Last March, a much-anticipated drug trial for a possible Alzheimer’s treatment was cancelled after a “futility analysis” found that the “trials were unlikely to meet their primary endpoint upon completion.” In other words, Biogen, which created the drug, learned that its drug Aducanumab was unlikely to work.
I was one of the several thousand people who were part of that study.
In the months since then, I’ve written and talked extensively about Biogen and its failed trial. I’ve also schlepped down to the study site at the University of Pennsylvania via car service for two more safety visits: more blood work, more poking by a neurologist, more memory testing and additional MRIs.
My final visit occurred recently. It started as they all did when the car service pulled into our driveway. But unlike most of the trips to Penn, my husband Tim accompanied me that day; he was needed for the memory testing portion of the testing and otherwise spent a lot of time sitting around while I was shuttled from room to room.
By the end of the day, I was exhausted. I’d spent what felt like an extra-long time in the MRI tube and the memory/cognitive testing was extensive. At the same time, the emotional impact of the day was overwhelming.
I began my Alzheimer’s journey through the Biogen study. It was through the initial MRIs and a PET scan that I received my diagnosis of early-onset Alzheimer’s at age 54. And for nearly three years after, once a month, like the beat of a metronome, I was in a chair at the Penn Memory Center, attached to an IV drip bag as a low dose of Aducanumab dripped into my veins for about an hour. (In a letter after the trial’s failure, Biogen told participants if they had been receiving a low dose of Aducanumab, a high dose or a placebo.)
My participation in the trial became an important part of my identity, a way to make a difference in this surreal world of Alzheimer’s where not only is there no cure, there are not even real treatment options. And not much hope of an immediate treatment or cure.
Those monthly appointments stood out as my calendar cleared. I had stepped down as the director of a small not-for-profit near my house as even the pressure of that small job became too much. And then, after I qualified for Social Security disability, I officially retired at age 57.
As one social worker noted, this was clearly not the way I expected to spend my mid-50s. After decades spent in fairly high stress jobs as a senior communications officer for major not-for-profits, I was suddenly looking at a calendar with acres of empty space punctuated by twice daily reminders to take my medications.
Don’t get me wrong. It wasn’t that I crawled into bed after my diagnosis and pulled my blanket over my head. In fact, my first reaction to my diagnosis was to call the Alzheimer’s Association’s media department and start to explore ways that I could write about this disease.
Now an Alzheimer’s advocate
From that initial call, I became an Alzheimer’s advocate: I spent a year on a national early-stage advisory group for the association. I’ve told my story before dozens of conferences and to media interviewers. I’ve written for multiple publications. It’s been a pretty wild ride, but still nothing like my old jobs.
I’ve also tried to stay as optimistic about my future as possible. I urge folks to learn to “live” with Alzheimer’s … to experience as much as possible and make new memories even as the old ones fade away. (And, yes, those new memories also tend to disappear quickly but if you write about them and post photographs and share them with friends and family, you’ll always have someone and something to remind you. It’s far from the real things memory wise but it is better than nothing.)
Part of my determination to live with Alzheimer’s was the launch of a “campaign” that I called the silly shoe project. Inspired by Pam Montana, who served with me on the early-stage advisory council, I decided to wear a pair of silly shoes to each of my infusions, photograph myself and then post the image on social media. The goal was to encourage people to participate in clinical trials and my tag line became “have fun while doing good.”
Pam inspired the silly shoe challenge because she would always wear a different pair of Katy Perry shoes to her drug trial infusions. I couldn’t quite match her designer level so I came up with silly shoes: fish flip flops, hobbit feet slippers, elf shoes, glittering red stiletto boots.
Friends started to send me silly shoes — marijuana leaf flip flops from Bill Cluck, dachshund slippers from Emily Whitfield and a pair of unicorn slippers from Shin Inouye.
I hadn’t had a chance to wear the unicorn slippers before the cancellation of the trial, but I was able to use them on my last visit to the MRI as part of the Biogen study.
I thought my footwear choice was appropriate for that last visit of a failed drug trial that had launched with such optimism.
If unicorns were real, I explained to Tim, then just perhaps a treatment or cure for Alzheimer’s could be found before it was too late for me.
Tim teared up … we both know that unicorns are unfortunately not real and it is highly unlikely that a cure or treatment will be found in time for us.
But we push forward. I’m looking into new trials, launching new ideas — trying to convince people to pick up a piece of plastic everyday is my latest “brainstorm.” We got a new puppy, we’ve hired a designer to help us update our kitchen, we’re working with my nephew Ethan on our designer toy collection.
And I continue to tell my story through opportunities like this journal on MemoryWell and my frequent appearances on The Alzheimer’s Podcast hosted by my good friend Christy Turner (aka the Dementia Sherpa).
After all, unicorns are not real, a cure or treatment for Alzheimer’s is unlikely to come along soon enough to help me but I do firmly believe I can continue to do good and have some fun 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.
