Rather than long and hard, the road has been short and steep for ex-cyclist Jay DePaola.
DePaola and his wife Lynn, both Cedar Grove residents since 1986, cycled an average of 60 miles a week for 25 years. A family with an appreciation for physical health, all three of their daughters swam on the Cedar Grove swim team. Their youngest, 23-year-old Christina, even went on to pursue coaching, according to her parents.
But DePaola’s active life quickly came to a halt in November of 2012 when he was diagnosed with Amyotrophic Lateral Sclerosis or ALS, more commonly known as “Lou Gehrig’s Disease.”
“I knew that something was wrong as early as December of the previous year. It started with my feet and my legs. First the cramps. Then the weakness. Then loss of control,” DePaola said from his home recently.
The disease lessons nerve and muscle function and is so rare it can effect as many as 30,000 Americans at one time, according to the ALS Association website, found at alsa.org.
“There are 13 million people who have cancer, so we’re a very small population of people,” DePaola said.
Focusing on the positive, DePaola and Lynn take time to reflect on their own family’s accomplishments, citing how their oldest daughter, 28-year-old Allison, served 10 months in the Army while performing security work in Iraq, before finishing college and settling down in Alabama with her husband and three children.
Their second daughter is also a source of pride for the DePaolas. Angela, 25, arrived home this July after spending two years in the Peace Corps.
“Ally went to [Iraq] to fight, and Angie went to [West Africa] to help people,” DePaola said, praising his daughters’ bravery and conviction.
Their youngest girl, Christina, is currently living at home, helping DePaola with his meals and movements around the house.
Though the ALS Association has estimated that most cases of the neurodegenerative disease occur between the ages of 40 and 70, the 58-year-old father of three can attest to seeing a 21-year-old battling the illness. “Here I see this kid who hasn’t had a chance to live his life yet, and have it taken away from him,” DePaola said.
DePaola and Lynn say 5 percent of ALS cases are genetic, and 95 percent are random. “Now they’re doing bio markers to see what causes it. Because they don’t really know,” Lynn said. “75 years ago, Lou Gehrig had it. And 75 years later, they still don’t know why.”
Due to the loss of muscle function caused by ALS, tissues weaken and become smaller from lack of use. “I’ve lost 25 pounds since the diagnosis. I’m averaging about a pound a month, and we don’t know how to stop it … if we can stop it,” DePaola said.
The average lifespan of patients with ALS is two to five years after diagnosis, according to the ALS Association website.
Following the shock of his diagnosis, DePaola said he tried a drug proven to extend the lives of ALS patients by three months. But, he said, the drug made him sleep all the time. “What good was this? I’ll have three extra months of life, but my entire life is going to be half asleep,” DePaola said, adding that he stopped the medication because “there was nothing else [he] could do.”
Accompanied by his wife, DePaola still attends monthly doctor visits, as well as a support group in Saddle Brook, which helps his family cope with their current circumstance.
DePaola said he gets through each day with the help of Lynn.
“My fine motor skills are starting to go. I can’t do buttons anymore,” he said.
Lynn has found a quick fix, though: “taking all the buttons off and putting Velcro strips on everything,” she said.
After two and a half decades of providing for his family with work at CIT, a financing company, DePaola said leaving his job was one of the biggest changes he’s had to endure.
The other was driving.
“When I realized that I couldn’t always count on being able to put the same amount of pressure on the pedals. If a kid had ran in front of me, I wouldn’t have been able to stop. [Then] I realized I’m no longer safe on the road,” DePaola said.
DePaola and Lynn, who will celebrate their 32-year anniversary in September, say they try to find something to be thankful for every day.
So it was a great relief when the annual Cedar Grove Swim-A-Thon chose the DePaola family as this year’s recipients. All funds raised at the event was donated to the family.
While they did not reveal the total amount raised during the swim-a-thon, the family says they are going to put the money toward getting DePaola a handicapped van so he can transport his motorized wheelchair to different areas outside of the neighborhood. “Disability pay is not like normal pay,” DePaola said, “insurance won’t cover everything, and a used handicapped van can cost as much as a brand new car.”
His options are either to get the van, or be restricted to the house. With donations from the local swim team, the family realized that fundraising opportunities may be their only option to help DePaola get the most out of life.
For now though, the family is still making big plans for the future. “We’re planning to get a wheelchair for the shore,” Lynn said. Last year, DePaola’s plans to go to the beach were cut short because his wheel chair would get stuck in the sand.”
“This year I decided to ask the ALS of New York, who has a loan closet, if they had a wheelchair for the beach. And they had one. So we’ll see if it works,” DePaola said with a huge smile on his face.
Eventually, ALS is said to affect all motor neurons that provide voluntary movement and muscle power, including talking, swallowing and breathing, according to the ALS site.
But despite the fear of not knowing when and how he will lose these muscle functions, DePaola is determined to make every moment count.
“One of the things I’ve done my best to do is to try not to focus on what I’ve lost, but what I still have.”