Bridging the Communication Gap Between Parents with MS and their Children in Georgia

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."

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.

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 program with the children.

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.

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Four Days Left

As April comes to a close, so does MSAA’s partnership with Modify Watches. In a previous post we announced for the month of April MSAA is the beneficiary of Modify Watches’ “Together” watch.

Modify will be donating $20 to MSAA for EVERY “Together” watch sold during April (even for members of their Mod of the Month Club who are receiving a 20% discount). If you would like to purchase a Together Watch to support MSAA visit Modify’s Non-Profit Collection.

modify watch
 

 

Please share with your friends and family today! Support  MSAA  today with the Modify “Together” watch!

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Do you have questions about how the health insurance reform law (ACA) will impact you?

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.

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Celebrating our Earth…

What is Earth Day?

Earth Day is an event that occurs every year to promote and encourage environmental awareness and protection. It is a day to appreciate and conserve energy for our environment for future generations. On Earth Day you can get involved in the world’s efforts to protect the environment, just by making a few changes in your daily routine…

Here are some ways in which you can help conserve energy, not only for the environment but for yourself too!

For the Environment:

  • Turn off the lights! If you’re leaving the house, shut the lights off, this will help conserve power and energy and it will reduce your energy bills, too!
  • Don’t leave the water running in the sink when it’s not being used
  • Remember to recycle!
  • Keep your refrigerator/freezer doors closed to conserve power, especially when putting groceries away
  • Walk or ride somewhere…If you’re able, walk or ride a bike/other device to the day’s destination instead of driving your car; this can help reduce air pollution
  • Volunteer! Join the community to plant trees, flowers, or to recycle and help raise awareness for the environment!

For You:

  • Conserve your energy! Because fatigue is very common amongst those with MS, try to save your errands/activities for parts of the day when you have the most energy. For more information/tips on energy conservation, see the MSAA MSi Online Video Energy Conservation and MS at: http://mymsaa.org/manage-your-ms/videos/staying-one-step-ahead-4/
  • Stay cool! Summer is almost upon us, so staying cool can help you conserve energy and help you perform the day’s tasks. Consider the MSAA Cooling Equipment Distribution Program to help you stay cool this summer, http://mymsaa.org/msaa-help/cooling/
  • Enjoy the environment… Getting outside to garden or partaking in volunteer opportunities can help you enjoy what the earth has to offer and acts as a way for you to get involved in a meaningful activity!

So what will you do to commemorate Earth Day?

 

 

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A New Perspective on the “TO DO” List:

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?

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Swim for MS Updates – April 2013

MSAA is excited to share several updates on Swim for MS.

National Volunteer Week and Global Youth Service Day

Are you looking for a way to get involved with a great cause or receive volunteer hours? National Volunteer Week is April 21-27 and Global Youth Service Day is April 26-28! The theme this year is Celebrating People in Action.

How You Can Get Involved

During National Volunteer Week or Global Youth Service Day, take the pledge to Swim for MS and spread awareness in your community! Here are some ideas:

  • Pledge to swim 100 laps or jump 250 cannonballs and raise $250.
  • Pledge to distribute 50 Swim for MS brochures in your community*.
  • Pledge to ask 10 local stores to post a Swim for MS flyer on their window or on a wall*.
  • Contact your local community pool and set up a one-day Swim for MS event, such as pool volleyball, a team relay race, or a pool party.

*If you will be distributing flyers or posters, please submit this form. MSAA will contact you within 24 hours.

Pura Vida Bracelets

MSAA has partnered with Pura Vida Bracelets for MS Awareness! For each bracelet purchased, Pura Vida will donate $1 to MSAA. To get your Pura Vida Bracelet, please visit this link.

CaféPress

Swim for MS has a CaféPress site! Here, you can spread awareness by purchasing a Swim for MS hat, backpack, sticker, car magnet, and more! To view our Swim for MS shop, please go to CafePress.com/SwimForMS!

MSAA’s Partnership with Fitter and Faster

The Multiple Sclerosis Association of America (MSAA) is pleased to announce its new partnership with Fitter and Faster Swim Tour to help promote Swim for MS. Fitter and Faster Swim Tour (FFT) organizes and plans professionally managed swim clinics across the United States to teach and inspire swimmers of all ages and skill levels.

Serving as a distribution sponsor for Swim for MS, FFT will promote it partnership with MSAA to all those who attend their 2013 national clinic tour through flyers and onsite announcements, include the Swim for MS name on each participant’s identification wristband and post ongoing updates on Swim for MS activities to Facebook and Twitter.

And the April Winners are…

Missy Franklin Autographed Photo:
Congratulations to Jacob for raising $1,485 through Swim for MS in the month of March!

Disney One-Day Park Hopper Passes:
Congratulations Matt and Hannah for winning two Disney one-day park hopper passes!

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Four Legged Friends

I think that one of the most enriching and enjoyable experiences in life is to own a pet. Pets provide us with a feeling that is really hard to describe; it’s a feeling of companionship, support, and love all bundled up into one being. The feeling of love is one which is an unconditional love that no matter how bad of a day you are having, they are there to support you and love you. Pets provide comfort, a shoulder to cry on, or a “person” to talk to who can just listen.

For me, one of the best benefits of having a pet is- no talking back! No snide comments or judgments about why you are or are not doing something. I am sure there are people that think I am crazy because I talk to my dog like she is human. There’s just something cathartic about it, knowing that I can share anything and not be judged..

“A dog is the only thing on earth that loves you more than he loves himself” –Martin Buber

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When you have another life that looks up to you and relies on you for their well-being, it promotes a sense of self-worth. You want to be your best to provide for your pet. It is said that petting a dog releases beneficial hormones into the bloodstream known to be associated with healing and feelings of well-being. Not only that, but they make you laugh. And laughing is known to protect your body from stress. I laugh every day at dinner when my three year old dog gulp’s down her food like someone is trying to steal it from her, then proceeds to let out a HUGE belch when she is finished! The power of laughter is contagious and lightens your burdens and inspires hopes.

There is a pet out there for everyone. If you are having issues with mobility, or fear not having the energy to “play” with your pet, consider a cat, or a bird; both of which are fairly self-sufficient animals and can get by on their own during the time when you don’t have the energy. Maybe pet ownership isn’t for you at all, sometimes the financial burden and responsibility is too much.

That doesn’t mean you still can’t be affected by the power of a pet. There are several options for individuals to interact with animals through either therapy animal or service animal A therapy animal is trained to provide affection and comfort to people in need. They, along with their handlers, come to your home or facility for visits. Therapy animals differ from service animals in that they are not trained to perform a task for the benefit of an individual. A Service Animal is defined by the Americans with Disabilities Act as any dog individually trained to do work or perform tasks for the benefit of an individual with a disability. This can include guide, mobility, sound alert, and medical alert/response work. Service Animals can provide the same level of support and comfort that a therapy animal can, however, they take their jobs very seriously!

gypsy2

If you are interested in finding out more about therapy animals or service animals, there are several organizations and programs available to assist with your search. Pet Partners is one organization that helps people live healthier and happier lives by incorporating therapy, service and companion animals into their lives. Their website http://www.petpartners.org/ provides information and resources for individuals interested in therapy or service animals.
How have you been affected by a pet? Have you ever considered a service animal?

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Medications…How do I know what to pick?

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.

 

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MSAA’s Senior Director of Patient and Healthcare Relations Featured on K-LOVE Radio

Cindy Richman, MSAA’s Senior Director of Patient and Healthcare Relations, was recently featured on K-LOVE Radio as a part of the Closer Look segment that the station produces. If you missed Cindy’s interview you can hear it here:

https://soundcloud.com/emf-public-affairs-audio/closer-look-klove-wkvp-3-10-13

 

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MSAA’s Artist of the Month for April 2013

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the submissions.

April 2013 Artist of the Month:  Susan C. Russo – Pearland, TX

 

artist april 2013

 

 


 

 

 

“I have been interested in art since I was a child. I love the creative process. I just close my eyes and let my thoughts come to life. I feel that my work is an expression of God’s love and His gift to me. It would be a great injustice not to share the talent He has given me.

Additionally, art is a beautiful expression of not letting my MS gets the best of me. On days when I don’t feel all that well, I just pick up a brush or pastel and express my feelings in my paintings and drawings…”
Read more from Susan…

Be inspired – please send an online card featuring artwork by MS artist Susan C. Russo and spread awareness of MS and MSAA.

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