06/20/2003 2:02 PM ET
ALS hits close to home for Cuzzi
Umpire supporter of ALSA, friend diagnosed with ALS
Major League Baseball umpire Phil Cuzzi remembers his best friend Robert Luongo as a strapping, 240-pound Harvard football player, always on the go and full of life.
By Christie Cowles / MLB.com
Cuzzi and Luongo grew up together in Belleville, N.J. They weren't exactly cousins, but they might as well have been.
"His mother's sister married my mother's brother," Cuzzi said. "We were always at family barbeques and family functions because we had the same uncle and aunt and we had the same first cousins."
They went to different elementary schools, but went to the same junior high and high school. Cuzzi, now 47, and Luongo, now 48, both were involved in town and high school athletics.
"This guy was non-stop, full of energy. He was an all-state football player," Cuzzi said.
Luongo started out at Harvard as a pre-law student, but switched to anthropology. After graduation, he worked in sales with the 3M company for about five years. Then he got involved in several entrepreneur-type projects.
He was the agent of the car character James Bond drove in the movies. He had the car restored and took it to car shows around the United States. He also represented Earl Ruby, brother of Jack Ruby, who killed Lee Harvey Oswald, with the gun that was used, on the Larry King Show.
Luongo's eagerness to learn about life and try new things made him the type of person who was always ready for the next adventure.
So Cuzzi never could have imagined what would take place down the road.
He said he still remembers the day Luongo called in the summer of 2000 to tell him things just didn't feel quite right lately.
"He said, 'Something's wrong, my arm keeps going numb, and my hand keeps tingling,'" Cuzzi said. "And then it went from his arm to his other arm, down his leg. A long story short, he was diagnosed with ALS, Lou Gehrig's disease."
ALS (amyotrophic lateral sclerosis), more commonly referred to as Lou Gehrig's disease, is a neuro-degenerative disease that attacks nerve cells in the brain and spinal cord. It causes a person to lose the ability of their brain to initiate and control voluntary muscle movement. In its latter stages, the person becomes totally paralyzed, yet their mental capabilities are still intact.
"In a very short period of time he was limping, and walking with a cane. Then he fell, and he had to use a walker. And then he would fall with that. And then he went to a wheelchair," Cuzzi said. "It was a pretty quick progression of his muscles just deteriorating."
Luongo now lives in Florida with his wife, Debra, and 8-year-old daughter, Dominique.
"To see him now, just in his wheelchair, he must weigh 120 pounds," he said. "It's a terrible thing to see."
Luongo isn't able to move, except for his eyes. He cannot speak, and he has to eat through a feeding tube.
"The first thing that started to happen to his speech was you thought that he had a few drinks, he sounded like he was drunk," he said. "But then it went from that sound of just slight slurring to all of a sudden you're saying, 'Oh, the person on the other end of this phone is sick.'"
Cuzzi remembers how difficult it became trying to communicate with Luongo when his speech began to falter.
"I used to pray when I would call him to please help me to understand what he was trying to say," Cuzzi said. "Because as frustrating as it was for me to not be able to understand him, I know it was 20 times more frustrating that he knows what he's trying to say and I kept saying, 'What, Rob? What, I can't understand you, Rob, tell me again?'
"I used to just pray, 'Please, God, let me please understand what he's trying to say, so I don't have to keep asking him to repeat himself.'"
Cuzzi said it was especially hard because he knew Luongo's mind was as sharp as ever.
"I know who he was, and his mind is the same," he said. "It isn't like Alzheimer's where you say the person just doesn't even know what's going on. He is the same mind, trapped in a shell that he can't do anything about. It's devastating."
He knew he couldn't do anything about Luongo's physical condition, but Cuzzi decided to help in other ways. He wanted to help his friend communicate, and he had heard of computer technology that essentially allows a person to type using only his or her eyes.
"I researched it. You look into this lens, and you see a computer screen," he said. "When your eye focuses on a particular character for a couple of seconds, that registers the same way that you and I would punch in the letter. It's truly amazing."
Cuzzi knew the computer would be expensive, but he also knew there were many friends who would be willing to pitch in.
"We had taken a family cruise last November, and I wound up getting a free cruise," he said. "We decided that we weren't going to use the cruise ourselves, so I asked Royal Caribbean if I could donate the cruise to a charity. They agreed to let me do it."
He decided to sell just enough cruise raffle tickets to pay for the computer for Luongo. He wanted to get the New York Yankees involved and have manager Joe Torre pull out the winning ticket at a Spring Training game in Tampa in which Cuzzi was umpiring.
Cuzzi said the Yankees and MLB agreed to his idea, and it turned out great. He got more support from friends soon after that.
"Our friends at home, the response was so overwhelming from tickets that we were selling, that additional friends of ours who were the printers in our town printed up extra tickets and sold many more tickets than to cover the cost of computer," he said.
So Cuzzi started up a college fund for Luongo's daughter. When all was said and done, they paid for the computer, they put $10,000 in the college fund and they were also able to make a donation to the ALS Association's chapter in Florida, which had been so helpful to his friend.
Cuzzi plans to have more fundraisers each year, whether it's raffling baseball memorabilia, or golf tournaments, whatever they can do to help Luongo and help his daughter go to college.
This past winter, Cuzzi became more involved with the ALS Association, focusing primarly on the Florida chapter so far.
"The people in Florida were really very nice, and they had things planned for the offseason as well," he said. "And I told them that I'm happy to come down and be involved in any way that I can."
Cuzzi has helped out with public service announcements, wearing his umpire's uniform to show MLB's support, and hopes to be able to participate even more in the near future. This is Cuzzi's fifth season as a Major League umpire.
"I told them that I'm willing to do whatever it is that they want, and I've also been contacted by the national public relations guy out of LA," he said. "They asked me if I would be willing to even go to Washington, D.C., to testify. And I just kind of left it as an open book to them."
He said he feels very strongly about helping out with the ALS Association because many people are unaware of the effects of the disease.
"I just think it's important because it affects so many more people than what anybody realizes," Cuzzi said. "It's such a devastating disease because it can come to anybody, and they don't know anything about it. They don't know why, and the life expectancy is under five years."
Cuzzi hopes his efforts will raise awareness of ALS, and help to someday find answers to those questions.
Christie Cowles is a reporter for MLB.com. This story was not subject to the approval of Major League Baseball or its clubs.