Kicking off the walk of their lives: Finding a cure for Lou Gehrig’s Disease motivates the mobile and immobile
Friday, March 28, 2008

By TANYA DROBNESS
of The Montclair Times

The first sign was a fall while walking down Michigan Avenue in Chicago.

She thought she tripped.

Four days later, she fell again. This time, it was while walking toward baggage claim in Newark Liberty International Airport.

About a year later, in 1998, Lucy Wax was diagnosed with amyotrophic lateral sclerosis (ALS), a fatal neuromuscular disease that generally gives its victims between two to five years to live after diagnosis.

Wax, 65, has made it for nine years. She is now confined to a wheelchair, but is able to go shopping, frequent the movie theater and use the computer with the gentle touch of a single finger.

“I look only at positive things,” Wax said during the New Jersey Walk to Defeat ALS Kick-Off Party last Wednesday in the Yogi Berra Museum & Learning Center on the Montclair State University campus. “If I could have a motto, it would be: Don’t waste time dwelling on the disease. Live life.”

As she has during the past several years, the Marlboro resident plans to attend the next Walk to Defeat ALS in Long Branch in May, one of traditionally five walk events throughout New Jersey and New York. This year, the first ALS walk in New York City will be held on May 17.

“They seem to be growing every year,” Lizanne Lodge said at the event. Lodge, a previous ALS walk chair, lost her father to ALS when he was 54.

The first Walk to Defeat ALS took place on Sept. 30, 2001, garnering $150,000. Last year’s five ALS walks brought in a combined $1.67 million.

Last week’s event recognized the efforts of several teams that each raised more than $1,000 last year. About 25 certificates were handed out to team leaders, accepting them in front of ALS patients who were able to attend.

“It’s very meaningful for families participating to come together,” said Dorine Gordon, president and chief executive officer of the ALS Association Greater New York Chapter, which held the event for more than 140 people. “They are not alone in the fight.”

During the walk kickoff, many residents signed letters urging United States legislators to pass a bill that would lead to the establishment of the first national ALS-patient registry.

“It’s really important to help answer a lot of questions about ALS,” Gordon said.

On October 16, 2007, the House of Representatives passed the ALS Registry Act that would establish the registry under the Centers for Disease Control and Prevention.

Entering the final stages of the legislative process, the bill is being considered by the United States Senate. So far, 71 senators have co-sponsored the bill, including Sens. Robert Menendez and Frank Lautenberg of New Jersey, who signed on last June.

“This event is an impressive example of a community coming together to raise money for life-saving research for those affected by ALS,” Lautenberg said. “I am proud to support a bill that would establish a national registry for ALS patients so doctors and researchers can understand how ALS develops and how we can treat it.”

The latest general theory about ALS, also coined Lou Gehrig’s Disease after the New York Yankees baseball legend died from the disease in 1941, is that there may be a component with an environmental trigger, Gordon said.

Dave Kaplan, a Montclair resident who is director of the Yogi Berra Museum, where the ALS walk kickoff is held each year, says the museum uses Gehrig as a focal point in its education programs. “The disease is named after Lou Gehrig, who was such an iconic figure, and the museum is a reminder to people that we pay tribute to heroes and great values, which certainly Lou Gehrig embodied.”

Every 90 minutes, someone dies from ALS, and there is no known cause, treatment, or cure.

ALS eventually robs its victims of the ability to speak and move, with loss of respiratory function a common cause of death. The disease can affect anyone, regardless of race, ethnicity or gender. About 5,600 people are diagnosed with ALS in the United States each year.

While it can be easy to get lost in the tragedy of a disease that is more like a death sentence, Wax rarely has a down day.

When she was first diagnosed, Wax and her husband, Jerry, along with their three grown children, visited a psychologist. Her family was crying. Wax was not.

“Dry up your tears,” she quickly told them. “We’re wasting time, and every day there might be a change in me. But it will go so slowly, you’ll never notice. We’ll grow with it together.”

For Wax, the first symptom was when she began to lose her balance. She also realized she had no strength in her arms and the symptoms became gradually worse.

At that point, she saw a neurologist, knowing an ALS diagnosis was possible. After a series of tests, it took nine months to diagnose her. “Not until you hear it, do you believe it,” Wax said.

“I felt, I can’t believe it’s happening to us. I was numb,” Wax recalled of her diagnosis. “I could handle it. But I had the weight of trying to make my family go on normally. I was more concerned about their reaction than my own,” she said of her immediate family, including her son, Adam, 29, and two daughters, Liz, 36, and Margret, 34.

She has lived to see the marriages of her three children, and made it to the births of all of her six grandchildren. She is planning to make it to the birth of her seventh, who is on the way.

“I was worried … I didn’t want them to rush their lives and get married quickly for my sake,” Wax said. “I was there in whatever capacity I could be, and it didn’t matter whether I walked in to their weddings or rolled into the delivery rooms, as long as I was there.

“They all pursued their dreams, and I lived to see it all. And I plan to see more.”

For more information about ALS, or to participate in the Walk to Defeat ALS, contact Courtney Bollman or Kristina Wertheimer at the ALS Association Greater New York Chapter at 212-619-1400 or 800-627-8857, or visit www.als-ny.org/.

Contact Tanya Drobness at drobness@montclairtimes.com.

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