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The West Wing' lauded for accurately portraying MS story line

Wednesday, May 16, 2001

By Barbara Vancheri, Post-Gazette Staff Writer

Every now and then, prime-time television is granted the rare opportunity to teach, as well as touch, viewers.

Martin Sheen: His character, President Josiah Bartlet, has a new crisis. (NBC photo)

It happened when Murphy Brown developed breast cancer. When Alan Alda did a guest turn on "ER" as a physician finally acknowledging his Alzheimer's. And now, on "The West Wing," as President Bartlet belatedly reveals his diagnosis of multiple sclerosis to his White House colleagues, the media and the nation.

It's been a meaty, made-for-Emmy story line for actor Martin Sheen, who plays Josiah Bartlet, and a public-service opportunity for the National Multiple Sclerosis Society and its local chapters.

Although Vivian Frommer hasn't had the time to watch every episode of the NBC drama, she says, "I've cleared the decks" for tonight's season finale. Frommer is director of chapter communications for the association, based in New York.

She cares for a family member in the evening, so she says, "I watch it as I whiz through the room. Everybody here watches it."

And how would they rate the writers? "I think they're doing a good job. They're trying to be accurate. I know they've come to us for information."

MS is a chronic, often disabling disease that randomly attacks the central nervous system (brain and spinal cord). The progress, severity and specific symptoms cannot be predicted; symptoms can range from tingling and numbness to paralysis and blindness.

The national organization estimates there are at least 330,000 Americans with MS, with 200 people diagnosed every week. Twice as many women as men have MS, and symptoms occur most often between the ages of 20 and 40.

Sandra Bettor, the 48-year-old director of customer relations for Highmark Inc., would love to see the "West Wing" writers send this message: A person with MS can hold any job, including president of the United States. "And there is no reason why people should be treated differently or passed over for any consideration of a position due to their disability."

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Bettor, who lives and works Downtown, is more than an average "West Wing" fan. She was diagnosed with MS 11 years ago, although she says she was misdiagnosed a decade before that.

"I think this is a perfect opportunity to educate the public about the disease and let them know that people with multiple sclerosis experience many, many different symptoms and each individual has a different case and different symptoms. However, this does not stop those people from being able to perform their tasks or job any less than a person without MS."

Bettor says this might be a good chance to show one of the worst symptoms of MS: extreme fatigue. "You just feel exhausted constantly, and this gives the opportunity for people to learn about the disease and see the different things that can happen," such as fatigue, hearing or vision problems and labile or changeable emotions.

She, like Bartlet's character, has relapsing-remitting MS. It's characterized by clearly defined, acute attacks with full or partial recovery and no disease progression between attacks.

"West Wing" creator Aaron Sorkin wasn't trying to make a statement about living with MS when he gave it to the president. He envisioned Bartlet in bed watching a soap opera, "and I had to figure out how he got there, and I didn't want it to just be the flu." He also wanted to tap into the first lady's medical expertise, and MS allowed the series to do both.

No one expects the writers to eliminate Sheen's character, but if the fictitious leader were to retreat from public life, that would be a mistake.

"Keeping my mind active, my body active and staying involved in the community is the best medicine for me and anyone with a chronic disease," says Bettor, who uses a walking stick to get around and can suffer from migraines along with pain in her arms, legs and sometimes her back.

Bartlet's decision on whether to seek re-election will be a pivotal teaching point, Bettor suggests.

"Obviously he's going to run, because there ain't going to be a show without Martin Sheen. But I think this is going to be wonderful. It will continue to show the general population ... that people can go on and hold powerful positions and hold jobs that are stressful -- even though stress exacerbates the condition."

And it will let the president know who his friends and enemies are, and what people are saying about him.

Ordinary forgetfulness or clumsiness may be blown out of proportion, as can someone's state of health, once the news is churned through the distortion of the gossip mill. "It's amazing to hear how sick I am," Bettor jokes.

The Highmark executive, unlike the made-in-Hollywood president, shared her diagnosis with her workplace, which was recently saluted as a national employer of the year by the MS society. It has made sure she has a separate thermostat for her office with adequate air conditioning (to combat heat and humidity) and a laptop so she can work at home if necessary.

"I never saw my illness as an impediment. I saw it as something I had to deal with. One has to play the cards one's dealt."

Although famous, real Americans such as comedian Richard Pryor, beach-blanket queen Annette Funicello, talk-show host Montel Williams and actor David L. Lander (Squiggy on "Laverne & Shirley") have made their MS public, it was a shocker when the "West Wing" writers slipped it into Bartlet's background. And he wouldn't be alone in keeping it a secret.

"He hid his MS, but you are under no obligation to disclose MS or any health matter to an employer," Frommer says from New York. Employees must be forthcoming about being able to perform a job, however.

Four out of 10 people with MS said they had lied or failed to disclose their diagnosis to family, friends or colleagues because they feared the consequences, a new Harris poll found. The study, released at the annual meeting of the American Academy of Neurology, also found that 36 percent said their diagnosis has had a negative impact on their personal relationships.

While Bartlet may provide a good primer on MS, it's hard to create a typical case, experts agree.

"They used to say it's the mystery disease," Frommer says. "It exhibits so many varied symptoms that it's really difficult. He has no overt symptoms at this point, and he's on one of the injectable drugs" that represent some of the best treatments available. "I'm glad he's on one of these drugs and doing so well."

Since 1993, three medications have been approved by the Food and Drug Administration for relapsing forms of MS: Betaserona, Copaxonea and Avonexa.

As you can read on the association's Web site at www.nmss.org, those medications help to lessen the frequency and severity of MS attacks and reduce the accumulation of lesions in the brain. One has slowed the progression of disability.

The Allegheny District Chapter of the NMSS says there are about 2,000 people with MS in Allegheny County and 4,600 in the 23 nearby counties. The Pittsburgh-based office funds research, provides information, referrals and support to patients and their families and has a Web site at www.nmss-pgh.org.Among its services is an educational seminar for the newly diagnosed. "The second night of that series is all about employment. One of the first thoughts that goes through a person's head is 'Am I going to be able to continue to work?' We try to address those fears up front," says program director Anne Mageras in Pittsburgh.

"It's the most common disease of the central nervous system of young adults. Most are diagnosed between 20 and 40 years old. That's why most people are working when they're diagnosed. They're just starting with careers, families, mortgages -- all that stuff we deal with every day."

Mageras adds, "The majority of people do have the more manageable form -- relapsing-remitting. It can be managed. It can be treated. People can continue to work. Some do need accommodations throughout their employment careers. More and more employers are providing reasonable accommodations."

An accommodation might be time for a nap to fight fatigue or a workspace near the restroom because of bladder dysfunction.

"West Wing" isn't the first time MS has played a role in a prominent movie or TV show. The 1998 movie "Hilary and Jackie" was about Jacqueline du Pre (Emily Watson), a classical music superstar of the 1960s who was spiritually crippled by the demands of fame and then physically devastated by multiple sclerosis.

"A movie has a lot of power, but you go and see it once," Frommer says. "This is a series that people are seeing once a week."

Bettor says: "If they could just get across to people yes, we do have this illness but we still cope day to day like every other person. It might just take a little bit more for us to cope. We do it and just as well and just as hard."

As for Sheen, an actor already associated with a variety of liberal causes, Bettor says: "I'd love to have him be a spokesperson for MS."

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