My favorite coffee shop and the tattoo on my brain

People who have not yet read my book, A Tattoo on My Brain: A Neurologist’s Personal Battle against Alzheimer’s Disease, sometimes ask me about the meaning of the title. In 2016, I volunteered for a randomized, double-blind trial of the anti-amyloid, monoclonal antibody aducanumab. During the 18-month randomized trial, I had no side effects and really no significant changes cognitively.  I suspected that I was in the placebo group and indeed this was confirmed at the completion of the study. After completing the 18-month randomized trial, all participants were given the option of enrolling in an extension trial in which everyone received monthly IV infusions of active aducanumab, no placebo. I received my first monthly IV infusion of aducanumab in September 2017. I had no significant side effects after the first two infusions, but after the third I began to have headaches that were mild but just didn’t go away. I didn’t worry because I thought they were just my migraines getting a bit out of control. I didn’t even consider that they might be related to the aducanumab. Then after the fourth infusion in December, I started to intermittently lose my ability to read. Then one evening a few days before Christmas, I started to feel what was to become the worst headache of my life, starting at the back of my head and moving forward. I also became more and more confused. I checked my blood pressure thinking I might be having a stroke, and it was alarmingly high, even on multiple measurements. Lois took me to a local hospital where I was admitted to the ICU with a tentative diagnosis of stroke. An MRI the next morning revealed that it wasn’t a stroke.  It was a complication of the aducanumab infusions called amyloid-related imaging abnormalities (ARIA). They come in two forms: swelling of the brain (ARIA-e) and microhemorrhages (ARIA-h). I had both types of ARIA throughout my brain. The microhemorrhages can be seen on specialized MRI scans that make them appear as small black dots. The swelling in my brain (ARIA-e) resolved slowly over several months, but the iron-containing pigment hemosiderin in my microhemorrhages persisted, the tattoo on my brain.

So what does my favorite coffee shop have to do with the tattoo on my brain?  I have been going every morning to Sterling Coffee since before the pandemic hit to get morning lattes for Lois and me. There has been almost no turnover in the staff in all that time. All of them know my name and order. It honestly is the happiest store I have ever patronized. And yes, almost all of the baristas have tattoos. I also have a tattoo, a tattoo on my brain. I know it’s there, a mark of my battle with Alzheimer’s. As I wrote on page 120 of my book, A Tattoo on My Brain (page 100 of the 2023 paperback edition) “a tattoo has always been a signifier, an unashamed assertion of identity or purpose, a mark of belonging to someone or something or some place. Mine is too­ – a symbol of resistance to the silence that has muted the conversation about Alzheimer’s among patients and doctors, family members, and as a society. A reminder to rally attention to help break down the stigma and encourage the important discussions needed to improve the care of those with the disease and to advance the search for a cure.”