Lou Gehrig an inspiration for those diagnosed with ALS

Long Islanders Andre Williams and Chris Pendergast consider themselves lucky. That word is the mantra handed down -- nearly three-quarters of a century after his death -- by Yankees great Lou Gehrig, whose battle with amyotrophic lateral sclerosis has inspired a legion of those afflicted with the disease.

Research on ALS -- a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord -- has not resulted in a cure, but there remains a wellspring of hope among its victims.

There are 30,000 Americans with the illness, according to the ALS Association Greater New York Chapter. An estimated 150 are on Long Island.

Williams, 54, who worked in the plumbing trade after his service in the U.S. Army, was diagnosed with ALS in 2007. He said he was dropping tools on the job and had an unsteady gait.

Williams remembers the exact words from the doctor. " 'We believe you have motor neuron disease.' They didn't say ALS,'' Williams said from his home in Hempstead. "He said, 'My friend, go home and live your life. You have a very short time to live, about a year.' My heart dropped to the ground.''

Williams still is able to speak with the help of a ventilator. "It is feeding air into my lungs and into my stomach so it helps me echo the voice out of my body,'' he said.

The life expectancy for ALS patients is two to five years. Williams does not live his life on statistics. He travels to ALS forums from Washington to Florida and will be at Yankee Stadium on Wednesday when the Yankees remember Lou Gehrig. All of Major League Baseball will have a first baseman from each team read a portion of Gehrig's farewell speech from July 4, 1939.

"Lou Gehrig inspired me. Not only was he a great baseball player and a strong man of mind, he was not ashamed to speak of his illness,'' Williams said. "His willpower in strength alone with his family and friends gave great encouragement for me and my family to help us understand that life is not over until God says it's over.

"Even though today there is no cure, he encouraged me to never give up by the simple words he said: 'I am the luckiest man' in the world, which means to me even though I'm terminally ill, I'm still thankful for the way I lived my life. I would not have changed it for the world.''

Antoinette Williams said her husband's biggest fear was that he would not live to see the birth of his grandchildren. "He didn't think he'd see any of the grands,'' she said. "Now we have five grands, so God allowed him to see all five.''

Pendergast, 65, a resident of Miller Place, was an elementary school teacher in the Northport district when he was diagnosed with ALS in 1993. His wife, Christine, said she feels her husband is lucky.

"Why? Because he's been given such a long longevity,'' she said. "It has changed priorities. It has made time more precious; it has made the simplest of things be given so much more importance. Sometimes you don't get to realize how lucky we are in spite of this illness.''

Pendergast became an activist, forming the organization "Ride for Life,'' which he initiated by riding his electric wheelchair from Yankee Stadium to Washington -- about 250 miles -- in 1998 to raise awareness for the disease.

The ALS Center at Stony Brook University Medical Center is now the Christopher Pendergast ALS Center of Excellence, for which he has helped raise millions.

Pendergast communicates largely by email. His words are powerful and emotional and hark back to Gehrig.

"When I saw his speech again as an ALS patient, my only thought was people have no idea of what it took for him to say those words,'' he wrote. "The overriding emotion which most patients have early on [and some never shake] is unbridled fear. Gehrig's true greatness does not appear until one walks in his shoes, or perhaps more aptly, spikes. I was inspired to dream one day I could feel the same. It became a compass with which I navigated my journey with ALS. Luckily, I was not forced to condense my life in a scant 23 months as he did. It has taken me years to achieve parity. Today, I count my blessings as Gehrig did reciting a litany of baseball references, and consider myself a lucky man.''

Dr. Rahman Pourmand, professor of neurology at Stony Brook University Hospital, said the ALS diagnosis is the most difficult one to deliver.

"I think this is the worst news a doctor can give to a patient, in my opinion,'' Pourmand said. "It's worse than anything in medicine. There is no cause, no treatment. Some other diseases -- even cancer you can treat, multiple sclerosis you can treat, epilepsy you can treat . . . We're always dealing with that, how to approach and break bad news to patients.''

Gehrig remains a symbol of hope to those affected by ALS.

"I think when he said 'lucky,' he meant that he had a chance to live his life to the fullest,'' Williams said. "He was able to have his family. I say to myself every day I didn't regret a day of life that I live. And that's what I think Lou Gehrig meant. That he had a family and got to do what he wanted to do.''