Lakewood Ranch couples bond to face Parkinson’s

Meeting me at the front door of his Lakewood Ranch home, Craig Belesi extended his right hand.

I grabbed it, not knowing what to expect from the ensuing handshake, because Belesi has Parkinson's disease.

Suffice to say that Belesi's nickname could be "crusher."

I was somewhat taken aback by the strength of his grip, which overwhelmed a guy who types for a living. I figured I would be more prepared for a rematch when it came time to leave.

Belesi's wife Susan let me know people typically believe that those with Parkinson's are, indeed, weak.

"They see weakness," she said. "In turn, it is the opposite. They have to fight it every day."

In today's journalism world, saying that someone is "fighting" a disease is a faux pas. In reality, at least for Craig and Susan Belesi, and Ron and Jodi O'Toole, fight is the perfect word.

Ron O'Toole is fighting multiple system atrophy, which is very similar to Parkinson's. The O'Tooles live in Lakewood Ranch as well, and they have formed a friendship with the Belesis because of this unwanted bond.

Ron O'Toole was diagnosed in 2018 and his competitive nature has been both a positive and a curse. On one hand, he will work as hard as humanly possible to keep his body functioning. On the other, he must endure the frustration of seeing his ability to do normal tasks dissipate.

At 58, Ron O'Toole remembers his younger days as a baseball and football player. If you sit next to him, you would assume he could still run the bases better than most. He looks healthy, athletic.

Yet, after his diagnosis, he found himself unable to conduct workouts in his local gym.

"In my mind, I can do it," he said. "But I can't."

Jodi O'Toole knew they needed help, and they were willing to move from their home in Wisconsin to find it. She began to research, and she came upon Parkinson Place Center (ParkinsonPlace.org) in Sarasota. The O'Tooles liked the thought of living in Florida because Ron could be active outside all the time.

It wasn't working out in Wisconsin.

"It gets dark around 4 p.m. in the winter," Ron O'Toole said. "There were some long nights." 

So not long after his diagnosis, Jodi O'Toole called the Parkinson Place Center in Sarasota and spoke with Susan Belesi, who had become the membership relations director. They formed an immediate bond.

"We decided to come down in 2021," Jodi O'Toole said. "We sold our home of 30 years."

It wasn't just anyone who answered the phone at the Parkinson Place Center. It was Susan Belisi, who has walked the same path and who knew what the O'Tooles were experiencing.

Craig Belesi was diagnosed with Parkinson's 23 years ago when the couple was living in New York.

"We were going to all the boroughs for therapy, speech therapy, physical therapy, to see doctors," Susan Belesi said. "Just the copays were $500 to $600 a month."

At the time, Craig Belesi was an executive vice president for a large construction management company. Susan Belesi was a nursery school teacher. Although they continued with their jobs, she could see the writing on the wall that those costs eventually were going to wipe them out.

"I had to find a better way," she said.

Eight years ago, she began searching for "free things for Parkinson's" on the internet. Up came Parkinson Place Center.

They loved what they saw, free access to more than 60 ongoing classes, educational programs, events, and other free services offered at Parkinson Place.

It was time to move.

Knowing that "people with Parkinson's have to exercise," they began going to Parkinson Place regularly and all the time Susan Belesi was thinking, "how can this be free? Is this true?"

She made the facility such a big part of their lives that eventually she became an executive there.

The Belesis met when they were students at the New York Institute of Technology in Old Westbury, New York. They now have been married for 41 years, with the last 23 years taking them down a different path than they ever expected.

"This is a disease of longevity, and not one person experiences it the same," she said. "But the biggest thing about Parkinson Place is the socialization. When we moved, we didn't know anyone. It helped to meet people and create a bond. No one understands this more than us."

Likewise, the O'Tooles found that it was helpful to have friends experiencing the same struggles.

"I can't call up my lifelong girlfriends. they don't understand," Jodi O'Toole said. "And we don't have a lot of time for family and friends."

Both the Belesis and O'Tooles urge anyone who is facing Parkinson's to search for resources that could help. Many resources are available, including Parkinson Place Center. Parkinson's is a progressive, lifelong condition that affects the brain and worsens over time. Cells in the brain that produce dopamine, a chemical that sends messages between nerve cells, or between nerve cells and muscle cells to help the body function, stop working. There is no cure for Parkinson's.

"One of the biggest things for Craig is that (going to Parkinson Place Center) gave him a reason to get up in the morning," Susan Belesi said. "The big thing with Parkinson's is balance. The body wants to lean forward. Many of those with Parkinson's pass away from falls.

"We learned to get through this, and we had to laugh about it. It takes humor, it takes love, and it takes respect for each other."

It takes strength.

Ron Belesi had a message for those who are navigating the disease.

"If you have Parkinson's, you have to work your butt off," he said. "The biggest thing is to get your body to do what you can. You have a disease that you have to fight in order to win. Don't give up."

With that said, it was time for me to go. I walked to the door, and Craig Belesi extended his hand. This time, I squeezed a little harder, and he turned up the heat.

Nothing weak about this guy.