HOW CAN WE RAISE AWARENESS ABOUT ACUTELY ILL MSers

[sjc314]

I FEEL PRETTY BAD ABOUT THE LACK OF AWARENESS FOR ACUTELY ILL MS PATIENTS.

Case in Point: East Wake’s Briana Holder has Warrior-like response to MS diagnosis

The overall tone of this article is "MS? No big deal."

“At first, I was petrified,” Holder said. “But I knew everything was going to be alright, and then I didn’t have (any) more worries.”

Yep. No more worries. Until the next relapse. Until it progresses. Being diagnosed so early in life does _not_ portend an encouraging prognosis.

"Treatment slowly helped the symptoms fade in the background"

… or maybe it just faded all by itself. That's called the "remitting" part of Relapsing-Remitting MS.

I understand that everyone loves a heart-warming story of victory over adversity, especially by a young girl. And I understand that everyone wants to be positive. But when the average Joe or Josephine reads sugar-coated pap like this, is it any wonder that they think MS is no big deal? Why do we need lots of money for research? All you have to do is be a "warrior" and everything will have a happy ending. Stop complaining. It's no big deal.

“As long as I keep taking my medicine, (MS) shouldn’t change anything drastically.”

Blast! My wife should have just kept on taking her medicine. I guess it was her fault.

[Thinkimjob]

Well, sjc314, that sounds just about as good as cure, now doesn't it?
"As long as I keep taking my medication, MS

[Thinkimjob]

Please stitch this onto the last post I just accidentally posted before I was done.
I was up to "MS should't change anything dramatically", to which I was going to reply, "yeah, right."
I can see why people in the public eye want to keep things on the positive side.

And I wish her well, and no doubt the journalist who wrote the story thought 'Warrior woman beats MS' is a more reader-friendly story, than '"MS ruined my life," says woman no-one has ever heard of, who can't walk anymore.'

If two-thirds of MSers will become SP at some stage, then surely ignoring that sad fact helps no-one.

[TaoWarrior]

Thank you all.

I have been failing pretty steadily and feeling pretty rough about myself. With all the pretty pictures of people with MS I was starting to feel like it was me that was the problem.

I applied for disability and am waiting for a hearing but my neurologist doesn't agree so I probably will be declined. Of course my neuro tells me "I have a patient with brain damage that still works" Great for him does he have muscle spasms, leg weakness to go with his cognitive loss? Oh he doesn't so he can't be a programmer anymore but he can still be a walmart greeter well bully for him. I can't stand or walk long enough to even be a walmart greeter and with the cognitive issues I sure as heck can't program. It took another database administrator a week to fix a database I screwed up and the whole project was supposed to take less than a week. I didn't even know I was screwing up.

I can't do the high level work which would allow me to sit and work cause I'm stupid now and I can't stand or walk enough to do trained monkey work so what the heck can I do. Meanwhile Montel can still go snowboarding so clearly the problem is me.

All the donations to societies go to salaries advertising and research while we are stuck buying our own medical equipment when we can't afford to work in the first darn place. I get so mad and frustrated.

So thanks for a thread and thanks for letting me vent.

[KatieAgain]

Well...my Mommy instincts just activated.

The young lady reverenced in the article is a teenager. If I was her parent, I would want her to keep the attitude she currently has and keep on doing what she is doing.

She is very young...her future will most likely be brighter than ours due to more scientific advances. She should be optimistic and I am glad she is pursuing her dreams.

If this article was about my 52-year old ugly mug...different story completely. The teen is not an acutely ill MSer...her challenges and hurdles will be most likely different than ours.

It was bad enough being diagnosed in my 30's...could not imagine being diagnosed as a teen. She deserves her moment...

[JerryD]

Raise awareness ? How about Raise Urgency ? MS= a kick in the shorts! Ouch !

[deb46]

I have been a member of MS World for many years. I took a long break from this group, several years really. I felt like I might not need to be reading some of the posts, that they might be bringing me down.

I started joining some of the MS groups on Facebook. It was nice at first but as time went on I got tired of seeing all of the sexy posts. All of these people posting all of their sexy pictures, talking about what all they were doing etc.

Today for some reason I just logged in to this group and saw this thread. It hit me right in the face. All you ever see are all these people with MS climbing mountains, running marathons, etc and doing great. Where are all the people that are not as lucky as these mountain climbers at?

Don't get me wrong, there are a lot of people out there that are much worse off than I am. I can still walk with a cane but this disease has totally taken my life as I knew it. So much has changed for me. I want people to know MS is not a bed of roses for everyone.

I would love to be able to go to my grandkids sporting events in the summer, but MS won't let me. I want to take family vacations, but MS won't let me. I want to be able to work again at a job that I truly loved, but MS won't let me. I would like to have a partner in life but since I have so much trouble with fatigue and taking care of myself I just feel like, MS won't let me.

I agree with this thread, people need to be aware of those with MS who are not as fortunate as some others. People need to see the real facts about MS!!

[waterguy]

Well said.

It seems with MS, when a celebrity or some national figure is diagnosed with MS, you may hear. However, once progressive, you no longer hear or see anything about them. Once it becomes progressive, MS loses the face and spokesperson.

I blame society, as everyone wants to hear about the person battling disease and doing well, hence all the interviews and specials. Once the upbeat side is gone, they won't have an audience for the person who is on the progressive side. They don't want that reality.

I also think the MS organizations tend to show people doing well as motivation for giving. People see it as hope, and justification that donations have led to advances that help people live these lives now. It offers the rose tinted glasses society wants.

While not MS, people were brutal when Michael J Fox spoke and Mary Tyler Moore needed help accepting her award. People basically said they should have just stayed home. They couldn't take seeing stars as they are now, not as they were.

I also think since MS can be so different and not everyone progresses and rate of progression varies, it takes a backseat to ALS, Parkinson's, and other diseases that are more consistent in outcome.

Just my rambling thoughts.

Well said I would say.

[tracibk]

80-year-old woman overcomes handicap to compete in Senior Olympics......stuff like this makes me FURIOUS! This is why people don't get a realistic picture of ms.....this article popped on by facebook (it looked like a tv station piece). She has had ms for twenty years and was in a wheelchair and drove her car with hand controls. Then she went to some Lifestyle Center for physical activity with therapists.... starting out with her rollator, then a cane, then nothing. This paints a picture that if you have ms and you work hard enough you can get better!! I wish that were the case.......we all do!!!!! I could just go on and on about this.......