Sean Terwilliger’s Alzheimer’s Diagnosis Made Him ‘A Completely Changed Man’

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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 an early-onset Alzheimer’s diagnosis at age 60. In an interview with Being Patient, he described the shock of the diagnosis, 18 months of Leqembi infusions and how writing about the disease gave him a renewed sense of purpose.

Sean Terwilliger says an early-onset Alzheimer’s diagnosis at age 60 followed four years of concerns about memory changes and repeated difficulty getting cognitive testing. In an interview with Being Patient, the former IT director and educator described leaving the diagnosis appointment devastated and said writing about his experience later helped him find a new sense of purpose.

Terwilliger told Being Patient that he first noticed changes after a transient ischemic attack in 2018. He said he was slower to find words, had trouble with numbers and experienced some balance problems. At first, he attributed those changes to the effects of the episode and sought a cognitive test to establish a baseline, rather than suspecting Alzheimer’s.

According to Terwilliger, he saw four primary care physicians across three states over four years before a doctor in Massachusetts gave him a Montreal Cognitive Assessment, or MoCA. He said he missed the test’s passing threshold by one point. A neurologist then arranged further evaluation. Terwilliger recounted that thyroid testing and an MRI were part of the workup, followed by a PET scan that showed amyloid plaque buildup; he said that result led to his Alzheimer’s diagnosis.

Terwilliger said the diagnosis came with limited guidance. He recalled being 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. That estimate is his account of what he was told, not a prognosis independently verified in the interview. Since then, he has received 18 months of Leqembi infusions, taken part in Alzheimer’s research and written about his experience through The ALZBlog and his book, ALZ Fired Up!

The Cost of Delayed Cognitive Testing

Terwilliger’s account illustrates how a person’s reported cognitive changes can be difficult to evaluate when symptoms are subtle and there is no obvious physical sign. He said doctors repeatedly reassured him before one agreed to administer a screening test. His experience underscores the value of taking patients’ concerns seriously and considering further evaluation when they report persistent changes; it does not establish how commonly delays occur or why his earlier doctors did not test him.

The path to diagnosis also shaped his access to specialist assessment and treatment. In his case, cognitive screening led to a neurology referral and additional tests, including imaging that he said detected amyloid. His story offers readers a personal account of a process that can involve several steps, while the interview does not provide a general measure of the accuracy or suitability of those tests for other people.

Terwilliger’s account of receiving little guidance after diagnosis also points to the practical and emotional needs that can follow a life-changing result. He said that writing and sharing his experience helped him move through despair and develop a sense of purpose. That is his personal experience, rather than a claim that writing has the same effect for everyone.

From Stroke Recovery to Diagnosis

Terwilliger connected the beginning of his concerns to a 2018 TIA, after which he said he did not feel fully back to himself. The word-finding, number and balance difficulties he described could, in his view at the time, have reflected the earlier event. He said he initially wanted a basic cognitive assessment, not an Alzheimer’s diagnosis.

After the MoCA screening, a neurologist arranged further testing. Terwilliger said the MRI did not show lasting brain damage from the TIA, while the PET scan showed amyloid plaque buildup. He described the scan finding as central to the diagnosis. The Being Patient report is based on an interview with Terwilliger; it does not include his medical records or independent review of his diagnosis or treatment.

The interview was part of Being Patient’s “Journey to Diagnosis” series, which the publication said was sponsored by Eisai. Being Patient stated that the sponsor had no role in choosing guests, shaping questions or reviewing the interview before publication. The report also discussed Terwilliger’s experience with Leqembi, a disease-modifying Alzheimer’s therapy, and his efforts to join additional research studies.

““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

Questions About Care and Trial Access

The interview does not identify the doctors Terwilliger saw before his Massachusetts appointment or explain why they did not offer cognitive screening. It also does not provide his medical records, the full results of his evaluations or an independent clinical assessment of the diagnosis.

Terwilliger said a blood test result has complicated his efforts to enroll in additional clinical trials, but the report excerpt does not specify the test, its result, which trials were affected or what eligibility criteria were involved. His current health status and the longer-term effects of his treatment are also not established in the material.

The eight-to-10-year estimate was reported as something Terwilliger recalled hearing at diagnosis. The source does not identify who gave that estimate or the basis for it, so it should not be treated as an independently confirmed prediction of his lifespan.

Terwilliger’s Ongoing Work

Terwilliger’s next steps, as described in the interview, include continuing to document life with Alzheimer’s through The ALZBlog and his book, and participating in research. He has said that a blood test result has made enrollment in further trials more difficult; the report does not say whether that issue has been resolved or name a future study.

The interview does not set out a new treatment milestone or a date for a follow-up. His account leaves open how his care will develop and whether he will be able to join additional trials. Further details would be needed to clarify the test-related obstacle and his current research plans.

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. The source excerpt does not state the date of diagnosis.

What led to Terwilliger’s diagnosis?

After four years of memory concerns, he received a MoCA cognitive screening in Massachusetts and missed its passing threshold by one point. A neurologist arranged further testing, and Terwilliger said a PET scan showing amyloid plaque buildup led to the diagnosis.

What treatment did Terwilliger receive?

He told Being Patient that he received 18 months of Leqembi infusions. The interview does not give a detailed account of his medical response to treatment.

Why has Terwilliger had trouble entering additional trials?

Terwilliger said a blood test result complicated his efforts to enroll in more clinical trials. The report excerpt does not name the test, explain the result or identify the studies involved.

What has Terwilliger done since his diagnosis?

He has taken part in Alzheimer’s research and written about his experience through The ALZBlog and his book, ALZ Fired Up! He told Being Patient that writing helped him find a new sense of purpose.

Source: rss