Multiple System Atrophy
What: MSA is a rare, incurable degenerative brain disease with no known cause or cure that mostly affects men in their 50s. It combines many symptoms of Parkinson's disease and ALS, with cerebellar ataxia and autonomic failure. It affects just a handful of every 100,000 people.
Symptoms: Often misdiagnosed as Parkinson's early on, some symptoms include problems with balance and coordination, slurred speech and difficulty swallowing. They also may include fainting or light-headedness due to rapid blood pressure drops, urinary incontinence, loud snoring, sleep disorders, and difficulty breathing. March is MSA Awareness Month.
Life expectancy: The average life expectancy after onset of symptoms is seven to nine years, but can be much shorter. Symptoms affect everyone differently.
More information: www.ninds.nih.gov/disorders/msa/detail_msa.htm#138083145 and www.msaawareness.org/?p=632
FAIRBORN — Frank Cervone’s eyes filled with tears and his voice trembled as he explained the rare disease that will kill him.
“I am scared,” Cervone said in a voice much softer than his usual New York Italian bravado. “I am scared of the unknown.”
The Fairborn City Council member, 48, has known for a year that multiple system atrophy — a degenerative neurological disorder with no known cause or cure — will further ravage his body and ultimately cause his death.
In two years, Cervone’s weight has dropped to about 170 from 304 pounds. His pants are baggy and his legs unsteady as he walks with a cane. He has not driven for the past two years, because he periodically passes out.
And while he is working on his bucket list, Cervone wants to fulfill the last year of his council term.
“I’m still staying as much involved as possible,” Cervone said recently in an exclusive interview with the Dayton Daily News.
“I’m trying to bring in businesses. I took an oath of office. I made a promise to be there for the people, and I’m going to be there until I suck my last air.
“I can’t quit. I would be abandoning the people. That’s how I’m cut.”
The disease affects people differently, so his remaining time is unknown. Still, Cervone is surprisingly upbeat, finding opportunity in his situation to create memories with his wife, Susan, their daughter, Angelina, 21, and other family and friends.
“Everything with me is positive attitude,” he said. “The positive side is I get to decide where my future is going for the next month to a couple of years, what I want to do. I know I have time right now to plan a cruise.
“The downside is the next time I collapse, I don’t know if it’s the last time. But I like being in the position that I can plan my own next steps, my funeral, which I’m doing now.”
MSA awareness
Cervone said he’s writing a book, tentatively titled “In My Opinion” and hopes to create a nonprofit organization to benefit MSA. He is selling MSA wristbands for one dollar apiece.
He was honored March 14 by the Beavercreek City Council with a proclamation stating March 2011 as Multiple Systems Atrophy Awareness Month in Beavercreek. It was Cervone’s first public announcement of his disease.
“He will finish his term on council but past that he’s not going to be able to have the physical ability to go and help people clean up their yards or whatever they need to have done,” said his wife, Susan. “I think (it helps) him being a voice for MSA or trying to make awareness for it. Obviously, it’s too late to do anything that’s going to save him, but if we can get enough people interested that we can get some research dollars. He wants to be able to help.”
Cervone said the disease has been difficult on his wife: “She’s been a rock. Other women may have bowed out. She’s staying.
“Me and Susan hope and pray that there’s somebody somewhere in a cubicle somewhere in the world that wants to be famous and finds a cure for this disease.”
How it started
“It was in October 2008 the first time I collapsed,” Cervone said. “I got up for work that morning and my wife found me 20 minutes later in hallway. At that time, they thought I had a stroke. I spent seven or eight days in the hospital, and they tried to find out what was wrong with me.”
He lost 5 to 7 pounds per week for a period of time, and he’s been through many medical procedures since then, including having a pacemaker installed. It wasn’t until March 2010 that a Cleveland Clinic doctor diagnosed MSA, which can trigger shutdowns of the brain, heart, kidneys and more.
“Some people are documented to live up to 11 years,” he said. “It hits everybody different. There’s no set course like, ‘This is your stage here. This is your stage.’ It is unknown. If I pass out, it could be my last time.”
Cervone said his doctor at the Cleveland Clinic suggested he experience life right now.
“She said do everything I can now because in November or December, it’s going to affect me more,” he said. “I won’t be able to walk.”
Making plans
While seeing a death counselor, Cervone is also crossing off items on his bucket list. He said he’s already taken a Caribbean cruise with friends John and Jo Broughton, seen the Ohio Caverns with his daughter and renewed his vows with his wife on a beach in Long Island, N.Y.
“A lot of romantic walks when I can with my wife on the beach,” he said. “That’s the most important thing.”
Still on his list is a visit to Deadwood and Mount Rushmore in South Dakota to pan for gold, deep-sea fishing in California with childhood friend and Hollywood director Frank DeMartini, and a planned May cruise with the Broughtons, this time to the Mediterranean.
“To watch him go from a 300-pound guy, strapping, full of piss and vinegar to just hanging in there is just a horrible sight,” John Broughton said. “But, in saying that, I think what keeps Frank going is his friends.
“When he said I was brutally honest, he’s right. I won’t let him, as his friend, let him wallow in his misery. He’s got misery, there’s no question. But I do make him try to stay strong and he does do that.
“I kid him and say I’m taking him to Italy to show him real Italians. He’s just a New York Italian. There’s a difference.”
His life, humor
Cervone is proud of his Italian heritage and jokes about gangster stereotypes, saying that having more than two Italians in a room means a RICO (racketeering) Act.
He even jokes about his funeral. “We kid around with doing a blue, steel casket with little bullet holes in the side, black-and-white patent leathers,” Cervone said. “I’ll kid around and people will be like, ‘Oh, my God.’ It’s some dark humor, but it’s fun because it keeps me positive.”
Cervone grew up in Long Island and Brooklyn and entered the Army at 17 when a friend’s father forged his own dad’s signature. After his time in the infantry, he worked as a private investigator and then owned his own trucking company.
He met his wife while moving his mother to Florida. First, he and Susan moved to her hometown of Richmond, Ind., before heading to Centerville and finally Fairborn to be the commander of the police reserves. He phased out the trucking business in 2002 and worked repossessing trucks for Penske. He was elected to the city council in 2003 and re-elected in 2007.
His family
His daughter, Angelina, has indefinitely left school at Ohio State University to help take care of him. She carts his wheelchair around when he cannot walk and does everything else.
“This is hard for her,” Cervone said. “She’s a really good friend and daughter, someone to argue with.”
Before his announcement at the Beavercreek council meeting, Cervone said some acquaintances knew part of his story and that his closest friends knew everything.
Asked if he was ready for his story to become public, Cervone’s eyes again welled up and he choked out a few words about his mother Antoinette, now 83. “My mother does not know,” he said. “I don’t want her to know. That’s the weak spot in me. It will kill her. I’m her baby.”
Contact this reporter at (937) 225-6951 or mgokavi@Dayton DailyNews.com.
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