Scare tactics and M.S.

[journeyman]

I don't like my M.S. anymore than the next MS'er but I am tired of MS being used as a scare tactic by the media.

Last night my wife and I went to the new movie, [I]Hearafter[I]. At one point in the film an actor was talking to another actor and he said, "His wife died - M.S. you know." My wife and I turned and looked at each other and just shook our heads.

Now since I was dx'ed with MS I have heard of countless accounts on TV, Movies, Newspapers articles and fiction. Where they have used the words "M.S." and "died" or "dead."

We have enough trouble dealing with our MS and the newly dx'ed dealing with the thought of "dying" from it. I guess that's why they call it fiction.

Somehow, someway with have to get the word out that MS is not a terminal condition. I plan to start writing some letters. I wish this board could carry the burden. But it seems that only people with this condition are the only ones who seek shelter and truth come here. Even the medical discussion are probably only viewed by people researching the subject or us.

I am just growing tird of the untruths and scare tactics. Fortunately for me I'm an RN and knew all about it on the delivery of my dx or it would have given me a cardiac arrest.

I would like to hear you thoughts on this subject.

Thank you all for being their for me when I needed your help, advice and support
J.
Dave in Tampa, Florida

[zoysia]

WOW!

And I thought Hollywood used/uses lots of experts to "get it right" in the movies. Oh! Sorry, that's only scientists to get the science right. Hey filmmakers, what about medical experts? To get the medicine right?

I'm with you on this, journeyman!

[kittin]

I agree

Maybe that is why when I tell people that I have MS, they call others to comment on how well I look. Maybe they are marveling how a dying woman looks!
You are right, I never used to hear about MS but now, it seems we should be lining up to pick out our coffins.
I don't even discuss my condition with my relatives. There is no sympathy there or there is only pity. Most don't call or come as if I am already gone.
I am hanging on and trying not to get an attitude for others attitudes. I am too tired to write letters for help let alone to complain about another's ignorance. I wish you well.
God grant me the Serenity to accept........

[Jules A]

Being newly diagnosed with anything is a frightening roller coaster but I don't think that means we need to sugar coat things. I personally prefer the cold hard truth so if readers are feeling fragile they might want to skip the rest of this:

But the sad truth is that many people do die from MS or if we want to split hairs "complications of MS" which means basically the same thing.

Frankly croaking from this miserable disease was and is the least of my worries. As a nurse I've cared for far too many people who have been robbed of everything thanks to MS which actually makes death rather appealing to me.

[Tawanda]

Another post NOT for newbees!!

But the sad truth is that many people do die from MS or if we want to split hairs "complications of MS" which means basically the same thing.

Frankly croaking from this miserable disease was and is the least of my worries. As a nurse I've cared for far too many people who have been robbed of everything thanks to MS which actually makes death rather appealing to me.

I feel the same way. Somewhere on this M.S. journey of mine, I've concluded that I am less frightened of dying than I am of living extremely disabled. I try not to look too far down the path ahead, and that is how I survive evey day.

As far as it being implausable to die from M.S., I have to respectfully disagree as my mother died from M.S. complications at age 45. If you had seen her - looking like Christopher Reaves at the end - I think living was a lot harder than dying for her.

I was unable to get life insurance since my diagnosis, so apparently the Insurance People are not candy coating it! My husband got life insurance, but the odds are I will die 5 to 10 years earlier than him...at least DD will be covered, and that is the main objective. Especially if she inherits my M.S. producing genes.

[Shabesh]

I agree.

You're right, not for the newly diagnosed, but I agree with the both of you.

[Alicious]

I know coming into this diagnosis I was WAY more scared of it than I needed to be. Don't get me wrong, I find the illness terrifying because of the unknown, but before I really looked into it I thought it was a sort of death sentence. I've never been so happy to read Dr. Google in my life.

I wonder if writers are just picking up on that base level of ignorance and going with it, since the vast majority of us wil not be dying of MS complications?

That being said, Tawanda, I am sorry to hear that MS caused your mother's passing. What a cruel way to go.

[journeyman]

Points of view.

I understand your points of view but we are pretty hardened to all of this MS stuff.

My meaning was that a lot of people do come here new and raw seeking help and support. Perhaps we should start a new thread called "THE DIFFICULT TRUTH." If they want to know it. I came here for help with medications, what to expect and support. Nobody came to me in that difficult time and said, "Buddy...your gonna die!"

Its my opinion that that is the position of the Doc's need to take. It is true what you say. I have had days when I would rather die than live with this.

When working in the hospital I learned how to separate the two kinds of patients. If they say, "I'm dying aren't I?" That meant they were ready for the truth. If they said, "Am I going to die?" Then they weren't.

I'm pretty battle hardened now. But when I came here I just wanted to talk to someone who had been there.

I agree with all your opinions but I just think there is a time and place. Thanks to all of you for your input here.
J. Tampa, Florida
Dave

[gomer]

Now J.man.........

Your CogFog is showing, crawl back under the FAN, the heat is getting to you........

Here is bit of human nature, some forget from Psyc 101.

-1- it takes one to know/understand one.

-2- if you have something, you NOTICE it more elsewhere.

-3- good press, bad press, any press, make sure they SPELLED it right.

FACT..stasticly speaking, few die due to MS complications, but people DO DIE from MS as well as Diabetes (I am also a needle diabetic) and other diseases. A friend that works as a store greeter, so I see her once in a while, had a son that DIED from MS. He had a very progressive form of MS. He was bed ridden and in a care facility at a young age.

J.man.. what I would Rx is a goal of BALANCE. Maybe write the producers, script writers etc ASKING nicely to "balance" past portraial with MS portraid as an obstacle that many right every day and even WIN a few battles. That peole with MS DO lead productive lives and often invisable to others.

Bottom line IMPO is seek balance, ANY press is still press, like it or not. Instead of runnign form the cloud, seek the silver linning.......where ever it hides.

Doc Gomer Doctor of, Been There, Done That.
(Hav'n Fun picking on ya J.man....lol)

[Ceci]

-1- it takes one to know/understand one.

-2- if you have something, you NOTICE it more elsewhere.

-3- good press, bad press, any press, make sure they SPELLED it right.


FACT..stasticly speaking, few die due to MS complications, but people DO DIE from MS

I think I love you! Sage words of advice!

Last night my wife and I went to the new movie, [I]Hearafter[I]. At one point in the film an actor was talking to another actor and he said, "His wife died - M.S. you know." My wife and I turned and looked at each other and just shook our heads.

I think the key words here are "actor" and "movie"! Of which neither are a reliable source for MS!

Be well,
Ceci

[Lendi]

My DH had a really hard time dealing with my MS because of well meaning friends who all knew someone who had died from MS. Like he really needed to hear that..not.

Wish there was a more balanced view as well. I guess, what i'm trying to say is I know I'm going to die from something sometime, but it's not going to be anytime soon if I have anything to do with it.

Plus, it seems as though more and more is being learned about our DD everyday. Who knows when a break through or cure will come about. I personally prefer to look at the positive and maybe try to educate those around me.

[LL60]

The first 2 years of "House" they always thought it was MS. At first I thought it was just me, then I pointed it out to my sister and she would call me during a show and say "OMG,you're right." I never noticed that. They seemed to have stopped doing that.

It made me mad at first. I thought here that is the first thing they thought of. When for years and years, that never even entered my own doctor's mind. He blamed it on everything else. When I got my dx 12 years after the first sx showed up, my first question was "Am I going to die."

I started out with a point to bring up. Have no idea what it was. Going to post this anyway. That in itself brings up a point. We may look good on the outside, but our brains are being eaten up on the inside. Don't judge anyone.

I'd give anything to not turn into this dumb, forgetful person who blurts out the most inappropreate stuff all the time. But here I am. OMG. I forgot what I was going to say again!!! Better get off here. Have a good day everyone.

[MrsBones]

I think the key words here are "actor" and "movie"! Of which neither are a reliable source for MS!

Exactly! Wouldn't be good drama if the line was, "His wife died - flu you know." but the flu does kill people, thousands per year in the US. Far more than MS does. Since fewer people know anything about MS it would seem more mysterious, exotic and possible than a million other more common and more lethal things the screenwriter might have chosen. Thus, better drama.

Or maybe the screenwriter lost someone to MS?

The fact is that people do die from MS or its complications. Works of fiction do have deaths in them... should they not say what the characters die from or only use diseases that are 100% fatal? Or only have accidents and murders? Wouldn't it make some sense to have an element of surprise and a sense of tragedy, with someone dying of something not usually fatal?

My feeling is that it's not the place of Hollywood to educate anyone about anything or make everything all rosy. It's virtually impossible to have any story of any kind that mentions a death that A) would be totally factual or B) not upset someone who has/had/experienced the thing that killed the character.

It would be totally different if it was a news report or documentary. Those I would expect to be factual. And yes, include the fact that MS is rarely fatal, but can be and that most of us have a normal life span. It is a fact, ready or not, newly dx'd or not, that we should hear.
We do need to face the fact that death by MS can in rare cases happen, but that much of it is preventable if we take care of ourselves.

A work of fiction, however? No....most of them are better when they make stuff up.Let's think about this for a second - the movie we're talking about is about a man who talks to dead people,yes? I wonder how many mediums they consulted.

Far more than MS specialists, I'm sure. After all, nearly every town has a psychic, but a good neuro, as we all know, is very hard to find.