My Alzheimer’s story began in May 2016 when my sister saw a small advertisement in a local newspaper looking for participants to join a study for a new drug being developed to slow memory loss. She sent it to me after hearing me complain repeatedly about forgetting things.
I responded to the ad and underwent a series of tests only to learn that my concerns were founded. I was diagnosed with early-onset Alzheimer’s. I was 54.
The diagnosis made everything click into place: I could see that my memory was just not right; I was forgetting basic things. And I was experiencing cognitive changes too. Simple math? Forget about it. Reading maps or understanding directions? Nearly impossible. My husband Tim was noticing too.
The diagnosis also turned my world upside down. Suddenly I was resigned to a disease with no cure. Being involved in a clinical trial from the start helped. It gave me a new sense of purpose. Instead of just feeling depressed and anxious about this fatal diagnosis, I decided to dedicate whatever years I have left to finding an effective treatment or cure.
Not enough participants in drug trials
I get it. I’ve been poked, prodded and scanned more times than I can count. I’ve spent many many hours attached to an IV line and had a dozen MRIs and a few PET scans.
The trouble is not enough people are signing up for them. According to the National Institutes of Health, nearly 200 U.S.-based Alzheimer’s disease clinical trials are currently seeking more than 270,000 participants. Researchers are struggling every day to find participants.
I get it: I’ve been poked, prodded and scanned more times than I can count in two-plus years. I’ve spent many many hours attached to an IV line and had a dozen or so MRIs and a few PET scans.
I understand why people are reluctant to sign up. There’s worry about side effects. Wariness from disappointing results of past drug trials. Reluctance about turning worries about memory loss into the certainty of an Alzheimer’s diagnosis. Fears of the inconvenience and discomfort of a years-long trial.
But I’ve also met some of the most remarkable people who care deeply about finding a cure for Alzheimer’s. And I believe the possible benefits for us and for future generations are worth it. That’s why I’m launching a new campaign to show that you can have fun while attached to an IV machine. I’m calling it the #shoechallenge.
What could be more fun, after all, than wearing elf shoes in a massive MRI machine? An infusion in hobbit feet, perhaps? Scrolling through footwear on Amazon, you will get in the spirt. Who knew some company actually produces chicken-and-waffles socks?!?
Some pictures from recent drug infusions…first photo: Hobbit feet for infusion one. Elf feet during MRI # 3 billion. And (wussy) clown shoes for most recent infusion. (Hey, they looked waay better online! pic.twitter.com/QVdMgQHZNY
— philgutis (@philgutis) December 14, 2018
I was inspired to launch the shoe challenge by my good friend Pam Montana whom I’ve come to deeply appreciate for her love of life and determination to live well with this disease. Pam started to post pictures of herself receiving drug trial infusions while wearing various fabulous Katy Perry shoes.
I couldn’t compete with that fabulousness but I came up with another take. My first pair of footwear was hobbit feet slippers. I then showed up in elf shoes for my latest MRI and followed that up with a pair of clown shoes.
I’m pretty much a natural introvert so silly shoes do not come easily to me. But I’ll overcome my discomfort and I’ll be wearing some form of silly footwear during all of my upcoming appointments. I’m encouraging others to do the same and spread the word. There’s lots of silly old shoes out there! (Extra points for identifying the musical that line is adapted from!)
Last spring, I completed the 18-month blind phase of the trial for Biogen’s drug Aducanumab, which attacks the plaques in the brain believed to be instrumental in causing and worsening Alzheimer’s. I’m now participating in the open label phase, which means that I’m actually getting the medication. (During the earlier phase, I may have received a placebo.)
It’s hard to know if it’s making a difference. But we won’t know until we try.
If we ever hope to find a cure for Alzheimer’s we need to get hundreds of thousands of additional participants in drug trials. Maybe, just maybe, silly shoe shopping can help ease the pain a little bit. Laughter, they say, is the best medicine. And I’ve discovered that knowing you are not alone in this battle helps a great deal!
So find a drug trial. Enroll. Buy silly shoes. Take photos. Post on social media with the hash tags #shoechallenge and #IhaveAlz. Together we’ll make a real difference!
PS: The musical is The Producers. The original line is from the song “We Can Do It” when Nathan Lane sings “There’s a lot of little old ladies out there.”
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.