This Is MS Multiple Sclerosis Community: Knowledge & Support

Teri Garr (actress with MS, spokesperson for NMSS) will be on the Larry King Show on CNN tonight, 9 est, talking about her MS. (Jan 17)

I certainly plan on catching it! Thanks, Wesley!

Deb

DOES ANYONE ELSE WHO IS WATCHING THIS FEEL TERIGARR ISNT DOING ANY OF US ANY JUSTICE? SHE SEEMS TO JUST KEEP ROLLING IT ALL OFF AND ACTING LIKE IT IS NOTHING. THEY ASKED HER IS IT PAINFUL, AND SHE SHRUGGED AND SAID NO, THEN TRIED TO CATCH HER SELF AND WELL NOT FOR ME, I FEELLIKE AS I SIT HERE IN PAIN, AND SEVER UNCOMFORTABLENESS, THAT SHE ISN'T HELPING ANYONE UNDERSTAND IT? WAS WONDERING IF JUST ME OR ANYONE ELSE FELT THE SAME?

It seemed to me that Teri Garr's MS is milder than most, or perhaps her MS is bothering her in a way that she really doesn't think fast enough to give deep thoughtful answers, I couldn't tell. She is on Rebif she said and has had no new lesions. She is a 'paid ambassador' for MSlifeline, sponsered by Sereno and Pfizer.

Fred Lublin, MD was on as the medical expert. He is on the board of NMSS. He gave the party line: MS is probably an autoimmune disease, possibly some pathogen, there is some genetic aspect, 500,000 people in the US with it, 2.5 million worldwide. Then one of the panelists mentioned Montel Williams' foundation estimate of over 1 million in the US. It would seem to me that as long as it takes for a diagnosis, there could be alot of people over the 500,000 number who just haven't been diagnosed.

Meredith Viera (from the Point TV talk show) and her husband Richard Cohen were on. He has had MS since he was 25 and has alot of difficulties with vision and balance. He has a book out now in paperback called 'Blindsided'.

Alan Osmond from the Osmond Brothers was on again. And Larry King's friend, ?Ken? Barondess, a lawyer with MS.

There was really nothing new on the show. The doctor said there are 6 treatments available in the US. I think Alan Osmond mentioned Daval which he got in England, seemed to be helping him.

There were some callers with questions but nothing new or unexpected in the answers.

Anyway, I think it is good that Larry King gives air time to MS, but it would be good if he brought in new people next time.

Wesley

I HAVE NEVER SEEN ANY OF LARRY KING LIVES SHOWS ON MS BEFORE AS I WAS IN DENIAL FOR QUITE AWHILE AND DIDNT WANT TO HEAR ANYTHING ABOUT IT OR ANYTHING. SO TO ME IT WAS NEW, IT JUST SEEMED LIKE TERI WAS A BIT AGIGATED? THAT SHE HAD TO TALK ABOUT? AND I FIQURED AS A PAID AMBASSADOR FOR NMSS, SHE WOULD HAVE REPRESENTED THE MS COMMUNITY IN A WHOLE MORE, BUT YES I AM GLAD THAT LARRY KING HOSTS THESE SHOWS, TO MAKE ALL AWARE.

I got a phone call from a friend who had just seen the show and told me I HAD to try and catch it here. (One of the benefits of living on the West coast)

I guess any focus, especially with a few well known names, is a good thing. I agree with Wesley as far as the content though. Certainly nothing new or surprising. But then not everyone is as immersed in MS study as many of us here are. Had I seen the same show just 6 months ago, everything would have been a revelation.

I think the only little tidbit I came away with was that Alan Osmond mentioned that he was taking an oral med. I have not read a whole lot about Daval and Amispro - I guess I just assumed it was an injectible.

Aimspro is indeed an injectable... curious what Mr. Osmond was referring to.

And did he say anything further about Daval and Aimspro aside from it seemed to be helping?

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I caught the show last night, also.

I always wonder how the incoming calls to put on the air are screened. I was SO tempted to call in myself and see if they would put MY question(s) on the air! HAH!

I thought this show (as compared to the one he did with Nancy Davis - I even wrote a pretty strongly worded letter to Larry King about THAT show - that one was atrocious) was a tiny bit more representative of MSers, but not by much.

I noticed there was still a big "push" for pharmaceutical companies, also. I kept thinking, "Ok, here comes the commercial portion of the show". I say let's put Michael Moore on a talk panel regarding MS.

As far as the doctor goes, I personally thought he merely played it safe is all. Stayed pretty neutral with his comments. The good thing that I saw was that he at LEAST told everybody how much was still NOT known at all. That the doctors are merely just "guessing" with MS.

I don't know, I still get the feeling there is still a lot of downplaying about the mystery of MS. I realize you want to keep people hopeful, but on the other hand, you aren't going to get non-MS people mobilized at all to feel outrage or passion about the disease, ya know? These shows seem to be geared to MSers alone, as if people without MS won't be watching anyway. Defeatist attitude (about getting the general public to become involved) coming through right from the start, in my opinion.

The difficulty I'm having right now though, is describing what I feel is "missing" from delivering the message about MS. I can tell you one thing, though, (and I've heard this same thing from others), as far as it being so "wonderful" and "supportive" from friends and family when you have MS..........yea, right! Let's portray how it REALLY is living day to day with MS, and how it REALLY affects an MSer's relationships, jobs, friends (most of whom don't understand and say hurtful things), and families - emotionally, financially, and every other way!

Deb

EDIT: Yep! That's what I feel is missing. The complete disregard for portraying ACCURATELY, the socio-economic affects MS has! None of those people struggle with finances, insurance, spouses, jobs, etc. They are all well to-do and make everyone believe that there is so much "help" out there for MSers, then what is the big deal about the disease? Try to get disability for MS from Social Security one time, and then tell us how "easy" dealing with MS is!

I'll add a 2nd request for any information about 1) what oral med he is taking, and 2) how is he is doing on Aimspro? He has some comment on his website about getting Aimspro approved here "so he can get it" but I guess I always assumed he's still been on it!

You know what else I did notice? That none of them on the panel were making very clear the differentiation between what they were taking for MS "therapy", as opposed to taking something for MS "symptoms".

I think that's where some confusion is coming in. Most people don't realize there is a big difference.

Osmond might have meant, but he wasn't real clear with anything he said, was that what he is taking now is simply something for symptomatic relief; that would explain a lot.

Deb

EDIT: For instance, Osmond said he took something CALLED "Daval". Daval isn't the name of the drug. He said mixed up things like that quite often, I thought.

SECOND EDIT: Ok, I've gone over the transcript again. If Osmond has been diagnosed with primary progressive MS (like he said on the show), and he's being "treated" right now in the U.S., there is nothing that he could possibly be taking here in the U.S. that is "oral" for primary progressive MS. Only something oral for his symptoms. The U.S. has no real treatments for progressive MS at ALL, other than trying Novantrone (i.e. chemotherapy), which you can only do for a short period of time because it's so strong. See the confusion?

CNN Larry King Live Transcript

http://transcripts.cnn.com/TRANSCRIPTS/ ... kl.01.html

I found that the show didn't tell me anything that I didn't already know.

I also wanted to call in and ask why there isn't more being done to make people more aware of MS. It is so widespread. Breast cancer and depression, as an example, is seen in commercials and talk shows and very widely publicized but you never see or hear about MS, its effects, treatments and what is being done about it.

I didn't know a thing about the disease until I developed it. I had heard OF it but knew nothing ABOUT it which I think is the case for most of us. I didn't even know there was a Multiple Sclerosis Awareness month until recently, (which if you didn't catch my post back in September) is March. They never mentioned that either!

And I expected to hear more from Terri Garr.

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Karen (OneEyeBlind)

* I don't suffer from insanity, I enjoy it!

Karen,

I agree. With those other diseases you mention that DO get a lot of attention, if you think about it, how are they portrayed? Pretty graphically and how "devastating" those diseases are.

How is MS portrayed again? "Oh, it's not so bad!"

I hate to say it, but "marketing" is everything.

Even the NMSS says its mission is to "end the devastating effects of MS". We can't do that, or even support the NMSS's mission (or anybody else's for that matter) until we make it clear that MS IS devastating. Not just "inconvenient" and "bad luck", mind you..............but "devastating"!

Deb

Well either Osmond has severe cognitive dysfunction (possible) or there is something going on here that we don't know about. Daval makes Aimspro which is a weekly injectable as much of you know.

Strange.

Daunted,

I was going to mention the cognitive issue, also. Even if you read the transcript, you can detect it pretty clearly..........particularly with regard to Osmond (which would only be understandable, especially given the type of MS he has, plus the length of time he's had it.)

Deb