DEALING WITH IT MONTEL WILLIAMS ON MS: 'I WASN'T GOING TO SUCCUMB'.

Byline: Evan Henerson Staff Writer

`If I'm going to be in a wheelchair,'' says 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 hardy, 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.''

Coming forward

In the summer of 1999, Williams, a motivational speaker whose autobiography is the 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. (Not to be confused with muscular dystrophy, the disease championed by Jerry Lewis, MS affects some 2.75 million people nationwide.)

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. On his talk show Friday (KCOP, Channel 13, at 4 p.m.), Williams will take another major step, detailing his treatment regimen as well as endorsing a specific medication - the effectiveness of which, he says, is one of the main reasons he is doing as well as he is.

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 his talk show, ``The Montel Williams Show,'' to the disease and he has partnered with the medical awareness organization Spotlight Health to keep the disease on the public's radar screen.

The Montel Williams MS Foundation Web site, www.montelms.org, and information hot line [phone], both launch Wednesday.

``I've seen people come up to him in restaurants and thank him for being a leader in this fight,'' says Jon Hermie, Spotlight Health's chief operating officer. ``For an MS sufferer, Montel is very vibrant. Not only does he have a lot of media access, he is considered to be a successful MS fighter. He's someone people can look at for hope and inspiration.''

Just trying to help

Williams' efforts haven't been entirely without controversy. He has clashed with the National Multiple Sclerosis Society, mostly 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 once he goes public on his show Friday about his course of treatment. His treatment 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 that he won't name until Friday's show.

``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 (not) 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.

Gaining understanding

With the medical breakthroughs has 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 as a cripple. From watching ``The West Wing's'' fictional President Jed Bartlet (played by Martin Sheen) continue to do his job despite having MS to seeing Montel 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.''

Williams is cautious about discussing information about his own battle with MS, carefully qualifying statements by saying that MS sufferers should consult their personal physicians before undertaking any course of treatment.

To detail his own symptoms, Williams says, might trivialize those of others who suffer more severely from the disease. Pain, he says, is a constant, particularly in his feet. His balance isn't always what it should be.

``I have some weakness on one side of my body; I have some spasticity. I work with a trainer very hard at doing some exercises that counterbalance the things going on in my body,'' he says. ``I sometimes can't find my feet in space. When I'm walking, I may lose my foot.''

Williams continues to work out heavily with weights, often using balance boards. Snowboarding, the success of which is so dependent upon a person's ability to maneuver his feet, has become a favorite sport as well. On the slopes, Williams has to force his brain to overcome the interrupted signals between the brain and the ankles. After a day of snowboarding, he'll walk better than he has in weeks.

When he's not globetrotting looking for snow or on business, Williams is traveling to ``guinea pig'' himself. He recently returned from the Karolinska Institute in Stockholm, where he submitted to a series of tests - including an extensive MRI scan - designed to give researchers a detailed portrait of an MS-affected brain.

``They had not been able to get anybody to sit in that machine for more than two hours. I did it 11 hours straight,'' says Williams. ``I am doing well, and doctors who see me are attributing it to the regimen I'm on. As we get more facts, I think it would be criminal for me to not at least talk about what I'm doing.

``But I also have to caveat that with the fact that we know as a fact things that work for me may not work for you if you have the illness. Period.''

Work against MS

What you can do to keep up the fight locally

Upcoming events to raise awareness of and benefit research into multiple sclerosis:

``Peace and Love to Erase MS,'' a dinner and celebrity fashion show with entertainment and auction to benefit the Nancy Davis Center Without Walls. May 10 at the Century Plaza Hotel in Century City. The event begins with cocktails and silent auction at 6:30 p.m.; dinner and entertainment - featuring Don Henley, Smokey Robinson, Donna Summer and Natalie Cole - is at 8 p.m. Tickets are $1,000 each. Tables are $10,000 to $75,000. Information: [phone].

The National Multiple Sclerosis Society sponsors several events including the MS Walk, the MS Challenge Walk and the MS 150 Bike Tour.

MS Walks, including 5k and/or 10k walks depending on location, will be held Saturday in Bakersfield, Lancaster, Hemet, Palm Desert, Redlands and Sunday at the Los Angeles Coliseum and in Upland. Registration begins at 7 a.m. and the walk begins at 9 a.m. in all cities on both days. Information: [phone] or visit www.msevents.com.

The MS Bike Challenge is a two-day cycling adventure from Fontana to Palm Springs May 4-5. Information: [phone] or visit www.msevents.com.

The three-day MS Challenge Walk takes place in Northern California June 21-23 from Pleasanton to San Francisco and in Southern California Sept. 20-22 from Carlsbad to downtown San Diego Participants are expected to raise $1,500 to $1,850 as well as pay an entry fee. Information: [phone] for Southern California, [phone] for Northern California.

CAPTION(S):

2 photos, 2 boxes

Photo:

(1 -- cover -- color) MS, GET OUT OF MY WAY

Talk-show host MOTEL WILLIAMS speaks candidly abou the biggest challenge of his life

(2) no caption (Montel Williams)

Evan Yee/Staff Photographer

Box:

(1) Work against MS

(2) MULTIPLE SCLEROSIS

SOURCE: The American Medical Association, Family Medical Guide, The Complete Family Health Encyclopedia, News in Motion

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