research opportunities may be available to him next.
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Further Research Plans Unspecified
Terwilliger told Being Patient that he participates in Alzheimer’s research and wants to document his experience through his writing. The interview does not announce a specific upcoming trial, publication or treatment milestone, and it gives no timeline for a decision about his eligibility for additional studies.
For now, his next steps beyond continued documentation and research participation are not specified in the report. Any update about trial enrollment, his treatment or his health would need to come from Terwilliger or a further report; the interview does not say when one is expected.
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Key Questions
How old was Sean Terwilliger when he was diagnosed?
Terwilliger said he received an early-onset Alzheimer’s diagnosis at age 60.
How long did it take him to receive cognitive testing?
He told Being Patient that it took four years. During that time, he said, he saw four primary care physicians across three states before receiving a MoCA screening in Massachusetts.
What tests did Terwilliger say were part of his evaluation?
He described thyroid blood work, an MRI and a PET scan, following a cognitive screening and neurology referral. He said the PET scan showed significant amyloid plaque buildup and contributed to the diagnosis.
Did Terwilliger receive Leqembi?
Yes. He told Being Patient that he received Leqembi infusions for 18 months. The report does not detail his individual response or say whether he is still receiving treatment.
What remains unknown about his clinical-trial plans?
Terwilliger said a blood test result complicated his effort to join additional trials, but the interview does not identify the test or result, name a trial, or say whether he has since enrolled.
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