With unflagging humor, West Orange man battles Lou Gehrig’s disease

by Robert Wiener
NJJN Staff Writer

Back in 2001, while he was attending one of his daughter Jessica’s soccer games, Andy Decter was unable to hold onto a bottle of soda that someone passed him. He consulted with a neurologist and received the worst sort of diagnosis — he had amyotrophic lateral sclerosis.

ALS, or Lou Gehrig’s disease after the great New York Yankee who died from it in 1941, is an incurable illness that attacks the brain and spinal cord, causing a spreading paralysis and inevitable death. But hearing the news didn’t affect Andy Decter’s indomitable sense of humor.

“Thank God,” he told the doctor. “I was afraid I had cancer.”

Four years later, Andy Decter can no longer speak and is all but totally paralyzed. He lives in a West Orange apartment, tended to by a husband-and-wife team of caregivers.

“When he was first diagnosed, the doctors told him the prognosis is two to five years, so he’s closing in on what their prognosis was,” said his father, Philip, by phone from his home in Boca Raton, Fla.

Before he became ill at the age of 40, Andy and his father were partners in an insurance brokerage firm. Philip and Alice Decter aborted their retirement plans to care for their son.

“But at one point, he decided he wanted to be more independent and not live — as he put it — ‘with his mommy and his daddy,’ said Philip. “At the age of 45 he wanted more independence, and we decided to take him up on it.”

Although he is completely paralyzed except for his right foot, he can operate a computer using a gadget that is attached to a toe. The two men communicate daily by e-mail.

“It keeps him in touch with the world. He can go through the Internet and come up with new treatments out there — not just in this country but around the world,” said his father.

That determination, coupled with a sense of humor his father calls “wicked,” drives the younger Decter to seek cures not just for himself but for the 30,000 other Americans who have been stricken with ALS.

That quest led to Beijing last March, where he spent 33 days at a hospital for experimental treatments whose cost was not reimbursed by Medicaid.

“They drilled holes in his head and injected millions of stem cells. And nothing,” said Philip.

“I still cringe whenever I get near a Home Depot,” Andy joked in an e-mail. “I jump at just the thought of power tools.”

“It didn’t cure the ALS,” said his father. “It is possible that it may have extended his life, but we just don’t know that. We have not been given a date when he might pass on. It didn’t improve the quality of his life, not really. But at least he knew that he has tried everything.”

But along with such trials have come errors, noted the elder Decter.

“There are a lot of quacks out there, and we’ve been bitten by a couple of them.” One Texas doctor suggested that Andy may have been poisoned by the mercury in his dental fillings, so they were all replaced with porcelain — to no avail.

“It just shows you how far out we’ve gone with this thing,” said Philip. “It’s obsessive. Any time he hears of anything, the first thing he does is e-mail me about it, and I go chase it down.”

Andy’s “latest scheme,” said his father, is a chemotherapy program at the University of Virginia that “sounds hopeful.”

“He will not stop. He is relentless, and he is very, very sick. He is losing it,” said Philip.

Undaunted by disability

Together with his friends and family, Andy is working feverishly to raise funds for ALS research.

In New Jersey, they have sponsored golf tournaments at the Green Brook Country Club in North Caldwell and a benefit dinner at the Crystal Plaza catering hall in Livingston.

In Boca Raton, his parents stage events and sell raffle tickets to benefit the ALS Research Foundation of South Florida, a tax-exempt organization they established that has become the focal point of their fund-raising on behalf of people stricken with the disease.

Undaunted by advancing disability, Andy remains determined to enjoy life as much as possible. In July, he signed up with a company that runs trips for people in wheelchairs; he traveled to Yellowstone National Park, took a rafting trip on the Snake River, and went for a ride in a hot air balloon.

David Poznak, who grew up with Andy in Livingston, has remained his friend since they were children and then roommates after college.

“He was a great guy to be around,” said Poznak. “We would never sit around and do nothing. If we wanted to drive to the Hamptons for the night and party, we did it. We were very spontaneous. There was always action and there was always fun.”

Decades later, their relationship endures, and Poznak said he is moved by his friend’s resiliency.

“He has determination and courage, things that most people in his situation wouldn’t have. For a guy who was independent and real strong-hearted to be reduced to this — it’s horrible. To most people it is a humiliating way to survive. His mind is still there 100 percent despite his physical situation. He describes it as living in a glass coffin. It is a horrible, horrible, horrible disease, and I’m amazed that he still has an ounce of optimism left in him.”

Poznak said he visits Andy often.

“I am as strong as I can be but as soon as I get in the car to go home, to be honest with you, I cry my eyes out,” he said.

As a parent, Philip Decter describes his own life as “very difficult. There isn’t a day that goes by that we are not doing something. He wanted us to let him live his own life, and that’s what we have done. It is very hard to do that. He and I e-mail each other practically every day. I can’t talk to him on the phone anymore because I can’t understand him, but he is spectacular, he is an unbelievable example. He just never gives up.”

Andy Decter, who is divorced, has three children — Amanda, nine; Alex, 11; and Jessica, 13.

For those interested in supporting the ALS Research Foundation of South Florida, the Decters are asking that donations be sent to PO Box 880527, Boca Raton, Fla. 33488-0527.

Robert Wiener can be reached at rwiener@njjewishnews.com.

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