March is MS Awareness Month

The Multiple Sclerosis Association of America (MSAA) recognizes March as MS Awareness Month. Throughout the month, MSAA is raising awareness and improving lives today!

March MS Awareness Month calendar Graphic

MS Awareness Month is a great opportunity for everyone to learn more about multiple sclerosis and discover all the services and support MSAA offers. 

MSAA offers the following ways to learn and support the MS community:

  • Visit our website, mymsaa.org, which provides easy access to vital information, resources, and tools from your desktop, mobile phone, or tablet.
  • View any of our educational videos and webinars in our MSi Video Library ranging in topic from MS symptom management to understanding Medicare, and much more.
  • Read one of our publications, including MSAA’s award-winning magazine, The Motivator, and the recently published MS Research Update with the latest latest findings in MS treatments and research.
  • Attend one of MSAA’s educational events for people with MS and care partners – check our Calendar of Events to find upcoming programs happening in your area.
  • Check out MSAA’s 2014 Art Showcase, featuring creative and beautiful artwork by individuals with MS.

Help to spread MS awareness by using MSAA’s “March is MS Awareness Month” badge as your social media profile picture (right-click the image below, save it to your computer, then use it on your Facebook, Twitter, Google+, or LinkedIn account profile pictures). 

Also remember to use the hashtag #MSAwareness in your social media posts.

MSAA_month_badge3

We look forward to everyone learning more about MS during MS Awareness Month. And we greatly appreciate your continued support of our vital mission of improving lives today for the entire MS community.

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2013: The Year I Found My MS Voice (Thanks, Dad)

By: Jeri Burtchell 

After 15 years with multiple sclerosis (MS), I was sure I had learned all I needed to know about the disease. I’d heard every old wives’ tale, learned about every treatment, and Googled every symptom–real or imagined. Turns out I learned more in 2013 than my entire decade-and-a-half had taught me previously.

Years ago, my dad encouraged me to become a writer. Why, I had no clue. I’d never written anything he’d read except those anxiety-ridden letters from overseas as a young Army wife. Pleas for domestic advice, they had my folks in tears. Not from worry or concern, but the kind you cry when you laugh so hard you can’t catch your breath.

Dad saw a talent I never saw, but I never forgot his words. So when a friend suggested I apply for a writing job posted on Facebook, I thought why not? I believe in stepping through doors that open for you. If you don’t like what’s on the other side, you can always turn tail and run.

Imagine my surprise when I actually landed the gig. I was officially a freelance writer, covering the MS News for www.healthline.com. After my first article published, I squealed when I saw my byline. But writing a weekly article about MS would be challenging. How could there be “news” every single week? No need to worry.

I’ve stayed quite busy since I donned a reporter’s hat. There is so much going on in research now that even if I wrote a daily article I still wouldn’t cover it all.

From the exciting news that researchers in Germany have successfully rebooted the immune systems of some MS patients, to the less than great news that red wine may worsen MS, this past year has been an eye-opener.

My friends were star-struck when I interviewed Shemar Moore from Criminal Minds about his Bike MS event, but my own heart fluttered when I interviewed Dr. Steven Jacobson, Chief of the Viral Immunology Section at the National Institute of Neurological Disorders and Stroke regarding Epstein-Barr Virus and MS. I guess I’m a bit quirky when it comes to who attains “rock star” status in my world. I’m an unscientific science nerd now and MS stands for More Science, please.

It’s been a fascinating journey to live a writer’s life. Every week is a new topic, with MS the theme. Granted, some news is disappointing (the red wine, again), but there is a constant flow of MS news and that is reassuring to me. Knowing there are people out there who’ve dedicated their lives to finding the answers for us gives me hope.

So when asked what I’ve learned looking back on 2013, it would be to keep digging for the truth. To share the facts that surface each time a researcher publishes a paper on their work in the field of MS.

Having to read those papers and form intelligent-sounding questions to use in my interviews has been an ongoing lesson itself. Lucky for me, I love my job.

My most important takeaway from 2013 is that I’ve seen how valuable each of us are who live with this disease. Research would come to a screeching halt and be nothing but unproven theories if not for us. The real heroes are the volunteers who give of themselves to get us closer to a cure.

Research should be something we all consider, not just those out of options. Studies covering everything from new disease modifying therapies to fatigue, cognitive issues and more are enrolling all the time. You can browse through them using a new tool that Healthline just launched. Even if you don’t intend to join, it should give you renewed hope that a cure could be close.

But does the idea of ingesting a mystery medication in the name of science seem a little too sci-fi for you? Relax! That’s not the only way to get involved.

Sites like www.PatientsLikeMe.com give us the opportunity to engage in research by taking surveys. When you answer questions about your health, you are contributing to a gold mine of data that will help researchers in their quest for a cure.

So, while my Dad never lived to see the day I became a published author, his encouragement lives on in my heart and mind. He was right all along. I just needed to go through that door and find my reason to write. I never would have guessed, all those years ago, that my voice would come after getting MS.

So here’s to 2014! May it bring us good health and happiness, and More Science, please!

References:

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

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MS Education – A 2014 Resolution

By Matt Cavallo

I have been living with Multiple Sclerosis for eight years now. I have not had a major relapse since 2010. Today, I am living the life that I always wanted despite having MS. I am able to work fulltime, have a loving home life with my wife and kids and participate in activities like coaching my son’s baseball team. One of the reasons that I believe I am doing well battling this disease is because I am always seeking to increase my education and understanding of the disease.

Understanding Multiple Sclerosis and all the available options for chronic illness management is paramount to being successful despite having MS. Now, more than ever, the landscape of available options is changing due to advances in medicine and tireless research. Educating yourself on the MS pipeline will make you better equipped to continue your fight.

So, where should you go for resources? Your first and best resource is your neurologist. Each MS patient is different and your neurologist knows your story better than anyone else. I see a neurologist who specializes in Multiple Sclerosis and stays up to date on all the latest MS breakthroughs and research studies.

Second, get involved in community events. Patient education events are held all over the country and have excellent information for patients. For example, the MSAA has a calendar of community events. Other organizations like the National MS Society or pharmaceutical companies also hold similar patient educational events.

Third, seek out evidence-based printed material. The Internet can be a great source of information, but how do you know that what you are reading is coming from a credible source? I frequent support groups on Facebook, Twitter and other online outlets, but how do you know that the information that you are receiving in those groups is valid? Sadly, there is a lot of misinformation on the Internet and social media sites.  Listening to advice from unreliable or irresponsible sources can actually be detrimental to your health.  My favorite online reference for MS is Healthline.com, What do you want to know about Multiple Sclerosis?This is a one stop shop to get high level information on the cause, types and treatments for MS.

Another publication that I love is The Motivator. The Motivator is published twice a year by the MSAA and covers vital issues for people living with MS. You can have the print version of The Motivator mailed to you or read it online.

Staying educated about Multiple Sclerosis will put you in a position to live well despite your condition. Taking advantage of the resources available to you will ensure that you are up-to-date with the latest, most accurate information.  Establishing an open, honest and trusting relationship with your neurologist is vital to your overall health.  They should be your go-to before making any health-related decisions. Patient events and literature can provide you with useful information as long as they are from credible sources.  If your resolution for 2014 is to take control of MS then it all starts with educating yourself on how to fight the disease.

Happy Holidays Everyone!

Resources

http://support.mymsaa.org/site/PageServer?pagename=Calendar_of_Events

http://www.healthline.com/health/multiple-sclerosis

http://mymsaa.org/publications/motivator/

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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MultipleSclerosis.net is Proud to Partner with MSAA

Recently, MSAA has partnered with MultipleSclerosis.net, and now we’d like to offer them a warm welcome. Since we first met the MultipleSclerosis.net staff, we have consistently been impressed with their willingness to share in our mission of improving lives today. Last week, we had the opportunity to detail our programs and services to their community. Today, we are pleased to introduce them as a regular contributor to our MS Conversations blog.

MultipleSclerosis.net is intended to provide thoroughly-reviewed and accurate information to people with MS and their caregivers, and we invite you to read more about it in today’s blog entry. We hope you’ll find their platform as empowering and educational as we did.  

Launched in March of this year, the website MultipleSclerosis.net has rapidly grown to become one of the largest and fastest growing websites dedicated exclusively to Multiple Sclerosis patients and caregivers. We are happy to partner with MSAA to give a broader reach to the excellent work that MSAA does every day to improve the lives of people impacted by MS, and we look forward to being a regular contributor here.

MultipleSclerosis.net is proud to partner with MSAA

Produced by Health Union, LLC, the company that also develops Migraine.com and RheumatoidArthritis.Net, MultipleSclerosis.net features hundreds of pages of fully-referenced original content on such topics as understanding the basics of MS, to more advanced topics like diagnosis, symptoms, treatment and an overview of MS Research. The site also features forums where users can discuss a wide range of topics specific to MS.

MS StoriesIn addition to this in-depth content, MultipleSclerosis.net has assembled a diverse team of patient advocate bloggers; people with MS and/or caregivers of those with MS who write frequently on real-life topics related to their lives with MS. How it impacts them personally, how it impacts their relationships with others, and stories of their own personal trials and tribulations of a life with MS.

MS.net blog3           Lastly, MultipleSclerosis.net runs polls and surveys on the site. On survey, “MS in America” was an in-depth survey taken by over 3,000 MS patients. We asked participants of the MS in America study about their early experiences with MS symptoms and diagnosis.  A majority of survey participants first experienced MS-related symptoms  (including symptoms that were later identified as being related to MS) in their 20’s or 30’s. Still, most respondents were not diagnosed with MS until almost a                                                                                            decade later.

This is just the tip of the iceberg; further results of the MS in America study

MultipleSclerosis.net

are posted on MultipleSclerosis.net and we will continue to conduct large patient surveys to further enhance the understanding of the impact of MS on people’s lives.

So in the future, we will be bringing highlights from our polls, surveys, stories and blogs here to share, but first we wanted to introduce yourselves and welcome you to join the MultipleSclerosis.net community. We look forward to contributing here.

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Online Support for Caregivers of People with Multiple Sclerosis

As a caregiver or care partner it can frequently be a challenge to actually make it out and about town. While an in-person support group or activity may be ideal, sometimes it may not be a reality. Online groups provide an alternate way to connect to support without having to plan details and coordinate care to be able to attend.

Websites such as MSWorld: http://www.msworld.org/ and PatientsLikeMe: http://www.patientslikeme.com/ provide avenues for individuals diagnosed with MS and their caregivers to discuss their concerns. These groups allow you to connect through online message boards or forums.

So, when you can’t get out of the house but need to talk with another person who has “been there” an online resource may be the way to go. Please note that every online forum will have its own set of rules and privacy policies. Before you register for any website be sure you are comfortable with the terms agreement.

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Resources for the Caregiver

The role of the caregiver is often described as “the rock” or “the foundation” of the family; the one responsible for the wellbeing of all. But who takes care of you? Just as much as your loved one needs your support, you need support also. It is ok to take a break, and turn to help when you need it. In order to be the best caregiver you can be you need to be well rested both mentally and physically. Being the primary caregiver for an individual with MS can be challenging. The unpredictability of MS itself creates an additional challenge in trying to manage your day to day life.

There are some helpful resources for those in the caregiver role to aid in the management of the daily challenges of caregiving. The Family Caregiver Alliance provides caregiving information and advice as well as a guide to state resources available to caregivers. The Caregiver Action Network offers information and resources to individuals in all types of caregiving situations. The site helps to identify the various needs that caregivers may express through their varying roles.

Another great resource directed specifically towards spousal caregivers is the Wellspouse Association. They coordinate a national network of Support Groups and facilitate a Mentor program. And when the time comes for a break, the National Respite Network provides a National Respite Locator to help caregivers locate respite services in their community. The site also helps to educate caregivers on how to find and choose appropriate respite care.

With so many resources available to assist the individual in the caregiving role, now it is your time to take a break and be the best caregiver that you can be.

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Come Chat with MSAA!

MSAA now offers an interactive one-on-one chat feature giving you new ways to ask questions and gather infomation. Click here to learn more about how to chat with MSAA .

Hope to chat with you soon!

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It’s that Time of Year Again….

Although the summer season has not officially come to an end, it’s that time of year again that reminds us to try to soak up what’s left of the summer sun. Though it may feel like the height of the summer season is passing, the heat may linger and stay well into September/early October as it has in the past. When this occurs we get to recapture the remnants of summer joys. If you like this season be sure to get out and embrace what’s left, because when you start seeing school supplies and Halloween decorations displayed while browsing in stores you know fall is just around the corner. Although for some the end to summer is a sad occasion, for others, especially those affected by the heat, it is a time well appreciated. So while it is not quite yet the official end of summer, time reminds us that seasons change, so enjoy what this season brings!

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Have you tried My MS Resource Locator?

MSAA offers an online database with resources in ten key topic areas that range from helping you locate a neurologist specialized in MS to finding a Social Security Disability Attorney.

In addition, each of the ten topic areas provides a “guide” designed to explain why specific resources are listed, highlight important questions to ask when contacting resources, and identify next steps.

Try it today! http://resources.mymsaa.org/

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Work, work, work…

In today’s world, work tends to be one of the main focal points of everyday conversation. What work you do, how long you’ve been doing it, and what work you hope to do in the future become areas of focus. Therefore it can be difficult when some of these conversation starters touch on a subject that’s a little less defined for some people, especially those having challenges in a job position due to a disability.

Employment concerns and issues can arise for all individuals within the workforce, and when you throw a disease like multiple sclerosis into the mix these issues can cause frustration and confusion. Some individuals have difficulties deciding which work arena would be most appropriate for their skill set and abilities, while others question how long they will be able to continue the work they are currently doing. These are all relevant and important questions to consider, as many find themselves faced with these thoughts. What’s important to know is that work issues are something you can discuss with others so you are not faced with these questions alone. Your doctor, healthcare and social work professionals, family, friends and other resources may be able to assist in this process.

There are also other outlets of information and resources where one can possibly find assistance with employment issues. A Vocational Rehabilitation office is a resource throughout each state that is designed to assist those with disabilities on information and resources regarding employment changes. There is also a resource called the Job Accommodation Network, www.askjan.org that can offer information regarding workplace accommodations which can create greater accessibility to those with disabilities in the workplace. If you’re experiencing workplace issues you’re welcome to call the MSAA Helpline at phone (800) 532-7667, ext. 154 or email us at msquestions@mymsaa.org. Again, though employment issues can be challenging and create many difficult questions, there are potential resources to help you along the way.

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