CANNONBALLLLL!!!

Cajun Cannonballs - FB 2Swim for MS participant Joshua Piro and the Cajun Cannonballs have done a fundraiser every Fourth of July to raise awareness of MS and funds for MSAA’s programs and services. This year, MSAA invites you to join the fun and get cannonballing this holiday weekend in support of the MS community. So grab your friends and family and Cannonball for MS! Submit your pictures by using #SwimForMS on social media and you could win some cool Swim for MS gear. Please visit SwimForMS.org/Support to register today.

Even if you’re not a fan of the water, there is still a way you can get involved and help improve lives today with MSAA. We’re looking for enthusiastic, passionate people like you to join our Street Squad!  Street Squad members work to spread the word about the Swim for MS fundraiser and raise awareness for MS.

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The MS Hug – Our community shares their experiences

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MS is associated with a whole host of common symptoms, like numbness and tingling, vision problems, weakness, cognitive deficits, among many others. But then there are symptoms that are less “text book,” and therefore not as well defined. One such symptom is the MS Hug. Cathy Chester, one of the contributors and patient advocates who writes regularly for MultipleSclerosis.net, wrote a wonderful article describing the MS hug, including her own personal experience with this frustrating symptom. It turns out that many of our community members also deal with the MS Hug on a regular basis, and many of them shared their thoughts with us in response to Cathy’s article. Here’s what our community had to say:

I didn’t know what an MS Hug was the first time I had one

  • I’ve had it happen a few times. The first time I went to the emergency room because I thought I was having a heart attack.
  • I had one LONG before I was diagnosed, after the birth of my child. I only recently read about it and realized what it actually was!
  • I have had two – one before I was diagnosed. I took an ambulance ride I thought I was having a heart attack. I then had one about a month ago. It hurt so badly it felt like my lungs were being squeezed.
  • I had my first MS attack when I was 12 weeks pregnant I thought I was having a heart attack couldn’t even lift my left arm up.
  • I’ve experienced the MS hug 3 times in 3 years. It’s a scary feeling. I felt like my entire body was in a vice. I don’t ever want to experience one again, not sure what brought it on. I thought I was having a heart attack, but thankfully that wasn’t the case.
  • I can’t believe this. I just recently, as in yesterday, started having this “hug” pain and wasn’t sure if I pulled a muscle or if it was another wonderful MS “thing” that I was experiencing…thank goodness I came across this.

I find ways to cope with an MS Hug

  • I do adaptive yoga for MS (Yoga Moves MS). They have taught us a banana stretch lying flat on our backs. I do this every day. I use to have the hugs several times a day, but now maybe once a month if at all.
  • I can feel it coming on, so I just have to relax and ride it out! It can take 48 hours or more.

I really struggle with MS Hugs

  • These are the worst ever hugs; I wish that they would never happen to us.
  • I get a quarter hug – just the front on one side – usually the left. That’s enough for me. I don’t like it at all!
  • It’s more like the MS python!
  • It’s the worse hug in the world. I don’t want another at all.
  • I get them sometimes, I think it’s like a big snake wrapping itself around me and squeezing tight! It isn’t very pleasant at all!
  • When I get over-tired, I get squeezed.
  • They are horrible – it’s painful and hard to breathe. Those are the kind of hugs I can do without!!!
  • I had one recently during a relapse…no fun!
  • I take Flexeril almost daily and it still hurts. I also was glad to come across this very thing a couple weeks ago too!
  • It isn’t fun at all, since you never know when it’s going to hit.
  • Hugs are supposed to be nice. This is more like a vice.
  • I call it the death grip because it felt like a boa constrictor was squeezing me for almost 3 days.

People who don’t have MS don’t understand what it’s like

  • I stopped telling anybody about the hugs and any other issues or pain. Nobody understands unless they have experienced it. My husband says, “just work through it!!” For everything. Really?
  • My husband doesn’t get it. When I am going through a 24 hour fatigue he says I get tired to I just don’t sleep like you do I just deal with it. Ugh! It’s just not worth an argument

Even my doctors don’t know what an MS hug is

  • The first MS hug I’ve ever had I thought it was a heart attack. The hospital checked me out and I was fine. My Neurologist said that it was a MS hug, like I would know this. The doctor at the hospital did not know this. Go figure.
  • My doctors don’t even know what it is, like usual with my symptoms they say its not related.
  • Had one of these 5 years ago and I was rushed to hospital with a suspected heart attack, as the medical staff had never heard of an MS Hug!

How about you? Have you ever had an MS Hug? What have you done to find relief? Share with us in the comments!

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Never an Easy Season with MS

By: Matt Cavallo

I was really excited. My allergies were horrible and I was feeling absolutely miserable. Why does this excite me you ask? When I feel horrible, I get inspired to write and was going to write a piece on allergies and MS as a follow-up to last year’s, Is There a Relationship between MS, Allergies and Histamine blog.

Then, this happened to my local weather in Arizona:

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Out here in Arizona, we say that three straight days over 100 degrees kills all the pollen. I don’t know if this is true or not, but my allergies certainly haven’t been bothering me since it got into the 100’s at about Friday of last week.

But guess what? The heat has been killing me!

Luckily, I got a Kool-Max cooling vest, similar to those in the MSAA’s Cooling Program. Now, even in the dog-days of summer, I can still participate in activities or chores and not feel trapped inside by the summer heat.

This got me to thinking, is there ever a perfect season to have MS? We all know that the summer heat, no matter where you live, is not good for MS. The symptoms of heat exposure can cause a pseudoexacerbation, or brief episode of neurological symptoms not classified as a relapse. These pseudoexacerbations can come and go all summer long as the heat and humidity persist.

However, during the cold dark of winter, us MSers yearn for a hot summer day. The low light of winter is not generally considered good for people with a Vitamin D deficiency, as most of us living with MS may experience. Winter also presents trip hazards with ice and snowy conditions, so those of us more prone to falls have a harder time getting outdoors and staying active during the winter.

Fall presents many of the same trip hazards. As soon as the leaves turn colors, they drop to the ground and become slippery to walk on. Fall also has dramatic temperature fluctuations where it can be summer hot one day and then brutally cold the next. This is where cold and flu season start to come into play along with the pseudoexacerbation possibility from those really gorgeous summer-like fall days.

That leaves spring as the only possibility for an easy season living with MS, am I right? Wrong. Spring is the reason I started writing this blog. It was nice this year, but the pollen kept me from enjoying it. I could not differentiate from an MS day or a sick-with-allergy day. The inability to breathe really caused excess fatigue rendering me unable to discern the difference between allergies and MS symptoms.

The truth is there is no easy season when you live with multiple sclerosis. However, each day is what you make of it. Don’t let the changing seasons stop you from living your life, rather adapt with the seasons and plan accordingly. Wear sunscreen, stay cool and don’t let MS stop you from having the best summer ever!

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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How Cool Are You?

Summer is fast approaching, so now is a perfect time to remind everyone about MSAA’s Cooling Program.

As the heat starts to build, so do requests for this free MSAA service, so please place your order now before the summer rush. Please know that there is a five-year wait period to reorder any cooling products if you have already received items through the MSAA Cooling Program.

You can download the MSAA Cooling Program application or call MSAA at (800) 532-7667, ext. 130 to request an application by mail. Have a cool and fun summer!


Not eligible to apply for MSAA’s Cooling Program? The following Stay Cool Tips can be used to help fight the heat:

  • Portable or personal fans are an inexpensive and quick way to cool the body. The fan helps to circulate the hot air and move it away from the body.
    • Try putting a cool rag in front of the fan to circulate the cold condensation from the rag.
  • Be mindful of clothing choices. Wear lightweight and loose clothing that allow for air circulation.
    • Embrace light colors. Dark colors absorb light and heat, light colors reflect light.
  • Search for indoor activities in local shopping malls or stores where air conditioning is always free.
    • Window shopping at the mall or a mid-day matinee at the movie theatre is a great way to take advantage of the often cool air provided at these locations.
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My MS Manager – A Free Mobile App for the MS Community

My MS Manager is the first-of-its-kind mobile phone app designed specifically to help individuals with MS and their care partners better manage the ever-changing course of the disease.

In December 2014, MSAA re-launched the updated app with new features that will enhance usability.The updated My MS Manager app includes options to:

  • Track symptoms and disease activity
  • Input and store important medical information
  • Generate useful charts and reports for easy tracking of treatments, moods, symptoms, and more
  • And – exclusive to My MS Manager – connect directly with your physician via the app to share your progress and reports securely and as needed.

This convenient tool is available as a free download for both Apple and Android mobile devices.

Apple App

Google

 

If you need assistance with the app, please call (800) 772-8277, ext. 178 or email us at apphelp@mymsaa.org.

 

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Summer Planning and Travel Resources: An MSAA Blog Re-cap

As planning begins for summer vacations or trips, many are left searching or wondering what resources may be available to help with planning. MSAA guest bloggers Matt Cavallo and Jeri Burtchell have written over the years to provide some helpful tips for the travelling MS community.

In Air Travel Tips for the MS Community; Matt, a seasoned traveler, provides his Five Steps to Stress-Free Air Travel for People Living with MS. Matt writes, “Travel is stressful for everyone. Airports are big, busy and fast-paced. Security lines can be long and the thought of standing, unpacking, and repacking at TSA is enough to unravel even the most seasoned traveler”.

Often times the smaller details are those which are overlooked when planning a trip. Those small details such as the size of your carry-on, or the snacks packed in your bag can often make or break a trip. In Jeri’s Summer Travel Tips for Flying with MS Part 1 and Part 2, she identifies some of those smaller details that should be thought of ahead of time in order for smooth sailing….or flying in that matter.

We often learn through the experiences of others. Please share your flying or travel tips in the comments below.

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MSAA is Moving!

The Multiple Sclerosis Association of America (MSAA) is moving to a new location!

As of Wednesday, June 24, 2015, the address for MSAA’s National Headquarters will be:

375 Kings Highway North

Cherry Hill, New Jersey 08034

Please note that MSAA’s phone number, email address, website URL, fax numbers, and regional office contact information (other than the Northeast Regional office) will all remain the same.

Please update your records with our new address and continue to stay in touch with us!

 

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Summertime Memories

The summer season usually conjures up warm memories for me (sorry, no pun intended!) of times when things were simpler being young and summer was the best time of year. Growing up, my family used to gather at my aunt and uncle’s house for get-togethers and special occasions, especially during the summer months because their house was attached to a private elementary school where there was a lot of open area. They acted as caretakers to the school grounds so we had access to two different playgrounds equipped with slides, swing sets and jungle gym activities and a large tot-lot for playing basketball and volleyball. We often had family barbecues there and were so excited when the 4th of July holiday was celebrated because we could watch the fireworks right from their porch. These are some of my best memories I hold from my childhood – playing outside with relatives and being with family and thinking the summer should never end.

As we grow older our memories stay with us – as special pieces of time you’ve stored for yourself to take out and reminisce over whenever you’re feeling sentimental, or just want to recall something good. There are certain triggers that can activate these memories – songs, movies, places, things. For me, my summer memories are triggered by the smell of flowers and grass, barbecue grilling – and the charcoal kind, not the fancier gas grill devices seen all over the place nowadays. Rice Krispy treats – my grandmother used to make the best treats for summer occasions. And mosquito bites – I know this one is a bit strange, but those little buggers would eat us alive playing outside during the summer!

The point is, no matter what the memory is or its trigger, these precious fragments of time that represent moments throughout our lives are something to treasure and hold onto with care. They allow us to go back to times we remember fondly and that gives us hope that the memories could possibly be recreated again someday.

What’s your favorite summertime memory?

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A Little About Me

Meeting new people and learning new things is always exciting. I thought it might be helpful for you to know a little more about me. My name is Melissa Young and I am the new Manager of Client Services. I have my MSW from the University of Pennsylvania. In my spare time I enjoy playing golf and tennis, cooking and spending time with my family and friends.

As I mentioned in my bio, I love to cook. I also enjoy watching cooking shows on TV, and trying to replicate the dishes for my family. It’s always fun to try new things, and sometimes I even succeed at making the dishes look like they do on TV! My favorite show is “The Pioneer Woman” starring Ree Drummond. Not only is she a fabulous chef, but she is a blogger too. I read her blog faithfully and I think the introduction to her blog speaks to how I view my blog. It reads:

“I am no life expert. Not by a long shot. I don’t have all the answers. Sometimes I don’t have any answers. Sometimes I have some answers. Sometimes I have what I think is an answer but it turns out not to be an answer. Sometimes I dance around the house in overalls and stilettos. But every once in a while, perhaps because I’m an older sister myself, perhaps because I’ve lived 43 years, perhaps because I’m constantly seeking answers myself. I’m able to give an answer that works for someone.”

I’ve been a social worker for over 15 years and have had to deal with my fair share of unique and difficult situations. I have a good heart and always try to do the right thing. I know I don’t know everything (far from it) but I am here for you as a resource and will do my best to get you the answers you need.

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June 2015 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2015 Art Showcase – celebrating the work of artists affected by MS.

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 new submissions.

June Artist of the Month:
Paula Breiner – Tamaqua, PA

 Paula Breiner - Sunny Disposition

About the Artist:
“I am an MS Survivor. No, I am not cured; it means I live day to day with this disease. I recently took a painting class to help strengthen my hand, to better my thinking and concentration, and because I haven’t drawn or painted since high school back in the 80’s.

I was diagnosed in 2006 with MS. Over the years I have developed more symptoms, and last year I was put on Rebif. I have a very loving and supportive husband whom I will celebrate our 30th anniversary with this November. We have two beautiful daughters and four amazing grandkids.”
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Be inspired – please send an online card featuring artwork by MS artist Paula Breiner and spread awareness of MS and MSAA.

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