The Fight Against MS- Friday, April 11 on Montel

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby gwa » Sat Apr 12, 2008 7:39 am

loobie,

You are spot on with your comments and have no reason to feel like you are being too negative. Montel has annoyed me with many things he has said over the years and I haven't watched his show on over a decade.

If you notice, people with MS that start sliding downhill are pulled from appearing in front of the cameras. How long has it been since we have seen Annette Funicello or Terri Garr? The MS'ers that are paraded normally haven't had the disease very long and are in the world of remission, which has nothing to do with anything they are doing. Watch and see how many are brought back during a relapse. HA, HA, HA.

Montel will get better ratings if the people he shows have had a magical "cure". The dopey clairvoyant that he has on weekly now, Sylvia Brown, is a scam artist, in my opinion, but he gets higher ratings with her and he seems to believe she is for real. So, take what he has to say with a grain of salt.

I wish that there was something "out there" that would help all of us, but the fact is that there isn't.

The little saying, "I have MS, but it doesn't have me," needs to be dropped kicked from our vocabularies, because it does have us and it makes most of our lives pretty pathetic.

gwa
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Postby cheerleader » Sat Apr 12, 2008 9:26 am

wow...
thanks, Lew, Robbie, GWA, Lyon, Terry,
Really appreciate the explanations, and I actually get it.
I understand how frustrating it must be to see the folks with milder MS portrayed as the noble "fighters", when in fact everyone is fighting like hell- with varying degrees of success. And that's not in our control. Perhaps, because we're still in the beginning of everything, I only want to see the "miracles." Call it magical, wishful thinking... it's not really honest.

also apologize for taking this thing personally. It's not about me, at all. I'm on the boards because I want to learn, and need the support. I was drawn here by the humor, brutal honesty and knowledge. Let's just leave it at a s&^tty week for me, some sleepless nights, and wildly fluctuating hormones.

and I still haven't even watched the stupid show! ha-
xoxox,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby rainer » Sat Apr 12, 2008 10:13 am

my smartass remark just meant that it is great he is raising awareness, just wish he was aiming it towards promising medical research instead of the more holistic approach.
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Postby nenebird » Sat Apr 12, 2008 10:32 am

Well, I saw the show and was kind of disappointed. It really didn't have any new ideas, suggestions. Lots of promo for Clay Walker but nothing really earth shaking.

I wish Montel would have talked more intimately about his journey. He did say he was not in remission (Clay Walker is) and he is fighting every day. I guess he wants us to buy his book.
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Postby Terry » Sat Apr 12, 2008 3:00 pm

Cheer and all,
You know when I went to the neuro the first (of two) times, he wanted to put me in the hospital. I was so bad that he thought I'd be safer in the hospital- do the MRI there and give me steroids and get me "better". (I had fallen numerous times and had a gash in my nose.) I told him no, I needed to work. I left there and drove myself back to work. I never missed a day!
Around that time I had to inspect a house and had to have my assistant go with me to help me get from the car, up the driveway, and up the steps. It was the most horrible time. I told her, "this is hard" and she said "I can tell". But I kept my appointment, though she had to go to the basement for me.
On Easter that year, I couldn't walk alone, but managed to prepare dishes for dinner at my sister's.
While sitting at work yesterday watching that show, my son, who works with me, was there. He heard the I have MS but MS doesn't have me thing and heard the stories of "kicking" it.
I said MS doesn't have him until it WANTS to, then it'll be a different story. I think I saw doubt in his eyes. I think it is hard for my kids to understand that things might get really bad. I try to do all I did before and I think they cannot see my MS very well.
I have always told my kids to be tough and strong and would NEVER want them to think that I laid down and let this thing run me over. But it might. If it takes me, it'll take me kicking and screaming.
Today I carried (with the help of my neighbor's son) a truckful (which I had also loaded) of marble tile for a bathroom remodel. (Step in shower) My legs felt like MS mush, but I did it. Tomorrow I go to my son's house to help them paint the downstairs.
I want to do everything I can while I still can.
I don't think shows like yesterday's will help those around me to understand that I had no choice when the MS decides to take over. It will do as it pleases, as it has done in the past.
I feel sad as I write this, because I really think I have no power in all this. The show yesterday would lead one to believe that I do.
So, humor...I need it.
Friends....I need them.
Family...I could not live without them.
My worst fear? That I will not be able to babysit the grandkids as needed as their parents work and try to make stable foundations for their families. I love watching those babies more than anything in the world.
Cheer, I tell you all this so you understand that the dark humor is what I feel much of the time. Please don't be angry with me or anyone here who makes light, finding hilarity in this crazy situation. For me, the dark humor goes hand in hand with my stubborn, I'll do it anyway attitude.
I really wish the best for everyone here. I have a "mother's" heart. I try to not be negative- I am not by nature. When the negativity creeps in, the best way to dispell it for me is to laugh.
So I laughed at Montel's show. Thinking that my kids might someday think I gave up would make me either laugh or cry. I'd rather laugh.

and Cheer, it IS about you. This thing has affected your family, and mine, and all the others. We all deal with it in different ways.
You think good, positive thoughts.
I'd rather heckle with Robbie.
Wishing you and yours ALL GOOD THINGS!
I rambled.

Terry
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Postby Loobie » Sat Apr 12, 2008 4:09 pm

Good thoughts,

Some of my roughest times were/are when my daughter has said things like (with tears in her eyes, and parents you know what that's like) "are you going to be paralyzed?". I always try and be honest, but I tell her that the possiblility exists, but at a very low percentage. She's 12 now and understands much better, and although she is very mature for her age, no 12 year old has a "long" enough view of the world to see what's really going on. Terry, that MS mush leg thing is one thing I get almost daily. We do these walkabouts in the factory with all the upper management. When those are over, I have to get to my desk for at least a half an hour. My legs don't really fully recover until the next day. But you all know what I'm talking about.

I tend to go for the facetious, sarcastic stuff myself as well. Cheer, if you remember, after your first post in Introductions I told you how lucky your husband was to have someone determined to DO ALL SHE CAN to find out what it is you CAN do. You have obviously done that and are still doing it. Your husband has the best possible deal being married to you. I don't know all the dynamics of your relationship, but I think he's pretty lucky as far as his health goes. But back to doing what you can. I think that's what Terry is saying; we 'ain't taking our hat out of the ring until we can't even throw it anymore. My last day of work will not be the day I puss out. It will be the first day that I absolutely, unequivically cannot do it anymore physically or cognitively. I can't imagine letting my mushy legs get me so scared that I drop out. And then go even one more step down the slope and think "damn, I wished I'd have worked a little longer". I will want those days back badly if I do that.

We have a friend who's ex-husband succumbed to the fear. She said he quit work while he was still able and tried to go on disability. He was still too "healthy" and was physically able to work, he just let it get on top of him. He became bitter and angry and pushed her away. Those of us who are refusing to give in are the heroes with MS (I can't believe I just called myself a hero). It kicks my ass on a daily basis, yet I still think about the alternative and it's just too scary. I think that's what we are all trying to say. The good fight is being fought by the people whose ass is getting womped on by MS, not by people in remission. Now don't get me wrong, I REALLY WISH I WAS IN TOTAL REMISSION, but I'm not and we just have to keep going on and living one day at a time.

Terry I hope there is a day where you have to babysit all of them at once and don't even get worn out. Wouldn't that be cool? Even though this post started out with us making fun of what "hard times" these slightly affected people are touting, it's made me think that maybe every once in a while we should just sit back and feel proud for staying in the game even though there are times we feel like we are one relapse away from a bed. So I say "here's to us. We kick ass! We're gettn' 'r dun against all odds". I'm going to take the rest of the day, watch The Masters (I've been there, it looks great in HD, but better in person) and feel good about myself.

That is something I haven't done in a really, really long time.
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Postby ssmme » Sun Apr 13, 2008 9:44 am

Everyone's is different and I applaud these people for finding what works for them, I just know there are many of us where that "right thing" seems to just be out of reach. Mine may be Tovaxin, someone else's might be Copaxone, but I think that shows like that can leave the uneducated thinking MS is really not all that bad. There are plenty of people out there who try and do EVERYTHING right that would beg to differ.


This comment hits the nail on the head. Right after I was diagnosed my mom talked to a lady who has MS that presents itself as optic neuritis with complete recovery between exacerbations that are spread 8 to 10 years apart. She(my mom) has made up her mind that ms is not that big of a deal and why can't I do everything I used to do because her friend can. Copaxone and aimpro are what that lady uses. I think I'm going to memorize the above quotation and use it when speaking to people who think all ms'ers are the same.

Montel means well but it's not all about feel good happy always a cure and a perfect ending where we all live happily ever after. This disease is not a fairy tale.

Is anyone out there a film editor? We could all share a Myspace page of the realities of ms and what we are all doing to get by.

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Real People with MS - video testimonies on the Web

Postby Longing4Cheese » Sun Apr 13, 2008 11:17 am

I'm not familiar with MySpace, having only gone there a couple of times when linked there by some performer or other. If such a space were created, would we (on this site, and/or other MS-ers) be able to upload our own video (or still photo + text, audio, etc.) testimonials? I assume that MySpace pages are controlled by an individual admin (it's not called "OurSpace"). Who would be that admin? Or could several people share admin duties? I don't see why not.

I guess I'm wondering if there is a way to do a kind of video "wiki" -- meaning a site to which people could add their own testimonial, rather than a site with authorship by only one person. I mean something like Wikipedia.

Could THIS website (www.thisisms.com) host a video testimonials section?

I wonder how viewers would get directed to such a thing. Word of mouth, links from MS websites, or maybe mention in a newspaper article. It could also be a place to direct someone to for a view of the wide range of experiences that people with MS have. That could be very useful.

I think it's a great idea. Let's figure out the best platform for it.
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Postby AllyB » Sun Apr 13, 2008 1:44 pm

Hi there

AC, I am not commenting on you - I love your posts, you are a very valuable member of this community, and I know your husband is truly fortunate to have you cheering him on - go for it!

But unfortunately, this post is a little dark too...
I am obviously not American, and Montel's show has never been on air where I live, so I cannot comment directly.
But, having read the thread, I couln't resist a comment, and I hope you all don't mind a non-US person butting in...

These 'fighters', where, if your attitude is right and you think positive thoughts etc, they say you will be fine or get better, or stay in remission - it really bites me!
It almost makes having any functional deficit as a result of ms, your own fault...Your own negativity and repressed stress caused this, or you are not fighting enough, or you eat too much animal fat, or carbs, or are not taking the right supplements :twisted:
My friend coined a phrase - the criminalization of illness :roll: Very apt, actually - one is made to feel guilty and culpable - having ms is my fault, and not getting better is also my fault. I was occasionally given this impression by certain well-meaning (I hope) people when I had cancer too. A question of mind over matter...

My mother-in-law also believes that she had ms because she went through a tired patch in her 30's, but she has been in remission for over 40 yrs in her own mind - she didn't ever have ms (she is 77 and healthy as a horse) - so she willed herself well and didn't let it get her down, so I shouldn't give in either! I must give up those stupid injections that make me feel bad, stop having a rest, throw away my stick because someone in her 40's is too young for a stick etc. I could scream sometimes!

Anyway, my point is to agree with everyone - no-one wants this, we all do everything we can to help ourselves (including working when we can and resting if we need it!), and we all wish it would just go away.
But it won't, so we have to deal with it as best we can, and I believe that we all fight in our own ways to stay as healthy as possible - and yes, this forum, our friends, and our families are vital (at least the supportive ones, anyway!).
I also agree that a more realistic picture of ms in the media is necessary, but it needs to show the range of disabilities that is possible with this disease - so while there are folks out there who are only really mildly affected by ms, there are others who are wheelchair or bed-bound, and they are arguably the ones who need support and help the most, especially from the medical community - some treatment really needs to be found - chanting and meditation won't 'cure 'em'! But I suppose it won't hurt either - but don't imply that my physical problems are my fault because I don't chant :roll:

Lew, I would also agree with you totally ( I am very agreable tonight) - it is important to do as much as you can for as long as you can, so there are no regrets later, and so you stay involved and feel you are contributing - helps stave off depression too... I gave up work a few months ago - I had a very high-pressured job in senior management that involved a lot of travel and I had 2 young kids - and after 2 really bad relapses, I was just getting sicker and my doc thought I might be spms. So i am now a full time Mom (I am the editor-in-chief of a quarterly health education magazine though), and in fact, both my kids were born in April, so I had a birthday party for them yesterday (they turned 7 & 5) - it was the first one I gave at home for them, as previously because of work, ill-health and other stressors, I was unable to do this, So, my kids are getting valuable time with Mom, I get rest in the mornings when they are at school, and I do a bit of work at my own speed - win-win! My health has improved - my edss was up at 5 or 5.5 and now it is probably 4.5, and if I don't relapse further, maybe it will get even better (hope springs eternal). So we all have to arrange our lives to suit our needs and the last thing we need is to be judged for it - that is why I love this site.

Thanks guys.
Al
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