In baseball, Lou Gehrig’s name remains synonymous with Hall of Fame-caliber performance and astonishing durability. But it was after his career — and life — ended that Gehrig achieved another kind of immortality: as the face, and namesake, of the terrible disease that struck him down.
It’s sobering to think that decades after his diagnosis of amyotrophic lateral sclerosis (ALS) in 1939, this disease remains as devastating and deadly for current patients as it did for Gehrig. As Phil Green, a former University of Washington football player who has lived with ALS since 2018, said in an interview this week, “If Lou Gehrig were diagnosed today, he would have pretty much the identical prognosis that he did 80 years ago. Just think about that. We put men on the moon and rovers on Mars, yet this disease still seems to baffle some of the smartest scientists in the world.”
Those scientists are still working hard on finding treatments that will hold ALS at abeyance, and ultimately for a cure of this progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord and is 100% fatal.
There have been promising breakthroughs in the past decade, but as the research continues, raising awareness for ALS is of paramount importance.
With that goal in mind, it was a long overdue but cosmically perfect decision for Major League Baseball to throw its heft behind a day honoring Gehrig, the famed “Iron Horse” of the Yankees who played in 2,130 consecutive games (the long-standing record until Cal Ripken Jr. surpassed it in 1995) before his skills mysteriously diminished.
Lou Gehrig Day will take place Wednesday around MLB, including at Seattle’s T-Mobile Park as the Mariners face the A’s. There are layers of significance to the June 2 date. That was when Gehrig became the Yankees’ starting first baseman in 1925, replacing Wally Pipp, and the day he died in 1941, about two years after he was diagnosed with ALS.
Significantly, this is not a one-off tribute. Lou Gehrig Day will become an annual commemoration, with Gehrig joining Jackie Robinson and Roberto Clemente as the only baseball players celebrated annually with dedicated, leaguewide days.
That decision by MLB, which came after a long and well-organized campaign from a committee of ALS advocates (including Green), is a cause of great joy within the ALS community at large, and those locally as well. The Evergreen Chapter of the ALS Association serves 700 people with ALS in Washington, Idaho, Montana and Alaska.
The hope is that this turns into as much of a boost for ALS awareness and fundraising as the Ice Bucket Challenge, which became an internet sensation in 2014 and helped raise about $115 million in donations to the ALS Association.
“It’s a natural celebration, because as soon as you talk about ALS, people will stop you and say, ‘You mean Lou Gehrig’s Disease,’ ” said Pauline Proulx, executive director of the ALS Association’s Evergreen Chapter. “So there was always this tie, this connection.”
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The links between baseball and ALS go beyond Gehrig and Jim “Catfish” Hunter, another Hall of Famer who died of the disease. Pete Frates, who became the public face of the Ice Bucket Challenge after being diagnosed with ALS in 2012 at age 27, was a baseball star at Boston College. He was serving as Director of Baseball Operations at the school when he befriended a freshman pitcher named Justin Dunn. Now a Mariners starter, Dunn is heavily involved in ALS causes. He dedicates his efforts to Frates, who died in 2019 at age 34.
Dunn’s current teammate, catcher Jacob Nottingham, was deeply touched by ALS, losing a grandmother and aunt to the disease as well as other family members. In 2018, he enlisted tattoo artist Wes Hogan of Artistic Element in Yucaipa, California, to make a large tattoo on his upper left arm of his grandmother, Nancy Nottingham, and his aunt, Laurie Nottingham, with Lou Gehrig depicted above them looking down.
“It was something I’ve always wanted to do for my dad,” Nottingham said. “I found the right tattoo artist, and he came up with the idea of having my aunt and my grandma walking up the stairway to heaven to Lou Gehrig. I couldn’t be happier with the art on my arm. I know my dad loved it, and I love looking at it every day.”
Lou Gehrig Day is extremely meaningful to Nottingham, and he’s grateful he’ll be around for it after spending much of the season in limbo between the Mariners and Brewers.
“It’s a big day,” he said. “My dad lost his mom and his sister to (ALS). I know it’s really special to him. It hits home for our family. We lost a couple more aunts and an uncle. It’s a crazy disease in what it does to you, so anything we can do to spread the awareness to help this means a lot to me and my family and a lot of people across the world.”
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The daily drama of baseball can become a welcome beacon of normalcy for ALS patients as their symptoms progress. ALS gradually prohibits the ability to speak, swallow, walk, grasp objects, move and eventually breathe. The average life expectancy of an ALS patient is two to five years. It tends to be an extremely isolating disease, and baseball can be savored while mired at home.
Just ask Jean Gronewald of Enumclaw, whose husband, Ken, was diagnosed with ALS in 2009, one year after he retired as an Alaska Airlines pilot. They were both avid Mariners fans, and as they dealt with the progressive worsening of his ALS symptoms, Mariners baseball became a lifeline. Ken Gronewald lost his speech within a year. When the muscles in his neck weakened precipitously, he moved to a wheelchair. Eventually, Ken needed a feeding tube. Fatigue, a massive problem for ALS patients, became debilitating.
“Having that fatigue issue the last two years, he was pretty isolated at home,” Jean Gronewald said. “We had always been Mariners fans, but those last two years during baseball season, those Mariners announcers became our family.”
That included Dave Niehaus, who died in 2010, as well as Rick Rizzs, Mike Blowers, Dan Wilson and others who were on the call. One special memory together was watching Felix Hernandez’s perfect game on Aug. 15, 2012.
“They are storytellers,” Gronewald said of the announcers. “We had hours and hours at home, and a lot of time when he couldn’t really do anything. And it’s really hard, especially for people like him that are active. And so those Mariners games filled our evenings, those six months of the year.
“For us, it was calming. It was like having company because we couldn’t have very much.”
Ken Gronewald died on July 24, 2013, at age 65. After becoming immersed in the disease, Jean started volunteering for the Evergreen chapter of the ALS Association, where she is now board chairperson. Her primary role is advocacy, including an annual trip to Washington, D.C., for legislative visits.
“I didn’t plan on doing this in my 70s,” she said. “When he retired, I thought we were going to travel together and do all this stuff. And then not so much. … It has been an absolutely wonderful experience, kind of like having a second vocation.”
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Valerie O’Mara will throw out the ceremonial first pitch Wednesday, which is fitting because she and her husband were Mariners season-ticket holders for more than 30 years. She happily worked in what she called her “dream job for a lifetime” as a physician assistant in cardiothoracic surgery and director of the Overlake Hospital-Kaiser Permanente Valve Clinic.
But O’Mara was heartbreakingly forced to retire after being diagnosed with ALS in March 2017. Now she’s wheelchair-bound and dealing with a decline in motor skills, though her voice, and attitude, remain vibrant.
“When you’re inside that curve of a two- to five-year life expectancy, and you’re already at three-plus years, it kind of stares you in the face,” she said. “ALS sort of takes your life and turns it upside down. And you have to figure out how to go ahead.”
O’Mara, a board member of the Evergreen Chapter of the ALS Association, faces her plight with remarkable strength, courage and optimism. In researching this column, I discovered that to be a common trait of ALS patients.
“I have come to the conclusion in the 10 years that I’ve been involved in this that being a nice person, a really good person, is a tremendous risk factor for ALS,” Gronewald said. “They’re just very remarkably brave and good people who get ALS. I don’t know why.”
Dr. Ileana Howard works extensively with ALS patients as a physical medicine and rehabilitation physician and co-director of the ALS Center of Excellence, which is at the Seattle campus of the VA Puget Sound Health Care System. She, too, marvels over the selfless response of those afflicted with the disease.
“ALS is a frustrating diagnosis, because it seems to impact some of the most productive and most benevolent members of our society,” she said.
Researchers have long been baffled by the fact that veterans are twice as likely to get ALS. That holds true regardless of whether they served in peacetime or war, and doesn’t vary by branch of service. There are several theories for why this is so, but no definitive conclusions.
It’s one of the many mysteries of ALS that researchers are trying to unravel. Yet Dr. Howard is encouraged by the progress being seen.
“I think we’re living in one of the most exciting times in terms of specific treatments that could be effective to slow progression of ALS,” she said.
She points to huge recent breakthroughs in the treatment of spinal muscular atrophy in children, a motor neutron disease. For ALS, she said, there are treatments that can significantly prolong life expectancy.
“I feel really confident that in our lifetime, we will see effective treatment or a cure for ALS,” she said. “ … We have the tools now, and we are at the point with the science that we’re poised to make some incredible breakthroughs.”
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In the meantime, advocates such as Phil Green, 51, who has lived with ALS for three years, will continue to fight tirelessly for patients for as long as he can. Green is particularly concerned with improving the quality of life for those with ALS, making care more affordable, and facilitating their ability to partake in clinical trials and continue the treatment after the trial ends.
“There’s a whole spectrum of ALS that people can only see part of,” Green said. “Because once things get really difficult, people don’t go out. So you never see the really tough times that people have to deal with when they have ALS. We want to introduce more people to this disease so they understand how it slowly and progressively takes away functionality that most people take for granted.”
And fighting that progression can be prohibitively expensive. While veterans are benefitted by the fact that ALS is considered a service-connected disability because of their higher prevalence of the disease, the average out-of-pocket cost for the care of a person with ALS is $250,000.
Too often, Green said, “people (must) choose to stay alive, which can bankrupt your family, or pass away and not leave your loved ones in financial ruin. We shouldn’t have to make those kinds of decisions.”
With more awareness of the devastation of ALS and the attendant costs, “there would be more of an outcry that this isn’t right and we need to change that. We are screaming that every day. But our voices are only so loud. I believe that Lou Gehrig Day will be a megaphone for us to help our voices reach more people so they can get behind our causes and demand change.”
Green, now confined to a wheelchair, traces his grit and perseverance to his days as a walk-on kicker and eventually a backup safety on the Washington football team that won the shared the national title in 1991 and won the Rose Bowl in 1992. Green said the highlight of his Husky career was an interception in the 1992 spring game. But the lessons he learned lasted a lifetime.
“Me being a walk-on having to fight my way into positions and be recognized, I’m a fighter,” he said. “In my battle with ALS, I’m going to fight, and it’s going to be relentless. I think I’m able to carry a lot of what I learned from Coach (Don) James and those days into what I’m doing now.”
It’s reminiscent of O’Mara’s attitude. When she was diagnosed with ALS, she said to one of the cardiologists she worked with, “I’ve always envisioned myself to be a bad-ass. I’m afraid this is going to change that.”
The doctor waved a finger in her face and assured O’Mara she would always be a bad-ass. And that mindset has been evident as she fights the disease which she says, “pulls out the raw emotion in everyone.”
O’Mara believes a quote by Maya Angelou sums her up: “I come as one, but stand as 10,000.”
On Wednesday, around the major leagues, tens of thousands will be standing for Lou Gehrig, and for all the bad-asses who bravely cope with the horrific disease that bears his name.
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