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Sean Terwilliger says he spent four years seeking evaluation for memory and thinking changes before a screening and further tests led to an early-onset Alzheimer’s diagnosis at age 60. He has since received 18 months of Leqembi infusions, taken part in research and written about his experience; some details of his treatment and clinical-trial plans remain unclear.
Sean Terwilliger says it took four years, visits with four primary care physicians across three states and a failed cognitive screening before further testing led to an early-onset Alzheimer’s diagnosis at age 60. In an interview with Being Patient, he described leaving the diagnosis appointment devastated and unsure what to do next; since then, he has received Leqembi infusions, joined Alzheimer’s research and written about living with the disease.
Terwilliger told Being Patient that changes followed a transient ischemic attack (TIA) in 2018. He recalled being slower to find words, struggling with numbers and having balance problems. At first, he thought those difficulties might be lasting effects of the TIA. He said he wanted a cognitive test to establish a baseline, but that several doctors reassured him without arranging one.
After moving to Massachusetts, Terwilliger found a physician who gave him the Montreal Cognitive Assessment, or MoCA, a 30-point screening test. He said he fell one point below the threshold that prompted referral to a neurologist. Further evaluation included thyroid blood work, an MRI and a PET scan. Terwilliger said the MRI did not show lasting brain damage from the TIA and that the PET scan showed significant amyloid plaque buildup. He said those findings led to his diagnosis and consideration for disease-modifying treatment.
Terwilliger recalled being told he had an estimated eight to 10 years to live from diagnosis, and that he should return in two weeks to begin the process of starting treatment. That estimate is his account of what he was told, not an individualized prognosis verified in the interview. He later spent 18 months receiving Leqembi infusions. A former IT director and educator, he now writes about his experience on The ALZBlog and in his book, ALZ Fired Up!, and participates in Alzheimer’s research.
A Long Route to Memory Testing
Terwilliger’s account highlights a practical challenge in identifying cognitive change: early symptoms can be subtle and may be attributed to other health events, while a person’s concerns may not be obvious during a brief appointment. He said his difficulties with words and numbers could have been mistaken for effects of his TIA, and that he had to ask repeatedly for a basic screening.
His experience is a personal account, not evidence that other patients will face the same delays or receive the same tests. It does show why the route from noticing changes to specialist assessment can matter to individuals and families seeking an explanation and discussing care. Terwilliger said that a failed screening led to a neurologist’s evaluation, followed by imaging and a diagnosis.
The interview also records how he responded to the diagnosis beyond medical care: by documenting his experience and participating in research. His description of becoming “a completely changed man” reflects the personal impact he says the diagnosis had on his outlook and priorities; it does not establish a clinical effect of diagnosis or treatment.
cognitive assessment test for early Alzheimer's
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From TIA Symptoms to Diagnosis
Terwilliger dates the start of the changes he noticed to recovery from a 2018 TIA. He said his word-finding, number skills and balance did not return fully to what he considered normal. Because those symptoms followed the event, he initially assumed they were related to it rather than to Alzheimer’s disease.
His account describes a sequence of evaluations rather than a diagnosis made from one screening alone. The MoCA result prompted referral; a neurologist then considered Terwilliger’s and his wife’s concerns and arranged additional testing. According to Terwilliger, thyroid testing and MRI helped assess other possible explanations, while the PET scan showed amyloid buildup that supported the Alzheimer’s diagnosis.
Being Patient describes the interview series as sponsored by Eisai, which makes Leqembi. The publication says the sponsor had no role in choosing interview guests, shaping questions or reviewing content before publication. That disclosure is relevant because the interview discusses Terwilliger’s experience with the drug.
““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
Treatment and Trial Questions Remain
The interview account does not specify when Terwilliger received his diagnosis, when his 18 months of Leqembi infusions took place, or whether he is still receiving the drug. It also does not provide information about his clinical response, side effects or the reasons treatment ended. Those details cannot be inferred from the reported duration of infusions.
Terwilliger said a blood test result has complicated his efforts to join additional clinical trials, but the available report excerpt does not identify the test, its result or which trials are affected. The basis for the eight-to-10-year life estimate he says he received is also not explained. His account of that conversation should not be treated as a general life expectancy for people diagnosed with Alzheimer’s.
His Work in Research and Writing
Terwilliger said he continues to take part in Alzheimer’s research and to share his experience through The ALZBlog and his book, ALZ Fired Up!. The interview does not name a next trial, give a timetable for enrollment or report a new treatment decision.
Any update on his participation in additional studies, the blood test issue or his current treatment would need to come from Terwilliger or a further report. For now, the confirmed development is his account of the diagnosis, treatment experience and efforts to document life with the disease.
Key Questions
When was Sean Terwilliger diagnosed with Alzheimer’s?
Terwilliger said he was diagnosed with early-onset Alzheimer’s at age 60, after a cognitive screening and further neurological testing. The interview does not give the date of diagnosis.
What symptoms did Terwilliger report?
He recalled being slower to find words, having difficulty with numbers and experiencing balance problems after a 2018 TIA. He initially thought the changes could be connected to the TIA.
What tests led to the diagnosis?
According to Terwilliger, a MoCA screening led to a neurology referral. His evaluation included thyroid blood work, an MRI and a PET scan; he said the PET scan showed significant amyloid plaque buildup.
Did Terwilliger receive Leqembi?
Yes. Terwilliger told Being Patient that he received Leqembi infusions for 18 months. The report does not state whether he is currently taking the drug or describe his clinical response.
What remains unknown about his clinical-trial plans?
Terwilliger said a blood test result complicated his efforts to enroll in additional trials, but the report does not identify the test, its result or the studies involved. It gives no enrollment decision or timeline.
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