When you have multiple sclerosis -- as I learned I did three years ago -- your language becomes infused with grim disease lingo: brain atrophy, white-matter lesions, demyelination. So it's refreshing to hear somebody refer to the disease as TickledyBumptyBoom.
That someone would be actress, dancer and comedian Teri Garr, who revealed in 2002 that she's had MS for nearly two decades. MS is a chronic, progressive disease of unknown origin in which the immune system appears to attack the protective coating on nerves in the brain and spinal cord. After years of keeping mum, Garr recently has gone quite public with her illness: She's a spokeswoman for Rebif (one of the four injectable, disease-modifying drugs approved for treating the most common form of MS) and has been named the first chair of the National MS Society's Women Against MS program.
I got to chat with her on the phone last month, just us two gals, talking about . . . TickledyBumptyBoom.
Tell me about your symptoms right now. The only one I've heard you talk about is your slight limp, which I don't think anyone would notice if they didn't know.
Well, it depends on if I'm tired or not. Sometimes it's worse than other times. Mostly it's my right side. It's a weakness; my right hand and arm are weak, and my right leg.
I haven't had any other symptoms. I've never had vision problems, but I have this arm thing, and leg thing, on my right side. Not on my left side. It's very interesting, how different things happen to different people. What symptoms do you have?
I don't have any physical symptoms right now; I started out being one of the numb and tingly people. But I'm getting to that stage of life where I can't remember people's names sometimes, and little dumb memory lapses, and you have to think, "Is that because I'm 43 or because I have MS?"
I know. I know. I say the same thing about my vision. Someone says, "Well, you need glasses now because of the MS." And I say, "I need glasses because everybody my age can't read the menu."
I do get frustrated a little bit with my right-side weakness, because I do drop a lot of things.
About a year or so ago, I used to trip and fall a lot -- I mean fall. I fell down a flight of stairs in my house at least three times. I finally got up one day and went, "I am not going to do this again." Now I walk very carefully, very slowly. When I'm on the stairs, I watch where each foot goes.
I broke a whole set of my favorite glasses -- I put all these wine glasses on a tray and crashed the whole thing on the floor. I don't want to do that again. I'm going to be very careful and have somebody else bring those damned glasses.
I just try to make adjustments to the things I notice are happening. And then I'm not bothered by it, because they don't happen.
That's so smart.
Oh, yes, I'm very smart.
Are you right-handed?
I am right-handed, and now I have to learn to work with my left hand. So I actually went to an art class recently to see if I could develop my left hand, [develop] more coordination with it. That's another thing that's a fine line. I don't know whether to try to develop my left hand at writing or if I should keep forcing my right hand to write and keep up the ability that I have left. So, you know, I do a little of both.
Has your doctor weighed in on that?
Yeah, he tells me to keep using my right hand. I want to put this brace on my arm all the time, because it feels better . . . but he says, well, don't do it too much, because you'll get dependent on it.
And I think it's the same thing with my leg. I wear this brace because I have drop foot, and I should walk around without the brace sometimes, but it's so much easier to walk with it that I put it on all the time, and I very rarely take it off.
Do you do exercise?
I do Pilates. I know one thing for sure: If I can get myself to the gym and do the Pilates three times a week or even twice a week, I feel better, and I walk better.
Do you get a lot of bruises from your injections? I do.
I get red marks, not bruises. I find that if I keep the medicine warm before I inject it, it makes that less, and also to rub your skin a whole bunch before you put the needle in and after you put the needle in. It sort of helps it.
But I have this very strange body, where I have this big fat stomach and skinny legs. I want to put it [the needle] in my leg, but there's not enough meat there. So my poor stomach is just all full of holes. It's one of those things where you just have to have a sense of humor about it. But I know I'll never be wearing a two-piece bathing suit.
As an actress, you probably have an easier time with this than I do. But do you find "multiple sclerosis" to be a terrible tongue-twister, and is it hard for you to say?
I say [in my speech about multiple sclerosis] "You try saying it 10 times in a row." And plus, don't some people get tongue-tied with this [disease]? It's not fair.
So I made up a new word. It's called TickledyBumptyBoom. You get a little tickling, then you bump into something, and BOOM, you fall.
When people ask what you have, you say, "Oh, I have TickledyBumptyBoom."
Do you spend any time speculating as to the causes and what in your past might have led to your getting MS?
I do, just like you. I talk to doctors -- I do these doctor/patient programs in different parts of the country, and I ask them what they think. And it's so interesting, because I ask them, do you think it's viral? And they're not sure it's viral, maybe it's Epstein-Barr virus. Do you think it's from the demographics, where you come from, people that are born in a certain region or near or far from the equator? It's so interesting -- like you said [in an article last year], it's like a puzzle, they've got all these pieces, and none of them fit together. But they're starting to fit together a little bit.
Now, I hope it isn't this, but it is a coincidence that you and Annette Funicello were both in the movie "Head," and you both ended up with MS.
We were in another movie together, too. Oh, man, a bad one, too. "Pajama Party."
But there's a lot of people that I went to high school with [who have MS], around where I live [now]. They don't know if it's from where you lived. Or from just thinking bad thoughts.
Well, look, I'm not a doctor. I don't have a clue. But I love that researchers are out there, God bless them, trying to figure it out. And trying not only to slow the progression but stop it and get us back some of the stuff we've lost, some of the nerves and movements for people that are much more debilitated than I am. And then to find out that nobody ever gets this anymore, find . . . a vaccine for it would be great, too. It's all in the future. I really have hope for it.
Look at what we're doing now. Ten years ago there wasn't even any of this. We now have choices. We now have medicines, we have better ways to diagnose it. I count this as a very hopeful thing, a very positive thing. It's escalating, it's getting faster and faster that they're learning about this disease.
I'm just glad when people say they're taking medicines. So many people that I meet on the road will say, "Oh, I was diagnosed," and I say, "Oh, well, are you taking medicine?" And they say, "No, my doctor says I'm doing okay and I don't need to." That's the thing that we have to say, "No, if you have a diagnosis, you need to take something. Because you're going to slow the progression." I don't know what's with these doctors that say, "You have no symptoms right now, you're okay, so don't take anything."
Getting the information out there is slow. It's amazing, isn't it, that even doctors don't know this? So I'm glad to see that anybody's taking anything.
How old are your kids?
I just have one [a girl], who's 10. And that's enough.
I like [having] a little mind to form and say, you know, MS is not so bad. The rest of the world can have a big bad attitude about it, but we don't.
And does she respond well to that?
Yes. Because of the way I told her, you can have a cold, or you can have the flu, or you can have MS, it's just a thing. . . . She sees people in wheelchairs and stuff, and I [remind her that] mine hasn't reached that far. But even those people are taking medicine and taking care of themselves and doing the best they can. She understands that, and that's good. I think it's going to make her a better person. I hope so, anyway.
Has she ever watched you do your injections?
Oh yeah! She does. And she's now used to it. I do it in the bathroom, and she'll be [nearby]. And she'll say, "Did you do your shot?" "Well, yeah." "But you didn't say, 'Good girl.' "
I give myself my shot and I go "good girl" to myself. So I'm teaching her those little things. That it's a positive thing, it's a good thing to help yourself. It's hard to get through to them sometimes, but I think I am.
That's one of the most important things to me, raising a good child. It's so important to help other people, too, but I try to make that [raising her daughter] a priority. Which is so different from being an actress in Hollywood, which is one of the good things that has come from this. It's changed my whole perspective of life.
Yet you still are an actress in Hollywood.
I'm very big, dahling, very big.
I keep working, but, as I like to say, in Hollywood, I don't know what's worse, being an actress over 50 or being handicapped.
I work as much as I can. But I have to say, I really, like, enjoy helping people and talking about being positive and appreciating the things that I have.
You just described yourself as handicapped.
A handicap in Hollywood is -- anything negative and you're out. It could be a hangnail. I don't consider myself handicapped. But I think others do. I think that's one of the reasons I'm talking about it, because I want to say that not all people with MS are necessarily handicapped.
Jennifer Huget is a regular contributor to Health and author of the Kidlife column.