The morning began pleasantly enough. A sweaty and fulfilling indoor row followed by breakfast with one of my very best friends. By the time we finished eating, however, my endorphin-fueled good mood was shattered and tears were dripping down my face.
During our breakfast chatter, I mentioned how I had recently received a last-minute invitation to see Randy Rainbow participate in a panel conversation at The New York Times but just couldn’t figure out how to mix a trip into the city with some pet-sitting responsibilities.
And then my friend innocently rocked my world. At least, she said, I had already seen Randy. No, I responded. I’ve never seen him. Back and forth we went, my friend explaining how she had mistakenly purchased tickets to two events on the same evening and sold the tickets to Randy’s concert in downtown Philly to Tim and me.
I continued to insist I’ve never seen him live. My friend covered my hand with hers and promised that I had. I turned to my phone to text Tim: “Did we see Randy Rainbow in concert??”
His response came in seconds. “Yes.”
In the days since, I’ve repeatedly racked my memory for any shred of recollections from the Randy concert. Tim showed me a picture of the four of us who attended the concert. Nothing. He showed me a picture of a giant screen that awaited Randy’s entrance. Absolutely nothing.
I call incidents like this “memory holes.” They are like personal black holes, regions with gravity so strong that nothing — no memories, no recollections — can escape them. And unfortunately they are becoming more and more common as my journey with early-onset Alzheimer’s continues.
After a recent MRI (part of the failed Biogen study for a potential Alzheimer’s treatment), the test report popped up on the Penn Medicine portal.
The report included all of its typically incomprehensible language: “No acute infarction. Scattered foci of T2 prolongation in bilateral cerebral white matter, nonspecific and unchanged, may reflect sequelae of chronic microvascular ischemic changes.”
Got it? Good for you!
Seriously, none of any words on the report itself made any sense. But the title of report caught my eye: “Research study. Amnestic MCI (mild cognitive impairment with memory loss).”
To my recollection, I had never before seen the term “amnestic MCI” or its handy definition: “mild cognitive impairment with memory loss.”
Off I went to the Google machine. Beyond a cheery headline from a 2012 study — “Amnestic Mild Cognitive Impairment Doubles Risk of Death” — I learned that amnestic MCI means that I have memory problems more severe than normal for my age and education but not serious enough to affect my daily life. (On the other hand, nonamnestic MCI is apparently “characterized by impaired thinking skills other than memory, such as trouble planning and organizing or poor judgment.”)
It was nice to get confirmation that my diagnosis actually represents what I’m experiencing. I’ve been told repeatedly that while I carry a diagnosis of early-onset Alzheimer’s, I’m at the earliest stages of the disease, which is typically called Mild Cognitive Impairment.
But the docs have never been able to explain in terms that I understand why I have such pronounced memory holes — forgetting, for example, that I saw a hero in concert or having absolutely no memory of a fundraiser that my husband and I put together for the Alzheimer’s Association in 2018.
Amnestic MCI makes more sense. And I’m not sure why, but having an accurate label matters to me. Perhaps it is my increasing need to have my life as neat and tidy as possible (a topic for the future). Or perhaps it is the need to get some sort of certainty in the world of neurodegenerative diseases where very little actually makes sense to non-experts like me.
I had a long chat with my friend Christy Turner, aka the Dementia Sherpa, about the Randy Rainbow incident. (You can listen to our chat at The Alzheimer’s Podcast, episode 109, or read the edited transcript here.)
In my humble opinion, it’s one of the best conversations we’ve recorded. As usual, Christy made a number of smart observations about how to handle conversations with folks like me who have serious memory issues.
Her advice boils down to don’t engage in everyone’s favorite game of “but don’t you remember” when talking to people with Alzheimer’s. But she also offers some astute ways of redirecting a conversation or how to listen for clues that your favorite person with Alzheimer’s isn’t remembering something.
Our chat raised another whole set of issues for me. Issues about social isolation and people becoming afraid to talk with me because they fear setting off a memory bomb like my friend did. After all, it can’t be fun feeling like you caused one of your best friends to cry in the middle of a restaurant.
I’ll explore some of those issues in future journals. In the meantime, though, while researching this piece, I discovered that Randy Rainbow will be back in Philadelphia toward the end of September.
And, yep, we’ve bought our tickets. If at first you don’t succeed, try, try again!
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.