A diagnosis draws in friends

Classmates plan fundraiser for Hollister man with ALS
Lenny Alvarez knew something was not right about the way he was
feeling, though he never expected the worst. Then, fortuitously it
now seems, he took a spill during his son’s baseball team’s pool
party in 2006 and broke his wrist.
”
I thought it would heal and it never healed,
”
said Alvarez, 43, a lifelong Hollister resident.
”
I had been feeling weak before that. When I’d go to the gym, I’d
favor my right side and work out on the machines instead of with
free weights because it was a lot easier.
”
Classmates plan fundraiser for Hollister man with ALS

Lenny Alvarez knew something was not right about the way he was feeling, though he never expected the worst. Then, fortuitously it now seems, he took a spill during his son’s baseball team’s pool party in 2006 and broke his wrist.

“I thought it would heal and it never healed,” said Alvarez, 43, a lifelong Hollister resident. “I had been feeling weak before that. When I’d go to the gym, I’d favor my right side and work out on the machines instead of with free weights because it was a lot easier.”

When he drove with one of his AT&T coworkers, Alvarez’s right arm would occasionally twitch and they’d laugh about it because Alvarez thought it was a result of his workout regimen.

Alvarez finally went to see a doctor, who sent him to a local neurologist, who shared the shocking news: Alvarez, an otherwise healthy, active man, had Amyotrophic Lateral Sclerosis (ALS), commonly known as Lou Gehrig’s Disease. There is no known cure for the progressive, degenerative disease that attacks nerve cells in the brain and spinal cord and causes muscle weakness and atrophy.

“Before the diagnosis I just didn’t think it was anything – or maybe I was just wishing it wasn’t,” said Alvarez, who recalled nearly fainting when he heard the news. “They had to sit me down. I didn’t know what to think. It’s a terminal illness and there’s no cure for it.”

His wife, Lupe, said the couple was “basically in denial for a little bit.” They sought the opinion of three other doctors, and the diagnosis remained the same.

After six months of doctor’s visits, Lupe finally convinced her husband to share the news with their children, Danielle, a 17-year-old San Benito High School senior, and Nathan, a 13-year-old eighth-grader at Rancho San Justo School. The six-hour appointments, which include a team of medical professionals ranging from physical therapists and nutritionists to counselors and respiratory doctors, were too hard to hide anymore.

It was tough to break the news, the couple recalled this week as they sat on the couch in their living room, but Alvarez realized he had nothing to hide. Friends began to learn about his ALS diagnosis, and the word spread quickly, thanks to his strong community ties.

“After we told the kids, it was like, OK, it’s open,” Alvarez said. “We live in Hollister. If someone is ill, people find out. My biggest worry was the kids finding out from somebody other than us.”

Talking about the disease “doesn’t bother me…because it can happen to anybody,” said Alvarez, who went on permanent disability from his job as an AT&T service technician on Aug. 5 after 14 years with the company.

He now receives physical therapy at Fritter & Schultz in Hollister four days a week, getting treatment on his legs, hands, and shoulders.

“Because of this illness, just doing any kind of physical activity makes me tired,” Alvarez said. “They’ve taught me stretches to keep me as limber as possible.” Still, he knows that nearly everyone who has ALS ends up in a wheelchair.

Lupe and Lenny know what the statistics say: “You go on the Internet and the first thing you read is that you basically have five years to live” with ALS, Lupe said.

However, Alvarez is quick to add that he estimates he’s had the illness for more than three years, and it hasn’t progressed as quickly in him as it has in others.

“Sometimes it’s scary for me, but I feel fortunate because it goes through some people’s system so fast that within a couple of years they’re in a wheelchair or they can’t eat” because they lose the ability to swallow, Alvarez said.

The debilitating disease takes more than a physical toll, Alvarez conceded.

“It’s hard because you’re a man and you think you can still dig that hole or trim that tree,” he said. “If I do it, I’m beat and I have to take a nap to re-energize myself.”

Family and friends have rallied to his side.

At his 25-year San Benito High School class reunion recently, classmate Ivy Villegas Borges came up to Alvarez and said, “Lenny, just hear me out,” Alvarez recalled. “She said, ‘A lot of people know, Lenny, and they want to help you. We want to throw a benefit dinner for you and your family.'”

Alvarez agreed on the condition that nothing was announced or discussed at the reunion.

Since then, the effort has grown into a dinner-dance and silent auction benefit slated for Nov. 1 at the Bolado Park Pavilion. The goal is to raise money to help the Alvarez family with medical expenses, such as treatments that may slow the progression of ALS.

“Lenny is always the first to volunteer and give back to his community,” Borges said this week. “Several years ago, one of our classmates passed away suddenly and Lenny asked me to help him organize a benefit for his family – that’s the kind of person he is. We raised several thousand dollars that helped them significantly, and I know if I was ever in need, Lenny would be one of the first to step up and see what he could do.”

Borges said the response to requests for donations for the Alvarez fundraiser “are flooding in,” though more silent auction items would be welcomed.

“We’ve already received several large donations, and had offers to pay for the Bolado Park Pavilion rental spearheaded by Lil Casillas,” she said. “Suds [car wash] owners David and Kelly Dominguez have offered to cover the cost of printing the posters and flyers; and Round Table Pizza owners Mike and Alison Sicoli are printing the tickets for the benefit at no charge. John Klauer has also offered to provide security for the event at no cost.”

Friends said they are happy to help Alvarez because he is so selfless.

“Lenny has a heart of gold and would do anything for anyone,” said classmate Mary Casillas, a longtime friend of Alvarez’s and one of the organizers of the benefit. “He is a gentle man with a kind heart. Every time you see Lenny he has such a warm, wonderful smile.”

Local Realtor Jason Noble, who also met Alvarez in high school and is assisting with the benefit drive, said “we are gearing up to do the best we can for our friend and his family.”

Though organizers don’t want to give away too many details to Alvarez, he said he is touched at the outpouring of support.

“I’ve had friends call me that I haven’t talked to in years,” he said. “I’m just so overwhelmed.”

Lupe said the family wants to make the benefit “a happy thing; but it’s going to be emotional.”

Friends like Giovanni and Caren Gastello have helped the Alvarez family adjust to their new reality.

“They’ve done a lot for us,” Lupe said. “Gio calls every day to see how we’re doing.”

Alvarez said Gastello, who owns a local heating and air conditioning company, “will come over once a week and I’ll just go out with him on his runs checking his jobs. It gets me out of the house. There’s going to be a time when I’m going to be stuck in the house in a wheelchair. Right now, I get out as much as possible.”

Another friend, Willie Rogers, takes Alvarez to lunch or out on his boat on his days off. David Cardenas stops by the house every weekend to see if the family needs anything done.

Lupe, who runs an in-home daycare service, recently hired a full-time helper so that she can take Lenny to breakfast or to his therapy sessions. The couple is hoping to take a family trip to Disneyland this Christmas and has other vacation spots in mind as well.

“You take stuff for granted,” when you’re not sick, Alvarez said. “People say ‘we’ll do it next year.’ I don’t even know if next year is going to come.”

His condition is not stopping Alvarez from continuing his involvement with the SBHS football team’s “chain gang,” which holds the yardage and down markers on the sidelines of all home football games. While he cannot hold the markers himself anymore, Alvarez, who previously coached Pop Warner football and has been active with the Hollister Heat and Hollister Little League, is happy to be entering his 17th year as part of the team.

“In the beginning I was probably a little depressed [about the diagnosis],” Alvarez said. “But not being depressed, just going on with my life, is keeping me together. I just go on.”

For more information about the Bolado Park benefit for Alvarez, including ticket information or to donate to the silent auction, visit www.lennyalvarezbenefit.com or call Ivy Villegas Borges at 905-6581; or Jason Noble at 801-3210. Family and friends of Alvarez will also participate in the annual Walk to Defeat ALS at El Estero Park in Monterey on Saturday, Oct. 4. To join the team, “Lenny’s Biggest Fans,” visit https://secure2convio.net/also/site/TRR/Events/BlueprintWalk?fr_id+4840&pg=tfind.