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!

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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!

 

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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!

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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!

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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.”

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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?

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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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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: https://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, https://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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