Williams now active voice for MS studies

Host discusses experience with degenerative disease

April 10, 2002|By Evan Henerson | Evan Henerson,NEW YORK TIMES NEWS SERVICE

If I'm going to be in a wheelchair," says actor/talk show host Montel Williams, "I'm going to be faster than you. Guaranteed."

The boast certainly jibes, but not the image. Wheelchair? The 45-year-old actor/talk-show host sitting across the table in a Hollywood hotel suite is cheerful and hearty, a former U.S. Navy officer who is powerfully built and buffed from years of weight lifting and careful living. Judging by outward appearances, nothing about this man says infirmity. But with a disease like multiple sclerosis, that is a possibility.

By now, Williams has heard the same thing from many different people: "You don't look sick."

His response: "But I am.

"I do pain management most of the time, 24 hours a day, and when it's really at its worst, it can make it difficult for me to get around," says Williams. "But I get around. Either you succumb to it, or you figure out how to deal with it. I wasn't going to succumb to it."

In the summer of 1999, Williams, a motivational speaker whose autobiography is suitably titled Mountain, Get Out of My Way, revealed he had been diagnosed with MS, a degenerative neurological disease that - in its most severe form - can significantly limit a person's ability to function. The disease can cause blurred vision, loss of balance, poor coordination, slurred speech, tremors, paralysis and blindness.

Williams had not planned to go public with his illness, but after learning the story was about to break in the tabloids, he decided to do some spin control.

Where he began as a "reluctant cheerleader," Williams has turned into a passionate advocate. His foundation has raised thousands of dollars in research grants for the Nancy Davis Center Without Walls, the Karolinska Nobel Institute and the Foundation for Neurologic Diseases. He has devoted several segments of The Montel Williams Show to the disease and he has formed a partnership with the medical awareness organization Spotlight Health to keep the disease on the public's radar screen.

Williams' efforts on behalf of the disease haven't been entirely without controversy. Williams has clashed with the National Multiple Sclerosis Society, most centrally over how money should be spent. Where Williams wants funds to go exclusively to research, the NMSS devotes funds to quality-of-life concerns as well.

Dr. Randall Schapiro, who has conducted information chats with Williams as part of the Spotlight Health campaign, says that some of Williams' comments "to me sounded ridiculous at the time."

"He does not like the National MS Society, which is a very valid and wonderful organization," says Schapiro, founder and director of the Fairview MS Center and a clinical professor of neurology at the University of Minnesota. "I don't necessarily agree with the approach that he and some other people have taken to try to dilute the NMSS' approach."

Arney Rosenblat, a spokeswoman for the NMSS' national office, downplays the conflict. "Sometimes our focus is a bit different," she says, "but we're all on the same team, trying to make MS a footnote in history."

Williams expects to hear additional criticism over publicizing his course of treatment. His regimen includes a combination of traditional and holistic medicine, vitamins and a hormone replacement therapy that, he says "most doctors shun." He also takes one of the ABC drugs (Avonex, Betaseron and Copaxon), a brand-name medication.

"People are going to say, `Well, there you go backing some drug manufacturer.' No, I'm not. I'm backing making peoples lives better," says Williams. "If I can help 1 percent or 2 percent of the people who are suffering from this illness by telling them that I take this particular drug, then I'm helping them and I could care less what anybody thinks about it."

According to Schapiro, MS researchers have been greatly encouraged by the breakthroughs in the disease's treatment over the past decade. There are five medications approved by the U.S. Food and Drug Administration, including the just-approved Rebif, designed to treat major forms of MS. Scientists don't have a cure, but the treatment regimens help slow the disease's progression and make relapses less frequent.

With the medical breakthroughs have come increased visibility and awareness and, researchers say, a gradual dissipation of the stigma that an MS diagnosis automatically means a patient will spend the rest of his life incapacitated. From watching The West Wing's fictional President Jed Bartlet (played by Martin Sheen) continue to do his job despite having MS to seeing Williams looking healthy and productive five days a week, MS sufferers have reason to be hopeful, say advocates.

"Most of the people who have it function at extremely high levels," says Schapiro. "Out here in Minnesota, Sen. Paul Wellstone has just informed the populace that he has MS, and he's one of the most active senators in the United States Senate despite this."

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