What we’re doing: I’m on a quest to explore Alzheimer’s’ hold on the maternal side of my bloodline, and how it in turn, has and will affect me as I age.
What we’re learning: At the beginning of my inquiry I spoke with Emily Rogalski, who is an associate professor at Northwestern University Feinberg School of Medicine as well as the director of neuroimaging and of SuperAging & Primary Progressive Aphasia (PPA) Research Programs at the Cognitive Neurology & Alzheimer’s Disease Center. Our 50-minute conversation was dense—we dove into the difference between PPA and Alzheimer’s disease, the hereditary risk factors, and some alternative ways researchers are going about finding a way to curb the effects of these diseases.
Brittany Mabry, the manager of education and outreach at the Greater Illinois Chapter of the Alzheimer’s Association provided me with literature that detailed how caregivers could cope with the disease; from pamphlets outlining the differences between healthy aging behaviors verses dementia-related behaviors to hand-outs explaining new technologies that make care accessible for people with the disease, our discussion was centered around the community of people that aren’t necessarily diagnosed with Alzheimer’s, but are incredibly affected by it.
And after these informational interviews, I was feeling rather stable. Watching my grandfather fight the disease had somehow turned into just another example—this bought of detachment brought on by statistics and solutions was comfortable.
That comfort was lost within the first few minutes of interviewing my mom—Tina Smith—about her dad (Neal), and my second-cousin—Joan Perniconi—about her mother (Nina).
It’s rather overwhelming—as both a journalist and as a daughter—to see what I coined as an empty curiosity unearth these layers of a generations-old problem. Before starting my research for this piece, I stuffed away my journalistic abilities—any analytical and solution-oriented demeanor—because, well, that’s just what Italian families do. This merging of learning the inner-workings of a disease with hearing heartbreaking recounts of emotional trauma has proven one thing: the journey to answering whether or not I will get a cognitive impairment disease like Alzheimer’s is exhausting.
(1) Neal Pellicci (left) and Nina Perniconi (right) when they were young adults growing up on the southwest side of Chicago.
(2) Neal Pellicci (left) and Nina Perniconi (right) at a birthday gathering in 2006.