All About Multiple Sclerosis

More MS news articles for June 2004

Multiple Sclerosis

http://www.washingtonpost.com/wp-dyn/articles/A7423-2004Jun1.html

Wednesday, June 2, 2004
Teri Garr and Jennifer Huget
The Washington Post

Multiple Sclerosis (MS) is a chronic autoimmune disease that affects the central nervous system. Freelancer Jennifer Huget learned that she had multiple sclerosis three years ago. In her recent article, The Heartbreak of TickledyBumptyBoom (Post, May 6), Huget interviews actress and comedian Teri Garr, who recently revealed her diagnosis of multiple sclerosis. She has had the disease for nearly two decades. Garr is currently the chair of the National MS Society's Women Against MS program and a spokeswoman for Rebif, a disease-modifying drug for treating MS.

Garr and Huget were online Wednesday, June 2 at 2:30 p.m. ET to discuss their personal struggles with multiple sclerosis.

Huget is a regular contributor to the Post's Health section.

Editor's Note: Washingtonpost.com moderators retain editorial control over Live Online discussions and choose the most relevant questions for guests and hosts; guests and hosts can decline to answer questions.

Teri Garr and Jennifer Huget: Thanks everybody for joining us for our chat. We'll be talking about MS this afternoon, and it looks like we've already got lots of questions to answer. So let's get going!

Long Beach, Calif.: How much of your present condition is attributable to being a Hondell Dancer? I know that "first gear was alright," but what about second and third?

P.S. We all love you, and hope you feel better, and live to be 120!

Teri Garr: I have been off the motorcycles for about 20 years now, but that doesn't mean I can't still do it.
I plan to live to be 120!
Same to you.

Boston, Mass.: Hi there. A great friend of mine (then 42 years old) was diagnosed with MS in August of 1996 after experiencing balance problems for a few years. He underwent some experimental chemotherapy-type treatments for a few years in an effort to arrest the progression of the disease, which I do not believe occurred. He has required a wheelchair for the past three years. Any new developments in the area of arresting the disease's progression? Is there anything out there for someone in my friend Brad's position? Best regards.

Jennifer Huget: Hi, Boston: This is such a complicated disease, and so much progress is being made on so many seemingly unrelated fronts (as we noted in the sidebar to my conversation with Teri in Tuesday's health section), it's really hard to keep up with everything. Your friend should, I think, just find a neurologist with whom he's comfortable and who seems to keep up with research and ask him or her these questions. Good luck to him.

San Francisco, Calif.: Like you, I was diagnosed 14 years ago and have not gone public with my coworkers. Only with close friends and family. I always think that the stigma attached to the disease is not worth dealing with at work. My symptoms are pretty minimal, with some residual numbness on my left side from previous attacks. (I am right handed.)

I am on Avonex and haven't had an attack in over six years.

What have been the effects of going public for you within your industry? Besides the obvious support you have received, how do you feel about your decision and how others might feel?

Teri Garr: Good for you for taking a therapy.
I think there are a lot of myths about MS and it may have affected my career. On the other hand I have worked enough and I am happy to be touring the country speaking about living with MS to give people inspiration and motivation to help themselves. Take a step back, evaluate what is important, and enjoy life.
There are things that you can do today that, like you, all those years ago, there was nothing. The community today needs to know that with MRI and the current medications the view is good. You can be diagnosed and treated early. And there is hope for the future. Good luck, keep going.

Arlington, Va.: Teri and Jennifer,

I want to wish both of the best.

Are the number of people with MS increasing or are we hearing more about it because celebrities are going public?

Jennifer Huget: Hi, Arlington: Thanks for your kind words. Nobody seems to know exactly how many people really have MS; part of the problem is that a lot of people who have it aren't yet diagnosed. But I think everybody agrees that when celebrities like Teri go public, it makes other people more willing to get to the doctor and get checked out.

Silver Spring, Md.: Jennifer, are there known causes for getting MS?

Jennifer Huget: Hi,SS: That's the million-dollar question. No, nobody knows what causes MS; the current thinking seems to be that some people might be genetically predisposed (some of whom may never get the disease) and some environmental condition or virus triggers the onset. I'd love to know!

Fairfax, Va.: What's been the best medical advice you've received on how to "treat" MS? Also, do you use any holistic medicines?

Teri Garr: Thanks for asking.
The best advice was after being diagnosed, get on treatment.
I take one of the interferon therapies, Rebif.
It seems to be helping. I have had no exacerbations in two years, but the most important thing is when you do something proactive to help yourself, you feel better mentally and emotionally. With this disease it is very important. It is so easy to throw in the towel and that is the worst thing we can do. Good luck to you and hand in there.

Wheaton, Md.: A dear friend was recently diagnosed with MS. Can you provide suggestions about what I can do to be a supportive friend? She lives on the other side of the country, so that limits what I can do on a daily basis. But we talk and e-mail frequently, and visit from time to time.

Jennifer Huget: Wheaton: What a great and thoughtful question. The best things you can do are to keep treating your friend like the person she was before her diagnosis and to avoid sounding like you pity her. Keep talking and e-mailing--just not about MS all the time.

North Bethesda, Md.: The both of you are to be admired. You both appear to be taking the opportunity to take an unfortunate situation and make a positive out of it by touching a lot of people's lives in a real and meaningful way. (1) How has the disease changed your mental outlook about life? (2)What is the most important thing you would want to tell people about it?
Thanks for you time.

Teri Garr: Thanks for asking.
Oddly enough, this disease has made my life so much better than it was before.
I now appreciate what I have and I am not running around like a rat in a maze.
I took a step back and assessed what I have.
Yes I have a disease, but I also have a lot of other things.
Being able to tell people that they can help themselves has been wonderful for me.
MS doesn't define who I am.
I think that is the most important thing I can tell you about the emotional aspect of this disease.
I have one more thing to say.
If you get a diagnosis, get on a therapy, keep a good attitude and keep your sense of humor. It really, really helps. Hang in there!

San Francisco, Calif.: Dear Terri,

I have LOVED your work for many years. You are one of the Greats. So, my question: given your amazing sense of humor (demonstrated so well in your film and TV work), have you relied on humor to get you through this? Have you read Norman Cousins book on humor and illness? What's your take on that? Good luck and Godspeed to you.

Teri Garr: Thanks for your thoughts.
I have used humor and of course some very good medicine.
I haven't read Norman Cousins book, but I support him if he says use your sense of humor to get through sticky situations.
Thanks for being a fan, you have very good taste!

Washington D.C. : My sister has had a battery of tests, including MRIs, a spinal tap, etc. -- and doctors believe she has MS. But they have been unable to make a final diagnosis for the past year. More tests are scheduled. But this has delayed her receiving medication to ward off symptoms.

Do a lot of MS patients have this problem with getting the final diagnosis? Thanks for your Q and A and articles yesterday -- they were very helpful.

Jennifer Huget: Well, D.C., from what I hear, your sister's not alone. MS can be hard to pin down (though my MRI and spinal tap made it perfectly clear that I had it. We all hope that someday they'll find a more definitive means of diagnosing MS. You say "doctors": has your sister sought a second opinion? Good luck.

Richmond, Va.: I was diagnosed with MS in 2001, and it has been hard for me to talk about it, even with other people with MS. What were your coping strategies? Thank you.

Teri Garr: I understand how hard it is to talk to people about MS.
I am sure you don't want pity, or random advice.
I felt the same way.
I think it's a personal decision who you tell, because there are so many myths about MS and people don't really understand what it is.
The most important thing is to know that there are people you can talk to. You can keep it to yourself, but you could also call a support team like the team at MS LifeLines. They are there to support the MS community and give good advice.
I have heard all kinds of stories about telling employers about MS and I really don't know what the answers is. I personally am a private person, but I have found support by talking to my fellow MSrs in the community. It took a while though, so take your time and if your not on, get on treatment! Good luck.

Washington, D.C.: Hello,

I just wanted to know if this disease keep you angry and bitter towards other people most of the time?

Jennifer Huget: Hi, D.C.: Oh, dear, no. You mean because I have a disease and they don't? I try really hard to maintain good cheer and enjoy life; anger and bitterness don't help anything. But I do sometimes wish healthy people would take a moment to be thankful for their good health. Not that I ever did that before I was diagnosed....

Washington, D.C.: Hats off to you for coming forward. I also have a chronic illness and talk about it sometimes -- folks seem dumbfounded. I am not my illness. I may help someone else who has it and also help others stop feeling shame. Go Girl!

Teri Garr: Thanks for sharing, I feel the same way.
We are not our illnesses.
Keep up the good attitude.

Centreville, Va.: You mentioned earlier that MS may be genetic. What have you heard? Are their any genetic tests? My mother has a severe form of MS; in addition, I have had 3 other distant relatives who had MS. I am scared I may develop it, or I may pass it on to any future children I may have -- and I am considering not having children. Thoughts?

You are both an inspiration; I wish my mom had your outlook!

Jennifer Huget: Hey, Centreville: I didn't mean to suggest that MS itself is genetic; some researchers believe that certain people may be genetically predisposed, but that they don't actually get the disease until some other triggering event occurs. And not everyone even believes this. About children, well, I wouldn't want to have missed out on having my own two for anything (though I didn't get diagnosed til after they were born), and lots of people with MS do go ahead and have kids anyway. They're too wonderful a part of life to forego!

Arlington, Va.: Are either of you in contact with Richard Pryor, who is also living with MS, if I recall correctly? How is he doing these days? How is that he seems to have been stricken much worse; are there different types of MS?

P.S. You were the best thing about Young Frankenstein!

Teri Garr: I knew Richard Pryor years ago.
But I have not seen him lately.
I hear he is doing okay, but does have a more progressive form of the disease. And last week at a MS fundraiser his daughter, Rain, shared she might be experiencing symptoms herself, but testing has not been conclusive. However, they both have been tested for a sense of humor and fortunately they have it. And that will help a lot.
There are different types of MS. That is why it is so important to see your doctor if you are experiencing symptoms. Early diagnosis is crucial, because then you can get on treatment. The sooner the better.

Deming, N.M.: How is it raising a 10-year-old? Is she understanding of your limitations, or do you think sometimes she doesn't totally understand it all?

Teri Garr: These days ten year olds are very wild!
So she keeps me going.
She doesn't think of me as having limitations and neither do I.
Since she is only ten she doesn't understand a lot of things about life, but I am trying to teach her that it is how you look at something that makes it good or bad.
I think she gets that and I do too.
I am grateful to have her....most of the time!

Austin, Tex.: Thanks for taking the time to talk with us all.

My wife was diagnosed a couple of years ago and is on a chemotherapy trial. Her symptoms are usually mild with occasional little exacerbations. In fact, I usually forget that she has MS at all. My question is: Do you feel like it's okay for me not to be constantly aware of my wife's illness?

Jennifer Huget: Austin: The very best thing you can do for your wife is to usually forget that she has MS at all. Maybe that will help her forget sometimes, too.

Berryville, Va.: What are some of the signs of MS?

Jennifer Huget: Everybody's symptoms are so different (which is one of the reasons this disease is so tricky); my left fingertips tingled, and I had a numb patch on my cheek. Teri has weakness on one side of her body. Other people have vision problems, or they just suddenly feel incredibly clumsy or stupid. Fatigue is a huge and common symptom, too. There's not room here to list 'em all: you should check out the National MS Society's site.

Washington, D.C.: Hi Teri,

I admire your courage to come out and tell people you have MS... I also have it but have not told anyone. My question is: why have you chosen to use Rebif (the newest released drug) instead of Avonex? Thank you.

Teri Garr: First of all, it's up to you who you tell and who you don't tell. It's in the constitutions d..m..t!
The decision to take therapy is between you and your doctor.
I am taking Rebif and not Avonex because Rebif has the highest dose of interferon, has a smaller needle (it's less painful for me), and the doctors I respect say they believe it's better. Good luck in your decision. Also, keep your sense of humor, it's critical!

Arlington, Va.: I would assume you both draw a certain amount of strength from educating people about MS. I would like to know when the most difficult personal moments come?

Jennifer Huget: You're right: talking with people about MS makes me feel like at least I'm able to do some small thing to help, and it gives me a (probably false) sense of having some control. For me, the hardest personal moments come out of the blue: I'll just be going along, doing whatever, and suddenly the thought flashes into my mind: I have MS. But I find that everybody I talk to about MS is supportive and nice and really fascinated by the whole thing. And some people even can manage to share a laugh over it, which is the best thing of all.

Washington, D.C.: Hi! In the interview in the paper (which was great, by the way) Ms. Garr said that she thought that people who have been diagnosed should get on treatment, but that seems to imply that diagnosis is so black and white.

What do you think about people for whom MS can't be diagnosed or ruled out? I had an episode, with lesions on my spine, none in my brain, and a clear lumbar puncture. My doctor said that although she can't rule out MS, she can't diagnose it either and wouldn't put me on treatment. There must many others in a similar situation. Do either of you have any thoughts about the possibility of treatment in such circumstances?

Teri Garr: This is almost exactly what happened to me.
Lesions on my spine and not on my brain and a clear lumbar puncture. It's true.
Keep going. Have you had an MRI?
One of the reasons my diagnosis was not in black and white was because I didn't want it to be, so make sure you don't have what I had. Denial with a capitol D.
If you get a diagnosis there's treatment, so don't be scared. If you don't get one at least try to get it ruled out. Good Luck! I wish you the best!

Fredericksburg, Va.: How close are we to a cure?
(Concerned Mother)

Jennifer Huget: Dear Concerned Mother: Well, closer than we were ten years ago, I think. But the big deal for people being diagnosed now is that, while there may be no cure anytime soon, there are treatments that can slow things down. I'm pretty confident they're going to figure this whole thing out, though, and there are so many smart people working toward that goal, it gives me hope that something will click sooner rather than later.

Jennifer Huget: Wow--I can't believe how many great questions you all sent. I'm sorry we couldn't type fast enough to answer them all. Thanks for spending the hour with us!

Washington, D.C.: I gather that you are using an AFO (ankle foot orthosis) do you have a hard time finding shoes to accommodate the foot brace? How do you get by when you have to wear formal outfits -- bulky shoes definitely do not go well with them.

Teri Garr: I do have an AFO.
And yes it is hard to find shoes.
Manolo Blanhik hasn't come out with his MS line of shoes yet!
I am waiting!
In the mean time, I wear Teva sandals and Puma velcro strap sneakers. I have created a new chic look and it's working for me.
There are some really expensive french shoes calle ARCH for formal occasions, but I am not very formal, as you can tell.
Good Luck.

Teri Garr: Thanks for all your great questions.
Let's do this again over coffee.
For those of you interested, I refused David Letterman's proposal of marriage for obvious reasons, but thanks for asking.
 

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