HOW CAN WE RAISE AWARENESS ABOUT ACUTELY ILL MSers

[DeeElle]

HI! WE JUST HAD OUR LOCAL MS WALK YESTERDAY. I DIDN'T PARTICIPATE BUT I WATCHED A FEW MINUTES OF COVERAGE ON TV. I FEEL PRETTY BAD ABOUT THE LACK OF AWARENESS FOR ACUTELY ILL MS PATIENTS.

I SEE THINGS HERE AND THERE ABOUT MS BEING AN INVISIBLE ILLNESS OR THINGS DESCRIBING GENERAL YET MILD SYMPTOMS. I SEE NOTHING ABOUT PPMS OR SPMS.

ANY THOUGHTS?

[Thinkimjob]

I don't know. No one much wants to talk about it, except here.
It is as though MS progression is somehow your fault, when it is pretty much inevitable. (Yes, yes, I know the statistics, but toss the coin, and you're not calling heads or tails for SPMS. More like rolling a dice.)
MND, Parkinson's etc - it's somehow different. Their charities, fund-raising folk etc are quite okay with showing just how bad it gets, whereas with MS, it's all bouncy, blonde mountain climbers thriving on their DMDs, no cure expected.

[Jules A]

Excellent point and I think we as people with MS need to strip away the denial and open the blind eye to the fact that "there but for the grace of God go I."

I'm all for moving forward with my life and having a positive attitude but to act as if MS isn't a chronic, progressive disease capable of devastating disability is not only foolish but also insulting to our peers who are suffering such grave consequences of this miserable disease.

[heliotrope]

To be honest, I think it's a matter of changing perspectives on all of MS. I can't tell you how many doctors I've had tell me "well, all we have to do is get your MS better managed, and you'll be functional." And your plan to do that is???????? DMTs aren't a cure-all and aren't even effective for many of us (and in my case, have done nothing to stop progression) , yet many healthcare professionals see them as a "fix." If you have that problem in the healthcare world, what does the rest of the world see?
It may mean changing the discussion. Many of us feel like we're forced to hide our MS - or deal with the not so good consequences of being considered "disabled." Yet, that's stopping the world from understanding what we go through on a day to day basis.

[msgijo]

Many of us feel like we're forced to hide our MS - or deal with the not so good consequences of being considered "disabled." Yet, that's stopping the world from understanding what we go through on a day to day basis.

Looking back I can see where I was guilty of this - and still am to a large degree. Rather than admit how crappy I am doing I will attempt to hide it, and pretend that all is well. Part of it is that in trying to follow the "polite society" rules of not complaining and of never talking about how bad your health is, we are 'forced' to lie about how terrible things really are. I mean who really wants to hear about our urinary and/or bowel problems? And how many of us have the energy to try to explain what MS fatigue is really like?

Of course this hasn't helped me any. I can see that now. Did nothing but stress me out. But since I didn't want it held against me on my job, in my personal relationships etc I did it. So many people were shocked when I had to give it up and go on disability (SSDI). And it was my fault for not letting anyone know how much MS was affecting me.

And yes the medical society needs to be re-calibrated too. I LIKE my new MS Specialist. She listens to my concerns and answers my questions. But she still doesn't get it. She cant understand why I am so ready to go on "heavy hitters" to stop this progression when I "am doing so well with a 20+ year dx". And for her 1 or 2 relapses a year is acceptable .

So who is the first to step out and put their entire life at risk to tell the world the whole crap load of stuff we live with every day?
I truly admire people like Marc aka WHEELCHAIR KAMIKAZE. I almost envy him that his mind is so sharp. NOT that his body has so totally let him down so quickly. And even tho it is too much to ask of him and all other who have such progression, IMHO it will take the general population seeing that image to realize that MS is an evil disease that needs at least as much attention as AIDS was given.

It shocked me that a recent commercial? was pulled because it portrayed a woman with MS in a wheelchair, unable to talk or do anything but look and listen. Was it considered too 'extreme'? Hell, MS IS extreme!

As for the rest of us, maybe we should stop being so selfish about our status, and just be shocking honest when people ask "how are you doing today?".

[JerryD]

I have to agree with all of the previous posters! I have been on this board for several years and I have to say ' I HAVE MS AND MS DOES HAVE ME ! I don't try to hide it. I just try to get along without tripping over my feet. I hope that something changes within the 'entire' MS 'world' to find the 'cure' . I am so tired of all of the 'possibles' and 'encouraging' treatments coming along. I just ignore that kind of talk because it is all crap. As the saying goes, ' I'm from Missouri, Show me' !

[pennstater]

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.

[JerryD]

All of the previous posts illustrate the answers to your question. They summarize the 'lack of will' and unwillingness to approach MS as a disease with which to wage 'war' on. It always appears to me that there is no interest to 'wage war' on MS because there's no cash profit to be gained.

[PattiHNC]

Glad to see there are others like me!

I'm so glad found this site - up til now, I've just heard of people who were doing fantastic things even though they had ms. Even a yoga video I got from my neuro just had very normal looking people doing all kinds of yoga moves with no trouble. I found it really discouraging because there was no way I could do it. I was beginning to think I was crazy because I'm having so much trouble with it. I thank all of you for being real!

[msgijo]

It always appears to me that there is no interest to 'wage war' on MS because there's no cash profit to be gained.

I agree that this is probably the reason pharma doesn't push, but just think of all the money we, collectively, spend on the poisons which only half work to hopefully slow MS down. I know that I would gladly live in poverty for the rest of my life on the guarantee that THE CURE was here at whatever price they wanted to name.

[Poolwatcher]

From the Start I felt pressure to smile and act like MS wasn't a big deal. We have a destructive metaphor about disease . If you aren't successfully battling it like a brave soldier, you are seen as flawed and weak in character. Same goes for MS.

I am still able to (somewhat) surf. A surf buddy asked what it's like. I responded it's like surfing with 20 lb weights in legs, and 5 lbs on each arm. She was shocked and very kind. If we say nothing, how can we expect others to get it.

[palmtree]

Looking back I can see where I was guilty of this - and still am to a large degree. Rather than admit how crappy I am doing I will attempt to hide it, and pretend that all is well. Part of it is that in trying to follow the "polite society" rules of not complaining and of never talking about how bad your health is, we are 'forced' to lie about how terrible things really are. I mean who really wants to hear about our urinary and/or bowel problems? And how many of us have the energy to try to explain what MS fatigue is really like?

Of course this hasn't helped me any. I can see that now. Did nothing but stress me out. But since I didn't want it held against me on my job, in my personal relationships etc I did it. So many people were shocked when I had to give it up and go on disability (SSDI). And it was my fault for not letting anyone know how much MS was affecting me.

And yes the medical society needs to be re-calibrated too. I LIKE my new MS Specialist. She listens to my concerns and answers my questions. But she still doesn't get it. She cant understand why I am so ready to go on "heavy hitters" to stop this progression when I "am doing so well with a 20+ year dx". And for her 1 or 2 relapses a year is acceptable .

So who is the first to step out and put their entire life at risk to tell the world the whole crap load of stuff we live with every day?
I truly admire people like Marc aka WHEELCHAIR KAMIKAZE. I almost envy him that his mind is so sharp. NOT that his body has so totally let him down so quickly. And even tho it is too much to ask of him and all other who have such progression, IMHO it will take the general population seeing that image to realize that MS is an evil disease that needs at least as much attention as AIDS was given.

It shocked me that a recent commercial? was pulled because it portrayed a woman with MS in a wheelchair, unable to talk or do anything but look and listen. Was it considered too 'extreme'? Hell, MS IS extreme!

As for the rest of us, maybe we should stop being so selfish about our status, and just be shocking honest when people ask "how are you doing today?".

There are no acceptable levels for MS progression. Not one new lesion!

[palmtree]

Five years ago when I was diagnosed, I could never imagine not being able to scamper around at my own free will.

I wonder why this disease attacks the legs so much. I think. ' I could do it before. Why can't I just do it?

[Poolwatcher]

Maybe we notice it more in legs. Even a mild change is noticeable?

[JerryD]

Maybe we are losing sight of the real problem. We have MS and it DOES HAVE US. MS is a chronic, disabling and destructive disease. The facts are that there is not enough willingness and motivation to find the 'cure', And if there is a real concerted effort to find the cure, explain them to us, here. I can wait. We all know that the current efforts are not cutting it . If curing MS was modeled on the 'space program', it would be 'cured' in under 10 years.