NESP Forum

I thought in an effort to get to know me a bit better, I would post comments and articles about Multiple Sclerosis aka MS. So many ppl have this condition and I would enjoy dialog between interested parties or ppl who just have questions. I know of one other NESPer who has a dx of MS, so hopefully this can be of use to her too.

When it comes right down to it, Im actually trying to raise awareness of the disabling condition. Im not, in any way, looking for a pity party! You ladies probably already know that about me by now. I just happen to be a 40 yr old married mom of 3 w/MS who adores TAYLOR!!!

In my effort to raise awareness, this week, March 10-17 is MS Awareness Week. Here is a post I recvd from the society in ways you can help raise awareness.
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Mar 10, 2008
WHAT WILL YOU DO? Join the Movement to End Multiple Sclerosis During MS Awareness Week March 10-17

New York, NY—MS Awareness Week March 10 – 17 unites MS organizations and all those living with the effects of multiple sclerosis nationwide in an effort to shine a spotlight on the exciting developments that have occurred this year in treating and understanding MS, a disease where someone is newly diagnosed each hour.
What will you do?

Ways To Join The MS Movement
The National Multiple Sclerosis Society invites people across the county to join the movement to move us closer to a world free of MS by taking simple actions throughout the week, as part of a worldwide “Seven Days of Action.” These activities, just a click away, are designed to be meaningful and easy, whether you are a newcomer or longtime member of the MS Movement. They include:

* Visiting http://www.nationalMSsociety.org daily during MS Awareness Week for new tips and updates on what others are doing to help end MS
* Emailing your members of Congress about the need for increased funding for M S research
* Signing up for a Walk MS or Bike MS event
* Raising awareness by going orange, the color signifying MS and the National MS Society - there are hats, t-shirts, clings, clips and jewelry available for those who want to show they are a part of the MS Movement
* Signing up to volunteer
* Making your mark against MS or sharing your story at http://www.nationalMSSociety.org
* Supporting the Society – every donation brings us closer to a cure

“MS Awareness Week is the perfect time to join the movement to help end MS,” said Joyce Nelson, President and CEO of the National MS Society. “It is also the ideal time to recognize the millions of individuals who are already a part of the movement and each day make a difference in the lives of people who have MS.”
Highlights During MS Awareness Week

Moving Forward MS Film Festival

* The first-ever MS film festival will debut on Second Life on Wednesday March 12 at noon (PT) during MS Awareness Week. The five first-person shorts can also be seen on the Society’s Web site: http://www.nationalMSsociety.org/filmfestival

Launch of a New More Streamlined National Web Site
The Society’s new Web site debuts on March 10. It has been redesigned to make it easier than ever for people with MS and people concerned about MS to find the resources they need.

* Throughout MS Awareness Week, in addition to tips on ways to join the MS Movement, the home page will profile exciting and inspiring volunteers.
* The Society’s online store is introduced where consumers can buy Society items or items from companies and individuals that support the Society

Satellite Media Tour with Jordan Sigalet on March 10

* In collaboration with corporate partner MS Lifelines, live and taped TV interviews have been booked with Providence Bruin hockey star Jordan Sigalet who lives with MS and Society spokesman Dr. Nicholas LaRocca.

Mobility Survey Data To Be Announced

* The Society will release an overview of the first Harris Interactive Poll ever to survey people with MS and their care partners about mobility issues. The initiative was done in collaboration with Acorda Therapeutics. An in-depth media briefing on the survey’s findings will follow on April 8 in New York.

Advocacy Action Alert

* A cross-organizational advocacy alert will be distributed on Tuesday, March 11, to encourage people to ask their federal representatives for increased MS research funding

A Campaign That Moves With You Wherever You Go
The “Join the Movement” campaign has also inspired a wide variety of support from corporations who have donated time, space, creative services and funds to ensure the success of MS Awareness Week and help people with MS move their lives forward. Thanks to the leadership of these corporate supporters, MS Awareness Week 2008 has once again increased the visibility of the MS movement. The National MS Society extends a thank-you to: Bayer HealthCare Pharmaceuticals, Clear Channel Communications, Developers Diversified Realty, EMD Serono and Pfizer Inc, Endless Pools Inc, Genentech/Biogen Idec, Microsoft, Novartis Pharmaceuticals, Teva Neuroscience, The Vitamin Shoppe, and Westfield Shopping Centres.

National MS Chapter Activities
From coast to coast, the Society’s 50-state network of chapters are introducing their own special events to support MS Awareness Week and encourage people to “Join the MS Movement.” They include billboards, banners and displays, “go orange” days, state capitol advocacy days, health fairs, on-the-road MS awareness tours, and alliances with local business and cultural institutions. To find out what is happening in your area, contact your local Society office at 1-800-344-4867 or visit http://www.natonalMSsociety.org to find your chapter.

About Multiple Sclerosis
Multiple sclerosis interrupts the flow of information between the brain and the body and stops people from moving. Every hour in the United States, someone is newly diagnosed with MS, an unpredictable, often disabling disease of the central nervous system. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with more than twice as many women as men being diagnosed with the disease. MS affects more than 400,000 people in the U.S. and 2.5 million worldwide.

About the National MS Society
MS stops people from moving. The National MS Society exists to make sure it doesn’t. We help each person address the challenges of living with MS. In 2006 alone, through our home office and our 50 state network of chapters, we devoted nearly $126 million to programs that enhanced more than one million lives to move us closer to a world free of MS. The Society also invested more than $46 million to support 440 research projects around the world. We are people who want to do something about MS NOW. Join the movement at http://www.nationalMSsociety.org.

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Stay tuned...my regional Walk MS is coming 4/27!! Team Bub Club takes to the walkpath again to raise money for a cure!!

Kim, wow that was really informative. I actually did participate in the MS Walk for four or five years but it was at least ten years ago. It was thru my job at the time but I never knew anyone with MS. I haven't met you yet and I know you said you weren't looking for a pity party but gawd that SUCKS. The only other person I have honestly heard talk about it is Montel Williams. He seems really fit now and I was just curious if MS ultimately stops the body from moving, if being "super fit" slows down the process at all? I'm pretty sure he wrote a book but I haven't seen it yet.

I commend you for having the courage to come on here and share your diagnosis with the masses. How are you feeling? How long ago were you diagnosed? I was also curious as to where the location of your regional walk is. Hey you said we could ask questions!!

Kim, this is really cool to start this topic!You never know who is
reading that might really need the info Are you collecting
sponsors for the walk in April? If so, count me in, just post the details on what you need! We know you are not looking for a pity
party-but if we can provide support we'd love to help!

Kim you are amazing,thank you that was most informative.I didn't realize that more woman are afflicted with MS than are men.Our local grocery store has been collecting for MS the past two weeks and there will be the walk soon.I'm glad you posted this, awareness is always a good thing.

Thank you guys for the support! YOU guys are the amazing ones! God has blessed me richly by leading me into your lives and NESP!!

I will post how Im doing in the member support thread. You can always email me (indigo810@rcn.com) or PM too.

I have some interesting information I would like to share with you all. Its so true that even when you think you know about something, you can still learn more.

Last night was my area's (Greater Delaware Valley in PA) MS Society Walk MS 08 Kickoff for team captains. What a great reception, good speakers, lots of information and great people.

One of the speakers was our chapter's president, John Scott. He shared some facts that I would like to pass along--

Ive noticed that the Society's logo and tag has changed, so I asked why. He said that the Natl Society wanted a color that helped convey the attitude of urgency and what better color than ORANGE? I have to agree. Red was great, but the orange really stands out. It's also a bit of a happy color--somewhere between red and yellow. The MS is orange with a black swipe through it, representing not only wiping out MS but our MOVEMENT THROUGH MS. And that makes sense when you read the mission statement and why the society exists in the first place--"We need to engage the wider world in our mission to create a world free of MS. MS robs people of the ability to move easily -- whether from one place to another or from one thought to another -- or to move ahead with their lives as they expected. MS stops people from moving. By working together, we can make sure it doesn’t." (on a side note--remember that I told you all that I gave Taylor my red MS band of HOPE at my M&G in Concord? I did that with the hope that Tay would wear it, even once, to raise awareness. I conveyed this to the chapter president, John Scott, and he was impressed that I even met Taylor! He is a fan! Woo-hoo!! If he only knew how we thud! LOL)

When we say "we're moving together" it means all of us-- people living with MS, families, friends, co-workers, doctors, therapists, researchers--WE ALL OWN THE MISSION TO STOP MS IN IT'S TRACKS.

This is the 20th year for Walk MS. It started as one walk, by one man and one team in MN. It has grown to over 600 walks comprised of thousands of people with millions of dollars raised. Amazing! But how is the money allocated? 78% help fund research/programs/education and 22% help fund administrative and fundraising costs. But think about it. For every dollar raised, $0.78 goes to research! A bottle of soda costs more!

20 years ago there were no disease-modifying meds and drs didnt really know how to care for MS patients. Now, there are six FDA approved meds, loads of programs, alternative care and lots of support and information. There still is a way to go. Researchers don't know what causes MS, there arent any meds for people who suffer from the other forms of MS. There is still no cure or even what we can do to prevent it. Yes, we have come a LONG way, but we can't stop now. Researchers are hopeful that there will be some strong answers to these questions by 2010. That alone would motivate anyone to JOIN THE MOVEMENT!

The Society hasnt abandoned "HOPE" as their key saying. There is always HOPE and without faith there is no hope. Instead to really get our point across, the Society is now using "Join The Movement". That's what it's all about--join with us to keep the movement going!

It is estimated that out of the 400,000 people living with MS in the US, only 41% are still working. Approx 44% are unemployed or cannot work. In other words, their careers have been interrupted due to MS. (I'm one of those people) Not only that, the approx lifetime cost of living with MS is 1 million dollars! That's a lot of coin! And we, in many cases, cannot work. Those facts just sux!

If all of this doesn't motivate you to SHARE YOUR REASON AND YOUR STORY to help CREATE A WORLD FREE OF MS, I'm not sure what will. Never underestimate what you can do! There is power in numbers, but there is also power when you put a FACE on what it is you're fighting!

As you guys know, I am still recovering from my recent flare and steriod therapy. I almost didnt go last night. I was tired and I was really having problems walking and my balance was way, way off.

All I can say is that Im glad I did go! I'm motivated to really JOIN THE MOVEMENT so PEOPLE WITH MS CAN CONTINUE MOVING!

Walk MS is the largest and most well-known fundraising event that the Society sponsors. My team, Team Bub Club, is walking and volunteering for my local walk on April 27th. I will post more info regarding our team soon.

Many HUGS and MUCH LOVE!!