ALS is a progressive illness that attacks the nerve cells responsible for controlling voluntary muscles. Patients lose their strength and ability to move their legs, arms and body. Eventually, when muscles in the diaphragm and chest wall fail, patients need ventilation to breathe.
Most people with ALS die from respiratory failure, usually within three to five years. About 10 percent of patients survive for 10 years or more.
Approximately 30,000 Americans have ALS. It is not known what causes the disease, and so far there is no cure.
A Long Island native, Pendergast knew what to expect when he received the diagnosis. “I knew that I would be dead in 2-3 years,” he said. “I would go from being a robust, active man to a progressively paralyzed man.” He prepared for the worst, made peace with God and anyone he may have ever offended.
The progression of his disease, though, was very slow. “I realized that my doctor’s plan and God’s plan were different,” he said. A spiritual man, Pendergast decided to make use of his extra time. “After the realization that I was not going to succumb, I made a resolution to devote time to raise money and awareness,” he said.
To that end, he has achieved a huge amount. In 1997, recognizing that little was being done to raise money for research, Pendergast came up with the idea of a wheelchair ride.
He called it “Ride for Life” and focused on how the ride could raise public awareness for ALS and raise money to research a cure. Ride for Life Inc. has become a not-for-profit corporation run by ALS patients and caregivers. Its mission is to support patients and provide them with the latest news and information.
Ride for Life’s inaugural year took them to Washington, a 350-mile journey, during which they were met by then President Bill Clinton.
On May 10, this year’s ride will begin at the tip of Long Island, Montauk Point, and will progress across the Brooklyn Bridge into Manhattan. The 16-mile trek is expected to take nine days.
Pendergast described how he takes part. “My arms are paralyzed and legs so weak that I can’t walk, but I have some movement in my wrists and hands,” he said. “With a flick of a finger, I can control the power chair.”
It may sound exhausting, but Pendergast insists that the greatest strain is psychological. “The training is mental as the disease does not respond to exercise,” he said. “You must propel yourself on with determination.”
The dozen participants move at about two and a half miles per hour, accompanied by the police. The nine-day event will finish up with a ceremony at a synagogue. “It is an ecumenical service, open to everyone,” Pengergast said.
The Ride for Life has earned $600,000 since its inception for ALS research and patient services. In 2002, it raised $115,000. In addition to the ride, Pendergast has been devoting his time to another form of raising awareness. An elementary school teacher, he retired last February after 33 years. It was a heartbreaking decision but one that he couldn’t afford to ignore as the retirement package made it financially worthwhile. Instead, Prendegast now contents himself with frequent trips to schools where he conducts special lectures. “I developed a program called ‘Meeting the Challenge of Life,’ a 45-minute talk tailored for teenagers,” he said.
He starts off by telling the story of Lou Gehrig, the beloved Yankees baseball player who was diagnosed with ALS in the 1930s. “I tell them about his character, grace and dignity, values sadly lacking for young people to model today,” he said.
He then talks about the disease itself and makes no attempts to shield his audience from its more distressing aspects. “It is graphic and hard-hitting,” Pendergast said of his talk. “It is one of the most fearful subjects and that is why I do it. I tell them that I am going to die and there is not a thing I can do about it.”
Pendergast finds the lectures exhilarating rather than exhausting and said that the teenagers find it very helpful. “Often, their grandparents are dying and this is a chance for them to talk and ask questions about illness and death,” he said. A consummate teacher, he sees these sessions as classes. “I still consider this teaching, just a different set of lessons,” he said.
His wife, Christine, and their two children have been supporting him all the way. His 18-year-old son has gone with him on many school talks and his 26-year-old daughter has accompanied him on the charity rides.
However, it is difficult for them. “My family sees me as a very public figure,” Pendergast said. “The public side is only half, though. The father side of me is harder to accept. They want me to do the same things as other dads do.”
Recently, the family suffered a setback when a friend and fellow ALS sufferer died. Michael Beier was 39 years old and his death provoked a lot of thought about the future. “My wife became so frustrated in her grief,” Pendergast said. “She felt that the ride was a waste of time, that there had been no progress and wanted to give up. I knew it was the anguish.”
Pendergast and his wife made a trip to Ireland a few years ago. “Christine still has a lot of relatives there and I had decided that I wanted to go there before I died,” he said. He was still mobile then and so the family rented a car and chose the smallest roads and quietest routes they could.
“We didn’t want to be immersed in tourists, so we avoided the Ring of Kerry and went to the Aran Islands,” he said. While there, Pendergast bought some parchment paper and made tombstone rubbings with charcoal. They remain some of his most treasured possessions.
The trip also inspired some spiritual thought. “I went to a healing Mass in Galway. I realized that if people could spend one day in heaven and then come back to earth, they would be so happy that their loved one has gone to such a happy place,” he said.
For more information, see www.rideforlife.com.