On Saturday, April 27th, the Multiple Sclerosis Association of America (MSAA) in collaboration with Children’s Hope for Understanding Multiple Sclerosis (CHUMS) held a program entitled “Bridging the Communication Gap between Parents with MS and their Children” in Duluth, GA at Dave and Busters. The program which focuses on heightened communications between family members about multiple sclerosis (MS) was presented by Dr. David Rintell from Partners Pediatric MS Center at Brigham & Women’s Hospital in Boston and Sue Rehmus, Founder of CHUMS and Vice Chair of MSAA’s Board of Directors. The program is unique in that it is split into two facets, as parents receive a presentation from Dr. Rintell in one room while their children spend time with Sue in another area. Both groups work on learning strategies on how best to understand and talk about MS and the many issues come along with that diagnosis in the family dynamic.

The program in Duluth, which is the first in a series of these programs that MSAA will be facilitating, was wildly successful as 20 families participated. In the parents’ session the group learned about communications strategies relating to MS, as well as how to best enumerate on the various issues that may arise on a daily basis with children that may not have a firm grasp on the disease and its associated symptoms.

In the children’s room, the participants who ranged from ages 6 to 18, engaged in a number of “hands-on” exercises. The various activities enacted by the group included a the concept of “trying on” the symptoms of MS through household items, like blurry glasses, macaroni in shoes, and wearing gloves while trying to turn the pages of a magazine. These efforts gave a greater perspective to the children on what their parent with MS may experience on a day-to-day basis. One child specifically said, “I couldn’t wait to take those glasses off, but it makes me sad to think that my mom never has that choice.”

“Bridging the Communication Gap between Parents with MS and their Children” is a phenomenally multifaceted program that engages all levels of the family into the MS experience, please take a look at our calendar and see if this program is coming to a city near you this year. We’d love to have your family experience this opportunity!

Group picture from the program “Bridging the Communication Gap between Parents with MS and their Children.”

Dr. David Rintell from Partners Pediatric MS Center at Brigham & Women’s Hospital in Boston speaking with the parents at our April 27 CHUMS program.

Sue Rehmus, Founder of CHUMS and Vice Chair of MSAA’s Board of Directors, getting ready to start the children’s portion of the program.

The Affordable Care Act (ACA), which was passed by congress in 2010 is making some very big changes to the entire insurance industry including both public and private insurance policies. Many large scale changes are taking effect beginning in January 2014. Beginning on October 1, 2013 you will be able to  begin to shop for insurance policies in the new  Health Insurance Marketplace.

Recently, MSAA has added a new section to the website on the ACA and the changes that are coming. Please take some time to become familiar with this new insurance landscape. If you have specific questions about insurance, please contact MSAA’s Helpline at (800) 532-7667, extension  154 or email msquestions@mymsaa.org.

There is an old adage about a woman looking in the mirror before she goes out and removing one piece of jewelry. Another maxim is the one–in, one–out rule, which is when an individual brings a new item home, one item must be removed.  What do both of these having in common?  They help us when we have too much “stuff”, which can result in clutter in a person’s life.

Taking this idea one step further, many people find that they commit themselves to too many activities or tasks.  Does it really have to be work, and family, and friends, and exercise, etc. (not to mention and MS)?  For most people all of the “ANDS” become impossible to manage at some point.

Learning to say “no” and find your own personal limits is a lot like the tip about removing one item of jewelry. Sometimes we get into the mindset that more is better, until we are forced to learn that less can sometimes be just as good. Now obviously, there are many things which are non-negotiable and you can’t choose to say “no” to those.  So maybe focus on the ones in life you can say “no” to.

Take a look at your schedule for the week, or even just the day. Look at all the things you promised yourself to do and then see if there is maybe even just one thing you can take out.  If you did would it give you more time to enjoy or appreciate (or even just deal with) everything else you have going on?

With the recent approval of Tecfidera, individuals with relapsing forms of MS now have 10 different disease modifying therapy (DMT) options to discuss with their physicians. Having choices and options for treatment is a good thing; however, having choices brings challenges as well.

Now there are not just a few factors to consider when working with your physician to determine the most appropriate treatment choice. Instead of a few options you will be asked to consider a number of different factors in relation to each medication (creating the potential for major headaches).

Some of the most obvious choices are in relation to mode of administration (injection, IV infusion, or oral), while other considerations include efficacy, safety profiles, and risks associated with each medication. Combining all these factors and more can seem like a daunting task.

As a result, MSAA designed S.E.A.R.C.H.™ as a tool to help you navigate the complex process of selecting an MS DMT medication. The framework allows you to organize information about these medications and gets you thinking about which questions and concerns are most important for you when selecting a medication. Having a clear picture of questions to ask can also help facilitate and improve discussions with your treating physician around medication options.

So, if you are considering a new or different medication, let MSAA help you S.E.A.R.C.H.  for the right therapy for you! You can find the S.E.A.R.C.H. information on MSAA’s website, www.mymsaa.org, or call (800) 532-7667 and ask to speak to a Client Consultant.