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July 28, 2014

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Chef Kerry Simon is battling aggressive form of Parkinson’s: ‘The long-term diagnosis is not good’

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David Becker/WireImage

Chef Kerry Simon at the Epicurean Charitable Foundation’s 11th Annual M.E.N.U.S. scholarship fundraiser at the M Resort on Friday, Sept. 28, 2012.

Kerry Simon at Toronto Film Festival

Kelly Lynch, Mitch Glazer, Jon Hamm, Jennifer Westfeldt and Kerry Simon. Launch slideshow »

Kerry Simon plans website

The heart-wrenching story you are about to read is highly emotional, yet it also is a tale of courage and bravery. I wish that I was writing about running and biking with my friend of 30 years. I never wanted to write these words, but, as a messenger to tell you about a remarkable man and hero, there is no other way: our hometown hero and “Iron Chef” winner Kerry Simon is battling an aggressive form of Parkinson’s disease.

It’s akin to the muscle-plagued brain disease that’s affected other prominent figures including boxing legend Muhammad Ali and award-winning actor Michael J. Fox. Except that Kerry is fighting its far more pronounced disorder known as MSA — multiple system atrophy, a rare degenerative neurological illness that affects multiple parts of the body, causing slowness of movement, muscle rigidity and poor balance.

Out of respect, I’ve kept silent the past months about his fight. Now, though, he’s asked me to tell his story in the hope that he can inspire others to have courage and faith that there will one day be a cure. Kerry has gone public to share how he’s trying to live with MSA to promote and garner support for our downtown Cleveland Clinic Lou Ruvo Center for Brain Health that is assisting and comforting so many other victims of Parkinson’s, Huntington’s, Multiple Sclerosis, Alzheimer’s and ALS and their caregivers.

On Friday, Kerry will join “Top Chef” star Emeril Lagasse and legendary restaurateur Sirio Maccioni at the Silver State Awards in the Venetian Showroom. Kerry will be presented with a Visionary Award, and I’ll be hosting along with Las Vegas newscasters Dayna Roselli and Nina Radetich.

To soften the shock of seeing Kerry probably for the first time in a wheelchair, he wanted people to know his story of how a one-time healthy running enthusiast wound up with a walker before even losing his balance with it.

His longtime business partner, restaurant consultant and owner Elizabeth Blau, said: “It is heart-breaking. Kerry is the kindest, gentlest soul. This is beyond unfair.”

His PR representative Laura Herlovich with PR Plus added: “He is a champ and always has been. He is our hero, and we adore and respect him more than words can ever say. I only hope we can be of some help to him as he courageously battles forward and that he knows how blessed we are to call him a friend.”

When Kerry and I talked at length, he was in good spirits. We laughed as we talked positively about what he faces, but now it will be with the help of dozens of friends and acquaintances who have long wondered what medical problem he was tackling alone.

Like Ali, who was saluted for his fight at our Keep Memory Alive Gala on his 70th birthday in February 2012, Kerry is determined to fight the eventual complete breakdown of his body’s muscles and brain disorder while championing the research work and treatments that our Keep Memory Alive foundation is helping fund at the brain center.

He thanks Southern Wine & Spirits CEO Larry Ruvo for getting him to a doctor there who finally determined what he was suffering from and is now monitoring his medications and rehab work to help him manage the symptoms.

“I would have been lost if that amazing clinic had not been built in Las Vegas,” Kerry said.

MSA is not hereditary, nor is it infectious. The best estimate is that today it affects 4.6 people per 100,000. Nobody knows what causes it, why it happens, where it comes from. There is no cure, although researchers believe that they are making advances. The drug treatments and rehab workouts try to slow the impact of the worsening condition. There is no known way to prevent the disease from getting worse, so the goal of treatment is to control symptoms in an attempt to improve movement and balance.

MSA is so rare that some of the prominent people listed only with fighting the lesser condition of Parkinson’s include evangelist Billy Graham, former NBA player Brian Grant, actor Bob Hoskins, radio DJ Casey Kasem, cycling champion Davis Phinney, former U.S. Attorney General Janet Reno, Grammy-winning singer Linda Ronstadt, Earth Wind & Fire founder Maurice White and British comedian Billy Connolly.

Kerry is a remarkable and brave soul, he is a fighter, he is a hero, and I trust that you will recognize that. He now knows what he’s dealing with and understands what he has to face. He can even laugh at what’s to come.

For those of you in Las Vegas — and there are many connected to his food and beverage industry from musicians to entertainers to hotel executives and fellow chefs — who are now learning for the first time of his challenges, I sincerely hope that you are there to reach out to him with friendship, strength and support.

I met Kerry when we lived in New York. He worked alongside Jean-Georges Vongerichten and Donald Trump, and then The Donald’s wife at the time, Ivana, selected him to be their restaurant chef at the prestigious Plaza Hotel.

A graduate of the Culinary Institute of America, Kerry was deemed by Rolling Stone magazine as “the rock ’n’ roll chef,” as so many music superstars hired him for their New York concerts and tours and hung out in his restaurants between shows.

KGB's Second Anniversary at Harrah's

Kerry Simon, Sammy Hagar, Robin Leach and Joe Satriani celebrate the second anniversary of KGB (Kerry's Gourmet Burgers) in Harrah's on Saturday, June 2, 2012. Launch slideshow »

2010 Playmate of the Year at Simon

2010 Playmate of the Year Hope Dworaczyk with Sung Cha and Peter Cosovich. Launch slideshow »

Kerry Simon opens KGB

He went on to develop, open and oversee culinary establishments for Jean-Georges in Hong Kong, London, New York, Chicago and then in Las Vegas as the executive chef and partner at Prime in Bellagio. Kerry appeared in the 2005 season of “Iron Chef America,” where he challenged and defeated Cat Cora in “Battle Hamburger.” In addition to being an “Iron Chef” judge, he has appeared on numerous TV shows, including as a mentor on Gordon Ramsay’s “Hell’s Kitchen.”

Kerry first knew something was amiss five years ago, but for the first 18 months it was a mystery until he went to the Cleveland Clinic. “I started having problems running. It was getting slower,” he explained. “I knew something was wrong, but all the doctors I saw couldn’t find anything wrong with me.

“Things got worse slowly, but it wasn’t until I went to the Cleveland Clinic that the degeneration of nerve cells in specific brain areas affecting balance and mobility was diagnosed.”

At first, the diagnosis was possible Parkinson’s. The experts told him that it was too early to call, though. They gave him medication that appeared to work — at first.

“It was helpful,” said Kerry. “But then I went back in because it was progressing downhill. I was really going through it. They call it MSA, a rare form of Parkinson’s. It’s far more aggressive.

“It’s become hard to walk. I’ve been using a walker to maintain my balance, but now it will be easier in a wheelchair.”

Kerry, now 58 although he looks 20 years younger, has been a health fanatic his entire life: exercise, no smoking, no drinking.

“The doctors just don’t know yet where it comes from. They don’t have any answers for it, so there’s no cure,” he said. “There is no evidence it is hereditary. The long-term diagnosis is not good.

“You battle it without knowing what the end answer is; my hope is that my current situation can be maintained. You don’t know how long it is. You’re totally in the dark, and you’ve just got to keep hoping.”

I told Kerry that I hope our conversation will serve as a wake-up call to people to surround him with a lot of love, strength and admiration — to show that people caring would be great medicine.

“I’d like them to join me in this fight,” said Kerry. “I’ve kept this pretty quiet for three years, but now I want people to know. Now when somebody sees me, talks with me or says hi, they’ll know what’s wrong.”

Kerry says his doctor at the Cleveland Clinic has already slowly increased his medication. He goes there for regular visits for the physical rehab to try to strengthen his muscles and mobility. The hourlong sessions also include a trainer for neurological sessions.

“It’s helping. They put me on a bike; they put me in braces and put me on a riding machine. We do the brain tests, walking, exercises, stretching, and it works. The exercise is a very important part of fighting any deterioration and maintaining what I’ve got, what I still have. The problem is when you go to the gym and lose your balance — that’s kinda hard.”

2010 Miss USA Pageant: Simon Restaurant

The 2010 Miss USA Pageant contestants at Simon in Palms Place on May 9, 2010. Launch slideshow »

George Maloof and Kerry Simon at Dodgers Game

Kerry Simon and George Maloof at the Los Angeles Dodgers and Pittsburgh Pirates game at Dodger Stadium on April 29, 2010. Launch slideshow »

Kerry has rehab and a trainer twice a week. Despite that schedule, he’s still running his restaurant empire: Simon at the Palms, KGB at Harrah’s, his new Pork & Beans in Tony Hsieh’s just-opened Container Park downtown, the Grill at Sapphire and two Simon venues at the Hard Rock Hotels in Chicago and the Dominican Republic.

“It’s freaking tough keeping that busy,” he admitted with a laugh. “I’m afraid to stop, though. I’m determined to keep doing it. My brother is in the kitchen, and Elizabeth’s team is running it with me; Cory Harwell has been great."

His brother Scott, who has worked with him in his many restaurants over the years, has been handling duties and holding down the fort for Kerry from Chucks: A Kerry Simon Kitchen at the Hard Rock in Chicago while Kerry has had to remain in Las Vegas. “Scott’s expertise and support have been tremendously helpful to me during this transitional time,” said Kerry.

“The really nice thing is that the support I have gotten from those around me has been amazing. I particularly want to thank the entire teams at the Palms, Harrah’s, the Hard Rock properties in Chicago and the Dominican Republic, Sapphire Grill at Sapphire Pool Club, Marriott L.A. Market, Pork & Beans and Simon in Atlantic City for their unconditional support and encouragement during the last few years and still to this day. They have been awesome, and it truly makes such a difference for me.”

Kerry confided that in addition to slurred speech, walking mobility problems and losing his balance, he also has had his sleep patterns affected badly.

“I really had a problem sleeping. But now I fall asleep anywhere it’s dark. I could fall asleep talking to you,” he joked. “Everything gets a little cloudy, and I zone out. The difficult thing for me is that my mind and passion are still as strong as ever. I love what I do, and it gives me great inspiration every day to keep moving forward. Now, if only my body would cooperate with the rest of me,” he laughed.

He has help now at home, and a little restaurant across his street delivers food to him. “It’s become just so hard to walk now,” he said. “If I’m sitting down, I’m OK. But if I stand up, it hurts. The pain is in the legs as if the nerves are evil.

“At the clinics, there are a lot of people there with MSA. There’s no cure. Nobody knows where this comes from; it’s all a total mystery. I’m willing to do a stem cell trial. I’m going to try for that. I have no choice. I’ll try everything. My spirits go up and down. I’m taking really good care of myself; it’s all so hard to believe. This is not what I predicted.

“But Larry Ruvo has been just amazing. The brain center here has been so helpful. There are some very good people there. So many chefs and winemakers from my own profession have been its biggest supporters.

“I am so lucky to have it at my fingertips. I want to do as much as I can to let everybody know the great work they do there — right here in Las Vegas.”

True to form, Kerry will visit the 15th Annual Chet Buchanan Morning Zoo toy drive early this morning to make his annual donation and drop off Chet’s favorite breakfast, Kerry’s homemade granola and yogurt and berries.

“If you think I’d let something like this keep me from helping the community and enjoying the things I love about Las Vegas, you better think again. I’m staying involved and active. It’s the only way I know how to be,” he smiled.

I assured him that everybody would be rooting for him: “Just know that everybody is concerned, everybody loves you, and we all hope and pray you will get the much-needed strength for this battle.”

Larry Ruvo summed up: “The opening of Bellagio with its new wave of culinary geniuses brought a renaissance to the culinary world as we know it in Las Vegas. One of the highest-grossing restaurants, if not the highest in Bellagio, was Jean-Georges Vongerichten’s Prime led by Kerry. He was always meticulously dressed with his flowing locks, soft-spoken and a kindred spirit who always wanted to please.

“I was fortunate to meet Kerry in professional and social circumstances, and he became my friend. I never once asked Kerry to do something for Keep Memory Alive as I was raising needed funds for the Cleveland Clinic Lou Ruvo Center for Brain Health, but if I did, Kerry would say, “Yes, of course, I will be there.” How ironic that he and his food and beverage colleagues helped to create the very center that is fighting the neurodegenerative disease that Kerry is now facing himself.

“When Kerry spoke to me a while back about his problems, I was fortunate to be able to make a phone call for him. I did not have to dial a different area code because the assistance was now right here in Las Vegas. He was able to drive to his appointment and meet some of the most important doctors in the world to assist him with his battle. Dr. Jeffrey Cummings and Dr. Ryan Walsh moved to Las Vegas with their families, and we are fortunate to have them. As I’ve said time and time again, without the support of celebrity chefs and friends in the wine and spirits world, the Cleveland Clinic Lou Ruvo Center for Brain Health would have never been built.

“Kerry, we love you. Please know that all of your friends will be there to support you just like you have supported us through the years. Thanks to you, Keep Memory Alive and all the additional charities you have helped, the people of Las Vegas are benefiting from your loving heart.”

Robin Leach has been a journalist for more than 50 years and has spent the past decade giving readers the inside scoop on Las Vegas, the world’s premier platinum playground.

Follow Robin Leach on Twitter at Twitter.com/Robin_Leach.

Follow Vegas DeLuxe on Twitter at Twitter.com/vegasdeluxe.

Follow Sun A&E Senior Editor Don Chareunsy on Twitter at Twitter.com/VDLXEditorDon.

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