Monday, October 17, 2011

Welcome!

Cyndi Zagieboylo
President & CEO,
National MS Society

In my 25 years with the National MS Society, people have shared hundreds of “MS stories” – stories of struggle, of pain, of heartache, as well as stories of optimism, of the power of possibility – each as unique as the individual people living with multiple sclerosis and the strength of those who love and care about them.

In the digital age, we are redefining the word “community.” Our communities are no longer just our neighbors, our families, our coworkers – they are also our Facebook friends, the members of our online support groups, the bloggers whose experience of MS resonate with our own.

Information now lives everywhere, but finding the right information when you need it can often be difficult. And, once you find it, it sometimes seems as though it’s written in a foreign language. What if you could more readily find what you were looking for and what if the information was presented in a more understandable way? What if you could ask questions to others with your shared interests or get answers to your questions from experts in the field?

The National MS Society is excited to launch this new blog. It’s an important step – one of many – to help us connect those affected by MS to the information and people that help move lives forward. Connecting to create a world free of MS – we are stronger together than we are apart. It is only fitting that we start the conversation here at the largest annual international conference devoted to basic and clinical research in multiple sclerosis – the 5th joint congress of the European and Americas Committees for Treatment and Research in Multiple Sclerosis (ECTRIMS / ACTRIMS).

This week in Amsterdam, thought-leaders from around the globe are coming together to share cutting-edge and breaking MS research news – and you will have a front row seat. Over the next several days, Dr. Julie Stachowiak, Science/Medical writer for About.com, and Kate Milliken, video producer – who are both living with MS – will provide daily research updates and video from the conference. Please check back in to this blog over the next few days and share your thoughts and questions as we explore how the research community is working to STOP MS in its tracks, RESTORE lost function and END MS forever!

10 comments:

  1. Cyndi and NMSS,

    Welcome to the MS Blogging Community. We are glad to see you here.

    Lisa Emrich
    Carnival of MS Bloggers
    Brass and Ivory

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  2. Thanks, Lisa! We're excited to be here.

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  3. Hi, I am Gail from CT. Wish I didn't belong here, but I do. :-=) Looking forward to being empowered. thanks
    Gail
    peace......

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  4. From October 19 to 22 will be held in Amsterdam ECTRIMS 2011 Congress that someone ironically defined the Congress of "Big Pharma 2011." As widely expected there will be presented a series of negative studies on the correlation between MS and CCSVI discovered by the ''hated'' Dr. Zamboni. Most of these studies were conducted by neurosonologists. Recently during a conference in Italy a neurosonologist said:''... Today I also speak of one thing, the veins, which I'm not very familiar. ... ".
    So I have no faith in the upcoming ECTRIMS Conference sorry.

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  5. go to www.ccsvi.org for reliable information about CCSVI

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  6. The administrator may remove any comments that are contrary to Society social media guidelines (see Guidelines link below). Please email socialmedia@nmss.org with any questions. Thank you for your understanding.

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  8. It's good to know that you will be representing all of us at ECTRIMS. I've subscribed to your blog and look forward to the daily headlines from Amsterdam.

    For anyone who doesn't already know this - you can access the entire ECTRIMS program at their website. AFter the conference has concluded, almost all of the presentations will be available online to view.

    Laura K
    InsideMyStory.com

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  9. Here is my introduction: When I was diagnosed with Multiple Sclerosis in March, 1981, I began the most significant journey of my life. Though the disease has created several handicaps for me; legal blindness, loss of balance, short-term memory loss, bladder hassles and difficulty walking, it has taught me the greatest life lessons. At first, my doctors told me they had nothing to offer. Instead of being a passive victim, I became an active partner in my treatment. My illness forced me to go very deep within to avoid frustrating thoughts. I began to relate to that depth, which is beyond-thought reality, as the "Wisdom of my Body.
    Dealing with a chronic illness from this wisdom may not change my struggle, but it improves my basic quality of life. When I share this perspective with other people through my writing and lecturing, I find I can work on others’ problems and apply their solutions to myself. I believe that this beyond-thought reality became an incredible tool in my everyday life. I use this experience to avoid negative thoughts and tap my inner resources. When I first became legally blind, my brother told me in golf, handicaps are given to good golfers to make the competition equal.
    When I looked outside, I could not see the objects of my thoughts; things were blurry. When you cannot look outside clearly, you are forced to look within. Of course, I mourned the loss of parts of my life, but looking at my handicaps from that perspective seemed to give my struggle a greater purpose. Even though I am handicapped, the quality of my life doesn’t depend on the health of my body; it depends on my focus.
    Each handicap I faced became an incredible teacher to me. I taught myself to walk 3 times, using imagery and programming my mind before I went to sleep. I learned that dreams were a way to complete unfinished business. Before I went to sleep, I imagined myself running. During my sleep, that created unfinished business. My girlfriend said that while I was sleeping my legs were moving. I told her I was dreaming about running. I then went to a track and tried to run. Without that subconscious motivation, I probably would not have tried to see if I could run. Of course, this was not a cure for MS, but it created a mental attitude for me to face the struggles of walking. As time went on, my disability of walking worsened, but my attitude was strengthened. I call the process dreamwork.
    I used it to improve walking each time it became a problem. In my 27th year after diagnosis, I began to use a wheelchair. I still need to exercise, but because of poor balance, I fall when I try to stand. The exercise I developed is walking up and down 6 flights of stairs, holding onto the side railings. I have been repeatedly surprised by powerful inner resources that are so easily ignored. I feel that the best thing an MS patient can do is to tap those inner resources to become an active partner with their doctor. I wholeheartedly believe that to struggle is to grow. The alternative is that struggles can defeat you. I have not cured MS, but I feel there is a healthy way to be sick.

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  10. Have a blog also Life Can Be Simple,yes with MS,diag in 2003,and thank goodness for a great family,we have found ways I still feel alive,no thanks to any doctors,but that is ok,that's what happens when you work for a Health Care and spouse works there also and has their so called insurance,but I love blogging now and like I said I have a great support in my family.

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