Coping with Multiple Sclerosis


Home > Coping with Multiple Sclerosis > Close Encounters of the MS Kind (Transcript)

Close Encounters of the MS Kind (Transcript)

March 1, 2005 Teleconference with Teri Garr and Michelle Keating

Operator:

Good evening. Welcome everyone to the Close Encounters of the MS Kind conference call. All lines have been placed on mute to prevent any background noise.

After the speakers' remarks there will be a question and answer period. If you would like to ask a question during this time, simply press ‘star’ then the number ‘1’ on your telephone keypad. If you would like to withdraw your question press the pound key.

Thank you. Ms. Ratliff you may begin your conference.

Christine Ratliff:

Thank you so much and good evening everyone.

As you know, the Multiple Sclerosis Foundation has designated the month of March as National MS Education and Awareness Month. We would like to welcome each and every one of you to the National MS Education and Awareness Month Teleconference Series. As (Nicky) said, I’m Christine Ratliff. I’ll be your host for this evening’s program, Close Encounters of the MS Kind, with Actress Teri Garr, and Registered Nurse Michelle Keating.

Teri’s exciting career began many years ago as a ballet dancer in the San Francisco Ballet Company. As a teenager she danced in nine Elvis Presley movies including Viva Las Vegas and Roustabout. In the 70s she landed roles in Young Frankenstein, Close Encounters of the Third Kind, and Mr. Mom. She was also nominated for an Academy Award for her memorable performance in Tootsie. Teri made regular appearances on television, including the Sonny and Cher Show, McLoud, Star Trek, It Takes a Thief, and That Girl.

Teri has had MS symptoms since the early 1980s when she started to trip while jogging in Central Park. Today she is an Ambassador for MS LifeLines an educational and support service for people living with MS and their families. Tonight, Teri will share her personal experience of living with MS and discuss her current work as an MS LifeLines Ambassador.

Our second guest tonight is Michelle Keating. She is an MS-Certified and Oncology-Certified Nurse. Michelle is sailing with us on the MSF Cruise for a Cause for the second time this year. Michelle was diagnosed with MS over 23 years ago. She is a Board member of the International Organization of MS Nurses. Michelle facilitates a local MS Treatment Support Group in Missouri and provides emotional and medical support for MS LifeLines in her role as an MS LifeLines Nurse.

So, now that everyone has been formally introduced let’s get started.

Teri?

Teri Garr:

Yes.

Christine Ratliff:

We think it’s really exciting that you spent your teen years dancing in Elvis Presley movies. What are your memories of Elvis?

Teri Garr:

Well, Elvis is the King, you know, and so I figure I’m the queen. No I’m just kidding. He was absolutely, you know, wonderful.

I was very lucky to be able to work with Elvis. I had been working in a production of West Side Story and one of the dancers in it became a Choreographer of Viva Las Vegas. So several of us then worked on that and did some dancing in that movie. Elvis was making a whole list of bad movies at that time. So we just went from one to another. But it was really an interesting thing. And now looking back, I think, boy, he was fabulous.

And it was great knowing him. You know, he was a nice kind of gentleman guy, very, very, very handsome, and like I said, the King.

Christine Ratliff:

And what do you remember about working with Sonny and Cher?

Teri Garr:

Sonny and Cher were the King and the Queen. They were great. I worked with them for three years.

Let’s see, they were just, you know, riding the crest of their fame at the time and they were enormously popular. And Sonny was very appealing to America. They did a great kind of comedy act together. Well, I don’t know if it was considered that at the time. But I thought it was. And I learned a lot from Cher, among other things, needlepoint. She was just kind of an ordinary girl from the valley like me and she was this big, big star, cover of Time Magazine. It was an interesting thing to see. So I had a good time with that show, too.

Christine Ratliff:

Close Encounters of the Third Kind was quite a break away role for you. What do you remember most from working on that film?

Teri Garr:

Well, I remember we shot it in Mobile, Alabama, because Steven Spielberg, who was Director, wanted to use a big, the biggest studio there was. There really wasn’t a big studio so they found a Blimp Hanger that was in Mobile and they built this set that was about, you know, the spaceship. It looked like this big giant chandelier kind of luring itself down to the Earth.

So, that - we got to work down there. And it was my first exposure to the South. Had a great time down there. But mostly I loved the idea of that movie because it was about the unknown, you know, Outer Space, and how it was really just sweet and mysterious stuff.

So I was really happy to be part of that movie too. And now of course we’ve got Close Encounters of the MS Kind, altogether different than the movie.

Christine Ratliff:

How is living with MS like a Close Encounter?

Teri Garr:

Well, you know, many of us who have MS, it’s a very interesting thing. I think anytime anybody gets a diagnosis of any kind of illness, it makes you stop cold. You know, it’s a very sobering thing. And you take stock of life and what you have and sometimes what you don’t have.

But mostly for me because I’m a positive person what I do have and how great life is and all the wonderful things in life and as a matter of fact that’s the way I look at that movie, The Close Encounters of the Third Kind, that if there are people from Outer Space or there are some things that are unknown, we don’t need to be afraid of it. We just need to face it head on and see what it is. So the metaphor is very strong there for me.

Christine Ratliff:

What kind of symptoms do you experience on a regular basis?

Teri Garr:

Well, you know, I’ve been very lucky. I have relapsing remitting MS. And since I’ve been taking this medicine, I’m on the drug therapy Rebif, I think the symptoms have slowed way down. And I don’t have a lot to complain about other than the loss of notice. But I get fatigued a lot. Fatigue is a big factor. Of course, I have a lot of friends that are my age and go, “Oh yeah, we take naps, too.” So I don’t know - maybe fatigue is a natural thing when you get older. But I do get some bad fatigue. And I get a weakness in kind of my right side.

But so far it’s been nothing that’s been, you know, terribly debilitating.

Christine Ratliff:

How do you manage fatigue?

Teri Garr:

I think there are a couple things here. There are different kinds of drugs to treat symptoms, like there are things for spasticity and things for urinary problems. And for fatigue there’s another drug called Provigil. And I take that once in a while and it’ll just stop me from going to sleep.

Or sometimes, you know, I just take a nap for a couple of hours. And then I wake up and I’m okay again. And so I think, well, that’s fine too. I have nothing to do.

But I’m one of those people that want to be doing a lot of things all the time. So sometimes that frustrates me and I’d rather not take a nap. But I do.

Christine Ratliff:

Michelle, can you offer any tips on fatigue?

Michelle Keating:

Yes, I was going to say probably one of the most common symptoms of MS and one that’s truly different in different people, there really are a lot of different causes that are associated with the fatigue of MS.

You know, some people have the kind of fatigue like Teri was talking about, where, you know, you just even after you’ve had a good night’s rest, you find that you have to lay down or take a nap or something like that maybe to help get you through the day.

Some people find that certain medications can be associated with fatigue. Some people find that the fatigue associated with MS is partially because they’re not getting a good night’s sleep, maybe they are having some problems during the night, either with spasticity or maybe the bladder too, that are contributing to the daytime fatigue.

So I would really encourage you, if that’s a troubling symptom, to just keep a diary for yourself as to when and how its manifest for you, and find out what might help managing fatigue.

Sometimes exercise can be very helpful for people with MS. Exercise can actually help increase endurance and strength. So that can be a way to gain some relief.

Christine Ratliff:

Thank you Michelle.

 

Teri, what role do laughter and humor play in your life?

Teri Garr:

Well, the most important thing for me is to keep laughing and be funny. And I do, I just have, that’s the way I am, that I try to find the humor in everything. But I find that when I’m out talking to other people that have MS and not civilians, you know, people who don’t have it, but other people that have MS we can kind of run the same club and we can laugh at the same things together.

Like some of these flying leaps that you take over a rug or, you know, different kinds of little things that happen, we’ve made jokes about them. Like I called sleep fatigue, ESS. ESS, Emergency Sleep Situation coming for a landing, we have to take this. I don’t know, people get - I find it’s just a better way to deal with it.

And I also think that having a sense of humor and being funny about something is a great way to talk about it because people go, “Oh, I get.” It’s usually a two-sided thing. And whatever it does to help people get into a positive frame of mind I like to encourage that. Because I think it can only help. In fact I know it helps. It’s much better than, you know being down, black and sad about everything.

Christine Ratliff:

We read that you’re writing a book and that you’re considering calling it, Do I Look Fat in This Wheelchair?

Teri Garr:

No, it’s …Does This Wheelchair Make Me Look Fat?

Christine Ratliff:

Oh, is that still your title?

Teri Garr:

Another Hollywood vanity. I don’t think I’m going to call it that. I was thinking of the Joy of Handicap Parking. That’s also another positive thing about it. But I’m not sure that the book is going to be about me and MS. It’s going to be about my life. Because I think in reality and I think for a lot of people that have the right attitude, MS is really 25% of my life. It’s not the whole thing.

And to title my book about it, is not really - it’s a little misleading. But I do, you know, I play with these titles all the time because they’re always funny to me. That’s one of the things I think is the (wheel) trimming you with fat? People actually say things like that. It makes me laugh.

Christine Ratliff:

Well, that wouldn’t have made me laugh.

Teri Garr:

Well, good.

Christine Ratliff:

People with MS sometimes feel down or depressed. How would you attempt to lift someone’s spirits or encourage them to overcome an obstacle or continue to persist after not reaching their goals?


Teri Garr:

You know, I could only relate it to my whole life as a metaphor for show business. That I started out against all odds. I was going to be an actress, you know, on the stage or in the movies. And everyone said, “Well now you can’t do that. There’s 50 million people in the world and you’re blocked trying to do that.” So the chances are pretty - not very good. So you have to have a good attitude. Well I’m different. I’m going to be special. I’m going to make it. And if someone rejects me or says I’m not good or if I get bad reviews I just have to keep on going and keep on doing what I want to do and keep on trying.

So now I almost consider it a lucky thing because now that I’m - that I have a diagnosis of MS, I think, well so they don’t have a cure for it right now. They’re probably going to get one. I have hope. And I - it can be bad for some people but I’m hoping it’s not going to be that bad for me. And even if it’s bad, I think, you know, there’s other people that are worse off, that are in worse shape than I am. I think there’s always somebody that’s in worse shape than I am. And sometimes I don’t even mean physically. I mean mentally and emotionally. I mean they can’t get along with their mother-in-law. Or they can’t, you know, some mundane, stupid little thing. I go, you know, you’re in worse shape than I am. I always think that. And I point that out to people and I think slowly, it dawns on them. They go, “You know, you’re right. Life is good. It’s not the best.”

Michelle Keating:

Well, Teri, don’t you think its part of your diagnosis? You do go through a phase of depression. I mean it’s not uncommon for people to feel that way like, “Gosh, I can’t believe this is happening to me. You know, why did this happen?” I think there is some depression at that time

Teri Garr:

Well, I guess there is for some. I mean everybody reacts differently. I’ve gone through some depression but it’s been so slight that I kind of don’t - I don’t think about it. I certainly don’t dwell on it.

I think that everybody reacts differently. And I used to have a thing, you know, in my speech that I think it was from a (Norman and Fielding) that said, “Everyone reacts differently to pain.” They go, “Why me?” And I finally took it out of my speech because I thought, you know, I never said why me, and I just went, Yeah, well this has happened. Now what do I do about it? And some girl came up to me after I did say it, she said, “I never said why me either.” I said, “See, I’m not the only one.”

It’s - I think it doesn’t - not everybody reacts in a depressing, you know, that they really get down and depressed about it.

Christine Ratliff:

Michelle, how do you think someone knows if they are depressed and that they might need to get help for that depression?

Michelle Keating:

Well, first off, I mean it’s just like what Teri and I have said, I mean depression is again not an uncommon symptom of MS. We’re not really sure it’s related to the disease process or about coping or a combination of those things. As just a safety you would get help for a broken leg if maybe you were feeling depressed.

Some common symptoms of depression, you know people can have difficulty with thinking, they can have trouble with their appetite, overeating or under-eating, difficulty with sleeping.

Teri Garr:

Or a lot of sleeping.

Michelle Keating:

Right. So it’s - but it’s, you know, usually when we’re talking about depression we’re talking about symptoms like that are lasting for at least a couple of weeks, not just a blue day, not just a day that you’re feeling down in the dumps but doing more consistently.

And, you know, really responds to the medications, the (talking) depending on what the situation is. You know, depression is a very treatable symptom.

Christine Ratliff:

Teri, do you have any advice for someone who has been recently diagnosed with MS or has a friend or loved one who has recently been diagnosed?

Teri Garr:

The first thing I say to people that have been diagnosed is don’t be scared. Because I think it is a place to go immediately. You know, you just face it head on. And then of course the good news is that there are some things – there is medicine to help you. It’s like Michelle says, if someone should have a broken leg you go, “Well, how do we fix it? Is there somebody who knows what to do about this?” And you go to a doctor and you find out what kind of medicines are out there and available and what’s right for you. And that’s the first thing you do. And just the act of doing that, of being proactive and taking a medicine or investigating what this is about, kind of puts you in a better frame of mind. It kind of puts you into the reality of it rather than letting you sink into the quick sand of oh, I may, all that, because that’s just the thought of (unclear) this is so pointless. To me it’s pointless. I don’t know maybe some people think well, you have to do it a little bit. I don’t even know if you have to do it a little bit.

But I always advise people not to go there and to, you know, just go out and face the technical reality of what you have and go to the scientists and the doctors and find out how to treat it. And then get on some kind of a medicine that’s right for you. And, you know, I think once you do that you start feeling better.

Christine Ratliff:

And can you tell us a little bit about the work that you’ve been doing as a MS Lifeline Ambassador?

Christine Ratliff:

And is that rewarding for you?

Teri Garr:

It’s rewarding for me. I hate to even say selfishly it’s very rewarding to me. At first I thought maybe if I can just help one person. And I just feel like I’ve helped a lot of people or inspired a lot of people. But I’ve really helped myself. I feel like it just it still keeps me going to be able to always be focusing on the positive and stuff like that. It’s almost an immediate reaction now. I don’t even go into, but what if this happens? It’s not going to happen and forget it. It’s not in my vocabulary.

So it’s more like a conditioning. I’m happy that I am able to have this opportunity.

Christine Ratliff:

That sounds great. Michelle, can you tell us if MS Lifeline can help people who aren’t taking Rebif?

Michelle Keating:

Absolutely. Teri mentioned MS Lifelines is a support service for people living with MS for patients, families, friends to get information, to get support. We have a variety of services. We do help people who have been prescribed Rebif to help them through the insurance maze. We all know what that’s like. So we have special assists to help (with those) kind of questions. We also have nurse specialists who can answer questions both about MS and Rebif (working) to provide that.

We do provide a variety of educational resources including the programs that Teri mentioned as well a newsletter and brochures about different topics that may be of help to people. And so I think hopefully that there’s a lot. And we do have a website at mslifeline.com. Much of the information is on the website also.

Christine Ratliff:

Thank you. Teri was that your dog we heard in the background.

Teri Garr:

Yes, it was.

Christine Ratliff:

Are you going to introduce us?

Teri Garr:.

No, I just kicked her out of the room. She cannot behave. She doesn’t know that I’m on an important phone call and I’m busy

Christine Ratliff:

Okay, Operator I think we’re ready to take questions from listeners now.

Operator:

At this time if you would like to ask a question, please press star 1 on your telephone keypad.

Your first question comes from the line of Susan Dorne.

Susan Dorne:

Hi.

Teri Garr:

Hello.


Susan Dorne:

This question is for Teri. First of all I’m calling from Miami, Florida and really admire everything that you do. I’ve grown up watching you. And I even see you on TV with the reruns and the game shows and such. I’m curious as to two things. Do you find that famous people when - as yourself, when you’re exposed to them do they treat you any differently because now you’re, you know, titled for lack of better way, having MS?

Teri Garr:

Let’s see, that’s an interesting question. I try to - you know, we have a little saying at MS Lifeline - I will not be defined by my disease. So I don’t think of myself, Teri Garr who has MS, but I do notice that people are very nice to me. And I think well, were they always very nice to me or because I have MS they’re nice to me now. I choose to believe that they were always nice to me and that they like me.

But I still feel like I have an opportunity to talk to people. I think most people in the community are - I don’t want to use the word sympathetic. But they’re sensitive and nice to me about my situation. And I like to say to them, thank you very much but I’m okay. And I just want everyone to know that I’m okay and that I’m doing fine. And that’s wonderful for me to be able to help people see that.

Susan Dorne:

That’s a great way to look at it. Are there - do you find that there are any activities or events being in the spotlight as you continue to be that you don’t attend because it’s difficult because of your MS?

Teri Garr:

Absolutely not. I attend everything that I want to. But if you knew what some of these were like out here, you don’t want to go to them. Believe me, you can’t park, you can’t sit.

You know, I do whatever I want. I mean that’s the one thing I think about getting a diagnosis of something, you know, any kind of a disease. You kind of cut to the chase and you go I think from now on I’m going to do what I want to do.

Susan Dorne:

Right.

Teri Garr:

I’m not going to go sit at that stuffy screening if I don’t have to. So I cut out a lot of the stuff that I don’t want to do. And I’m happy about it. But I’m mostly happy to be able to tell people, you know, if you have MS you can do the same things. We call it playing the MS Card. Oh, I’m sorry I can’t do that boring old seminar, I have MS. I’m tired. But in reality, you just don’t want to. You’d rather watch Jeopardy.

Susan Dorne:

Right, well I appreciate your positive outlook and all that you do for the community. And it’s helped me. And I just wanted to say thanks.

Teri Garr:

I’m so glad I could help. Thank you.

Operator:

Your next question comes from the line of Kathleen Joy.

Kathleen Joy:

Hi Teri.

Teri Garr:

Hi.

Kathleen Joy:

Greetings from snowy Jamestown, New York.

Teri Garr:

Oh.

 

Kathleen Joy:

It’s where Lucille Ball was from. Have you ever heard of that?

Teri Garr:

Is it near Albany or Rochester?

Kathleen Joy:

No, it’s right between Buffalo and Erie.

Teri Garr:

Eek, that’s a cold place.

Kathleen Joy:

It is.

Teri Garr:

I know that place.

Kathleen Joy:

It’s about 12 degrees.

Teri Garr:

Oh dear.

Kathleen Joy:

I have a question for you. Are you on (Avonex)?

Teri Garr:

No, I’m on Rebif.

Kathleen Joy:

Is that everyday shots?

Teri Garr:

No, it’s three times a week.

Kathleen Joy:

Three times.

Teri Garr:

And it’s a little tiny subcutaneous needle that you use for children. I think they’re pediatric needles.

Kathleen Joy:

Yeah, I’ve heard. They call them Baby Needles.

Teri Garr:

Right. And they’re very easy. I think Avonex is a big old needle and it’s once a week.

Kathleen Joy:

Yes.

Teri Garr:

But for me this is the easiest medicine. I was on some other medicine before this. But this one is not only easy and I have no symptoms, but I think it’s helping. That’s the good news, so.


Kathleen Joy:

Well I had a question about when I take it I don’t know if this happens. Nobody seems to say it happens but it happens to me. It feels like my skin is too small for my bones and I just have to stretch and stretch and stretch. Does that ever happen to you?

Teri Garr:

Are you taking Rebif?

Kathleen Joy:

No, I’m taking (Avonex).

Teri Garr:

Oh, see I don’t know about (Avonex). I don’t know - I don’t get that with Rebif. (No, off hand).

Kathleen Joy:

Everybody tells me that I’m kind of nuts.

Teri Garr:

No, I’ve never heard of that before. I don’t.

Kathleen Joy:

Nobody has. But it happens to me.

Teri Garr:

Well, you can pretend that it’s not happening. That’s one of my other series.

Kathleen Joy:

Oh, okay.

Teri Garr:

Oh, this isn’t happening, so what. But I don’t know what that’s about.

Michelle Keating:

Yeah, and I’m not familiar with that so I don’t (unclear).

Teri Garr:

Maybe you can look for something else.

Kathleen Joy:

It could be. You know, I was just in the hospital I think for (Vascularization). My left leg, I was limping terribly. So I got put in the hospital with a steroid drip, and I was there for so long and didn’t move, then I got a blood clot and I got put in the hospital the very next day.

Teri Garr:

Sure, double whammy.

Kathleen Joy:

Pardon, I’m sorry, I didn’t hear you.

Teri Garr:

I said double whammy. But I don’t know. I think Michelle Keating would know more about that because she is in the medical field. I don’t know why that would happen.

Kathleen Joy:

Well they said I was just still too long.

Michelle Keating:

Yeah, well you know Rebif is the only treatment for MS that’s been proven effective in all three measures.

Kathleen Joy:

Oh, it’s better than (Avonex)?

Michelle Keating:

Well there have been (Avonex) head to head studies. That was the study, the evidence study direct (unclear) (Avonex) and Rebif. And based on the fact that there was superior efficacy that’s what (unclear).

Kathleen Joy:

What that is.

Michelle Keating:

Well, basically it was more effective in terms of relapse reduction.

Kathleen Joy:

Okay.

Michelle Keating:

And Rebif is the only MS therapy that’s proven to both reduce the MRI lesions and the lesion activity, it’s relapse free, and (unclear) disability progressing. It’s the only medication proven for those things. So besides what Teri was saying, it is easy to take the injection, it is also very, very effective.

Kathleen Joy:

Well, that’s good to know. You know what Teri, I was a calculus teacher. And I got this brain tumor close to my pituitary and it was bleeding. And I’m getting ready to go into surgery, and the guy comes in, “Oh, I read your MRI, you’ve got MS.” I said, “What?” He goes, “It’s not important now, you have brain surgery in three minutes.”

Operator:

Your next question comes from the line of Greg Schuckman.

Greg Schuckman:

Hi Teri, how are you?

Teri Garr:

I’m good. How are you Greg?

Greg Schuckman:

I’m calling just from outside Washington, D.C.

Teri Garr:

Okay.


Greg Schuckman:

And my question to you is about the advocacy side. You’re doing a wonderful job in terms of education and you, David Lander, and Montel and that other celebrity that’s come out to talk about MS I think has just been wonderful in terms of public education. Unfortunately because the MS community itself seems relatively small compared to the other patient advocacy groups, there’s very little education here in Washington up on Capitol Hill about what MS is, what it does, and how it affects people in their short prime of life years that has been the 20s and 30s really is typical diagnosis time.

And so my question to you in doing all this patient education that you’re doing is there also an opportunity perhaps to help people understand the needs that they have to -- I don’t like using the term -- but lobby for more Federal funding in particular to support MS research and that includes stem cells. And I know that’s controversial. But certainly out where you are in California, the state’s made a wonderful commitment to stem cell research. And that probably provides as much help for MS as anything right now.

Teri Garr:

Yeah, I do wish that - I feel I can do one thing at a time. But I wish I could go into Washington and beg and plead and lobby and say, “Please give us more money. We need money for research. We need to cure this.” And I like to call it Scum Sucking of a Disease. We need to.

And I find that in my helpfulness is more on an individual level with people. I sort of enjoy talking to people that are just newly diagnosed and freaked out. And they’re under the cloud of all the myths about it. But I totally agree with you that we need to have more. The stem cell research needs to get out in the open and be done. And that more money has to be put into MS research.

And it’s a big disease. Over 400,000 people in this country have it. And, you know, it’s debilitating. And it doesn’t, as I go around saying it doesn’t really affect the quality of your life that much. But it does for many people. And I think it’s a big thing. I wish we could pay more attention to it.

Greg Schuckman:

Well I know that Tysabri was pulled off the market yesterday and that’s unfortunate because certainly that was one of the new class drugs that folks were looking at. I’m actually in a clinical trial at the National Institute of Health right now. It’s very exciting.

Teri Garr:

Well, good.

Greg Schuckman:

And I wished more people had the opportunity to participate in things like that. I know that for people who are interested to go to clinicaltrials.gov and it’ll list all of the MS related trials that are being funded by the Federal government all around the country.

Teri Garr:

You know, that’s really great, good for you. I’m glad there’s somebody out there going for us. What kind of drug are you on?

Greg Schuckman:

Well it is - it’s called Zenepax. And it is a drug that used for transplantations. So is its immunomodulatory drug. It’s a once a month infusion, like Tysabri. But what it does it, you know, as you know MS is a non-immune disorder. And so if you can modulate the immune system so it doesn’t attack itself, attack ourselves, much the same chemical reaction that Rebif tries to do.

And so this is - I will tell you this. And I’m fortunate like you. I don’t really have any symptoms to show for. And since being on this trial the last four months I haven’t had any activity by MRI. So who knows.

Teri Garr:

Well good for you. Well, God bless you. I hope this works out. I wish you luck. I wish all of the people and the scientists and the researchers luck in finding out, you know, can we cure it, can we stop it, can we reverse it, you know help all of us. So thank you for being a participant.

Michelle Keating:

Clinical trials are certainly important in helping us learn more about what the best treatments are. If it weren’t for clinical trials we wouldn’t have the therapies that we have today. That is very important.

The other thing that you mentioned Greg and I think certainly all people with MS can do that is that in terms of lobbying the legislators and asking for more funding for the National Institute of Health, specifically neurological diseases, stroke. They fund the most of the NIH for MS research. But also the National Institute for Allergies.

Greg Schuckman:

Right.

Michelle Keating:

They help fund research. Lobbying certainly for more funds to go into the NIH is important as it is for getting the right help.

Greg Schuckman:

My guess -- not to monopolize the time -- my guess is that I’m probably one of the few people out there that is a professional lobbyist who has MS. And by virtue of this call I’ve actually come out and said so. So there’s probably a handful of people that know that. And part of the reason and Teri, I guess this is another question I have for you is, and perhaps it’s easier and probably it’s harder for you as a celebrity that’s known but once people sort of identified MS with you even though you don’t allow it to define you, you certainly must of or maybe you didn’t have some inhibitions about coming out and letting people suddenly, you know, associate you with this very debilitating illness.

Teri Garr:

Yeah, you know, it’s over now. Elvis has left the building. So it’s okay. So now I talk about it and its okay. But yeah, and plus I feel so good helping people to feel better and not to be freaked out. So that’s a great thing too.

Greg Schuckman:

Great, thank you.


Operator:

Your next question comes from the line of Hope DeCleene.

Hope DeCleene:

Hi Teri. I’m calling from Albuquerque, New Mexico. And I’m wondering and I bet you a lot of your listeners are wondering also how were you diagnosed? Did you have a couple of exacerbations? It used to be at least that you had to have at least I think at least two episodes before getting a definite diagnosis of MS.

Teri Garr:

I don’t know if my MS is following any of the rules that we’re supposed to do here. But I would say that my diagnosis took something like 20 years. I mean I started getting little tingling and tripping and stuff. And then I would go, what the hell is that? And then it would go away. I said, “Okay.” And then it would come back again. Well this is crazy. I’ll go to a doctor. And then when I first started going to the doctor or they - and it was all kinds of things, stretch your neck, take valium or stress or you’re crazy, which of course I am.

So it was a long time. And now that I’m out talking to different people that have MS I find out that it’s a pretty common story. That up until about ten years ago there were not very sophisticated diagnostic methods. So a lot of people would just go with these questions. What is going - something weird’s going on. And they didn’t know what it was. And I was in that same boat.

So then finally by the time I get a diagnosis in 1999 it was anticlimactic. And it was also kind of a relief by that time I heard there was medicine, therapy, and drugs you could take. Well allright let’s get on them. Let’s deal with it head on. So that’s the way I’ve been going at it.

Hope DeCleene:

So you didn’t have any one particular symptom that caused a Neurologist to say, “Oh, you’ve got MS,” like for instance I had Optic Neuritis.

Teri Garr:

Yeah, Optic…

Hope DeCleene:

First in one eye and then in the second eye.

Teri Garr:

Wow, yeah that’s pretty common.

Hope DeCleene:

Yes.

Teri Garr:

I never had any of the vision problems. And, you know, so maybe that’s what made it more difficult because the problems that I did have a little tingling in my arm, or you know, tripping, maybe I couldn’t pull my foot back. And then it would go away.

So it’s just that it’s not a big deal especially being, you know a dancer, kind of athlete person, you know, a physical person. Well, you know, this is just another one of those things. I pulled a muscle. I stretched something, you know. So I didn’t think that much of it. And in the end it served me well to have that attitude because now things that - the symptoms that I have no I go, well I guess it’s not such a big deal.

Michelle Keating:

Yeah, and you mentioned Hope the optic neuritis. In fact that’s a very common presenting symptom for many individuals. And when you talk about the diagnosis really the classic diagnosis of MS is two different symptoms in two different parts of the body at two different times. That’s enough to make a diagnosis.

But then we also have laboratory evidence now with the MRI that can be helpful about 90% to 95% of time in establishing a diagnosis even much earlier in helping with some of those lesions and to demonstrate in fact that there is more than one area in the body involved. So we’ve been able to diagnose earlier and get started on treatment which has made a big difference.

Hope DeCleene:

Yes, I realize that. But Teri you’re very lucky that you have so few symptoms or light symptoms. A lot of us have a lot of symptoms. I have a lot of symptoms. But most of them are invisible.

Michelle Keating:

So true, and sometimes very difficult.

Hope DeCleene:

Oh, yeah, that’s right.

Michelle Keating:

Next question.

Operator:

Your next question comes from the line of Lisa Smith.

Lisa Smith:

Yes.

Teri Garr:

Hello.


Lisa Smith:

Hello, how are you?

Teri Garr:

Good, how are you doing?

Lisa Smith:

Okay. Your attitude is like mine. I just put all of my falling and my (unclear) now I can (unclear) MS. I was being graceful, because I’m always tripping.

I think the guy just said, that they have taken off the market. I’m on interferon. And did he say what has been taken off the market?

Teri Garr:

I think it was called Tysabri.

Lisa Smith:

Tysabri. And I think my Neurologist was going to put me on that with my interferon shot like once a month. He was going to have an IV drip. And I was wondering if anybody could elaborate on that and now my heart’s broken but I’ll get over it.

Teri Garr:

You don’t want to go on anything that’s not going to help. And so of course there’s always bad news that something didn’t work out. You want there to be, you know, something to cure this horrible thing. But maybe there’ll be something else you can use.

Michelle Keating:

Tysabri was actually removed from the market by the companies that are marketing the medication in consultation with FDA due to some unusual - two serious adverse events that occurred in patients who were taking Tysabri in combination with Avonex for at least three years. And based on those risks they had definitely one fatal case and one suspected case of a rare and frequently fatal demyelinating disease of the central nervous system called PML. And based on that they have voluntarily taken the medication off of the market, and if anybody wants more information they can certainly get that. There’s a toll free number for more information. It’s only the removal of Tysabri, no other medication.

And in fact Serono and Pfizer have been committed to patients in terms of patient safety. It’s always been important. Rebif is the foundation therapy and states it’s the only therapy as I mentioned before proven effective for at least four years and it’s been studied even up to eight years in terms of the study called the Prism Study in which we have long term data showing safety. So if anybody wants more information I can give the 800 number if you would like more information about that.

Lisa Smith:

That would be great.

Michelle Keating:

Okay, the number is (888) 489-7227.

Lisa Smith:

Okay, and I just want to tell Teri that she - I can really respect her and admire her for her keep going. But I’m just like her. I’ll say, “What the heck,” you know. I make humor of it.

Teri Garr:

Good for you.

Lisa Smith:

You know.

Teri Garr:

Exactly.

Lisa Smith:

This looks great.

Teri Garr:

That’s the way it goes and you just move forward. Good for you. You go, girl.

Lisa Smith: .

And you go

Teri Garr:

Okay.


Lisa Smith: .

Thank you

Teri Garr:

Okay.


Operator:

Your next question comes from the line of Peggy Marx.

Peggy Marx:

Hi Teri.

Teri Garr:

Hi.

Peggy Marx:

How long have you been diagnosed with MS.

Teri Garr:.

Well let’s see, 99, six years (unclear)

Peggy Marx:

I’ve been diagnosed 12, almost 15 years.


Teri Garr:

Really?

Peggy Marx:

Yes.

Teri Garr:

And are you taking any medicine?


Peggy Marx:

I was on Copaxone about two years and now I’m on beta interferon.


Teri Garr:

Okay.

Peggy Marx:

And it has helped. I really like the beta interferon. I just don’t like the needles. My question for you is how do you get over - how did you get over the diagnosis, of them telling you that you have MS?

Teri Garr:

Like I said before that I had been 20 years of going to doctors all different kinds of doctors and hearing all different kinds of things and maybe it’s this, and maybe it’s that. And when I finally and I looked it up on the internet in different places about MS medicine and stuff, when I finally got a diagnosis for MS it was actually a relief because then I could do something about. And there was medicine.

And at least I knew what it was. So it was never a question of being freaked out or sad or anything. But you know, everybody reacts in different ways. It - because it’s a disease that treats everyone in a different way and it’s a disease that people react to in different ways. But my advice though is to keep a stiff upper lip.

Peggy Marx:

Yeah, I’ve tried that. And there’s I can make it through saying okay, yeah I have MS. But then the next day its like why do have to deal with this? And then I start thinking about like Annette Funicello. She has MS and you have MS, Montel Williams has it. What did I ever do to have to get it?

Teri Garr:

Oh, I know. We don’t deserve it. I totally agree. I know, it’s not fair, it isn’t fair.

Peggy Marx:

No.

Teri Garr:

In a way you can’t dwell on that because it’s not going to help anything. But that’s what I like about going around and talking to people about living with MS as I go, that’s right, it’s not fair. In fact I start thinking we’re special. We’re kind of special that we get this and then, you know, it’s not fair but we deal with it.

Peggy Marx:

Do you ever make it to Maryland.

Teri Garr:

Yes, I do. Like Baltimore area?

Peggy Marx:

Yes.

Teri Garr:

Yeah. It’s beautiful.

Peggy Marx:

When is your next plan coming out, do you know?

Teri Garr:

I don’t know. Soon I think. I have a good time there.

Peggy Marx:

Are you doing anything?

Michelle Keating:

You might want to check MS Lifeline dot Com (mslifeline.com).

Teri Garr:

Yeah, and the pipeline tells about (unclear).

Michelle Keating:

And it has the upcoming seminars and where the locations. You might want to check that and then you’ll be able to find that or if you don’t have access to that you could call MS Lifeline and I can give you the number. That’s (877) 447-3243.

Peggy Marx:

Okay.

Michelle

Keating: Okay.

Peggy Marx:

MS Lifeline.


Michelle Keating:

MS Lifeline.

Peggy Marx:

Allright.

Teri Garr:

Thank you.

Peggy Marx:

Well thank you.

Teri Garr:

I hope I meet you sometime.

Peggy Marx:

I hope to meet you as well.

Teri Garr:

Okay.

Peggy Marx:

All right, thanks Teri.

Teri Garr:

Bye.

Operator:

Your next question comes from the line of Pamela Jenkins.

Pamela Jenkins:

Oh, hi Teri.

Teri Garr:

Hi.

Pamela Jenkins:

Hi, I didn’t think I was going to get to ask you a question. First of all I want to say I thought if I ever got a chance to talk to you I wanted to say that you should have gotten the Oscar for Tootsie.

Teri Garr: .

Thank you very much

Pamela Jenkins:

I really do

Teri Garr:

Would you write them a letter about that?

Pamela Jenkins:

Yes, I will.

Teri Garr:

Okay.

Pamela Jenkins:

No, really. I think you should’ve gotten the Oscar but I guess that’s over and done with.

Teri Garr:

I guess, but thanks anyway. I appreciate it.


Pamela Jenkins:

Well it’s Wednesday, but I’m on Avonex and I’m in a wheelchair. I’ve been in a wheelchair since 1994. And I just wondered what does Rebif - what has it done for you? Is it just an overall help to you or?

Teri Garr:

Yeah, you know, I always think that because I’m on something I feel better emotionally. And tell that to people, especially people who are newly diagnosed.

But the medical rule, things about Rebif, I’m not sure about. All I know is that it’s really helped me the most. I took another one, beta interferon. It wasn’t any good for me. And I’m very happy to say that my symptoms have really subsided and that I have few - I have actually no new lesions. And that just makes me feel so good, you know. I mean, it seems like it’s helping me a lot.

Well you have to do what’s right for you.

Michelle Keating:

And I think any time, you know, in your individual situation you probably should talk that over with your doctor as to what the right treatment is for you. But as I mentioned earlier, you know, there was the direct head to head comparison between Avonex and Rebif. And that was called the Evidence Study, and based on that there was a greater relapse reduction in patients who were taking Rebif, as opposed to the patients who were taking Avonex. And it’s the only medication that has been proven to not only reduce relapses but disability for progression as well as the MRI - lesion area - in lesion activity.

Pamela Jenkins:

Oh, okay. But you have to take the shots three times a week.

Michelle Keating:

It’s three times a week, right. But it’s a small needle under the skin.

Pamela Jenkins:

Well I have an appointment with my doctor next week. I see a wonderful doctor at Shepherd. I’m from - I’m in Atlanta. And I see a wonderful doctor at Shepherd Center there. I must ask her about that when I see her next week.

But I’ve had MS since 1983. People ask me how long I’ve had it. I just tell them forever. I can’t think what I want to say now. There’s that cognitive thinking coming into play here. My doctor told me that the reason my cognitive thinking was primarily from fatigue where I need a nap everyday sometimes two times a day or more. But anyway I just wondered about the Rebif whether that was you think maybe better than the Avonex. But I’ve only had one flare up, one exacerbation since I started taking it. And that was just blurred vision. And I had an MRI for that and he put me on the steroids for three days and that seemed to clear it up.

Michelle Keating:

Well I think it’s certainly something you can discuss with your doctor as you said when you’re going in for a visit, consult with your doctor (unclear).

Pamela Jenkins:

I think I will when I see her next week.


Michelle Keating:

And if you’re interested in getting more information you can contact MS Lifeline and you can be sent out a resource guide that has quite a bit of information in there about Rebif and how it works and (unclear) for it.

Pamela Jenkins:

Okay.

Michelle Keating:

So feel free to call Lifeline for that information.

Pamela Jenkins:

I will do that and talk to my doctor next week when I see her.

Teri Garr:

Good luck to you.

Pamela Jenkins:

Okay, well thank you so much and thank you for letting me talk to you tonight.

Teri Garr:

Certainly.

Pamela Jenkins:

Bye-by.

Teri Garr:

Bye-by.

Operator:

You’re next.

Christine Ratliff:

I think we have time for one more question.

Operator:

Your last question comes from the line of Bettina Gordon.

Bettina Gordon:

Hi Teri, how are you doing?

Teri Garr:

Good, how are you Bettina?

Bettina Gordon:

Oh, we’re doing fine.

Teri Garr:

Great.

Bettina Gordon:

I’m calling from San Antonia, Texas, and I have a couple of questions regarding new diagnosis. I got diagnosed last July and I’ve been on Copaxone since then, it’s actually my first medication that I am taking. And luckily up until about December I was doing fine, you know, just (unclear) symptom, you know, the numbness in your face, just little things. But since January now I’ve been feeling really fatigued and it’s just excruciating, you know it’s really a struggle today. And actually my doctor went ahead and had another MRI done and, you know, everything seemed okay. There was no activity going on in the brain which is really good.

But I mean I heard you saying that you had led to different medication. I mean how can you tell or how could you tell that this particular one wasn’t working for you and you had to change it to another one?

Teri Garr:

The one I took before Rebif I mean I was just vomiting. I was vomiting every second. In fact, God, I hate to say that I ended up in the hospital because I was just - I couldn’t tolerate it. So, but I - that’s how you know that it’s not working. But the way that you know that it is working is that usually the - you have less lesions on your, you know, and you have less tension. So I’ve been really, really lucky to have few symptoms much less because that’s how I judge it.

Michelle Keating:

Were you talking about the fatigue medicine?

Bettina Gordon:

No, well, no actually the medication itself for MR, MS. Because I’m on Copaxone and no luck - I mean so far I’ve been lucky. You know, I don’t have any visible signs. You know, just like all the other ladies, I have it inside, you know, internal ones, but extreme fatigue. I was just wondering how people could tell if certain medications are not working for you.

Michelle Keating:

Well I think some of the things that you’re going to be looking for is if you find that your relapses, you know, if you were doing well and all of a sudden, you know, your having more relapses. You know, if your MRI has a lot of change that would be another indication. If you feel that your symptoms that perhaps you had intermittently or more persistence that might be an indication. If you find that you’re having more difficulty with your memory, more difficulty with positive (unclear) those are sort of some of the things you might look for.

I think really in terms of, you know, treatment you certainly want to be on your treatment six months for a year because before you can really say how is it working for me? And then I think it’s really you in combination with talking with your doctor as to, you know, how you’re doing on that during that period of time.

Bettina Gordon:

Yeah, excuse me, how can you tell if you are having another attack? I mean as I said I’m lucky, you know, I can still walk, I don’t trip, I don’t fall.

You know and now…

Michelle Keating:

That is a good question. And often times it becomes difficult to tell what is a new relapse, what is a new attack versus the symptoms that you have or a bad day.

Bettina Gordon: Right.

Michelle Keating:

Usually what you’ll notice with the relapse is that it’s not going to just last for a couple hours or a day. It’s usually several days to several weeks. And it may be something that it’s a new symptom completely or it maybe just a worsening of the symptoms that you’ve had.

So for instance, you know, if you had some weakness in one leg and then all of a sudden now you’ve noticed you’ve got worse symptoms in the other leg or perhaps, you know, the weakness is more pronounced, you’re falling, things like that. That’s an indication of a relapse. And I’d say if you had - if you feel like you’re in that category where that’s happening for several days, it’s probably a good time to talk to your doctor and, you know, see if the doctor wants to see you and if that should be treated.

Bettina Gordon:

Yes, I’ve gone last week actually. I just seem to suffer more with, you know, those little side effects or (unclear) as like extreme fatigue, headaches, you know, having problems concentrating. You know, nowadays when I need instructions on something it takes a little bit longer to catch on which means I have to read more often to understand it.

Michelle Keating:

Sure.

Bettina Gordon:

And again but the fatigue is the worse. You know, come like mid-afternoon, it’s like okay I’ve got to find somewhere to lay down. So these are just the side effects of the things that come along from MS, right?

Michelle Keating:

Well, they could be, as you’re describing the symptoms. But if those things are particularly worse recently then that can in fact be a relapse. So, you know, I’d say, you know, you need to talk that over with your doctor.

Bettina Gordon:

Well he said I didn’t have any active lesions in my head. So, on the MRI he couldn’t see anything. So, you know, I actually have to calm my own guinea pig in reference to medication. You know, you’re always changing your medication trying to find something that works for you so that you can get through the day. You know, and make you go to work, you know, and earn your living. Yeah, I’m just my own guinea pig right now, but hopefully, you know, something - I’m going to find eventually something that works for me.

Michelle Keating:

Good luck to you.

Bettina Gordon:

Yeah, but I appreciate listening to you ladies. And I’m going to wish you all good luck.

Teri Garr:

You, too.


Bettina Gordon:

Thank you. Good night.

Christine Ratliff:

Alright, I think we’re about out of time. I’d like to thank all of you for joining us tonight. And I especially would like to say thank you to Michelle and Teri for helping us kickoff National MS Education and Awareness Month. It’s been a pleasure speaking with you.

Teri Garr:

Likewise.

Michelle Keating:

Thanks to you.

Christine Ratliff:

Good night.

Teri Garr:

Is that it?

Operator:

This concludes today’s Close Encounters of the MS Kind conference call.


You may now disconnect



  Support the MSF
Supporting MSF's programs to help make "a brighter tomorrow" has never been easier.
make a donation 

  Learn About MS
Common symptoms of MS include fatigue, weakness, spasticity, balance problems, bladder and bowel problems, numbness, vision loss, tremors and depression.
learn more 

 

Unless otherwise specified, all medical content is compiled by MSF staff and reviewed for accuracy by a member of our Medical Advisory Board.

The MSF strives to present clear and unbiased information. This site is partially funded through a grant from Bayer Healthcare, LLC.

Website Design by SimplexWeb

© Copyright 2000-2013 Multiple Sclerosis Foundation - All Rights Reserved

リモワ リモワ アウトレット リモワ アウトレットモール リモワ アウトレット店舗 リモワ アウトレット 本物 リモワ アウトレット ドイツ リモワ アウトレット店 リモワ アウトレット 楽天 リモワ クラシックフライト リモワ クラシックフライト tsa リモワ クラシックフライト 63l リモワ クラシックフライト 35l リモワ クラシックフライト 2輪 リモワ クラシックフライト 激安 リモワ クラシックフライト 黒 リモワ クラシックフライト トパーズ リモワ クラシックフライト アタッシュケース リモワクラシックフライト 機内持ち込み リモワ クラシック rimowa クラシックフライト リモワクラシックフライト ユナイテッドアローズ リモワ フライト リモワ サルサ リモワ サルサエアー リモワ サルサデラックス リモワ サルサ ユナイテッドアローズ リモワ サルサ 86l リモワ サルサ 35l リモワ サルサ 激安 リモワ サルサエアー 34l リモワ サルサ 赤 リモワサルサ スーツケース リモワサルサ レッド リモワのサルサ リモワ サルサエアー 94l リモワ サルサエアー 63l リモワ サルサエアー 35l リモワ サルサエアー 84 リモワ サルサエアー ホワイト リモワ サルサエアー 20l リモワ サルサエアー 持ち手 リモワ サルサ エアー 激安 リモワサルサエアー ルビー リモワ サルサ エアー ネイビー リモワサルサエアー レンタル リモワ スーツケース リモワ スーツケース レンタル リモワ スーツケース サルサ リモワ スーツケース 機内持ち込み リモワ スーツケース 販売店 リモワ スーツケース 白 リモワ スーツケース 店舗 リモワ スーツケース カバー リモワスーツケース 激安 リモワスーツケース アウトレット rimowa スーツケース リモワ トパーズ リモワ トパーズ ステルス リモワ トパーズ チタニウム リモワ トパーズ 82l リモワ トパーズ 32l リモワ トパーズ プレミアム リモワ トパーズ 63l リモワ トパーズ 64l リモワ トパーズ 最安値 リモワ トパーズ 激安 リモワ トパーズ 35l リモワ トパーズ ゴールド リモワ トパーズ スーツケース リモワ リモワ 機内持ち込み リモワ リンボ リモワ ビジネストローリー リモワ スーツケース リモワ アウトレット リモワ 激安 リモワスーツケース rimowa rimowa激安 リモワ 通販 リモワ スーツケース 通販 リモワ リモワ サルサ リモワ トパーズ リモワ 機内持ち込み リモワ クラシックフライト リモワ サルサデラックス リモワ サルサエアー リモワ リンボ リモワ ビジネストローリー リモワ サルサ 激安 リモワ スーツケース リモワ リモワ アウトレット リモワスーツケース アウトレット リモワ 激安 リモワスーツケース リモワ サルサ rimowa rimowa激安 リモワ リモワ サルサ リモワ スーツケース リモワ 激安 リモワ サルサエアー リモワ アウトレット リモワ クラシックフライト リモワ 通販 リモワ スーツケース 通販