Watch Our New Video on MS Relapses

A Closer Look at The Importance of Treating and Managing MS Relapses
featuring Stephen Krieger, MD

Managing the unpredictability of multiple sclerosis is always challenging, especially for individuals with relapsing forms of the disease. When new symptoms appear or existing symptoms become worse, successful management involves accurately defining the relapse and understanding the best method of treatment.

Recognizing the need for additional awareness on this topic, MSAA is proud to announce the completion of its latest educational on-demand video, titled: A Closer Look at The Importance of Treating and Managing MS Relapses.

Watch the latest on-demand MSi video, A Closer Look at The Importance of Treating and Managing MS Relapses, complete with chapter stops on mymsaa.org

Supported by an educational grant from Questcor Pharmaceuticals, this 40-minute video features neurologist and MS expert Dr. Stephen Krieger of Mt. Sinai Hospital in New York City. In this relaxed, conversational-style interview, Dr. Krieger provides:

  • valuable insights into understanding the signs and symptoms of an MS relapse
  • guidance on when to discuss the onset of a flare up with a neurologist
  • a thorough explanation of the various treatment options including steroids and other medications

The video is now available on the Multiple Sclerosis Information (MSi) section of MSAA’s website and also features a downloadable PDF transcript of the program.

To view this new program, A Closer Look at The Importance of Treating and Managing MS Relapses – with chapter stops during the video – please visit support.mymsaa.org/relapsevideo.

To view all of the informative on-demand videos and archived webinars from the MSi library, please visit mymsaa.org/videos.

Register for a Free Webinar Presented by TEVA Pharamaceuticals about The Affordable Care Act

TEVA Pharmaceuticals is sponsoring a free webinar tomorrow, May 21st at 1:00 PM EST entitled “The Affordable Care Act’s Health Insurance Marketplaces: Overview for the MS Coalition.”

MSAA is an active participant in the MS Coalition and encourages anyone who is looking for general information on the Affordable Care Act to participate. The program will provide an overview of the new and emerging health insurance Marketplaces as well as MS specific information.

Please note that registration is REQUIRED. Be sure to click the following link: (https://tevausa.webex.com/tevausa/onstage/g.php?t=a&d=794060172 ) to insure your spot in the program.

 

Dear Diary….

The grown up version of a teenage diary, journaling is a great way to connect your thoughts and tune in to how you are feeling on a daily basis. Although difficult at first, eventually you will find yourself writing page among page effortlessly. Journaling allows us to express our deepest fears, saddest sorrows, and greatest accomplishments in an open non-judgmental format.

Writing quickly frees your brain from “shoulds” and other blocks to successful journaling. If it helps, pick a theme for the day, week or month (for example, love, confusion, change or anger). The most important rule of all is that there are no rules!

All you need is a pen and paper, nothing too fancy to start! Online journaling resources such as Penzu and Penmia can be used for those who may feel more comfortable typing rather than writing. Also in this format, assistive devices can be utilized in order to journal more freely and openly without the struggle of pen and paper. Even a voice recorder or video recorder could assist with journaling!

By journaling routinely you will get to know what makes you feel happy and confident. You will also become clear about the situations and the people in your life. Journaling about stressful events helps you come to terms with them, thus reducing the impact of these stressors on your physical health. Journaling about anger, sadness and other painful emotions helps to release these feelings. By doing so, you will feel calmer and better able to stay in the present.

Tune into yourself. Journaling can benefit individuals with MS, by connecting the mind and body. Journaling about a symptom creates awareness around the symptom; when did it start, what you were doing when it started, and did anything make it better or worse. Symptom tracking through journaling is an effective way to help manage your MS.

Through your expressions you’ll discover that your journal is an all-accepting, nonjudgmental friend. And may provide the cheapest therapy you will ever get. Best of luck on your journaling journey!

Latest Issue of The Motivator Now Available!

Read about the following topics in MSAA’s latest issue of The Motivator:

Cover Stormotivator winter_spring 2013y:
* The Hidden Symptoms of MS
This article describes some of the hidden symptoms of MS (including pain, fatigue, sleep, cognition, and vision), along with management strategies.
Read the full story

Research News:
* American Academy of Neurology Meeting Highlights
* Tecfidera™ Approved for the Long-Term Treatment of MS
Read the full story

Health and Wellness:
* The Affordable Care Act and You
The Affordable Care Act (ACA) aims to increase the availability and affordability of health insurance for millions of Americans who lack coverage. Beginning in January 2014, this historic initiative will significantly impact a substantial number of individuals with multiple sclerosis and their families.
Read the full story

Already receive a printed copy of The Motivator magazine in the mail? Interested in receiving The Motivator electronically only? Let us know! Please visit support.mymsaa.org/motivatorupdate.

Swim for MS Update – May 2013

Summer is almost here! Start to plan your summer Swim for MS event today!

Looking for some ideas for your summer Swim for MS, consider these options:
1.    Host a summer pool party for Memorial Day weekend!
2.    Set a goal to swim 500 laps throughout the summer to raise $1,000!
3.    Create a pool volleyball tournament with your friends!
4.    Participate in Swim for MS and pledge to swim 100 laps and improve your fitness by the end of summer!

MSAA’s Special Swim for MS May Prize…is a Modify Watch!
Anyone who registers for Swim for MS will be entered to win a Modify Watch! Modify Watches are interchangeable watches allowing an individual to mix-and-match faces and straps to create the “Mod” that best suits you! Browse the Modify Watches blog for more information on their nonprofit collection and how to purchase a “Together” watch.

Please note: participants must register during the month of May 2013 (5/1/2013 through 5/31/2013) in order to be eligible. The winner will be announced via email in the June 2013 edition of the Swim for MS News e-newsletter.

The May 2013 Winner is…
Missy Franklin Autographed Photo:
Congratulations to Laurieann Hart for raising $1,220 through Swim for MS in the month of April!

Lesson from a Mom with MS: You’re Stronger Than You Think

By Hannah Cusworh
2013 Swim for MS Participant

You’ve heard of all the banal platitudes like “Never take ‘no’ for an answer,” “If you fall off the horse, get right back up,” and ”When there’s a will, there’s a way” – I’m almost certain my mother coined all of those phrases.

My mother was diagnosed with multiple sclerosis (MS) at a young age when she started losing vision in one of her eyes. Fortunately that symptom subsided and she continued living her life as she intended. Four kids and a few decades later, the disease awoke again with a force to be reckoned with. Our warm summer beach vacations were moved to cool mountain ranges in order to minimize her exhaustion. Our Sunday afternoon bike trails shortened. Our floor-level card games moved to higher ground. Afternoon rests became a daily routine. Our everyday Mom activities had changed forever. At least that’s how I saw it.

My mother, on the other hand, never let that be the case. She never sought out pity from others, she never asked for help. Anything we did before, she’d find the strength to do it in her own new way. She wasn’t going to take “no” for an answer, she got back up on her horse, and she found a way. Yes, her everyday mobility has shifted towards a slightly different way of living, but life hasn’t changed.

While many cases of MS can be much more debilitating than the one my mother battles, I encourage those suffering from this life-changing disease to maintain the strength my mother has shown me. In honor of her continuing battle and as a tribute to her perseverance, this April I took on a personal “Swim for MS” challenge to swim 500 laps and raise $1,000 in 30 days. Sound hard? Not when you have this kind of inspiration.

Read more about Hannah’s Swim for MS on her webpage today!

 

Hello from the Northeast Region!

Hi all! As the Northeast Regional Director, I plan all of MSAA’s educational programming from Maine to Washington DC. My territory may not look very big on the map, but don’t be fooled! I cover Maine, New Hampshire, Vermont, Massachusetts, Rhode Island, Connecticut, New York, Pennsylvania, New Jersey, Delaware, Maryland and Washington, DC. I spend a lot of time traveling throughout the Northeast hosting educational programs for patients, and the last month has been very busy  here.

This week, I wrapped up a four-program series called “MS Update 2013: What’s New in the Treatment of Multiple Sclerosis?” that focused on the latest treatment options in the management of MS. There were three programs in April—one  in Freehold, NJ with Dr. Amos Katz, one in Plymouth Meeting, PA with Dr. Thomas Leist, and one in Cherry Hill, NJ with Dr. Donald Barone—and  the last program was held on May 8th in Staten Island, NY with Dr. Allan Perel. Each program had a lengthy question and answer session at the end, and everyone who attended was encouraged to ask the presenting doctor any questions they had about the currently-approved FDA therapies, research, and general questions about MS. It seemed like everyone learned a lot at these programs, and I was impressed by their thoughtful questions!

In the last month, my travels also took to me Syracuse, NY and Amherst, NY for patient programs on “Managing MS Relapses” with Dr. Lev Goldiner and Dr. Peter Kinkel, respectively. I also made it down to McLean, VA in the DC Metropolitan area, for a patient program on “Managing Your MS” with Dr. James Simsarian and his nurse practitioner, Alona Williamson.

I am so fortunate to be able to attend these programs and meet so many wonderful people that make me so grateful to be able to do the work that I do. At a smaller, more intimate program last month, I had the opportunity to speak with a young man who diagnosed with MS a few weeks before the program, and just days before his wife gave birth to their new baby. I was so inspired by his positive outlook about his diagnosis and wanting to learn as much as possible about MS, so he could self-advocate to ensure he would receive the best care possible.

As many of you know, MSAA hosts hundreds of educational events for both patients and healthcare providers each year. If you live in the Northeast and are interested in attending a program, two are coming up: The Changing Landscape of MS: What Does It Mean for Patients? with Dr. Rock Heyman in Pittsburgh, PA on May 15th and Managing MS Relapses with Dr. Scott Newsome and Kathleen Costello in Baltimore, MD on June 6th. I am also in the process of planning patient programs in Erie, PA, Rochester, NY, Burlington, VT, Maine and New York City over the next few months, and am hoping to expand that list.

Add our Calendar of Events to your bookmarks and check in every so often to see if there is an event in your area! I hope to see you at an event soon!

Mother’s Day is Almost Here

Mother’s Day is almost here!

All that I am, or hope to be, I owe to my angel mother. – Abraham Lincoln

Mother’s Day is a wonderful opportunity to honor the special mothers in your life. They could be your own mom, a sister, grandmother, daughter, friend, or co-worker. While these caring individuals deserve to be recognized every day, we can pause and give thanks on this very special day. Honor these special women with a donation to the Multiple Sclerosis Association of America (MSAA). Your donation will enable us to fulfill our mission of improving lives today for the entire MS community. With each donation, you will have the option to send a personalized online card to the person being honored, letting her know of your support of MSAA.

Your gift supports vital services and support such as our toll-free Helpline, equipment distribution, MRI assistance, and more.

“Thank you so much for making such an impact on my summer. I have 4 kids and I have been able to do a lot with them this season because of the cooling vest. Even take them swimming in the humidity. I appreciate your kindness.”
- I. P., North Carolina 

Please make your special Mother’s Day donation today! Improve lives today by honoring the special women in your life.

Happy Mother’s Day!

Thanks Mom…

She brought you into this world. She changed diapers, fed you, and most importantly, coddled you when you needed it most. She watched you grow up; through years of school plays, sports games, dances and recitals. She held your hand to keep you safe. She offered a shoulder to cry on when things didn’t go right. She gave advice and words of wisdom, even when it wasn’t what you wanted to hear. She could be tough at times but only to help keep you in line. She always seemed to know when you were lying or trying to hide something. She listened to your stories, goals and hopes for the future. She tried to be a role model in hopes that one day you would offer the same guidance to your children. She raised you to take advantage of opportunities and make your own mark on the world, similar to the one she made by bringing you into it.

So this Mother’s Day, think of the things she did to help you grow and learn in order to become the person you are today. Maybe it was not a mother but with the help of a grandmother, an aunt, or a sister that you were able to grow surrounded by such care and devotion. Remember these moments of influence and care and not just on Mother’s Day, but every day. And remember to say “thank you.”

Get Organized!

Spring is almost over and for those of us who have emptied our closets of all the winter wears; it is now time to get organized! Maintaining an organized lifestyle helps to manage the flow of the day, week, and/or month. If we view our lives as a greater whole, we are able to appropriately plan and make the best of our time. Getting organized also allows us to delegate some tasks to others as needed. If we know what is coming up, we can plan accordingly.

Here are some tips for starting your new organized lifestyle:

Utilize your time off: For many, the weekends offer solitude, a break from the day-to- day grind. The weekends can also offer an opportunity to get organized for the week. Start by planning out the meals for the week and laying out the clothes you wish to wear. By taking this extra step, you can potentially avoid stressful situations during the week and we could all use a little less stress!

Forget the “to-do” lists: Years ago my sister introduced me to the “ta-da” list, and it has forever changed my view of “lists”. To-do lists are negative in nature and can often add more stress than they intend. When you look at that long list of things to-do, it’s often a reminder of the things you didn’t do. Taking a more positive spin is the e “ta-da” list. After you have completed a task, you check it off and yell “TA-DA!” It may seem childish, but sometimes everyone needs a little pat on the back for all the things accomplished throughout the day!

One day at a time: Set specific tasks for each day of the week and try to stick with it. For example, select one section of your home to work on. Let’s say Monday’s are “kitchen” days. Think of all the things you do to maintain your kitchen and list them out: sweep, clean out fridge, de-clutter. Now time to delegate tasks; create a list for your spouse or children with their daily “tasks”. By doing these little things one day at a time, you avoid the all-day Saturday cleaning fest, which leaves you completely wiped and ruins the rest of your weekend.

Organization station: Create a place in your home to keep track of your “ta-da” list and “daily-task” sheet. Select a place that you know you will see often and actually use. I like to keep mine near the front door as a daily reminder to myself and family members when they come and go.

Organization doesn’t just happen overnight and can be a real challenge for many people. So make it your own, do what works for you and your family. I am interested in hearing how others stay organized and manage their lives. What do you do?