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Teri Garr on Life with MS

Shaw, Gina

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Note: Teri Garr is an ambassador for MS Lifelines, a support service for MS patients sponsored by Serono and Pfizer Pharmaceutical companies. Her appearance in Neurology Now does not constitute an endorsement by the AAN or this magazine of any of the products she may promote.

On a chilly night in early December, a packed house has gathered at a club on the Lower East Side of Manhattan for what's billed as an evening of “urban storytelling.” Five performers have taken turns onstage telling stories of their lives in Los Angeles. On the small stage now, actress Teri Garr is doing what she does best: making people laugh. Dressed in sleek black, her trademark blonde hair gleaming, she tells the audience how she exacted revenge on a cheating ex-boyfriend (Hint: it involved a hammer and all the windows of his house).



The comedy seems effortless— but getting up on the stage was not. More than 20 years ago, Garr experienced the first signs of what would eventually be diagnosed as multiple sclerosis (MS). She now has pronounced weakness on her right side, including a limp that— among other things—makes climbing stairs and getting up on stages challenging. But like many people with MS, it took years for her to get an answer to what was causing her strange symptoms.

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First Signs of MS

“It started in 1983. I was living in New York and I'd go jogging in Central Park, and I'd start tripping,” she says. “I'd notice that the more I ran and got my body heated up, the weaker I'd get. But then it'd go away, and it went away for about ten years. And then it started up again, and I started getting stabbing pains in my arm when I ran. But I figured hey, I'm in Central Park, maybe I am being stabbed.”

Over the years, Garr went to a series of doctors, including an orthopedist who thought she needed immediate surgery for a pinched nerve—she said no. “Every movie I did, I'd go see a different doctor in the location where we were shooting, and every one had a different opinion about what it might be,” she says. “Every so often someone would mention MS, but then someone else would think it was something else.”

The symptoms came and went until finally, in 1999, Garr was officially diagnosed with MS.

“It's a saga that is familiar to many other people with the disease,” says Garr.

“Every time I tell my story, people in the audience are nodding their heads and saying ‘Uh-huh, yes, that happened to me.’”

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Going Public with MS

Garr went public with her condition in 2002, speaking out on the “Larry King Live” show. But by then, the limp had already become noticeable and many in Hollywood had made their own MS diagnosis, putting her in what she told King was the “actress protection program.”

After appearing in more than 100 films and TV series, garnering an Oscar nomination for best supporting actress in Tootsie, and earning a large and loyal fan base for such roles as Inga in Young Frankenstein (“I love to roll in ze hay!”) and Caroline in Mr. Mom, she found that the work had dried up.

“I think my career would have changed anyway at a certain age, but Hollywood's very finicky about everyone being perfect. When things slowed down, it was either the MS or that I'm a stinking actress, so I chose to believe it's the MS,” she says. “There's definitely fear and misunderstanding out there about what MS is, and that's one of the reasons why it's so important to me to go out and talk about it.”

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Prioritize—for Good Health

Besides, she's discovered that living with MS means that you have to prioritize, and to simplify your life—a challenge for the energetic actress, who has had to pare down her compulsive multitasking. “Slowing down is so not in my nature, but I have to. Stress and anxiety and all those high-tension things are not good for MS,” she says. “If I get into something where I'm emotionally upset, it's not good. Or even when I go to a department store and there's a lot of noise and choices and stuff to look at, it can be too much.”

One thing that helps, she's found, is her regular Pilates workout, which she does three times a week. “It really strengthens the muscles, and I can always tell when I've done it, because I feel so much better,” she says. “And I also have to follow Thoreau's advice and ‘Simplify, simplify.’ I've learned to do one thing at a time.”

Has that been hard? Yes, but not as much as you might expect. “There are many things I've had to eliminate from my life that I'm really happy about. Everybody tries to do too much these days. If I only do three things a day instead of eight, I'm so much happier,” Garr says. Usually, at least one of those three things, if not all of them, involves her 11-year-old daughter Molly. “I try to reserve the top-notch time, my best energy, for her.”

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Time for Family

Molly's grown up with her mother's MS. “She knows I have good days and bad days. When she was about eight, I started having more symptoms showing, so she's gotten used to it as it has progressed,” says Garr, who thinks that in some ways MS has been a good lesson for her daughter. “She really appreciates life, and she's really kind to people. She's very compassionate. And she doesn't treat me any differently because of it—she says I'm not just a regular mom, but a Supermom.”

A glance at Garr's many activities confirms her daughter's assessment. In addition to raising Molly, touring the country to raise MS awareness, and appearing in projects from the urban story-telling program to occasional TV series— she was a guest on “Life with Bonnie” in 2003— Garr also has a book coming out in September. Titled Does This Wheelchair Make Me Look Fat (even though she doesn't use a wheelchair), the book, being published by Penguin, will touch on many aspects of Garr's life, from Hollywood tales to her MS, with typical humor. But at its heart, says Garr, the book is “about identity. When you have a disease that's altering you physically, who are you? Suddenly it's there, right in your face, and you have to figure out who you really are and what's important in your life.”

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Stay Upbeat

There are two ways to react when faced with something like MS, Garr believes. “For me, it was immediately, ‘Look at the trees, look at life, look at how wonderful it all is.’ My opinion is that that's the best way to go,” she says. “Another way to react is, ‘I'm struck, I'm hit, I'm down, I'm out, it's over.’” She hasn't had too many of those moments. “I've always been a feisty person. If you hit me in the jaw, I'm like, ‘Come back here!’ I've always been a fighter.”

For Garr, her disease is another source of humor. She often says, “I have a little touch of MS,” and delights in recounting Tootsie costar Dustin Hoffman's reaction to her diagnosis: “I'm sure this has something to do with sex.”

That upbeat attitude confounds some people, she acknowledges. “I think some people want you to be upset. Not only am I not upset, but I'm okay. I don't see any profit in being down, I don't see that it gets you anywhere,” she says. “Maybe it has to do with my show-business background. You're always being told that you're not right for something, not tall enough, not pretty enough, whatever. I would say, ‘But I'm smart, I'm talented, I'm this, I'm that!’ I've always been able to do that, and I do it now with MS.”

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Manage Disability—with ‘Balonya’

She has learned to be creative in managing her disability—a process she refers to as “the balonya.” (Garr told Neurology Now she wasn't really sure how we should spell the word.) In one of her earliest roles, as a dancer in a '60s beach party movie, Garr heard the director announce that they needed someone to do a stunt dive, for which they would get paid double for the day. Eager for the extra money, she told the director that she could perform the dive. “It's called a balonya. I can only do it once, though,” she said. The director agreed.

“So I do this wacky dive with this made-up name that really doesn't mean anything, and I get paid $200. And I think about this whenever I do something I thought I couldn't do. Literally, I think about it every day,” Garr says. “Now, nobody gives me $200 for opening a jar with my chin. But when I'm walking down the street and come to a stairway and I think, should I just turn around or should I try to go up the stairs—I think about the balonya. When I do something that's challenging, I feel so much better about myself.”

In traveling around the country speaking out about the disease, she has learned that how you feel about yourself has nothing to do with your level of disability. “At a function in North Carolina, I met a woman who has both cerebral palsy and MS. She's in a wheelchair, she can't walk, and all these people are coming up to talk to her,” says Garr. “She was the favorite person at that function, because she's so up, so funny, and her life is so full and fabulous. With any disease, but especially one like this, which goes all over the place and can go away and come back, your attitude plays a huge part.”

That's not to say that Garr finds life with MS easy. “I've always considered myself such an independent person, and you have to start asking for help. That's a hard one for me,” she says. “Letting people open doors for you and carry suitcases takes some getting used to. If I make that tradeoff, I know I'll have a little more energy for something else, something more important. But it's hard to give up that control.”

If there's one piece of advice she always gives to the many people with MS who seek her out at her speaking engagements, it's this: there's hope. “The first thing I ask anyone who comes to talk to me is, ‘Are you on medicine? You're strong now, you're walking around, and you want to keep it that way and not let it go any further.’ We have treatments now that we didn't have before,” she says. “Be your own health advocate.”

Copyright © 2005, AAN Enterprises, Inc.