Labels matter. And given that fact, I suppose that I need to change mine from “person living with Alzheimer’s” to “person living with an Alzheimer’s diagnosis.”
I recently visited the Memory Center at the University of Pennsylvania to complete my second annual evaluation as part of the Aging Brain Cohort study. After about an hour of memory and cognitive testing, interviews and blood drawing, my husband and I headed for the hour-long drive home. I was wiped out from all of the hard memory work but I knew that I had performed well in the testing.
Later that afternoon, I learned how well I had done. My neurologist told me that I had actually scored
slightly better than I had the previous year, a fact that he described as pretty darn unusual. He said that he would describe my condition as early Mild Cognitive Impairment (a precursor to full blown Alzheimer’s) and said that some of the other symptoms I’ve experienced are not atypical of people diagnosed with younger onset Alzheimer’s.
His conclusion: no change in my testing is the best outcome to be expected. “I don’t expect you to get better,” he said, “but I would love to see you stay as much as the same as possible.”
His description did not come as a surprise. In the year and a half that I’ve been seeing him, he’s said many of the same words. However, hearing them again re-surfaced all sorts of complicated emotions and thoughts, thoughts that I hope to explore in the future as part of this journal that the editors of MemoryWell have asked me to write.
Careful readers may remember an essay I wrote for MemoryWell about my participation in the Biogen clinical trial of the drug aducanumab. The quick backstory is that I was diagnosed at age 54 with early onset Alzheimer’s. In the three years since then, I’ve written and spoken extensively about my experiences. My strong belief is that I while I remain able, I must use my voice to speak out on behalf of the millions of people with Alzheimer’s who can no longer speak.
I’m delighted to have this new journal on MemoryWell to continue to write about my Alzheimer’s journey. And I look forward to your thoughts, questions and other feedback along the way.
Phil Gutis is a former New York Times reporter and civil liberties and environmental advocate who was diagnosed with early-onset Alzheimer’s in 2016.