Time to Cool Down – Cooling Vests for MS Heat Sensitivity

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Though spring has just begun for many around the country, some individuals may already
be thinking about the upcoming summer months and what that means – heat! For individuals with MS who experience heat sensitivity with their MS symptoms, the idea of facing the heat and humidity the summer season brings can be stressful. But it’s important to know there are some ways you can cool your body down and feel some relief with those hot and humid days. MSAA offers a Cooling Equipment Distribution Program which provides different ice-pack style cooling vests and accessory options that can be worn on the body for relief from the heat. With differing vest styles ranging from those that can be worn under or over your clothing, and kit accessories that include cooling wrist and ankle wraps, the program has something to fit individual needs. For more information, see the MSAA website at http://mymsaa.org/msaa-help/cooling/.

*Please note the program eligibility requirements within the application.

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So Long March…

It’s time to say farewell to another month in the calendar year, and for most around the country, a hopeful farewell to the end of winter. It’s been a harsh season for most of the US, so with the end of March we welcome a warmer, though often rain consumed month of April. As we embark upon the end of this busy month, it also marks the end of Multiple Sclerosis Awareness Month, though only formally on the calendar. MS Awareness has the ability to continue the whole year round, and though its promotion in the month of March draws to a close, the MS community can continue raising awareness for the disease throughout the year. Continuing to increase education, advocacy and support for those with MS are some of the goals the community continuously strives for. So while the month of March comes to a close, it brings with it the opportunity to enter a new phase of the year with the same objective: to increase awareness of MS.

March MS Awareness Month calendar Graphic

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Announcing MSAA’s New Online Aquatic Center

Online Aquatic Center

MSAA is pleased to unveil the Swim for MS online Aquatic Center at SwimForMS.org – an exciting new resource for individuals with MS and healthcare professionals.

Swimming and other forms of water-based exercise have well-established health benefits for many fitness levels. For people diagnosed with MS, the cooling and buoyant properties of water can create an ideal exercise environment allowing for movements that may not be possible on land, while keeping them from overheating. Research suggests that the benefits of water-based exercise for individuals with MS include improved flexibility, muscle strength, mobility function, psychological well-being, and overall quality of life.

The Swim for MS online Aquatic Center features resources developed to help you learn more about aquatic exercise, including the following sections:

• About Aquatic Exercise and MS – Comprehensive information about the benefits of aquatic exercise and how water-based activities can be adapted to fit all levels of ability Tip Sheetand types of MS
• Aquatic Resources – Tips and suggestions on how to begin an aquatic exercise program and where to find a pool in your area
• Multimedia Center – Inspirational videos of people living with MS who incorporate swimming and aquatic classes into their healthy lifestyle plan
• For Healthcare Professionals – Research findings and supportive information on aquatic exercise and MS for neurologists, physical therapists, rehab specialists, and aquatic fitness instructors

To learn more about aquatic exercise and MS, please visit our new online Aquatic Center at SwimForMS.org!

The Swim for MS online Aquatic Center has been developed through a collaborative sponsorship with Genzyme, a Sanofi company.

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An Adventure of a Lifetime

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Breathtaking, serene, and majestic are just some of the many words which come to mind when describing my incredible three-day journey into the wilds of Wyoming and Montana during the 2014 Wyoming/Yellowstone Charity Snowmobile Ride. Sponsored by the Cody Optimist Club and supported by Teva Pharmaceuticals, this year’s 16th annual ride was a huge success raising nearly $50,000 to help support MSAA’s programs and services.
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I was honored to represent MSAA and attend this year’s event, which occurred over Super Bowl weekend. It was, without a doubt, one of the most remarkable experiences of my life. As a first-time snowmobile rider and flat-lander from New Jersey, I had to quickly adjust to altitudes of more than 8,000 feet, learn to operate a 550 cc “sled,” and maneuver through some pretty challenging mountainous terrain.

In taking on this new adventure I did my best to maintain pace with the pack, but admittedly went slow and cautious through the hairpin curves. This strategy helped keep me alive (a Pete snowmobilemajor concern of my wife) but also generated some good natured ribbing from the seasoned veterans and a few crazy rookies! I also managed to get my sled stuck in a snowbank. As a result, I earned the coveted “bone” award, which I accepted with considerable pride.

With each day’s passage I was not only struck by the remarkable beauty of the surrounding landscape, but also by the heart-warming beauty of everyone connected to this ride. Led by ride organizer Ed Livingston, the Cody Optimist Club, representatives from Teva and the entire team of dedicated riders all come together once a year to relive fond memories, create new adventures and, most importantly, help improve the lives of people with MS and their families. On behalf of myself and MSAA, I want to express my sincere appreciation and deepest gratitude to everyone associated with the Wyoming/Yellowstone Charity Snowmobile Ride for providing 16 years of unbelievable support and dedication to the MS cause and for giving this Jersey boy the adventure of a lifetime!

MSAA’s Vice President of Programs and Services Peter Damiri has been with the organization for almost 25 years and worked as the director of public relations before moving to MSAA’s programs and services department. He oversees MSAA’s existing programs and services, as well as any new program initiatives. He is also involved with many other aspects of patient education, including coordinating and managing the production of MSAA’s online educational videos and webinars. Mr. Damiri has a bachelor’s degree in communications.

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Welcoming Spring with New Activities for the MS Community

March 20th marks the first day of spring, and for many, you can start to see and feel the
signs that summer is approaching. The days become longer, the air becomes warmer, and the plants begin to grow again. I personally am looking forward to the evenings on the porch after work. – sitting with my feet up, just watching as the neighbors stroll by. The neighborhood becomes active again, with people stopping to say ‘hello’ instead of running inside to beat the cold. Wildlife starts to show their furry faces, popping by the porch to grab some treats.

Over this harsh New Jersey winter, I began to create a list of things that I wished to accomplish once the weather became milder. I welcomed 2014 as the year to try something new, and have pushed off many of these new things until now. Cabin fever has gotten a hold of me and I can’t wait to get out! I plan to become more active, but not in a physical sense. I want to spend more quality time with people and enjoy just being present in the moment. Taking the time to fully invest myself in a task with a friend, without thinking about the thousands of other things I need to do, or rushing off to the next event.Spring email sign-up_edit

With the nice weather, you may also wish to be more active, perhaps joining an MS group,
or attending an educational MS event in your area. MSAA provides free local MS events throughout the country where you can learn about a certain topic, often presented by an MS specialist. The Calendar of Events on our webpage provides information on the type and location of these events. Events are continually being added every day. If you register with MSAA, you can receive information via e-mail or regular mail when an event is coming to your area. Registration is available on our webpage, or, you can reach out to our helpline at 1-800-532-7667 ext. 154 and a helpline consultant will be happy to take your information.

So what do you look forward to most in the spring? Do you have any plans or things you would like to try?

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Multiple Sclerosis Awareness (when you might not want people to be aware)…

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March is MS Awareness Month. As an advocacy group, you will hear MSAA discuss our available resources, and encourage you to get out and be active about raising awareness for MS and supporting programs which benefit individuals with MS. We will promote and support expanding knowledge and information about MS. With all of that going on, it might feel like you need to wave a flag shouting, “HERE I AM. I HAVE MS!!!”

As the Manager of Client Services at MSAA, I wanted to acknowledge that there are times when you (or your friend or family member) may not want others to know about a diagnosis. While you may want to be an advocate to spread awareness and information to help people understand about MS, you may not want certain people (i.e. an employer, a new boyfriend, or a casual acquaintance) to know you or a loved one has MS.

There is nothing secretive about a diagnosis, but it is your (or your loved one’s) own personal health information. While some people might share that they had a heart attack or stroke with anyone they meet, others might feel medical information is no one else’s business and only talk about it with a doctor or close family member.

So, if you want to be an advocate but not shout a diagnosis from the rooftops, what can you do?

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On social media sites:

Think before you post. Are you comfortable with everyone seeing your update or picture? If not, make sure to check your privacy settings before sharing personal (health-related) information so that only people you want to learn about your private information, such as close family or friends, can see your updates and pictures.

In person:

If you want to talk about MS in the community, know that not everyone who spreads information and encourages activity for a cause will be personally affected by it. If you don’t feel comfortable sharing your diagnosis, make it general: “ I’m helping out with a cause… Can you help too?” or: “There is a charity I support, and I wanted you to know about them and what they do” are generic ways to introduce information about “your cause,” even if you don’t want anyone to know it is personal.

In many of these situations, there may be a future point in time where you might want to share a diagnosis. On the job, you may decide to ask for a reasonable accommodation and share a diagnosis when needed. When your boyfriend goes from being casual to serious, you might feel comfortable disclosing. Likewise, if a casual acquaintance becomes a good friend, you may want to share. If not, there is no pressure. You can still be an advocate for MS without disclosing a diagnosis.

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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.

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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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What are your plans? Support the MS community this Monday

By Kimberly Goodrich, Senior Director of Development

Getting through the obligations of the Holiday season can be taxing. Sometimes it seemsMLK Day with logo
as if every waking moment is scheduled with items to do or places to be. As we ease into the New Year, it’s nice to take a day to slow down, breathe, and do something that feels good rather than simply crossing things off my To Do list.

Despite the busyness of the holidays, I like to take a little time around now to reflect on how grateful I am for the opportunity to be with family and friends. Current research asserts there are numerous health benefits related to gratitude. Taking time on a regular basis to list the things you are grateful for yields better sleep, improved health outcomes and higher overall satisfaction with life. And it’s easier than pushups!

This brings us to Monday.

mlkday200x200On Monday we will celebrate the spirit and generosity of Martin Luther King, Jr. In 1994, Congress declared the Martin Luther King, Jr. Holiday as a day of service. Dr. King believed we all had a duty to serve others and that through our collective actions, social problems could be solved. Rather than taking the day off, we are encouraged to find ways, big or small, that we can give, benefitting our community and spreading gratitude.

 

What are your plans for this day of service?

Keep in mind that not all service requires a great deal of time or money. Kindness can fill a need as easily as dollars. There are many ways to volunteer or serve:
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I’m looking forward to Monday. Having made a list of things I’m grateful for, I hope to awaken feeling rested and positive. I will share those feelings by spending time volunteering for a disabled sports group I’ve been involved with for several years. Afterwards I plan to make a donation to a few groups that are important to me and relax with family. Now that’s a To Do list to be grateful for.

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*About Kimberly

I am the Senior Director of Development at MSAA and have worked in the nonprofit arena for over 15 years. I love reading, running, theatre and the Green Bay Packers. I volunteer with the Disabled American Veterans teaching outdoor sports like skiing and kayaking to injured veterans and find that I receive much more from them than I am able to give.

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Got a question? Chat with us.

If you haven’t already tried it out, check out MSAA’s Chat feature…

Got a question? Chat with us.

From Monday through Friday from 8:30 AM to 5:00 PM EST, MSAA offers a one-on-one chat feature, allowing you to ask questions about MS while you browse MSAA’s chat with uswebsite.

Chat about:

  • MSAA’s programs
  • MS information
  • Helpful resources

Our Client Service Consultants can help you by explaining programs offered by MSAA, locating MS resources, and finding other information that may be of help.

Check it out here.

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Happy New Year!

Welcome 2014! Another year has come and gone, and for many 2014 signifies a new beginning and novel changes in the year ahead. It marks a time to make resolutions, changes, and achievements that will signify this year and make it different than ones past. New hopes, wishes and dreams are some of the things that represent this new beginning, as people try to make the best out of a fresh start. Some individuals may set goals while others strive to complete tasks day by day. No matter the method used in bringing about changes in the New Year, hopefully 2014 brings a time of hopefulness and promise.

I set a goal to exercise and eat more vegetables…what is one of your goals?

All the best for 2014!

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