The New York Yankees' Lou Gehrig wipes away a tear while speaking during a tribute at Yankee Stadium in New York on July 4, 1939. / Murray Becker, AP

The world was stunned 75 years ago Friday when baseball great Lou Gehrig announced that he had been diagnosed with a lethal disease but was still "the luckiest man on the face of the Earth."

He was grateful for his career, his coaches and, most of all, his family, he said in a Yankee Stadium speech that brought to public consciousness a disease called amyotrophic lateral sclerosis, or ALS - still often called Lou Gehrig's disease.

"I might have been given a bad break, but I've got an awful lot to live for," the "Pride of the Yankees" said slowly and calmly to 62,000 fans.

The course of Gehrig's disease was typical. Diagnosed a few weeks after ending his 2,130-game playing streak, he would live only two more years.

Treatments for ALS, which damages nerve cells in the brain and spinal cord leading to progressive weakness, didn't change much for seven decades after Gehrig's death.

But over the past five years, scientific research has finally begun to pay off for patients.

"People are living longer with ALS today than they were a couple of years ago, because the care is better," says Merit Cudkowicz, chairwoman of neurology at Massachusetts General Hospital in Boston and a professor at Harvard Medical School.

By paying more attention to patients' quality of life, researchers have learned new ways to control pain, encourage exercise and support breathing, she says. One research trial showed that patients could live longer simply by maintaining their normal weight.

"Patients used to be told there's nothing to do and go home," says Cudkowicz, who treats about 200 ALS patients a year. "It's completely different now."

She also encourages her patients to participate in one of the dozens of clinical trials underway to better understand and treat ALS. More than 30 genes connected to ALS have been identified, and several drug companies have targeted and tested possible therapies.

Kevin Eggan, a stem cell researcher at Harvard, discovered a promising treatment by using stem cells from patients who died of ALS to re-create the disease in a dish. He then tested thousands of compounds on those cells to find one that could reverse electrical signaling problems characteristic of the ALS cells. That drug is scheduled for testing in patients later this year.

All of this research is encouraging to people in the field.

"It's a very difficult disease, but I'm very hopeful," says Lucie Bruijn, a pharmacologist and chief scientist with the ALS Association. "There is such talent thinking about this challenge."

So far, though, more than a dozen drug studies have been failures, and nothing has been found to truly change the course of ALS. The disease has proved far more complex than researchers originally realized.

Doug Williams, head of research and development at the Cambridge, Mass., biotechnology company Biogen Idec, says that after repeated failures, his company decided to go back to the lab to see if they could better understand ALS and what it does to the nerve cells that control muscles.

"What we're trying to do is really understand what are the critical defects that lead to the death of motor neurons," he says. "If you think about ALS as a movie with a bad ending, we're starting at the end of the movie and running it backward, trying to understand what's happening in each frame."

Christine Wickmark hopes it doesn't take too long. At 56, the Idaho mother of three and former Air Force drill sergeant says she's "too damn young to get out of here anytime fast."

She'll sign up for any clinical trial that wants her, she says, in hopes of changing the course of her ALS. So far, her legs are holding up fine - she can still volunteer at the senior center, dancing disco with people a generation older, and enjoy her 75 pigs, including 600-pound Charlie, who she swears danced with her recently to Stayin' Alive.

But her hand control is limited, her voice is harder to understand, and she's often congested. She's tried acupuncture, vitamins and peppermint oil for the congestion.

"I'll try anything," she says. "I just want to stop this thing."


In amyotrophic lateral sclerosis, or ALS, nerve cells in the brain and body progressively die, disrupting signals from the brain to the muscles.

Usually, the first symptoms of ALS are signs of weakness, such as falls, or sudden loss of strength or speed. Slurred speech is also common.

The disease generally progresses very quickly, with most people dying two to five years after diagnosis. If someone is diagnosed late, death can come much sooner.

ALS manifests itself differently in different people, starting in different parts of the body and progressing at different paces. A few people, such as world-renowned scientist Stephen Hawking, can have the disease for decades. Such different paths make it difficult to tell whether a drug is actually helping slow a patient's course.

There are no treatments that profoundly change the course of the disease, but recent research has shown that patients who can maintain their pre-diagnosis weight live longer than those who lose weight. Exercise and breathing support can also be helpful.

Copyright 2015USAToday

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