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.

MSAA’s 2017 Improving Lives Benefit

The folks here at MSAA are getting ready for this year’s Improving Lives Benefit, where supporters from across the country join us for the night to celebrate the accomplishments of MSAA champions in the MS community.

This year, our honorees are:

  • Shana Stern (MSAA Art Showcase Artist) – Diagnosed with MS in 1999, Shana has adapted her style of painting and creating art, as new symptoms and challenges presented themselves.  She has been an active participant in our Art Showcase since 2013.
  • Walker Reynolds (Swim for MS Volunteer) – Inspired by his mother Shana Stern’s determination and creative spirit, Walker wanted to give back to the MS community and did so by raising more than $1,800 for MSAA as a Swim for MS Volunteer participant.
  • William Saunders (MSAA Board of Directors’ Treasurer & Founder of Meeteetse Advisors) – Having served as the MSAA Board of Directors’ Treasurer for 8 years, William has been instrumental in helping the organization improve more lives in the MS community by supporting MSAA’s mission.

MSAA’s Improving Lives Benefit will be held on Thursday, March 30, 2017 in Philadelphia, PA at The Downtown Club.  If you are interested in attending, learn more at support.mymsaa.org/benefit.

While not everyone is able to make it to Philadelphia to help us honor these MSAA champions, anyone can participate in our national online auction.  Information on auction packages, which include a variety of starting bids, is available here.

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President’s Day at MSAA

Please note that MSAA’s offices will be closed on Monday, February 20, 2017 in observance of President’s Day.

The offices will reopen on Tuesday, February 21, 2017 at 8:30 am.

 

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Invisible MS Symptoms and How They Affect Relationships – Even When They’re Subtle

By Stacie Prada

Being diagnosed with and living with a chronic incurable condition can test and change every relationship a person holds dear. Invisible symptoms are especially tricky. I know after my Multiple Sclerosis diagnosis I didn’t want to burden others with my problems. Just because I had a life altering condition, I didn’t think it should affect everyone else.

One of the adult life lessons I’ve learned is that people who care about us WANT to help. Withholding our struggles increases stress on our part and creates a feeling of being pushed away on theirs. They hate feeling helpless. We do too, but we have more information at any point than they do.  Think about when you’re driving a car in inclement weather compared to when someone else is driving and you’re in the passenger seat.  When you’re driving, you know whether you have control of the vehicle or not. You know how well the brakes work, how alert you are, and how long it will take you to stop if something happens. A passenger has little information other than what they see and feel, and they have to rely on their trust in you. Having MS is like being the driver, and our friends are the passengers when it involves our health.

While their intentions to try to fix our problems, make us feel better, or help in any way they can may sometimes feel pushy and cause conflict, working through the unknown and developing a new relationship dynamic is well worth the effort. All of the relationships I still have today are intensely richer for the awkward conversations we’ve stuck with and the commitment we’ve made to interacting differently than we did before I was diagnosed.

Invisible symptoms like fatigue, pain, numbness, balance problems, bladder and bowel problems, cognitive issues and heat sensitivity can affect how we feel even when we think we’ve got it all under control. There are times when I think I’m doing fine or faking it well, and dear friends will say they notice I’m not feeling well. It’s especially impressive how well people know us when symptoms are subtle and we may not even realize we don’t feel as well as usual. For me I notice that my patience lessens and I have a tendency to feel more pressure from people by what they say.

I asked two dear friends what they had to say on this topic, and one said that what hurts her feelings is when I hold back and distance myself. I can justify it by saying I don’t want to worry her or bother her, but it’s more likely that I don’t feel like admitting I’m having an issue or that I’m not up for hearing advice in that moment. One skill I’ve tried to beef up is to recognize when I’m feeling pressure or don’t want to talk about something anymore and say so. I’ve noticed it’s harder to do this the longer I wait to say something, And while saying I’m not up for discussing something in that moment may hurt their feelings, I think it’s better than continuing to suffer silently. The other skill I’m working on is to tell them that while I’m not up for it in that moment that I do appreciate their concern and perspective. I also want to start saying that I think I can continue the conversation another time.

Being self-aware, communicating consciously and not reactively, and considering other people’s perspectives has made living and loving well with MS possible for me. It’s definitely improved my relationships, reduced my stress level and contributed to a life I love.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/ 

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Sleep? What’s That?

By Penelope Conway

At the end of an exhausting day yesterday, I collapsed into my bed and tried to sleep. You know, that thing where you curl up, close your eyes, snore and drool? Unfortunately, it didn’t work out for me last night. I spent the entire time wide awake through the yawns. A full night of sleep for me is more like a trip to a baseball game on a sold-out night than a trip to a relaxing spa.

Game night goes something like this…

You find your seat and settle in for the game with your team shirt on, a foam finger in one hand and a bag of peanuts in the other. “Play ball”…the game has begun, but since you are in the third seat on your row, everyone has to step over you to get to their seat. Your toes get stepped on by the first person coming by, you get smacked in the head with the next lady’s purse, and elbowed by the person after her.

You endure constant commotion and movement as people carry drinks and food up and down the row. One person even spills part of their drink on you. Then, just as the game is getting good, the person next to you starts talking so loud that you can’t even hear your own thoughts anymore.

You are stuck listening to everything about their job and the problems they are having with their boss…things you didn’t need to know, but now do…and in the process, you miss the epic play of the night. You were there the night a world record was set, but have to watch the replay to find out what really happened. You simply wanted to enjoy the game but it seems like there’s more going on in the stands than on the field.

That about sums up a night of sleep for me with MS: pain, dizziness, breathing difficulties, tossing and turning, muscle spasms, trips to the bathroom, and an overactive brain that won’t shut up. A night of sleep…I wish! Meds do help and for that I’m thankful.

When a friend tries to rationalize or downplay my fatigue, it can hurt. Many times it seems like the more I try to explain how tired my tired is, the more they try to fit it into their little perception box. Understandably so, they aren’t the ones living with it, but sometimes I just wish I could give them a taste of what my fatigue actually feels like. Maybe then they would get it.

I appreciate when a friend asks me to do something, but then is ok if I end up declining their invite because my body is simply too exhausted to function, even if it ends up being a last minute change.

Lately those times happen more times than I like. Sometimes just the thought of having to get myself dressed and looking presentable wears me out. If it’s not messy hair, sweat pants and t-shirt doable, it’s a lot of work.

Those that love me enough to give me the option to choose and then are okay if my decision is different than what they want or planned for, those are some of the most amazing people on the planet. No one should ever have to spend time defending how they feel and why.

The world is buzzing by at a hyper speed and it tries its best to force us to keep up with the pace it sets, but MS has given me a slower pace that requires pit stops and naps. Most of the buzzing about that the world wants us to do isn’t really important anyway.

I choose to hold onto the things that really matter in life like great friends, savory coffee and naps. Yes, naps are my new favorite.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (http://positivelivingwithms.com/) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

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Find Answers, Get Support, and Ask Questions on My MSAA Community

Remember the days when the best way to communicate with people far away was pen pals and old-fashioned snail mail? Technology certainly has come a long way since then! Now, there are hundreds of ways to connect with others via the computer or your mobile device – and MSAA wants to help! My MSAA Community, powered by our friends at HealthUnlocked, is a peer-to-peer online support forum that connects members of the MS community on a daily basis. As a member of this friendly, supportive, and safe online forum, you can ask questions, contribute to ongoing conversations, or start your own conversation about your personal MS journey. Here are three examples of posts that were recently shared:

Some words of encouragement for those who may need them:

A member asking for advice from someone who has experienced similar symptoms:

*Please note that if you are experiencing new or worsening symptoms, it is imperative that you speak with a licensed medical professional in order to receive accurate medical care and explore the right treatment options for you.*

Someone sharing some positive thoughts on a good day:

Of course, there are many other types of posts that are shared daily on the community – artwork from artists with MS, pictures of pets and animals that help ease anxiety, and more! If you would like to get started and become a member of My MSAA Community, please visit http://www.healthunlocked.com/mymsaa

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Love Your Pet Day

Many people who have pets will admit that they do not need an excuse to give their pet extra attention and a little pampering, but did you know that there is a National Love Your Pet Day coming up on February 20th?

Having a pet or any kind of animal companion can offer a variety of benefits to anyone.  Whether you are cuddling with a furry family member, or confiding your fears and frustrations to an attentive animal, our pets can reduce our stress levels, providing both physical and mental relief.  Who hasn’t come home after a long day with a desire to just say hello to your pet, give them a pat on the head, or a belly rub?  We can vent our frustrations and acknowledge the things that make us nervous and anxious to our pets, without fear of being judged for our thoughts. They support us without ever needing to actually speak back to us.

As some of our My MSAA Community members have said about their pets:

“Gidget is waiting for me every time I come home.  No matter where I’m at she finds me.  She is wagging from head to tail. I swear she knows when I’m sick because she follows me around like my little shadow.”

“My dog Razor has seen me through 5 ops in 5 years, never left my side.”

“My little kitty girl, Tux, is my daytime companion.  She follows me around and sometimes even rides on the back of my chair.  We like to sit in the sun and watch the birds in the trees in the backyard.”

Our pets are often considered an extension of our family and can easily be considered a care partner for many of us when we aren’t feeling our best.  How has your pet been there for you?

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February 2017 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2016-17 Art Showcase – celebrating the work of artists affected by multiple sclerosis (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.

Patricia Heller – Sturgeon Bay, WI
Poppies Reaching for the Sun
Patricia Heller - Poppies Reaching for the Sun

About the Artist:
“Diagnosed ten years ago, my life dramatically changed.

As the years have gone on, I have become better at both watercoloring and handling MS. With painting, I have learned to watch the movement of the water and the paint and capture it to create the images I intend. With MS symptoms, I have learned to listen to what my body is telling me and then use everything I have learned (meditation, relaxation, exercise, stretching, drugs, and best of all, WATERCOLOR PAINTING) to manage MS.””
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2017 Has Arrived

By Lauren Kovacs

It is tough to welcome a new year. Seems like I recently adjusted to it being 2016.  Alas, we must shed the old and embrace the new.  Shake it off.

Like anything with MS, don’t rush. Rushing does nothing good. Slow down.  Ease into 2017.  Take a deep breath and take a baby step into the New Year.

Setting wee goals makes the weight of the New Year manageable.  Don’t make a long list of goals.  Maybe do an extra few reps when exercising.  Doing 13 instead of 10 might be something you can do.  You can maybe add an extra pound to your weights. A few small goals are more realistic.

I know I soaked myself in gluten over Christmas and I never said “no” to Christmas cookies.  I was being polite.  Generally, it was a baked good free-for-all.  If it was within reach, I ate it.  I love candy too.  My daily PT suffered.  This month I am weeding out some gluten and doing part of my PT.

I started my New Year’s goals the day after Christmas.  A tiny bit each day does wonders.  I restarted my laps around the house.  I am trying to do at least one.  I am supposed to do three.  Wade in slowly.  No head first diving into 2017.  The water is cold so, most towel off and never go back in.  Don’t let too many goals shock your system.

I am trying to get off the couch more.  The butt marks on my couch don’t look good.  One of my sons got a real bow and arrow set from Santa.  (target tips) I go out and watch him practice.  I can’t get out there without help, but I am trying.  I am off the couch.

Take your time and slow down.  So what if it takes you longer to tie your shoes or hook you bra?  Rushing leads to frustration.  Slow and steady, as they say.  If you just can’t, after trying, ask for help.  Frustration leads to stress and stress is bad for MS.

In general, MS makes you slow down.  Take your time.  We run a very different race.  If I can shower without losing balance, when standing up to get out, it is a goal I reached. If I can comb my wet hair without smacking myself in the face, I met another goal. Take your time.  2017 is not going any place any time soon.

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Resolutions, Goal Setting and Multiple Sclerosis

By Susan Russo

Every year on January 1st, the first thought to pop into my head is “OK, it’s a new beginning, what do I want to do going forward?”

And every January 1st, I say “Well, absolutely nothing comes to mind.” Except coffee. I need coffee. And eggs and some bacon. So I climb out of bed and meander my way into the kitchen, all the while telling my son “Happy New Year Chris! We made it through another Holiday Season, still intact and none worse for wear.” Still not married, still alone, and still no grand babies for me to raise. Chris just grunts in unison, rolls back over in his bed and drifts back into his safe place. What that is, I don’t dare ask. All I hear is a muffled, low grade growl of “just stop it mom, pleeeeeeaaase!”

As I take my cozy seat at the breakfast table with my favorite blanket, (and, yes, it does get cold enough in winter to use a blanket in Houston) I begin to reminisce on the past few years. “How is my MS doing?” I ask. It answers back with a flush of burning, tingling, a bit of numbness, and a side order of vertigo, reminding me, “Hey girl, I’m still here. Did you forget about me?” And I’m like, “geez, sorry I asked.”

No. I have not forgotten. It’s just in the midst of all my goal setting, you simply slipped my mind.

And that’s just it. The thing about setting goals for the new year…it really is so important. Resolutions allow me to forget about multiple sclerosis, even for just a moment. Thinking of my dreams and aspirations brings me to a happy place. And by the time I finished my toast with jelly, I have a list of a thousand things I want to accomplish. We all know that feeling of elation. Yes, I can learn to swim so my MS will stop burning me, as I splash around in the pool like a halibut. Yes, I will become a world famous artist, move to the Fiji Islands, employ a cabana boy, drink ice tea, and paint until my heart’s content. And eat tons of potato chips. I love potato chips. And maybe have a glass of champagne. Just because I can.

Then, Boom! Reality comes knocking on the door. “You can’t ignore me forever! Let me in or else!” I sigh and take a gulp of my coffee, politely expressing to my reality to “go away, I still have bacon to eat.”

The thing about reality…it’s real and it’s relentless, and it never goes away. So, begrudgingly, I focus. One step at a time. One day at a time. One goal at a time.

  • I will take my Avonex on time each week. (I was tired of my MS injections, so I skipped a few. Don’t tell my doctor.)
  • I will swim 2 to 3 times a week.
  • I will eat healthy foods. (Yeah, like that’s gonna happen.)
  • I won’t pester my son about marriage and babies and wanting a corgi puppy.
  • I will create more art because I am totally talented and people like my work.
  • I will volunteer at the local police department because I have respect for officers of the law. (Actually, I adore a man in uniform, just sayin…)
  • And, I will find a cure for MS! It’s gonna happen people!

My point is this. It’s imperative to set goals, especially when we are in a battle with MS or other dreadful diseases. Unfortunately, they are a part of our lives. We cannot ignore them. So, include them in your dreams and aspirations. Keep it simple. Don’t set goals you know in your heart you won’t keep. Be kind to yourself. Reward yourself. Go see that movie that you’ve been wanting to see.

Remember this. No matter how crazy the world gets, if you have just one goal that gives you a sense of accomplishment, set it and follow through. When you succeed, pat yourself on the back. Smile. You did it. Then set another. And another. Pretty soon, you will find that resolutions can be made and effortlessly (well, you may have to exert some effort) accomplished, not just on the very first day of a new year, but anytime you wish.

The choice is yours. And know this, if you falter with your attempts to better yourself and the world around you, do not dismay. Time keeps coming. Days keep flying by. And January 1st will still be the 1st day of the new year. Always.

Time for resolutions and dreams, with an entree of bacon, eggs, coffee, and more bacon. And perhaps a little grand baby to cuddle.

Heck, I’d settle for the corgi puppy! I’ll name her Isabella.

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The Benefits of Creating Artwork… It’s More than Just a Pretty Picture!

Each month, we honor an artist from our Art Showcase in our Artist of the Month series.  But have you taken a moment to look through the Art Showcase to see what you’ll find? In addition to a wide variety of beautiful pieces of art, you’ll find personal stories written by the artists. These stories add a whole new dimension to the artwork, allowing you to read about the artist and learn what inspires him or her to create.

In looking through these stories, you’ll find one common theme: In addition to creating a piece of art, the act of doing the art is extremely therapeutic – and this is true whether drawing or painting, as well as crafting, knitting, or throwing a clay pot on a pottery wheel. It often changes one’s outlook and gives individuals a new purpose in life.

These positive effects are exciting to hear and are certainly not limited to MSAA’s Art Showcase! The entire field of art therapy is based on the benefits derived from the creative process and the resulting artwork, and these advantages may be experienced by children, adults of any age, healthy individuals, and individuals with physical, emotional, or psychological challenges.

Numerous studies have been conducted with healthy individuals as well as those with various conditions to examine the positive effects of creating artwork. One small study found that the women with MS who participated in a creative art program experienced significant increases in self-esteem, social support, and self-efficacy to function with MS (self-efficacy is the ability we believe we have to meet challenges and achieve goals). The study also saw a strong effect on hope. The authors concluded that creative art has the potential to enhance the lives of those living with MS.

Another small study conducted in Ireland found that the group of adults with MS who participated in creative classes experienced deep immersion in their artwork, offering respite from worry about their illness. The art-making processes and artwork created increased emotional wellbeing and promoted self-worth, while attending the classes provided an opportunity for social camaraderie and learning. Artwork even helped to support their identity and to accommodate functional losses associated with MS. Participants expressed the feeling that art was “opening new doors” for them.

The American Art Therapy Association at arttherapy.org explains that art therapy is a mental health profession in which art therapists use art media, the creative process, and the resulting artwork to help their clients to explore their feelings and reconcile emotional conflicts. Among other benefits, they note that art therapy can help people to foster self-awareness, manage behavior and addictions, develop social skills, improve reality orientation, reduce anxiety, and increase self-esteem. Anyone interested in learning about art therapy or locating an art therapist in his or her area may visit this website for more information.

It’s important to note that you do not need to work with an art therapist to enjoy the rewards of creating artwork, nor do you need to be an artist or believe you have any “talent” as an artist. While an art therapist may be very helpful to someone who is experiencing emotional or psychological issues, including depression or anxiety… or to someone recovering from an illness or coping with a medical condition… anyone is free to explore his or her creative side… and discover the positive changes associated with creating his or her own works of art!

Another informative resource on the value of art is the Be Brain Fit website. This site was created by two health professionals and cites many published works relating to the benefits derived through art and the creative process. In this section of their website, they explain that creating art is a very effective way to stimulate the brain and that anyone can do it. To follow are a few points from Be Brain Fit, all supporting the positive effects of artwork.

Art relieves stress by enabling you to become totally immersed and providing a distraction for your mind. As you concentrate on details and pay more attention to your environment, it acts like a form of meditation. Many of the new coloring books being marketed to adults were designed with the idea of reducing stress, and have even helped veterans suffering from post-traumatic stress disorder (PTSD).

Art uses both sides of your brain, encourages creative thinking, and enhances problem-solving skills. Art is thought to serve as a type of brain exercise and stimulates communication between various parts of the brain, creating new connections between brain cells. It also boosts self-esteem, provides a sense of accomplishment, and can help children to become better students. Art has even been shown to enhance cognitive abilities and memory for people with serious brain disorders, and has been shown to improve memory in individuals with Alzheimer’s disease or dementia.

Now that you know some of the exciting benefits that art has to offer, this might be a great time to give art a try! You can start with a pencil and paper, a coloring book and pens, a craft kit from the store, paints and brushes, or a scrapbook and glue… whatever you might find to be interesting and fun. You can even enroll in a local art class. The results will surprise you! And who knows? Maybe the next MSAA Art Showcase will feature one of your works!

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