Celebrity Chef Kerry Simon Battling MSA – Multiple System Atrophy – and Raising Awareness to Rare Disease
While battling is certainly nothing new for “Iron Chef” winner Kerry Simon, he never dreamed he’d be facing an ongoing daily battle for his life. Kerry has been diagnosed with an aggressive form of Parkinson’s disease. There is little known about this rare form of the disease, MSA – multiple system atrophy, than unfortunately is known. It’s Kerry’s passion to now bring awareness to the disease, by sharing his own extremely personal and heart-wrenching story.
MSA is similar to other muscle-plagued brain diseases that have affected other prominent and familiar figures such as award winning actor Michael J. Fox and boxing legend Muhammad Ali. The difference is Kerry’s battle is a far more advanced disorder, multiple system atrophy is a very rare degenerative neurological illness that affects multiple parts of the body, causing slowness of movement, muscle rigidity and poor balance. We most recently lost famous radio personality and DJ Casey Kasem to a lesser version of the disease.
Chef Kerry did initially what we all do when faced with overwhelming and heart-breaking news, he kept quiet, sharing the details with very few close personal friends and family members. Surely trying to absorb the shocking diagnosis and come to his own terms of how to cope and best deal with physical and mental changes as they were beginning to take place. His goal of course being able to maintain optimal health and mobility while bravely charting a new course for how to live daily with strength, determination and hope so that other’s diagnosed, will be able to follow by his example.
He goes out of his way to thank Southern Wine & Spirits CEO Larry Ruvo for steering him to a doctor at the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas where his MSA diagnosis was finally confirmed. He is currently having medications and rehab work monitored there to help him manage his physical symptoms and for emotional support.
“I would have been lost if that amazing cliic had not been built in Las Vegas,” Kerry said.
Facts about MSA is that not only is it extremely rare, affecting approximately 4.6 people per 100,000 in the world. It is neither hereditary, nor is it infectious. It is essentially a mysterious disease as nobody knows what causes it, why it happens or where it comes from. Although researchers and scientists believe they are making advances, there is still no known cure. Treatments consist of medication and rehab workouts which try and slow the impact of the condition and prevent it worsening. Treatment goals are simply based on controlling symptoms in an attempt to improve movement and maintain balance.
Kerry is one of those rare individuals who when faced with a tough path in life doesn’t give up. He is a fighting, gentle spirit who is determined not to give in. If sharing his story can help even one person cope who will follow in his footsteps, so be it. He is not giving up, not laying down and not taking the lazy way out. Although he is now in a wheelchair for ease of mobility, he still maintains an active lifestyle as his symptoms permit. He may be slowed down but he won’t be stopped. He will make sure his experience will be shared, and it will change the way others live and cope with MSA.
Kerry’s own personal experience was shocking. He looks several decades younger than his years and has been a self-proclaimed ‘health fanatic’ his entire life: exercising, no smoking and no drinking. “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 got to keep hoping.”
Kerry Simon is a graduate of the Culinary Institute of America, Chef 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.
He may look familiar to you as he appeared in the 2005 season of “Iron Chef America,” where he battled and defeated Chef Cat Cora in “Battle Hamburger”. He’s also appeared on numerous TV shows to include being a mentor on Gordon Ramsay’s “Hell’s Kitchen.” Kerry also developed, opened and oversaw such famous culinary establishments as Jean-Georges in Hong Kong, London, New York and Chicago and then in his beloved Las Vegas was the the executive chef and partner at Prime in Bellagio.
Kerry’s own personal wish is that others will now join him in his fight. They will see him and know what’s wrong. He never expected he would be a sufferer of this unforgiving illness and wants to inform us that is can happen to anyone, at any stage of their life. Good genes and healthy habits do not insulate you from the possibility of a future MSA diagnosis.
Please join the fight to discover the cure. Tell someone you know so they can tell someone they know. Let’s not stop sharing this story until we have the answers about MSA and the cure.
Chef Kerry Simon has been a great supporter for many causes. Now he is facing this challenge with courage and grace, and raising awareness for this little-known, but very serious disease.
To learn more, go to www.fightmsa.org.
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Written by Jane Emery