The voice was a familiar and friendly one.
"Hey, John. It's been a while."
The reception from Larry Balko upon entering his Florida home was a welcome invitation; except it wasn't his voice. Not really, anyway.
A certified superintendent and sales rep in the West Palm Beach area for the past 20 years, Balko was diagnosed five years ago with early onset-bulbar, an especially aggressive variant of amyotrophic lateral sclerosis, better known as ALS, a degenerative neuromuscular disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control. There is no cure.
Known as "Biff" to many, Balko, 58, cannot walk or talk. He is unable to eat or breathe without assistance. He only can speak through use of an Eyegaze, a speech-generating device designed specifically to help ALS patients, of which there are more than 30,000 nationwide. The average survival rate for someone with ALS is three years, according to the ALS Association. Twenty percent of those with ALS live five years, and 15 percent live for 10 years or more.
"The disease doesn't determine your days," said Balko's wife, Rebecca. "God determines your days."
A virtual prisoner in his own body, Balko's time is spent exclusively in either a special motorized wheelchair or a hospital bed, yet he refuses to let ALS define him. A cheerful person before contracting ALS, he still has that same jocular outlook.
"After high school, I enlisted in the U.S. Navy and went to San Diego," Balko said through his Eyegaze. "It was there where Biff found Crown Royal and started talking in third-person. Last month, Biff celebrated nine years sober, so he pretty much lives on in so many stories and memories. You can ask anyone, Biff always made the party better."
It would be easy to try to control something like this with your own plan. He has gone through this with such grace and confidence. Others would have given up and been depressed. The way he's gone through this shows that God is bigger than all of this.
Larry and wife Rebecca are eager to share their story, which is one of devotion, love, faith and unyielding support from all corners, including his spouse, his children, his church, fellow superintendents, his employer and not least of all, the staff from the ALS clinic at the West Palm Beach Veterans Affairs hospital who manage his care.
"You know, you have your faith, and you learn to trust that the Lord is in it with you," Rebecca said. "That doesn't mean that you don't have questions.
"He stays so positive, but he's not in denial. But he still has many questions, like 'why me?' "
Larry and Rebecca also want to share their story to bring awareness to this devastating disease in hopes that research scientists might one day find a cure.
"There may be people who read stories like this about people with ALS, and maybe they know someone who has it, or a relative gets it," Rebecca said.
"ALS makes people who don't know about it feel isolated from you because they don't know what to say, or do. It's better to just rip the Band-Aid off and talk about it. I think one good thing about (talking about this) is it spreads information about ALS, which is important."
Members of LifeSpring Church in nearby Wellington, the Balkos did not have to look far to find faith to help them navigate through this challenge. They have always lived a faith-filled life in their 23-year marriage, and were well armed to meet ALS head-on when they received the diagnosis in 2020. They hope that telling their story might help or inspire others about the power of faith.
"Faith has been the cornerstone of our family," said Tatum Edlin of Huntsville, Alabama, one of Larry's two daughters from a previous marriage.
"This picture would be entirely different without it. Without comfort and support from God, he wouldn't have made it this far, and we would be having a very different conversation."
After high school, I enlisted in the U.S. Navy and went to San Diego. It was there where Biff found Crown Royal and started talking in third-person. Last month, Biff celebrated nine years sober, so he pretty much lives on in so many stories and memories. You can ask anyone, Biff always made the party better.
That faith is indeed important.
Early onset-bulbar ALS initially affects the muscles in the head and neck, namely those that control swallowing and speaking. Early symptoms typically manifest as slurred speech and difficulty breathing. That was the case for Balko. Eventually, the disease renders other parts of the body helpless.
The U.S. Centers for Disease Control and Prevention estimates that there are about 33,000 cases of ALS across the U.S. Of those, about 90 percent are considered sporadic, in that they occur randomly and are not genetic, according to the Mayo Clinic.
Also known as Lou Gehrig's Disease, named in memory of the former New York Yankees player who died from the disorder in 1941 at age 37, ALS has in the past five years robbed from Balko the ability to talk, walk, the sensation in his fingers and do so many other things others take for granted.
"He's a tough man," said Balko's other daughter, Charlie Holbrook, who also lives in Huntsville. "A lot of people going through this would become stoic and cold, but not Larry. He's leaned into God."
Long before his diagnosis in 2020, Larry and Rebecca participated in the ice bucket challenge, a viral social media campaign from about a decade ago to raise awareness for ALS, in support of friends who had the disease. An ALS diagnosis of their own was the furthest thing from their minds, when they first entered the VA hospital looking for answers.
"I remember we were sitting on the sofa, and it was not long after his diagnosis and the memory timeline was our video from the ice bucket challenge," Rebecca said. "We had no idea what ALS even was then."
They know now.
Symptoms presented about six years ago as difficulty breathing, a twitch on his right side and slurred speech. Balko, who enjoyed singing, suddenly was unable to hit some of the high notes that once came so easily. Clearly, it was time to seek help.
"He couldn't get his breath, his sinus was blocked 70 to 90 percent, and he had slurred speech," Rebecca said. "They ran a scope down and saw on one side he had a lazy, flat larynx."
Doctors inserted a feeding tube in 2022. That was two years before he needed it, but doctors said getting it sooner than later would ease the transition when it was actually needed. Three years later, it is the only way he receives food and water and takes his medication. Confined to a bed or wheelchair, he has been breathing through a tracheostomy tube and an oxygen machine since last December. Recently, he completed the difficult task of pre-planning his own funeral.
The VA set him up with an Eyegaze tablet as soon as the diagnosis was made, so he could speak into the device and it could bank his voice. Today, it mimics his voice as he visually scans the alphabet to piece together words and sentences.
Among the symptoms of ALS is pseudobulbar affect, the sudden and uncontrollable outbursts of emotion, including bouts of inappropriate laughter and crying.
Faith has been the cornerstone of our family. . . . This picture would be entirely different without it. Without comfort and support from God, he wouldn't have made it this far, and we would be having a very different conversation.
"Because I have pseudobulbar, I would cry like a 16-year-old girl over a commercial, and I couldn't control," he said.
Said Rebecca of the combination of pseudobulbar affect and raw emotion: "It wasn't like a little emotion, but it would be like turning on the faucet and not being able to stop.
"Larry had to learn it was OK, that not all the crying was bullbar and that it was OK. Some of those outbursts aren't necessarily tied to emotion. It's just uncontrollable, almost a switch that you just can't control. But, for him, he also was learning that he was having emotion, and it was OK to have emotion."
He requires in-home healthcare and nurses who monitor his vitals through the night, courtesy of the VA. He also has a devoted caretaker in Rebecca, who has been by his side for every need, whether it is administering medication or using a Hoyer lift to transfer him to and from bed. Every couple should be in love as much as they are.
Their relationship in the face of the most challenging thing they've ever faced is remarkable and refreshing. He still teases her, and she dotes over him and tends to his every need.
"Oh, she is a rockstar," Charlie said. "She doesn't see it that way. She thinks she's just doing what she's supposed to do. Sometimes, I have to shake her and tell her 'what you're doing is incredible.' "
The progression of the disease has been dramatic.
When daughter Tatum and her husband, Konnor Edlin, were married three years ago in Jamaica, Larry was still upright and using a walker. To that end, he and Rebecca were able to attend, and he was even able to dance with the bride. Last October, when Charlie and husband Grant Holbrook were married in Alabama, Larry's condition had progressed to the point where it was unsafe for him to travel that far. The service was streamed live so Larry and Rebecca could watch from home in Florida, where he was able to make a speech through his Eyegaze device over FaceTime.
"It would be easy to try to control something like this with your own plan," said Charlie. "He has gone through this with such grace and confidence. Others would have given up and been depressed. The way he's gone through this shows that God is bigger than all of this."
A graduate of the Auburn University turfgrass management program, Balko is a past president and long-time member of the Palm Beach County GCSA chapter. It was early in his career in golf that he earned his nickname.
"It was about the time that Back to the Future came out," he said. "There already was another Larry on staff, so my name on the work board was Biff."
Following a stint at Pine Tree Country Club in Birmingham, Alabama, Balko was superintendent at two courses in South Florida from 2006 to 2014, first at Park Ridge Golf Course in Lake Worth and President Country Club in West Palm.
Balko's fellow superintendents in South Florida have not forgotten him.
At last year's Future of Golf Tournament, the largest fundraiser for the 288-member Palm Beach County GCSA, every golfer who won a cash prize donated their winnings back to Balko.
The disease doesn't determine your days. God determines your days.
"That has to be so frustrating," said fellow Palm Beach County superintendent Mike Rienzi of Bear Lakes Country Club. "This is just horrible to watch someone you care about go through that."
When he left President Country Club, Larry shifted gears for a career in sales, first at Golf Safety and BMP Solutions. He followed with sales positions at Diamond Fertilizer, then started his own company, Biff Inc. Before he was diagnosed with ALS he joined Florida Superior Sand.
"I've known Larry since he first came to Florida," said Andrew Arena, president of Florida Superior Sand. "I hired him because he's an honest guy. It's hard to find someone who you know is going to look out for your customer. He's a wholesome guy."
Even through his bout with ALS, Larry still maintains a handful of accounts.
"He came to us, then he got sick. He still maintains the accounts he has," Arena said. "Obviously, if he needs help with them, then we help him. These are relationships he has built, and they are loyal to him and are sticking with him."
Servicing those accounts is about more than just business for Larry.
"When I started 'Biff-ing', I started selling sand," Larry said. "Now, I have 10-ish accounts that text in so I can stay in touch with my friends."
