About MSAA

The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization and leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a Helpline with trained specialists; award-winning publications, including, The Motivator; MSAA’s nationally recognized website, featuring educational videos, webinars, and research updates; a mobile phone app, My MS Manager™; safety and mobility equipment products; cooling accessories for heat-sensitive individuals; MRI funding; My MSAA Community, a peer-to-peer online support forum; MS Conversations blog; a clinical trial search tool; podcasts; and more. For additional information, please visit www.mymsaa.org or call (800) 532-7667.

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

Posted on April 3, 2017 by MSAA

MSAA is very proud to present our 2017-18 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.

David Desjardins – Union, ME
Burnt Island Light

About the Artist:
“When I received my MS diagnosis, it was difficult to remain positive and find anything to be happy about. As time went on and I wasn’t able to work anymore, it occurred to me one day that my inactivity could be a good thing because at last I had a chance to paint!

There is very little in my life I have control over now, but one thing I do have control over is my painting. Creativity has always been part of who I am, but aside from being able to create something beautiful, I can escape the realities I face through my art even if it’s only temporary.”
Read more

Wellness is a Big Puzzle

Posted on March 29, 2017 by MSAA

By Lauren Kovacs

Wellness is as broad as MS itself. It is a never-ending struggle for some kind of wellness. It haunts most of us like a persistent poltergeist. Little pieces fit into the MS puzzle and you need them all.

We all try and latch onto any floating debris. We ask, “What if it helps?” There it is, the dreaded, “What if?” Always try it; it might work for you. Turmeric is a decent life-ring for some, for example.

It is really hope we cling to, in the end, no matter how small. Routines and eating well are obvious pieces. Many of us find reducing gluten and sugar helps. The jigsaw puzzle of MS wellness is huge. Someone’s failed try might be someone else’s small victory.

One piece I have found to be golden is mental wellness. We all need to vent. I have a talk therapist. I dump my MS garbage on her, poor dear.

A disinterested third party is great for me, mentally. I am a talker. I can talk your ear off. With recent MS stuff, talking is work. Ok, I sound drunk. My brain wants to release, but by the time the flow gets out it is a muddy mess.

Unloading on your spouse puts a big kink in your marriage. Talking to a friend helps, but it has to be the right friend. Talking to a family member might not work either.

Many people are not equipped to carry the burden of listening to our MS struggles. So, we put on a happy face and move on. Eventually our bag gets too heavy and explodes or leaks.

A trail of MS juice follows us, if we ignore it. It drips from our backpack with every step. Wellness calls for us to find a way to lighten our load or patch the leak. The MS backpack is a permanent fixture. We can never take it off. Wellness of any kind is a welcomed Band-Aid.

Talking to someone helps me feel better. I can trip over my own words or smear them as they come out. I need the release at times. Friends might hear complaining and family might get annoyed.

Wellness is a puzzle piece. Trying to smash it into the wrong place won’t work, no matter how you turn the piece. Mental wellness is personal, and very important. You have to find the best way you can to slide that piece of the puzzle in. A Cadbury Crème Egg helps too.

Wellness Needs a Nap

Posted on March 27, 2017 by MSAA

By Lauren Kovacs

I can’t stress this enough. Fatigue is a relentless beast. If we want to be as well as we can, sleeping helps. From marathon naps to a wee kitty snooze, it is a must. Some days more than one is needed.

Don’t resist the craving to sleep. Cave in and watch the back of your eyelids. Mid-day naps work for me. Even my dog knows when it is my naptime. In this sense resistance is not good. Don’t fight sleep.

I sleep with the phone and I only answer it if it is my kids’ schools. Most people, with two brain cells to rub together, know I am out of order during naptime. I have “out of area” numbers blocked by my phone company and if something gets through, I turn it on and off to get it to stop ringing.

Blocking out light and sounds help me too. I have a hard time with glare and sleeping in sunglasses is uncomfortable. I put something over my eyes. Eyelids are not enough and fabric blocks it out.

A few drops of lavender oil on my sheets can be relaxing. I also have a hard time clearing my mind. Boy Scouts, soccer, Taekwondo and many other scenes in life are doing the Tango in my brain all night. I draw the curtain on that sleep-sucking dance by reading. A few pages of fiction turn the pages of life.

Listen to your body. It whispers wellness secrets. If you are too hot, your body tells you. If you need to sleep your body will tell you. LISTEN. If your body says it needs chocolate… Listen to it!

This is for the Weary Ones

Posted on March 24, 2017 by MSAA

By Penelope Conway

This is for the weary ones, the tired ones, and the “I can’t go on” ones.

This is for the ones who cry behind closed doors yet muster up a smile to face the day.

This is for the ones who dream of the day multiple sclerosis is cured so they no longer have to deal with doctor appointments, meds, needles, and pain.

This is for the ones who keep going, even when they know they need to stop for a moment to do nothing but chill on the couch with a good book or a marathon of their favorite show on TV.

This is for the ones who long to take a vacation where they are waited on hand and foot; no laundry, no dishes, no vacuuming, no work of any kind.

This is for the ones who get stressed and overwhelmed with the demands a life with multiple sclerosis brings.

This is for the ones who find it hard to keep going, who long for a break, who need time off, and who deal with too much.

This is for you.

You are an amazing, courageous, beautiful person. You are not alone. Take some time to do something just for you. That pile of laundry… let it pile up. It doesn’t matter. Take time for you. Treat yourself to a movie, a night out, a steak dinner, a trip through the park, or a giant slice of chocolate cheesecake. Shake off those negative thoughts that cause you to feel worse than MS could ever make you feel.

Stand outside your situation and, for just a moment, try looking in from the outside. Think about what you would say to someone else standing in your shoes. Would you remind them of their value? Would you tell them to worry less? Would you encourage them to ask for help so they aren’t doing everything alone? Would you show them how to smile through the tears?

You have a mountain in front of you… an Everest. That’s your reality. But no matter how big it may be, it can be climbed. Don’t look at its massive size. Choose instead to take your eyes off of the rock in front of you and look out at the beauty all around. Stop for just a moment and breathe. It takes courage, determination and strength… and you have each one.

So as you climb Mount Everest with your heart pounding in your chest and your knees buckling under you, give yourself one tiny moment to realize just how incredible you really are. You are worth it. You matter!

*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.

MSAA to Host “Ask Me Anything”

Posted on March 15, 2017 by MSAA

Do you have questions about multiple sclerosis that you’ve been meaning to ask? Here’s your chance!

Join the Multiple Sclerosis Association of America on March 29, 2017 at 6:00 PM for an Ask Me Anything session with MS Expert, Dr. Barry Singer, on My MSAA Community. For one hour, Dr. Singer will answer your questions about MS posted in a designated conversation thread on the Community.

WHAT: MS Awareness Month “Ask Me Anything” (AMA)
WHO: MSAA and Dr. Barry Singer, Director of The MS Center for Innovations in Care in St. Louis, MO
WHEN: Wednesday, March 29th, 6:00 – 7:00 PM EST
WHERE: My MSAA Community on HealthUnlocked

If you would like to ask a question during the Ask Me Anything session, you will need to have or create a profile on My MSAA Community, our peer-to-peer online community in which you can share your MS journey, connect with others, and contribute to ongoing conversations – all from your phone, tablet, or computer.

Join us on My MSAA Community for this special “Ask Me Anything” session during MS Awareness Month to get answers to your questions!

Irish Potato Candy – Recipe of the Month

Posted on March 13, 2017 by MSAA

This month’s recipe comes from MSAA Staffer, Emily O.

Growing up, I spent most of my time after school at my grandparents’ house until one of my parents would be done with work. One of my favorite traditions from this time of year was helping my grandmother make her own homemade Irish Potato Candy as a St. Patrick’s Day treat. My mother loved Irish Potato Candy and, though we made the candy every year, my grandmother and I loved making it as a surprise for my mother. Years later, I still make the candy as a way of honoring both my mother and grandmother. Enjoy!

Ingredients:

4 oz. regular cream cheese, softened
¼ cup butter, softened
16 oz. confectioners’ sugar
2 cups flaked coconut
1 tsp. vanilla extract
Ground cinnamon

Directions:

In a large bowl, cream together the cream cheese and butter.
Add in the vanilla.
Add in confectioners’ sugar a bit at a time until the mixture forms a ball.
Stir in the coconut flakes with a (sturdy!) spoon.
Spread ground cinnamon in a shallow dish or on a plate. You may need to repeat this process a few times depending on how coated you like your potatoes.
Cover a cookie sheet with parchment paper or wax paper.
Grab a small piece of the cream cheese and coconut mixture and roll in your hands to form a small ball (I usually make mine about the size of a quarter) and roll the ball in the ground cinnamon until the ball is coated.
Place the balls on the cookie sheet and let them chill for about an hour or so, until they are firmer.

*We hope you enjoy our Recipe of the Month selections on MS Conversations. Just remember: these entries may not necessarily be a part of an MS-specific diet; these are simply recipes compiled from MSAA staff and friends either from their own family recipe collection or based on recipes we think you might enjoy. As always, make sure to consult your doctor about any food or nutrition questions as they relate to your MS.

Aquatic Exercise and Finding the Right Facility

Posted on March 10, 2017 by MSAA

Exercise is a great way to help maintain strength and endurance in order to better take care of your physical well-being. There are countless varieties of exercise trends and routines, but traditional exercise isn’t always the best fit for everyone, especially individuals with MS, due to the increased physical demand and rising body temperature. Research conducted over the years has suggested that aquatic exercise is an effective way for individuals with MS to improve their flexibility, fatigue levels, and (most importantly) their quality of life and psychological well-being.

Take, for example, the way aquatic exercise has affected Mandy Iris. “I can swim as angry as I want. I can be as sad as I want, but it all just seems to melt away every time I jump out of the pool. I feel better. It’s invigorating, it makes you feel alive,” says Mandy. Spending time in the pool and swimming a few laps, or just walking around in the pool can not only help strengthen your muscles, but allows you the time and space to clear your mind.

If you are looking to try aquatic exercise for yourself, and you’ve discussed this with you doctor or physical therapist, here are a few of tips for finding the right facility for you:

Location – Find a facility within a reasonable driving distance or that you can get to using public transportation.
Safety and Accessibility – Make sure that you are able to easily move about the facility and pool deck. Also, be sure that you will be able to get in and out of the pool with ease.
Classes – If it interests you, see if the facility offers any aquatic exercise classes you can attend.
Schedule – Find a facility or a program that works with your schedule, including work, child care, and personal preferences.

You can find more tips, resources, and inspiration to get started on MSAA’s Swim for MS Online Aquatic Center at: aquatics.mymsaa.org/aquatic-exercise/

I Am Free in the Water

Posted on March 1, 2017 by MSAA

By Simone Sanders

I was an unusually tall child. I stood at almost five feet tall by the age of six. So, naturally, my family began to speculate about my future athletic potential. My grandfather, who was an avid swimmer, decided that my lanky, thin frame would best be suited for swimming. And so my lessons began at seven years old. I remember I felt two things the very first time that I jumped into the pool: cold and free.

On land, I was quite awkward. Being much taller than the other kids left me at the end of the line most of the time. My feet and hands were too big to swap shoes and winter gloves with the other girls in the class and adults always seemed to notice my height first. But the very features that made me awkward on land made me graceful in the water. My big feet helped me swim faster than the other kids. My hands helped me pull water behind my body more efficiently and my height made me superior in a race to the finish line. In the water, I was a winner.

Fast forward twenty years and I still feel like a winner when I swim. Living with multiple sclerosis on land is rough. I walk slowly. My hands and feet are numb and tingling. My vision is blurred from optic neuritis. I am tired all of the time and my brain is sometimes in a fog. But I am free in the water. I don’t have to drag my body because my limbs are light. My hands and feet are both cold so the numbness and tingling stops. My blurred vision doesn’t matter because there is nothing to see in front of me but the finish line. And if I am tired, I float. In the pool I am not disabled. When I am swimming, I am enough.

In a race against MS, I win.

*If you are interested in learning more about using your own passion for swimming to help the MS community, please visit SwimForMS.org.

Stories to Inspire

Posted on February 28, 2017 by MSAA

Since 2013, Shana Stern has actively participated in MSAA’s Art Showcase campaign, where people living with multiple sclerosis (MS) submit images of their talented artwork for display on our website gallery, promotional materials, and social media platforms. Shana’s bold and vibrant paintings reflect not just her artistry, but also her willingness to rise above the ongoing challenges of multiple sclerosis. Diagnosed with MS in 1999, Shana battles a variety of symptoms including extreme fatigue, pain, drop foot, and visual difficulties. In addition, Shana also has a loss of feeling in her right arm and fingers, which limits her ability to hold or grasp any small object – including a paint brush.

Frustrated by constantly dropping the brush and her inability to control the path of the paint, Shana was forced to once again work around the impact of MS and find a solution. While sitting on the floor, Shana discovered that she could balance the canvas on her knees and paint with her fingers and knuckles. By adapting to this new and unique style, Shana has regained control of her artistic abilities and found an even deeper connection to her love of painting. “Getting lost in the music I paint to and helping the colors dance across the canvas with my fingers has become my mental, spiritual, and emotional therapy,” said Shana. “We may get knocked down a bit and have to work a little harder, but we are capable of great things such as bringing beauty and art into the world! Yes, I have MS, but I am an artist.”

Not surprisingly, Shana’s son Walker Reynolds, 12, also shares a love for art and the ability to reach beyond the ordinary to accomplish the extraordinary. Inspired by his mother’s spirit and determination, Walker also wanted to get involved with MSAA and help make a difference. While on the MSAA website, Walker discovered our Swim for MS fundraising campaign, where volunteers can create their own swim activity, set a challenge goal, and collect pledges from family and friends to help support the organization’s programs and services.

As a self-described “fish,” Walker’s love of swimming and the ability to raise funds while having fun in the pool made for a perfect match. Despite being 11 years old at the time and having no prior fundraising experience, Walker dove right in and registered for Swim for MS. Starting in June 2016, Walker dedicated his summer to swimming one minute for each dollar donated, with the ambitious goal of raising $1,600. On his fundraising page, Walker stated: “My goal is to raise $1,600, which is $100 for each year my mom has struggled with MS. Daily she battles fatigue, numbness, pain and vision loss (which stinks when I need homework help!). Because her symptoms are ‘invisible’ I want to educate others and also inspire others like she inspires me!”

With Shana and Walker’s permission, MSAA began promoting their remarkable story to the local media and within the MSAA community. By summer’s end, with the support of their family, friends, and other contributors, Walker not only reached, but exceeded his goal and raised more than $1,800 to help support the MS community. As one can imagine, MSAA is extremely proud to recognize the amazing love and inspiration of Shana Stern and Walker Reynolds by honoring them at this year’s Improving Lives Benefit.

Ask the Expert

Posted on February 28, 2017 by MSAA

Featuring Carrie Bruce, PhD, CCC-SLP
Sr Research Scientist, School of Interactive Computing
Georgia Institute of Technology
Member of MSAA’s Healthcare Advisory Council

Question: Due to my MS, I have trouble speaking and writing at times. Is there anything out there to help me?

Answer: When communication skills are impacted by MS or related treatments, a person’s quality of life can be significantly impacted. Even minor changes in a person’s speech or written communication can make it difficult to function at work, stay in touch with family or friends, and manage conversations with people in the community. There are various strategies and products that can help with writing and speaking. A quick check of catalog and online companies shows thousands of writing aids, keyboards, voice and speech aids, and other products for improving communication. Several online resources offer unbiased listings of these types of assistive technology, including assistivetech.net and abledata.com. Additionally organizations such as ataporg.org operate lending libraries or equipment closets for these products. In most cases, these specialized products meet the particular need for which they were designed and make it easier for a person to communicate.

Another option is to leverage devices such as tablets and smartphones that have useful built-in features and the capability to run applications (apps) that make it easier to write, type, speak, listen, and read information. For a person who has a hard time writing, speech input can be used to compose emails or texts, dictate documents, make shopping or to-do lists, and search for information. Word prediction and completion can also be helpful in offering suggested words that a person can choose from instead of typing the whole word. If a person has difficulty speaking, email and text messaging can be alternatives to phone calls or face-to-face conversations. Some people also find it helpful to use Skype, Facetime, or other video/audio calling apps because the visual connection makes it possible for callers to see each other’s faces and share other viewable information (e.g., an object that is the topic of discussion). Additionally, tablets and smartphones are able to run apps that produce spoken messages based on what a person types or selects from pre-stored choices.

New features are constantly being developed for smartphones, tablets, and other devices that are potentially helpful in overcoming communication difficulties. Don’t worry about staying on top of the latest trends, just focus on finding a solution that works well for you. For more information and additional resources, please contact an MSAA Client Specialist at (800) 5320-7667, ext. 154.

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