Sam Morris / Las Vegas Sun
Sunday, Feb. 23, 2014 | 2 a.m.
Kerry Simon has always relied upon his legs. At age 58, he has long been known as a strong and fit man with an easy stride, whether zigzagging through the dining room at his eponymous restaurant at Palms Place or chugging along his daily 3-mile runs near his home in western Las Vegas.
Simon is summoning those once fail-proof legs again — to hold him steady in the walk of his life. He is fighting multiple system atrophy, a rare neurological disorder that impairs the body’s autonomic (or involuntary) functions.
Affected are the blood pressure, heart rate, bladder function and digestion. MSA shares many characteristics with Parkinson’s disease. Slow body movement, muscle rigidity and impaired balance are common MSA symptoms.
And that is what Simon is fighting on this day. The renowned and well-liked “Rock ’n’ Roll Chef,” as dubbed by Rolling Stone, is snapped and buckled into a harness more befitting a Cirque du Soleil performer than an “Iron Chef America” champion. There is no adoring crowd of happy diners in these cozy confines, as Simon walks along a treadmill in the rehabilitation center at the Cleveland Clinic Lou Ruvo Center for Brain Health.
It’s no ordinary walk, though — hence the harness, which is to prevent Simon from harm should he lose his balance. He first walks sideways, counting the steps up to 100.
“Twenty-four, 25, 26,” he grunts, glaring at his feet as if willing his legs to take these steps. He exhales hard, blowing his breath toward the wet strands of hair that has matted against his forehead. “I am so stiff today.”
“Keep going, keep going,” says Simon’s physical therapist, Cleveland Clinic staff member Dr. Jennifer Nash, who specializes in improving the lives of patients suffering from the myriad neurological diseases treated at the clinic in Symphony Park. Nash looks closely at Simon as he reaches the 40s and asks, “How are you doing?”
“Oh, great,” Simon says, and manages a chuckle. His humor, often delivered in sarcastic responses, keeps the mood light. Nash works Simon’s mind as much as his body.
“What are the states that begin and end with ‘A’?” she asks.
Simon snorts a laugh as he gasps for breath. “OK. Alabama, Arizona … Atlanta!”
He has bought some time, and asks those around him, “Anyone know the other one?” He’s prodded with, “Sarah Palin says it’s cold up there.”
“Alaska!” he answers. “That’s good!” And his feet keep moving.
On Thursday night, the Cleveland Clinic will host a benefit, Simon Says Fight MSA, which will support the newly bestowed Kerry Simon Comprehensive Clinic for MSA, which is to expand on the center’s current programs. The event is set to begin at 6 p.m. with a VIP reception and shift into high gear with a cocktail party, an auction and performances, all for Simon.
The range of performers is indicative of Simon’s wide array of friends. One of the masters of ceremony will be Bill Murray, a friend of Simon’s since the two were teenagers in Chicago working together at a Little Caesars. Rockers Alice Cooper, Slash, Sammy Hagar, Vince Neil, Todd Rundgren, Matt Sorum, J.D. Fortune and John Dolmayan are scheduled to perform. The house band is that rowdy bunch from Las Vegas, the Sin City Sinners.
The list of chefs also is filled with culinary rock stars, starting with Simon’s friend and business partner Elizabeth Blau. Those on the hot list are Daniel Boulud, Kim Canteenwalla, Wylie Dufresne, Grant MacPherson, Michael Mina, Rick Moonen, Justin Nilson, Charlie Palmer, Megan Romano, Mark Tarbell and Jean-Georges Vongerichten.
Southern Wine & Spirits of Nevada, the head of which is Ruvo Clinic founder Larry Ruvo, is kicking in the wine, spirits and beer for the occasion. The cost ranges from a $1,000 VIP package to a $500 ticket for the rock show and auction (go to the Keep Memory Alive website for more information).
Simon’s chief medical caregiver is Cleveland Clinic’s Dr. Ryan Walsh, who has enlisted Nash for Simon’s physical therapy. Simon also traveled to the Mayo Clinic in Rochester, Minn., this month to undergo the first of two stem-cell transplant procedures, as healthy cells were injected into his spine with the hope that those cells would travel to his brain.
“Supposedly, the stem cells will halt the development, and I will have to do the work to come back,” he says. “That’s what they’re hoping.”
But then he halts and adds, “There are no promises for anything.”
Simon was formally diagnosed with MSA six months ago and has been using a wheelchair for the past three months — his chair now has about 10 miles on it, as he has used it in tandem with a walker. The condition is progressive, limiting Simon’s movement to long spells of sitting as his body tightens.
“I get up every hour or so, but I am tired of sitting,” he says. “I can’t walk. That sucks. I can walk with assistance, but that’s about it. I can’t go far before my balance gives out.”
Simon says he feels fine mentally, but it is difficult for him to speak fluidly. On the day of this therapy session, he has been asked to record public service announcements to raise money for MSA treatment and awareness. He muscled his way through those segments and is aware that he has unwittingly become a powerful spokesman for the fight against MSA.
“I don’t really feel comfortable with talking so much, but what I do feel comfortable with is bringing attention to MSA and finding a cure for MSA,” he says. “And it’s not just MSA, but all brain diseases in general, because they are all similar. If you look up anything about them, you’ll see there are similarities between all of them.”
Nash has worked countless hours with Simon. The two are well aware of the grip MSA has on a patient.
“He knows the long-term prognosis, and we are working primarily on controlling the symptoms and minimizing the falls,” says Nash, who has been on the Cleveland Clinic staff since 2011 and lectures in physical therapy programs at UNLV and Touro University. “We’ve gone from walking without any device to walking regularly with a cane to several different types of walkers until he was fitted for a power wheelchair.”
Nash has been working with Simon for about seven months.
“We’ve had to modify what he can do and be challenged by; we’ve worked on his balance and fluidity of gait, walking,” she says. “Basically, we are trying to maximize his independence.”
Nash sees as many as eight patients per day for an hour at a time and allows, “All of the patients I work with have a progressive disease. So you are working for one day, one moment, of strength and hope.”
Simon has traversed treadmills for nearly an hour, walking sideways, forward, even backward for several steps. This is an inglorious process, no question, a full-tilt workout that takes as much energy as any performed by a world-class athlete. At times, Simon passes gas, saying, “I’m so sorry!”
“Don’t be,” Nash tells him. “That means you are working.”
Simon also works his facial muscles into exaggerated smiles and looks of shock to keep those muscles flexible, too.
“This is me, smiling,” he says, as if to explain he is not actually grimacing.
For a few minutes, Simon plays a game of mahjong while pacing along a treadmill, again working his mind as he does he body. Near the end of the allotted time, Simon lays across a padded bench as Nash grips his legs and pulls them straight, high into a kicking position and then sideways across his body.
She is performing the kind of routine stretching exercises that he can’t.
Simon blows out air, and says, “Three minutes? That was it? Three minutes seems like a lifetime.”
At the end of the session, Simon settles into his chair with the help of his brother, Doug, and his longtime friend and assistant, Jason Strange, who says as he grabs Simon’s shoulders, “This guy is built like a brick house.”
Nash follows the group out the center’s glass doors and all the way to the parking lot to a parked SUV, as the sun is setting on this day and Simon’s workout session. She makes sure that he is comfortably latched into the passenger seat and give hugs to everyone.
“He has hope, and the possibility is there to change the course of his disease,” she later says. “He is an amazing person. I don’t think I could work as hard as he does.
“When I think of what we are achieving, there is not a day that I don’t want to come to work.”