Jules R. Lodish; Doctor Showed Will to Live as He Battled With ALS

By Joe Holley
Washington Post Staff Writer
Thursday, July 31, 2008; Page B07

Jules Roy Lodish had been told he had only a couple of years to live. But he persevered for 15 years.


For many years during his busy career as a doctor, Jules Roy Lodish hardly had time to stop for death, although as an oncologist and hematologist, he was certainly aware of its presence.

Earlier in his career, he had focused on end-of-life issues and had created a nationally recognized hospice program for the terminally ill while serving as an assistant professor at the University of Wisconsin's medical school.

Death became a more familiar presence, albeit a lingering one, when he received a diagnosis of amyotrophic lateral sclerosis, also known as Lou Gehrig's disease. Well aware of the cruel and inexorable progress of the disease, he had to decide whether to live -- and why.

He answered in the affirmative for nearly 15 years, until he died July 14 of complications from the illness at his home in Bethesda. He was 63.

Dr. Lodish was born in Cleveland. He received an undergraduate degree in government from Harvard University in 1967 and his medical degree from Case Western Reserve University School of Medicine, where he was president of the Class of 1971 and recipient of the 1969 Roche Award for excellence in clinical medicine.

He completed an internship and residency at Beth Israel Hospital in Boston before moving in 1973 to Bethesda, where he served as a fellow and staff physician at the National Cancer Institute.

After teaching in Milwaukee from 1977 to 1984, he returned to Bethesda and joined a private practice that had offices in Olney and Rockville.

His first personal encounter with ALS came after he fell on ice in late 1993. He thought little of the incident, but in the ensuing months, he experienced hip pain and a lingering limp. When he had trouble turning the keys in his car ignition, despite trying with both hands, he suspected he might have ALS. The diagnosis came in May 1994.

In January 1996, when he could no longer breathe on his own, he had to decide whether he wanted a permanent breathing tube, which would require a tracheotomy. At first he said no, as do many ALS patients, but he changed his mind the next morning.

"He didn't want to leave yet," his wife told The Washington Post in 2000.

After five months in the hospital, he went home and established an exacting routine designed to allow him to live as long and as fully as he could. The routine included a 35-page manual for his nurses that laid out every procedure that had to be performed each day, the maintenance of every piece of equipment and the sterile techniques he required.

When he could no longer eat, he did the research that resulted in the recipe for the nutrient blend that flowed down his feeding tube. He was Jewish and ensured the ingredients were kosher.

His days were full. He stayed deeply involved with the swirling, busy lives of his wife and children. He read William Faulkner novels and other works he never had time for during his busy career. He also consulted informally with ALS patients and their families on how to organize their care and how to use the communication devices he had mastered.

He told the New York Times in 2004 that his determination to live came, in part, from his experience treating cancer patients, who he said often felt that their diagnosis was a death sentence.

"I spent my career getting people to live with their illnesses until they died," he said, "if they weren't cured."

Humor was a part of his caring regimen as physician and patient -- whether it was wearing big, impossibly ugly bow ties his wife made to entertain his patients during chemotherapy or to laugh in the face of his impending demise.

He was a better dancer in his wheelchair, he said, than when he could walk.

A decade after being told that he had only a couple of years to live, Dr. Lodish sent the e-mail that announced the birth of his first grandchild. Nearly 15 years after receiving his diagnosis, he helped celebrate the first birthday of his second grandson.

"I still look forward to every day," he told the Times in 2004.

Survivors include his wife of 39 years, Carolyn Wieder Lodish of Bethesda; three children, Elizabeth Lester of Rockville, Mark Lodish of Chappaqua, N.Y., and Emily Lodish of Phnom Penh, Cambodia; his mother, Naoma Lodish of Pembroke Park, Fla.; two brothers; four sisters; and two grandsons.

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