In 2015 and again in 2018, I traveled to San Francisco to be a volunteer in a study of a then experimental PET scan for abnormal tau protein in the brain using a radioactive ligand called [18F]-AV1451. This radioactive ligand binds with high affinity to insoluble, paired-helical filaments of hyperphosphorylated tau, the principal component of neurofibrillary tangles. Although my three-year follow up scans were delayed by the Covid-19 pandemic, I returned with Lois in September, 2022 for third set of studies spread over two days. What made this visit different, other than having to wear masks throughout the visit, was the presence of the film crew that is making a documentary film based on my first book, A Tattoo on my Brain: A Neurologist’s Personal Battle against Alzheimer’s Disease.

Brain imaging tests such as CT and MRI scans can be helpful biomarkers for frontotemporal dementia because of the typical atrophy of the frontal and temporal lobes sparing more posterior parts of the brain. For other types of dementia, these imaging tests are not as helpful, although they may be important to rule out tumors, strokes, and hydrocephalus (excess fluid in the brain). Over the last ten years or so, PET scans that can image beta-amyloid plaques and tau-containing tangles have been developed and are now clinically available. These scans can be very useful in confirming a diagnosis of Alzheimer’s and staging the severity of the disease in research settings. However, they are very expensive and often not covered by insurance, presenting barriers for clinical use outside of research.