Fighting ALS on his terms
Friends and family marvel at how Gene Pino, a veteran coach and administrator, lives life despite being diagnosed to have an incurable disease
The life expectancy window, he was told on that March day, was 2 to 5 years.
That was almost five years ago.
But Gene Pino is very much still here. Engaged with the elements in his life that give him pleasure. Family. Friends. Trips to the lake. His career.
And even in a fight he cannot win, he fights back.
“I wanted to go out and not die from ALS, but live,” Pino said.
If being diagnosed with amyotrophic lateral sclerosis has punctured Pino, or interrupted his zest to author his own script, then those psychological wounds remain supremely camouflaged.
This may or may not be his last Christmas. But Pino is, as best as he is able given his prognosis, dictating the terms.
“I can’t tell you how impressed I am with his inner strength,” said one of his best friends, Bill Duffey, the former boys basketball coach at St. Pius and who for eight years was Pino’s roommate. “I don’t know what happens when he closes the windows at night and shuts the doors, but he’s strong, he maintains his spirit, and he doesn’t let it get him down.”
At the end of this school year, Pino, a veteran coach and administrator, and currently an assistant director at the New Mexico Activities Association, will retire.
“I think it’s just time to step aside,” Pino said.
The 60-year-old native of Belen and three-sport athlete at Belen High School was recently presented as an inductee into the NMAA Hall of Fame. Pino has for 10 years served the NMAA, and although he works only part time these days — he gradually reduced his workload after being diagnosed — he remains a fixture, both inside and outside the NMAA hallways.
“His spirit and his mind are so powerful that ALS could take away his physical capabilities, but what he brings to the association and to the state of New Mexico is beyond words,” NMAA executive director Sally Marquez said. “I can’t even describe it.”
A decade ago, Pino bolted Albuquerque Public Schools to join Gary Tripp’s roster at the NMAA.
“I jumped at that,” Pino said. “I always wanted to work at the NMAA.”
By June, Pino, a former head boys basketball coach at Del Norte — just a fraction of his rèsumè — will be out of the education realm, save for some work with the NMAA Foundation. That’s a cause he cares about passionately, and doesn’t want to give it up even as he faces rapidly mounting physical challenges and limitations.
A mystery
Pino remembers the exact day. March 8, 2011. That was the first day of that year’s state basketball tournament.
What he thought would be a two-hour visit to University of New Mexico Hospital turned into a six-hour ordeal, ending with the delivery of his official diagnosis: a terminal disease with no known cure. It was thought it might be a pinched nerve, something that could be corrected surgically. Tests revealed something far more sinister.
In hindsight, Pino said, there were subtle signs that something was amiss, years before doctors had confirmation. For example, he would occasionally drop a pen for no reason.
When he was executive director of the APS Foundation, each Monday he would sign checks. He was noticing that his hands felt unusually weak, and wondered if he should ask for a rubber stamp.
“I thought I had carpel tunnel syndrome,” Pino said.
Arthritis, perhaps? That, said Pino’s wife Sadie, was also considered. But it was not that, either. “She had to come and get me because I couldn’t drive that day (I was diagnosed),” Gene said.
“I should have taken that day off,” Sadie said. She was an elementary school teacher at Reginald Chavez in Old Town, although she has since retired to care for her husband. She works now only as a substitute, primarily close to their Northeast Heights home.
Going back to March 2011, Pino, understandably, missed the first day of that state tournament. He was back at work the next day.
But, that single day was filled with some extremely hard hours.
“He and I went to the Range Cafe that night,” said longtime friend Joey Montaño, who has known Pino for over 35 years as they graduated together from the University of New Mexico. “We were in the parking lot, letting it all out, and we cried for 30 or 40 minutes. And we haven’t cried since. That guy has been an inspiration in terms of how he’s dealt with the disease.”
Pino has all but outlived that 2-5-year projection — 20 percent of ALS patients, it is estimated, survive beyond five years — though this hardly moves the needle with the people that know him and love him.
“I gotta tell you,” said La Cueva High boys basketball coach Frank Castillo, a close friend who has known Pino for over 30 years, “I think he’s probably one of the strongest people that I know. I don’t know how many people could cope with it the way he has.”
Physically, Pino is faring as well as could be expected. His legs, he said, remain relatively strong but are weakening. He can still communicate electronically, although he has lost most of the dexterity in his hands and can only use his left forefinger to bang out emails and texts. At night, he is unable to keep his head upright because the ALS has so weakened the muscles in his neck. So, he wears a neck brace. “The motor neurons in my muscles are dying,” he said. “But I’m very fortunate that my legs are still strong.”
The list of concessions has, inevitably, grown. Like replacing carpets with hardwood floors in their home, a nod to the wheelchair Gene inevitably will need. He struggles with zippers and buttons, tying shoes and putting on socks. Sadie helps with those. Eating food is an increasingly demanding assignment as well. It must be soft or in liquid form. Someday not far off, he’ll require a feeding tube.
For now, Italian food is popular cuisine. “And,” Sadie said with a laugh, “he sure loves desserts.”
Strength in numbers
At the heart of Pino’s tale is his support group. His friends clearly are rocks, but it starts and ends with Sadie, his wife of 29 years. The toll of ALS wears visibly in her face and audibly in her voice.
“I have my good days and bad days,” she said. But the two of them are determined to extract as much joy from this life as they can.
“If there’s life,” she said, “there’s hope. We have to be strong. None of us are promised tomorrow.”
It’s in that vein that the Pinos have planned an October trip to Hawaii to commemorate their 30th wedding anniversary. No one knows how Gene might be 10 months from now, but that’s almost beside the point. They have each other, and they have two adult children: Tim, 24, and Natalee, 27.
“The focus,” Sadie Pino said, “is to look at life half full, instead of half empty.”
In addition to his duties at the NMAA, Pino is active in raising money for, and awareness of, ALS. Monies raised help patients combat the disease. There are, best guess, only a few dozen confirmed ALS patients in New Mexico. The insidious disease, more commonly known as Lou Gehrig’s disease, annually affects two out of every 100,000 people.
Pino forges on, odds be damned.
“He just puts so much effort into it. It’s rewarding to see what he does,” Marquez said. “As the disease is carrying on, it hasn’t stopped him and his ability to work.”
Christmas Day
The best medical help Pino can get is a drug that he estimates will prolong his life, but by months only.
He would like to see a regional facility — following the lead of Boston and New Orleans — to house patients with incurable neurological diseases and aid them in their effort to live more independently. This describes Team Gleason House in Louisiana, named for the former New Orleans Saint, Steve Gleason, who also has ALS.
So, as he pours energy into raising money and awareness, Pino continues to circulate and participate. “I’m very thankful,” Pino said. “I almost kind of feel a little guilty. I’m still able to walk, able to talk, able to do things.”
“We’ve had a lot of blessings,” Sadie said.
True, Pino can’t ski or play golf any longer, but he and his wife cherish those drives in their motor home to Elephant Butte in the summer to enjoy what Gene describes as the lake’s warm, therapeutic waters. They attend Lobo football and basketball games, always tailgaiting for football. Gene gets out to watch high school hoops when he can. This is the definition of normalcy, inasmuch as that is possible.
And while the body may be withering, Pino’s intellect remains nimble.
“His mind is still sharp,” Castillo said, “and he still has a lot of things to offer. How wonderful that he’s able to still do things and be so positive while he’s doing them.”
Duffey fought back tears as he talked about his pal’s battle.
“Great guy,” he said. “Unbelievable. Strong, strong guy.”
As time passes, Pino’s dynamic will change. He and Sadie get that. Today they celebrate Christmas, and everyone hopes it won’t be their last. Sadie, asked if she’s done with her Christmas shopping, lowered her head.
“We just want to create happy memories,” she said. “Move away from more material things.”
Gene, ever smiling, said he’s a low maintenance, giftcard kind of a guy. Whatever struggles there have been or will be, this much can be said: He is dying. But he is living. “We all think we have it so tough,” Castillo said. “It’s nothing compared to what he’s going through. He’s my hero.”
Upon his death, Pino has already arranged for his brain and spinal cord to be donated to the ALS repository. The cure, sadly, will not materialize in his lifetime, but this gesture might help expedite one for the next generation.
“Whatever he says or whatever he does comes from that guy’s heart,” said Montaño. “This disease may be kicking him, but he’s got the healthiest heart in the world.”