By: David DiPino Contributing Writer
Rocco Mangel of the famed “Rocco’s Taco’s” has tasted success working his way up from busboy to owner buying the restaurant he cleared tables in yet today he has a bigger challenge than the everyday grind of being one of South Florida’s most successful restaurateurs.
Mangel, 43, has multiple sclerosis (MS) and so far this year has raised $125,000 for the National MS Society’s South Florida chapter. Rocco owns Rocco’s Taco’s & Tequila Bar, 110 E. Atlantic Ave. and at 5250 Town Center Circle, Boca Raton. He also owns Rocco’s Tacos in West Palm Beach, Palm Beach Gardens, Fort Lauderdale, Orlando and Brooklyn, New York.
“I’ve always paid it forward when I became successful. I figured that once I got my diagnosis in order and had exactly the facts of what it was I said let me see what I can do to give back to the community,” said Mangel. “I announced that I had MS and it just went viral.”
Mangel said no two MS cases are the same. He has relapsing-remitting MS.
“MS is a snowflake disease. Meaning two snowflakes aren’t alike. You can’t compare two cases and say they’re alike. What happened in my particular case is that I have a case of MS where clinically, I had signs in an MRI that showed I had lesions (brain) in 2009. It’s only in 2016 when I actually had some symptoms,” Mangel said. “Then, the doctors definitively said you have relapsing-remitting MS.”
According to the National Multiple Sclerosis Society, the number of lesions on an initial MRI of the brain (or spinal cord) can help the physician, a neurologist, assess the disease.
Dr. Brian Steingo, a neurologist specializing in MS at the Palm Beach Neuroscience Institute (PBNI) in West Palm Beach said relapsing-remitting MS is a common type of the disease.
“About 80-90 percent of people present with relapsing MS. About 10 percent start with progression from onset called Primary Progressive MS. If people with relapsing MS are not treated they may become progressive over time, called Secondary Progressive MS,” Dr. Steingo said.
Dr. Steingo is not one of Mangel’s doctors but does have practices locally. Dr. Steingo said there is no cure for MS, no way to “freeze” the disease. He said our goals are to reduce or prevent relapses, and slow down progression of disability. The typical age of onset of MS is 20-45.
When asked about Rocco’s high activity level, brain lesions and life stressors, Dr. Steingo said unfortunately being active does not prevent anyone from developing MS. But being active helps to optimize MS health in most people, so exercise and other self-control aspects, such as diet, are very important. MRI scans are very useful for diagnosing and following MS. Typically there are white spots on the brain (lesions or plaques) and the location, size and shape of these is important (many other conditions cause white spots on the brain). In Rocco’s case he said he had noticed something not quite right on the left side of his body. Dr. Steingo said it is quite likely that the left-sided symptoms were early signs of MS.
“In a susceptible individual stress factors may trigger off MS. These include infections, and life stresses. Any new neurological symptoms that a person experiences should be evaluated by a neurologist,” Dr. Steingo said.
Mangel now has a doctor in New York and one in Miami, one of which was at Tisch MS Research Center of New York.
“Both doctors said I was very lucky to have the type of MS I had. In the certain way its (MS) is affecting me. I had one disorder on the left hand side of my body. I have fatigue but nothing that would stop me,” Mangel said.
Rocco’s physician at the Tisch Center is Saud A. Sadiq, MD, FAAN, Director and Chief Research Scientist of the Tisch MS Research Center of New York.
“Dr. Sadiq told me with the medical advancements we have today in age some of them are significantly advanced that we’ve come so far that they can prevent and prolong relapses. There’s no cure for MS. However, you can get on medication that can prevent and prolong and that’s what I did,” Mangel said.
Rocco said he’s on a medication called Tysabri. According to Tysabri.com, TYSABRI® (natalizumab) is a prescription medicine used to treat adults with relapsing forms of multiple sclerosis (MS) to slow the worsening of symptoms common in people with MS and to decrease the number of flare-ups (relapses). TYSABRI increases the risk of progressive multifocal leukoencephalopathy (PML). TYSABRI is for people with relapsing MS who won’t give up, give in, or stop fighting. Administered as an infusion once every 28 days, TYSABRI can help people fight for the things that matter. Important things, like slowing the progression of physical disability, reducing formation of new brain lesions, and reducing the number of relapses.
“It’s the most effective MS drug on the market,” Mangel said. “I’m on my fifth infusion.”
Rocco is now seeing an MS physician in South Florida in addition to Dr. Sadiq in New York, New York. He is seeing Dr. Kottil W. Rammohan, MD, a neurologist at UHealth University of Miami Health System, a Professor of Neurology – Clinical, and the Director of the Multiple Sclerosis Center at the University of Miami, Miami, FL.
“I changed my lifestyle. I take my meds. I don’t drink and I don’t smoke and I don’t eat bread. I completely changed my life in every aspect from the way I think, eat, sleep, walk, talk, the way I interact with others, I live everyday as it could be the day that something could happen. I don’t fear it. I embrace it and therefore I think most people I talk to see me as an example of how someone should act when they get a terminal illness or incurable disease,” Mangel said. “We only have one life and if you spend more time dying than living then you’re going to die. I live my life. I have a four-year-old little girl and I can tell you my life has never been better.”
His daughter Charley, 4, is his biggest cheerleader in his fight against MS and she helps raise funds to battle the disease. Mangel said he always has MS awareness and is raising funds for the local MS chapters year round at his Rocco’s Tacos restaurants in South Florida and beyond.
On Oct. 22, Mangel will be doing a bike ride through all five boroughs of New York City to raise money for MS. This is in addition to the West Palm Beach MS Walk ALS held in February.
For more information on Rocco Mangel and Rocco’s Tacos visit: facebook.com/theroccomangel, Instagram.com/roccos_tacos, Twitter.com/RoccosTacos, Rocco and Charley on You Tube.