About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

I Got a FitBit to Get a Bit Fit

By: Jeri Burtchell

Like that commercial for cassette tapes from the 70s wondered, “is it live or is it Memorex?” I’m becoming unsure of what symptoms are due to my MS, and which ones I would have had anyhow. Now that I’m a quinquagenarian (who knew people in their fifties had a name?), I’m realizing not everything can be blamed on MS.

There’s new research that shows exercise can help MS fatigue which to me seems counter-intuitive. If I can’t even stay awake in the afternoon, how am I expected to exercise?

Inspired by friends who are losing weight and exercising, I have decided to become more fit. My goal was simple: I just want to get up in the morning and not hobble about like a wooden marionette. Maybe stretching and walking would be good for me.

It turns out that I’m one of those people who needs to measure progress and see rewards. I needed a tracker. While researching the various gadgets I happened on FitBit and I fell in love with the Flex. It’s a wristband that tracks steps, miles, calories burned, and even tracks your sleep. It seemed like the perfect solution.

If you are in your fifties and have MS and decide to buy one of these, do NOT leave the default settings in place. The daily step count goal is 10,000 steps. If you’ve never paid attention to how many steps you take in an average day, you’d be surprised, but you might also already know that 10K steps is pushing it for a 50something, otherwise inert person.

The package came on a Saturday so I gathered the kids and we headed off to nearby Ravine Gardens State Park where the azaleas were in full bloom. Criss-crossed with trails for the physically fit, the park is circled by a paved road so you can also enjoy it from the comfort of your Honda. In retrospect, that’s probably where I should have been.

The energy and excitement the kids were feeling was contagious. I was excited to start getting fit by becoming more active and I planned to do it by walking. I knew I couldn’t keep up with their pace however, so I let the kids go on ahead planning to meet back in the parking lot.

This ravine was not new to me. Thirty years earlier I had walked it often when my oldest son was small. I remember pushing a stroller and casually communing with nature. So the sign at the park entrance that clearly stated the drive measured 1.8 miles had to be wrong… or maybe 1.8 miles was nothing, since my FitBit also said I should be able to walk 5 miles in a day.

I started out strong, pacing myself and walking confidently, breathing in the fresh air and appreciating the sun-dappled flowers.

But before long I found myself wilting, and searching out the nearest bench to rest on. That’s okay, I thought to myself, there’s no hurry. I can rest as often as I like.

Soon, however, I was about halfway around the circumference of the park when panic set in. I really didn’t think I could make it out of the park. I dialed my son’s cell phone to let him know maybe he should send one of the many park employees for me, riding one of those golf carts.

His number went straight to voicemail and my texts went unanswered. As usual, he’d forgotten to charge it.

Sitting on a bench I weighed my options. Walk until I fell on my face, stay on the bench until someone came looking for me, or take my time and make slow progress, sitting often on benches along the way.

I opted for the latter. My fun excursion into the world of the fit became a fight to make it to the next bench where I could collapse and wait until my poor legs felt they could try again.

A good two hours after our trip to the park began I finally straggled into the parking lot where both kids ran up to see if I was okay.

That was four weeks ago and since then I have learned a lot. I have learned that while I’m not a teenager any more, I can walk a mile working out to exercise videos. That way, if I get exhausted I’m already home. I’ve also learned I need to listen to my MS.

I may have overdone it that first day in the park, but I haven’t given up. In the month since I started, I have lost almost five pounds, I no longer need to nap, and I have more strength. There’s no denying that my FitBit is helping me to get fit — one little bit at a time.

References:
http://contributors.healthline.com/mind/listen-your-body-msers

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

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Latest Issue of The Motivator Now Available for the MS Community

savas2The Motivator is MSAA’s award-winning magazine provided to the MS community and to our generous supporters. Distributed twice per year, this publication addresses the physical, emotional, and social issues that arise with MS, and provides information and support to many individuals affected by this disorder.

We’re pleased to announce that the Winter/Spring 2014 issue of The Motivator is now available to read!

savas

Cover Story:
The Emotional and Psychological Symptoms of MS
… The symptoms of depression, anxiety, and pseudobulbar affect (PBA) are described, along with effective treatment strategies. Important information is also given on how these symptoms affect roles and relationships, sexual function, and self-image.
Read the full story

Feature Story:
…Competitive “biosimilar” drugs may soon be considered for approval. Read about how these “highly similar” drugs may affect procedure, treatment, and cost.
Read the full story

AquaticCenter-Screen

Program Notes:
…Details on MSAA’s new Swim for MS online Aquatic Center are highlighted. This national program initiative supports the awareness, understanding, and availability of swimming and aquatic exercise as a positive wellness opportunity for the MS community.
Read the full story

Read the latest issue of The Motivator

 

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New Year’s Resolution Follow Up

By: Matt Cavallo 

Raise your hand if you have stuck to your New Year’s resolution. Believe it or not, we are a quarter of the way through 2014 and reserving the right to recycle our resolutions for next year. I’ll be the first to throw myself under that bus! Seeing as we are a quarter of the way through the year, I wanted to follow up on some of the goals that I set and challenge myself to recommit to my original 2014 goals.

In January, I wrote that I was carrying about twenty one pounds of extra weight. This extra weight was making my legs weak and numb, my fatigue levels were high, and my clothes were uncomfortable. I resolved to lose twenty one pounds. My thinking was that in addition to my multiple sclerosis, the extra weight was contributing to the weakness in my legs and fatigue. My plan was to eat right, eat less and exercise more.

Eating right is a challenge to me. My line of work has me traveling the country almost every week. Seven out of eight weeks between January and February, I traveled. In fact, I am writing this right now on a flight from St. Louis back home to Phoenix. Between living in hotel rooms and the demands of my job, I didn’t have the strength or energy to get a healthy meal when there was a convenient drive-thru option. These eating decisions were the reason that I was struggling to button my pants!

Despite traveling extensively, I was determined to not have to buy new pants. I made the decision that I was going to lose weight on the road by changing my habits. First, I started with breakfast. The hotels that I stay at always have a breakfast buffet. There is an endless supply of bacon, eggs, toast and pastries. Most mornings I can smell the bacon long before I reach the buffet. As much as it pains me, the first change I made was skipping out of the buffet line and heading right to the yogurt and fruit. This change has been hard for me, and there are some days that I can’t resist a big breakfast, but I find that starting the day on the road with yogurt, fruit and a glass of water can be fulfilling and helps my digestive process.

For lunch, I have also been eating lighter. I work in hospitals, so I generally eat lunch at the cafeteria. The cafeterias generally tempt me with yummy burger, pizza or fried chicken options. Again I hold my nose and walk past temptation to the salad bar. I typically eat a salad and top it with some chicken. In the past, however, I would have smothered my healthy salad with a nice creamy ranch dressing, but lately I have opted for the lighter vinaigrettes. These dressings coat the salad easier, so you use less, and they are typically fewer calories than the creamy dressings I prefer.

These decisions that I make for breakfast and lunch afford me some slack at dinner. While my preference at the end of a long day of work on the road is for a double-stacked greasy drive-thru burger, large fries, and chocolate shake, I have been choosing healthier options. Instead of driving through, I place orders that force me to get out of the car. Instead of greasy, fried goodness, I have also been choosing lighter, grilled options.

The other thing that I am doing is consuming smaller portions. Part of it has to do with the fact that I don’t want to buy new pants, but I have found that once I cut back on my portion size, my body got used to it pretty fast. When I was consistently eating heavy meals, I needed more food. Now that I am eating less, I find that I get fuller faster. I am by nature a fast eater, who in the past would clean my plate before others around me had barely started. I now make a conscious effort to slow down and enjoy the food. By doing this, I don’t always have to clean my plate. Drinking more water throughout the day has also been a daily goal of mine. I found that some of my hunger may have been more related to being dehydrated than actually hungry.

With all of these changes, I have lost eleven pounds, which is halfway to my goal weight. My legs feel lighter, and I am less fatigued. And yes, my pants are now less of a struggle to button!

While I am winning the battle with diet, I am losing with exercise. I have made my annual post-resolution trip to the gym. I worked out, felt great and haven’t been back since! There is a free gym in every hotel where I stay, but I find myself alone in my room catching up TV shows or movies that I can’t watch at home because of the kids. I do tend to take the stairs instead of the elevator and keep true to my daily walks, but I know that I would feel so much better if I could just commit to working out.

So, a quarter into the year, and I am doing OK with my resolutions. I have lost half of my goal weight by making better eating decisions which included eating healthier and having smaller portion sizes. It was a struggle at first, but I feel better only ninety days into this year than I did last year. While I am doing well with diet, I have not followed through with exercise. Much like diet, once I establish a routine, I’ll be used to it and it will become natural. I am not there yet. However, New Year’s is not the only time for resolutions. You can recommit to feeling healthier anytime during the year. Are you accomplishing your resolutions? What are you going to do to get back on track? Invest in yourself because you are worth it, and be the change you want to be.

*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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Is There a Relationship Between MS, Allergies and Histamine?

By: Matt Cavallo 

Spring is in the air. So is pollen. With the pollen, my seasonal allergies are in full bloom. I am still sneezing from the last time I stopped to smell the roses. With my seasonal allergies at their peak, I wondered: is there a correlation between multiple sclerosis and allergies?

When I started my research, I was instantly disappointed. All of the initial research pointed to no correlation between MS and allergies. In fact, a 2011 study by the National Center for Biotechnology Information (NCBI) titled, Association between allergies and multiple sclerosis: a systematic review and meta-analysis, concluded that there was no connection between allergic diseases and MS.

While the initial research suggested no direct correlation between MS and allergies, the deeper I dug, a relationship between histamine and multiple sclerosis started to evolve. According to the Encyclopedia Britannica, histamine is a “biologically active substance found in a great variety of living organisms…In an allergic reaction—the immune system’s hypersensitivity reaction to usually harmless foreign substances (called antigens in this context) that enter the body—mast cells release histamine in inordinate amounts.” The definition goes on to explain that the antigens can cause inflammation. After reading this research, my questions became: Does the inflammation caused by these antigens contribute to MS symptoms? And is this partly why I feel worse when my allergies are at their peak?

My questions lead me to research more about histamine and MS. As it turns out there are research studies ongoing exploring the relationship between MS and histamine. A study of histamines and MS on Science Daily found an “unexpected connection between pathways involved in autoimmunity and allergy and suggests previously unrecognized connections between these very different types of immune responses.” The NCBI concluded in a 2013 study, Elevated CSF histamine levels in multiple sclerosis patients, that MS patients had higher histamine levels than the control group and that further exploration was needed.

I am not a scientist, nor am I a doctor. I’m just a guy with MS and bad seasonal allergies. I know that when I feel crummy due to my allergies, that my MS symptoms seem to flare. There are two sides to the argument: one suggests no relationship between MS and allergies, the other suggests that a key immune response to allergies, histamine, may play a role in multiple sclerosis. Until they are able to figure it out, I’m still not going to stop and smell the roses. Hopefully with science and research, one day I will be able to.

Resources:
http://www.ncbi.nlm.nih.gov/pubmed/20456246
http://www.britannica.com/EBchecked/topic/267004/histamine
http://www.sciencedaily.com/releases/2011/01/110131133317.htm
http://www.ncbi.nlm.nih.gov/pubmed/23659456

*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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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.

pool

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An Adventure of a Lifetime

Pete snowmobile 2

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.
Pete bison

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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If you need health insurance…

Don’t forget that Open Enrollment for purchasing health insurance through the new Health Insurance Marketplace ends this year on March 31st. 

If you need health insurance_blog

If you need health insurance and have not already visited the website www.healthcare.gov or called an Insurance Navigator at (800) 318-2596, do it now! Give yourself time to make an informed decision about the best options for you. Five million Americans have already enrolled.

Remember, once the 2014 Open Enrollment period closes, you will not be able to purchase insurance until 2015 Open Enrollment begins, unless you have a qualifying life event (such as the loss of a job or the birth of a new baby). 

Need more information? You can also review MSAA’s website for important information about how the ACA impacts you.

Learn more button

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Spread Some Sunshine For MS Awareness Month

jeri

March is half over and MS Awareness month is in full swing. We’ve come a long way in helping people understand the difference between multiple sclerosis (MS) and the disease known for “Jerry’s Kids.” I have to admit, I even made that mistake when I was first diagnosed.

Lying there in the hospital bed, feeling vulnerable in the one-size-fits-nobody cotton gown, I listened as my doctor broke the news in his most apologetic tone.

“I can’t say for sure, but it’s possible you have multiple sclerosis,” he stammered.

“You mean like that disease with the telethon?” I asked.

“No, you’re confusing MS with muscular dystrophy,” he corrected me. But that was all I got. No literature or other helpful information that might explain it further.

So here I am, fifteen years later, reflecting on what has changed. Granted, it seems less folks are making that mistake, but we’re a far cry from the level of “awareness” needed to make MS a household word. Wouldn’t it be nice to see medical breakthroughs in MS as part of your typical nightly news program?

Maybe all MS needs is a good PR campaign. That’s where we who are living with it come in, sharing the importance of our cause and getting folks to pay attention.

But how do we go about affecting this change? How can you and I raise awareness so that the words “multiple sclerosis” roll easily off the tongues of healthy people? It takes communication on every level and that should start at home.

Don’t be overwhelmed thinking you have to have a grand plan or platform, or that your voice doesn’t matter. Every voice matters! And I’ve got a simple plan for spreading MS Awareness:

  1. Learn: You can’t explain MS to someone else until you are comfortable that you, yourself know what it is. So learn all you can.
  2. Simplify: If you’re trying to explain how MS affects you, do it with analogies. I always compare my nervous system to an old lamp and MS has caused its cord to fray. My brain flickers just like the light when the signals can’t get through. Depending on where it’s frayed, my symptoms will vary.
  3. Express yourself: Don’t think you have to be a writer, speaker, or artist to share what you know about MS. Use your own unique talents. If you like to bake, make cookies with “MS” written in frosting for a conversation starter. Maybe you’re into woodworking, so make a wallhanging or mailbox with an MS theme. Like to sew or make jewelry? Design your own MS emblems and add them to your ensemble in order to spark interest. Everyone has some gift to give to the MS awareness campaign.
  4. Get Social: The internet is a tool of empowerment. Share awareness graphics with your friends on Facebook.  MSAA_month_badge3Tweet links to Awareness fundraisers and events on Twitter. Create a video to help the newly diagnosed understand it’s not the end of the world.  Remember to use hashtag #MSAwareness when posting on social media.
  5. Reach out: Mother Teresa knew what she was talking about when she said “Never worry about numbers. Help one person at a time and always start with the person nearest you.” That’s the best advice I ever heard, after all, she made a difference, right? Start with family and friends and before you know it, you are telling the produce manager at the grocery store all about MS.

Think of awareness as sunshine. Every time we spread our MS message, sharing the need for research and funding, we shine a little more light on our cause–and our future looks that much brighter.

References:

http://www.healthline.com/health/multiple-sclerosis/youve-got-this

Credit:

Hope for a Cure” illustration by Jeri Burtchell

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