The Hollywood veteran, diagnosed with the progressive neurodegenerative disease in 2014, has given up everything from solid food to shopping and swears only by tapping on an iPad now, but she's still fighting (and fundraising for) ALS as her body fails. Says Bryan Lourd, "She won't let people look the other way."
"Can you imagine me two years ago?" Nanci Ryder asks me. Not only can I imagine, I can remember. It was October 2014 when Ryder invited me to join her and close friend Renee Zellweger at Ryder's hilltop Los Angeles home. And it was there that the veteran BWR Public Relations talent publicist, who once repped some of the biggest names in the industry — including Reese Witherspoon, Leonardo DiCaprio and Michael J. Fox — dropped the biggest bombshell of her career. She had been diagnosed with amyotrophic lateral sclerosis — ALS, what used to be known as Lou Gehrig's disease — and was stepping down from the company she had co-founded nearly 30 years earlier.
Notoriously difficult to diagnose, ALS attacks motor neurons in the brain and spinal cord and can have different impacts on different people. For Ryder, 64, bulbar onset ALS meant the muscles that control chewing, swallowing and talking would be the first affected. Back in 2014, she still could walk, talk, drive and shop (one of her passions). Her speech was starting to slow and slur, but she was a vibrant and energetic woman. She still enjoyed living a fairly normal life.
But that was then. Today, she slouches on the sofa, her muscular deterioration making it difficult to sit straight. The usual designer clothes have been replaced by simple black sweatpants and a pink tank top. There's a box of tissues by her side. Unable to control her swallowing, she constantly is dabbing at her mouth. A suction machine is never far away in case she starts choking. Ryder has control over her limbs, but she's too weak to walk and gets around in a wheelchair. And her speech is completely gone. Instead, she communicates through an app on an iPad sitting on her lap. She taps on the alphabet to make sentences or relies on preprogrammed words and phrases from various emoji-style buttons. The famously salty talker has made sure "f—," "shit" and "cock" are in its memory banks. Her favorite programmed responses: "F—, f—, f—"; "My handbags are not for sale"; and "Jack is my boyfriend" (referring to close friend Kathy Maffei's golden retriever).
This is the third time since her ALS diagnosis that I've sat down with Ryder for an interview. Her mind is as razor-sharp as ever, her bawdy sense of humor undiminished. But it's clear her body is gradually losing its now-three-year battle with the disease.
"Start with an easy question," she suggests, as one of her two full-time nurses — twins Jerome and Jerald — hovers nearby in the kitchen. So I ask her about the menagerie she's been collecting at her house, which at the moment includes two newly adopted dogs, Manolo (yes, as in Blahnik) and Oreo, along with Desi, a white Maltese she has had for more than a decade. There also are three cats upstairs. Ryder tries to call one by pressing a button on her iPad. "Pants!" says the mechanical voice. "Pants! Pants!" Pants stays upstairs.
"I thought Pants was a girl all these years," says Ryder through her iPad after she spends a good 60 seconds tapping on its screen, "but she's a boy." She taps some more. "Transsexual," she jokes. Ryder used to have an infectious laugh. Now it's labored, a combination of wheezing, moaning and breathing — but it's still infectious. The sound means she's having a good time.
"If you look at the device that speaks for her," Renee Zellweger tells me later, "you'd get a lot of insight into who Nanci is. A lot of the words in that device I can't share with you because they aren't appropriate for this conversation. But they are hilarious. She still has a sense of humor, and you see who she is as a person despite the disease."
The last time I sat with her, in October 2015, Ryder was using a different device — a Boogie board with a stylus. But in recent months, her hands have weakened, making it difficult for her to hold a pen. "Handwriting gone," she explains. "Handwriting illegible." In fact, the past six months have presented a decline in most of Ryder's motor skills. She stopped driving earlier this year, continues to have a gastrostomy feeding tube connected to her stomach and recently was sporting a red gash on her cheek, the result of a fall she doesn't want to talk about.
"Like everything, in stages," she says of her current condition.
Most people with ALS die from respiratory failure typically within two to five years of the onset of symptoms. There are exceptions, and, according to the ALS Association, 20 percent live five years or more and as many as 10 percent survive more than 10 years. (Stephen Hawking, 74, remains the exception to every statistic, having lived for more than 50 years with the disease). But Ryder can do the math. "Bleak picture," she taps.
Still, she is nothing if not a fighter. In 2000, when Ryder was diagnosed with breast cancer, she beat it in less than a year. And she has approached ALS with the same determination, rallying industry friends and raising money for research. For three straight Octobers, she has led "Team Nanci" at the L.A. County Walk to Defeat ALS, raising $433,396 so far (a fraction, of course, of 2014's ALS Ice Bucket Challenge, which brought in $115 million, but a staggering sum for a solitary woman). "If you haven't been touched by ALS, you're not really aware of ALS," says Fred Fisher, president and CEO of ALS Association Golden West Chapter (which feted Ryder with its 2016 Heroes Award). "But Nanci has put us on the map in an extraordinary way."
CAA partner Bryan Lourd, an old friend (and frequent check writer for ALS research), knows the futility of saying no to Nanci Ryder. "She's impossible to deny," he says. "She won't let people look the other way."
This summer, ALS research inched a bit closer to a cure, with the discovery of the ALS gene NEK1. "It is a piece of the puzzle and helps explain one pathway that can lead to motor neuron loss," says Merit Cudkowicz, chief of neurology at Massachusetts General Hospital, the doctor who diagnosed Ryder. "There are now over 30 genes that have been found to cause the disease — this helps develop new targets for treatments."
In the meantime, Ryder continues to struggle and adapt as her body powers down. "She hasn't given up," says Courteney Cox, another longtime friend (she and Ryder were joint co-hosts of the July premiere of Gleason, the Amazon Studios documentary about NFL star Steve Gleason's battle with ALS). "As new things hit her, like losing the ability to write or to walk, she keeps moving ahead and makes adjustments. I'm in awe of her."
Becoming an unofficial spokesperson for ALS research has been one of the stranger transitions for Ryder — as a publicist, she's used to being one step away from the spotlight, not directly in it. But the sudden public attention has had some benefits. For instance, after four decades of separation, she finally reconnected with her ex-husband — Paul Ryder, to whom she briefly was married when she was 19, keeping his name after they divorced. He happened to catch a news story about Ryder's ALS and has made several trips from Florida to Los Angeles to catch up with his ex. He even joined Zellweger, Witherspoon, Cox, Lourd, Jennifer Garner and CAA's Kevin Huvane on Team Nanci at October's ALS Walk. "I'm blown away by the number of people who show up for her," says Paul. "There was a poster someone held up at the walk that said 'wickedly funny.' She always was."
ALS obviously makes keeping a sense of humor challenging, but she's still wickedly funny, even if it's an iPad delivering her jokes. There are, to be sure, moments when her mood slips into darkness. "I'm tired of faking it," she says at one point during our last chat together. "They don't call it progressive for nothing. I'm a mess. I don't care what I look like."
Still, even if her spirit turns grim from time to time, she can't help but be inappropriately hilarious. As I prepare to leave, she starts tapping at the buttons of her preprogrammed quips, delivering a random barrage of mechanical verbiage. "Very funny. Ha! Ha! Ha! I'm tired now. I feel no pain. I love you. I am happy. I am not happy. I am in pain. I am sick. I am hungry. I am sad. Very funny. Ha! Ha! Ha!"
Then, after a pause, she taps one last message before I depart. "Bye bye."
This story first appeared in the 2016 Women in Entertainment Power 100 issue of The Hollywood Reporter magazine. To receive the magazine, click here to subscribe.