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Power Publicist Nanci Ryder’s ALS Battle: “Do I Live Like I’m ‘Living’ or ‘Dying’?”

In the year since she announced her diagnosis in THR, she has lost her voice and ability to swallow, but not her style, humor nor sense of realism as she continues to raise money: "I've met my match."

This story first appeared in the Oct. 30 issue of The Hollywood Reporter magazine. To receive the magazine, click here to subscribe.

Nanci Ryder can’t speak. She can barely eat (a bowl of Haagen-Dazs vanilla is about all her mouth can handle). Swallowing is difficult, even dangerous. So Ryder has a gastrostomy feeding tube connected to her stomach. It’s called a Mic-Key, and it’s discreetly concealed under her shirt. But near the end of our 75-minute interview at the kitchen table inside her hilltop Los Angeles home, Ryder lifts her top just enough to show it off. It’s a button-sized implant that looks just like the air valve on a beach ball, complete with a little plastic stopper

When Ryder, 63, first sat down with THR in October 2014 to announce that she was suffering from bulbar onset ALS — an almost always fatal neurological disorder that gradually destroys the body’s motor neurons controlling voluntary muscle movement — it made headlines worldwide, and she seemed upbeat about the fight she was facing, even if her speech already was starting to slow and slur. But now, a year later, the disease has taken a toll, and her perspective has leveled. She’s fit and vibrant and can still walk and even drive — and certainly dress. Today, as always, she’s outfitted in sleek black designer clothes and is carrying a must-have Saint Laurent burgundy handbag. But the muscles controlling her speech, chewing and swallowing have wasted away.

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From left: Svendsen, Thomsen, Ryder and Cox were photographed Oct. 13 inside Svendsen Laboratory at Cedars-Sinai in Los Angeles.

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The onetime power publicist and partner at BWR Public Relations — a firm she co-founded in 1987 with Paul Baker and Larry Winokur and where she has represented such superstars as Leonardo DiCaprio, Renee Zellweger, Reese Witherspoon, Michael J. Fox and Courteney Cox — now commu­nicates using a Boogie Board LCD tablet. The back-and-forth takes a beat to settle into because it requires several seconds for Ryder to write her responses. But she is as direct and to the point as ever. (“You should do all your interviews like this,” she jokes at one point. “I will not say you misquoted me!”)

At the start of our conversation, Ryder grabs the stylus and writes a message to remind me of something she said when we sat down together this past fall.

“As I said last year, I have no interest in dying,” she writes, before jotting down a new addendum to the message. “But I’ve met my match.” She presses the erase button and stares at the screen.

From left: Cox, Ryder, Witherspoon, Katzenberg and Zellweger at the Oct. 18 ALS Walk in L.A.’s Exposition Park. “Nanci has a lot of good will in the community,” says Zellweger, who sent emails rallying donations for the charity event. “It’s not hard to say, ‘Come on out for our friend.’ ”

Death, which she’d faced once before when she was diagnosed with breast cancer in 2000 (she conquered it in a year with the help of breast cancer drug Herceptin and UCLA’s Dr. Dennis Slamon), now seems palpable. “It’s real,” she goes on. “That makes me sad. When I cry, it’s about the dilemma: Do I live like I am ‘living’ or ‘dying’? I don’t want to delude myself, so I can’t think it’s not possible I could die from ALS. But I can’t live every day thinking, ‘I am dying.’ So a few times I have emailed my friends: ‘I don’t have ALS anymore,’ ” she explains. “That’s when I need a break from being ill. My friends put up with a lot of my nonsense. I have great friends.”

Those friends have circled more tightly than ever. More than 200 of Ryder’s closest allies, onetime clients and colleagues showed up to sup­port her at the Oct. 18 Walk to Defeat ALS in Los Angeles, leading Team Nanci to first place by raising $141,893 for the Golden West Chapter of the ALS Association (the second-place team raised $22,752). Her team captains included Cox, Witherspoon, Zellweger, hair guru Tracey Cunningham, BWR’s Brett Ruttenberg, Witherspoon’s CAA agent husband, Jim Toth, and manager Evelyn O’Neill. “What I always love about Hollywood is that we are a family, and when one of ours is in need, we come to the rescue,” says Jeffrey Katzenberg, who wore one of the Vera Wang-designed “Team Nanci” T-shirts at the walk. Ryder, who was very close to her now-deceased mother, married and divorced once in her 20s and has no children, siblings or relatives. Her only regret, she says, is not remarrying. When we talked last year, she wouldn’t divulge any details about her ex-husband, but now she’s a bit more open. His name is Paul Ryder, and they were together only “a few years” (though one might assume the relationship must have meant something to her since she’s kept his last name all this time). After she revealed her condition to the public, her ex read about it and reached out. Reconnecting was “very nice,” she says, and it turned out to be the start of a flood of reunions, including one with her best friend from elementary school back when she was growing up in Great Neck, N.Y.

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Nowadays, many of Ryder’s best friends have medical degrees. Ever the publicist, she wants to make sure their names appear (with correct spellings) in this story. Her face lights up as she scribbles them on her Boogie Board: Dr. Clive Svendsen, director of Cedars-Sinai’s Board of Governors Regenerative Medicine Institute; Dr. Gretchen Thomsen, research scientist at the institute; Dr. Merit Cudkowicz, chief of neu­rology at Massachusetts General Hospital; Dr. Michael Brousseau of MD2; and Dr. Robert Baloh, director of neuromuscular medicine in the department of neurology at Cedars-Sinai.

Nanci is an amazing person,” says Baloh. “She has a tremendous amount of vitality, and her ability to communicate goes far beyond words. Even though she can no longer talk, she has a tremendous sense of humor, and I love hearing her stories.”

On May 9, Ryder was honored by the LAFD as chief of the day.

In just the year since Ryder’s first interview with THR, ALS research has reached new heights, with several promising developments. In June, Japan’s pharmaceutical regulatory agency approved the use of a drug called Radicut, an antioxidant approach that could potentially slow the disease’s progression (it’s not yet available in the U.S.). Another drug, Nuedexta, is showing some promise for patients with Ryder’s particular type of ALS. “There are numerous efforts testing new drugs, attempting gene therapy and stem cell therapies that were not even conceivable just a few years ago,” says Baloh. “There is a tremendous amount of basic lab research going into understanding exactly what causes ALS so that we can truly develop drugs to target the root causes.”

Some of that lab work is being financed by last year’s Ice Bucket Challenge, the viral campaign that generated $220 million for ALS research. “It put ALS on the map,” says Cudkowicz.

But for all the promising advances, there is not yet a cure for what’s killing Nanci Ryder. “Unfortunately, there are no magic bullet drugs coming through the system,” says Svendsen. “We will have to wait and see.”

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Ryder knows she’s facing a ticking clock, but it’s still a difficult question to put to her: Does she believe a cure will come in time to save her? She grabs the stylus and energetically punctuates each sentence. “Yes! Nobody is getting rid of me yet!” she writes with a laugh (these days, it’s a sound indistinguishable from a groan). “I joke around. I email my doctors on Mondays: ‘Did you find a cure?’ ” she says.

She has spent a considerable amount of time at Cedars’ ALS clinic, working with speech therapists, psychiatrists, pulmonary doctors and others. When she’s not seeing doctors to treat symptoms, she likes to keep herself entertained, watching TV (CNN, Homeland and Bloodline) and going to screenings (she loved Steve Jobs). Lately, she’s discovered a new obsession: bird-watching in her backyard. “Blue jays are bullies,” she writes before grabbing her iPhone and showing off photos she’s taken of a squirrel climbing upside down along the rain spout on the side of her house.

Animals make her happy. There’s her dog, Desi, and her cats, Pants, Thelma and Fluffy. She’s also been to the Los Angeles Zoo recently with one of her live-in nurses. She “spoils” herself by having two licensed vocational male nurses alternate living in a guest room of her home, which overlooks the San Fernando Valley. They’re twins, Jerome and Jerald, and they go on walks with her, help with medication and prepare the nightly ice cream treat. “They also do nails and blowouts,” jokes Ryder.

A moment later, she again gets serious. “Every day is a new day — sometimes bad, sometimes good,” she writes. But there are times when she misses her old life. Especially the small things, things the rest of us can’t help but take for granted, things that break the heart. “I call my voice mail,” she says, “to hear my voice.”