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.

Jump Into Spring Cleaning – Then Nap

By Lauren Kovacs

“Spring cleaning” is more than scrubbing floors.  Yes, dusting and cleaning under the bed are both good starts. Cleaning how you do stuff is also important.  Methods to your madness will iron out life-wrinkles.

I admit spring cleaning is something I abandoned on the side of a dusty road, in the desert, years ago. Along with the OCD Cleaning Lady and the Floor Nazi Mom, I left them behind too.  Relax; I gave them a bottle of water.  They were replaced with the “Do What You Can Lady.”

With three boys, a husband, and a dog, I am drowning in major testosterone.  Physical spring cleaning is often a losing battle for me.  I take one task at a time, now.  I also make lists of what tasks need attention.  Cleaning toilets never makes that list.

Learn to work smarter.  Expel as little energy as possible, but be proud of the tasks you do complete.  One trick I use to move laundry is using a rolling plant stand.  I can no longer lift laundry baskets onto my walker and pushing it was scratching my wood floors, even with putting felt dots on the bottom.

When putting away laundry get help and put away winter clothes, as you uncover summer clothes, at the same time.  I put the youngest one’s clothes into a designated container to give away, as it comes through the wash. The older boys put their own clothes into large plastic tubs, with the size and season written on paper on top.  If one of the boys happens to eat miracle grow and suddenly needs a bigger size mid-season, it is clean and dresser ready.

It would be easier, if they were turtles and their clothes grew with them.  I am also wondering if being nudists would help.  I guess having weeds with big feet, in my house, is just life.  The dog grows out and does not need clothes, thankfully.  We just adjust his collar.

Once we switch over seasons, I make a list of what is needed.  They are boys.  Stuff gets stained, torn, or runs away with the socks.  Pinewood Derby paint does not wash out, by the way.  Blood on soccer uniforms responds well to hydrogen peroxide, before the wash.

Do what you can and what you are good at.  I am good at organization, making lists, and researching.  Cleaning the blinds, I am not good at, however.  Embrace your gifts.

Clean your methods too.  Make sure to know easier paths to get things done more efficiently.  Save energy the best way you can.  Even driving can be made more efficient.  Maybe have a route mapped in your head of how you shop.  Write down the map, if you have cognitive issues.

I like to spring clean with a small bag of M&Ms.  I reward myself with the completion of each task.  Reward yourself in some way when doing anything really.  You know the effort it requires.

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MSAA’s Fourth Annual Improving Lives Benefit

As MS Awareness Month came to a close at the end of last week, MSAA held its fourth annual Improving Lives Benefit on March 30th in Philadelphia, PA.  This event allowed all of us at MSAA to celebrate MSAA champions who embody our mission of Improving Lives Today in the multiple sclerosis community throughout the United States.

This year, we were extremely proud to honor Shana Stern (an MSAA Art Showcase Artist), her son, Walker Reynolds (a Swim for MS volunteer), and William Saunders (MSAA Board of Directors’ Treasurer).

Attendees got to hear from Walker about his desire to raise money for a cause that would directly benefit and support people like his mother Shana, who was diagnosed with MS in 1999.  We also had an opportunity to hear from Shana about her process of expressing her creativity and love of music and performance through her newfound passion of painting with her knuckles.  Finally, William Saunders spoke about his time serving as a member of the MSAA Board of Directors and as a representative of the MS community as a true gift.

In addition to celebrating the work of our MSAA champions, we were also able to raise more than $120,000, which will make a tremendous difference in the lives of numerous individuals and families with MS.

This year’s event would not have been successful without the support of our attendees, supporters, and our sponsors.  Thank you to everyone who contributed and we look forward to another beautiful evening next year!

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

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
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

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Wellness is a Big Puzzle

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.

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Wellness Needs a Nap

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!

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This is for the Weary Ones

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.

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MSAA to Host “Ask Me Anything”

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!

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Irish Potato Candy – Recipe of the Month

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:

  1. In a large bowl, cream together the cream cheese and butter.
  2. Add in the vanilla.
  3. Add in confectioners’ sugar a bit at a time until the mixture forms a ball.
  4. Stir in the coconut flakes with a (sturdy!) spoon.
  5. 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.
  6. Cover a cookie sheet with parchment paper or wax paper.
  7. 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.
  8. 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.

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Aquatic Exercise and Finding the Right Facility

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:

  1. Location – Find a facility within a reasonable driving distance or that you can get to using public transportation.
  2. 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.
  3. Classes – If it interests you, see if the facility offers any aquatic exercise classes you can attend.
  4. 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/

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I Am Free in the Water

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.

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