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.

A Multiple Sclerosis Night Before the Holidays

Posted on December 22, 2017 by MSAA

By Penelope Conway

’Twas the night before the holidays, when all through my body,
Not a nerve was behaving, making me move rather shoddy.
My daily activities were chosen with care,
In hopes that each one could be done from a chair.

Each word that I spoke seemed to come out all wrong,
So much to be finished, I had to stay strong.
And John in the kitchen, and Missy making frappe,
Everyone busy working, no time for a nap.

When somewhere outside there arose such a clatter,
I peeked through the window, to see what was the matter.
I tried to move fast, to get to the door,
But I didn’t quite make it, and wound up on the floor.

As I lay on the rug, making sure nothing broke
Through tears I could see it, even gave it a poke.
Yes, what to my wondering eyes should appear,
But the cane that I lost, earlier this year.

Then the front door cracked open, and before me he stood,
I immediately knew help had arrived which was good.
And more rapid than eagles, his phrases they came,
And he whistled and shouted, and called them by name.

“Now hang on, now slow down, now take more life pauses,
With stressful, and chaos, and tearful day causes.
To the end of the checklist, to the end of the hall,
Now dash away! Dash away! Dash away all!”

And then I could see, as I wiped away tears,
Why, his words and his wisdom had settled my fears.
As I sat on the floor, too weak to even move
He knelt down beside me, and said I have nothing to prove.

He looked a bit weary, as a glance we exchanged,
And he said that my focus is what needs to be changed.
What’s important is family and those who are nearby.
(On that last one he actually said with a twinkly eye.)

Your weakness…it’s real. Your limits…real too.
MS has this way of making even brilliant days blue.
He smiled as he spoke, and I knew he was right.
No more pity party moments or MS fist fights.

He spoke not a word more as he helped me to stand.
I found myself smiling as I reached for his hand.
I sat on the couch as he gave me a nod,
He helped me to see that my thinking was flawed.

Then he sprang to his sleigh, and to his team gave a whistle,
And away they all flew like the down of a thistle.
But I heard him exclaim, “You’re doing great, don’t forget,
To pause more and smile, you have nothing to fret.”

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (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.

Shopping at Chair Level

Posted on December 18, 2017 by MSAA

By Doug Ankerman

The holiday season means it is time to hunker down into my wheelchair and face the Christmas hustle and bustle at seated-eye level.

Yes, Christmas shopping is all the merrier from the seated position. (Now I know why Santa is always sitting down!)

So with my list in-hand, let’s roll to the mall and purchase our “gifts of joy”……because nothing says “you are special to me” MORE than a shiatsu massaging cushion from Bed, Bath & Beyond.

Come on in

My first hurdle is just getting into the dang store!

This entrance at Sears is clearly marked “handicap accessible,” yet, there is no button to open the door. Forget the wheelchair, I quickly realize my “handicap” is trying to get into the place!

Usually, another courteous shopper will be nearby to help hold the door for you…..but this is Sears. I’ve seen ghost towns with more foot traffic!

Seasonal spirit

I’ve noticed store clerks and other shoppers are extremely helpful when you are in a wheelchair. They go out of their way to assist you. I figure, they feel bad because this guy has wheels for feet. That’s why I am always “over-the-top” positive when in my chair as I try to dispel the “woe is me” wheelchair image.

The squeeze is on

Shopping in a wheelchair can be tough battling crowds and parking — but the real challenge is in the aisles.

The squeeze is on as you try to fit between the displays for house slippers, glittery turtlenecks and NutriBullets.

Here’s an aisle that would be a tight fit for an anorexic fashion model — let alone a wheelchair!

Going through there gave me greater appreciation of birth.

Caution: Stay Back

Finally, from a seated position, you tend to get an in-your-face view of everyone’s backside.

Gluteus I-Maximus. I’ve seen butt cracks that make the San Andreas’ fault seem like a fine line.

Hip Huggers scream “uncle” in mercy. I saw a jeans tag I gotta believe was triple digits! If denim was an animal — the species would be extinct!

And from my box seat, it is not only “seeing is believing”…no, you see, I get to enjoy the “sounds and smells” of the season as well, if you will. Let me put it this way, no one claims to eat the holiday fruitcake, but someone is — and I am caught in the cloudy, odoriferous haze that follows.

Through crowds, long lines, charge cards and gift receipts…wheelchairs or not, we muddle through to finish our holiday shopping with moments to spare. Just enough time to catch our breath before we gather with family & friends — AND gear-up for our December 26th visit to the stores to return our house slippers, glittery turtlenecks and NutriBullet, right? May you have a tremendous Christmas holiday!

*Doug writes about MS and other nonsense with a humorous twist at myoddsock.com.

Balance and Moderation

Posted on December 13, 2017 by MSAA

By Lauren Kovacs

This is a Grinch every MS person faces this time of year. Even those who chose not to celebrate will be affected in some way. Even if you don’t bring that creepy “Elf of the Shelf” into your home, the season seeps into your life. Like glitter, it sticks to everything.

I have had to hand the holiday reins over to my family for most things Christmas. I did what I could. Each year, I find something else I cannot do. I am thankful my husband was always the cook and party planner guy.

I gave up helping decorate the tree or the house. I direct most of that now and point. Taking it down last year was very hard, especially telling the boys to wrap up certain ornaments for proper storage. (PS even fake candles melt in the attic no matter how well you store them.)

I do all my shopping online. I order online and if it arrives early and unwrapped, so be it. I let people know something is coming and to bag or wrap it. I can only do so much. The old saying, “it’s the thought.”

I keep a list of people and record what I bought and how much I spent. I can’t remember everything. I can budget and keep track of gifts all together on one list. I have a very big family. I can’t hang an ornament, but I can do the shopping part. That is huge.

Gift buying, angel trees, charity and such require a lot of planning. It can be a lot of work. Most MS folks are great at planning. Embrace what you are good at.

Not being able to stand up might make you able to decorate the tree on the bottom half. Just be sure there are no glass items down there. Maybe you can still make fabulous wreaths. Maybe give those as gifts. Take a talent and latch on. Even small tasks can bring you joy during the holidays. Embrace whatever you can. Cookie taste tester is important.

Rest/nap and keep your schedule, too. It can be tempting to skip that nap or stay late at a party. Spiced eggnog is delicious, but is it worth it? Trying to walk like The Nutcracker might not be fun. Pick your battles.

We all have to live and be merry, however. Moderation is key here! Those of us that don’t eat gluten have to weigh the consequences of eating that one cookie. Is it really gonna kill you to have one cookie in celebration? One, not three or ten. I have been known as a cookie monster. I get it.

If I have been good about not eating gluten all week and I attend a party with cookies, yes, I will skip the seaweed smoothie and eat the cookie instead. Come on, live a little. I want to enjoy the holidays and if eating one piece of fudge is more fun than liver and onions, bring on the fudge, but self-control is also key.

MS folks have to balance a great deal at the holidays. Don’t deny yourself a small treat. Think of it as a “to me from me.” Our battle is long and small prizes now and then are ok. Don’t be a glutton, but one small candy cane is not going to break the MS bank.

Imagine Your Happy Place

Posted on December 8, 2017 by MSAA

The holiday season is in full swing, and as the year comes to a close, the hectic pace can be stressful. Running any kind of errand during the last few weeks of the year becomes an adventure as you see more people out and about trying to purchase gifts, visit family and friends, host family and friends, and purchase supplies for all of the holiday meals and get-togethers. Everyone has their own method for dealing with the holiday season pressures and stressors, and one strategy that might be helpful at this time of year is guided imagery.

Guided imagery is a deep state of relaxation achieved by specific breathing techniques and mental images that reduce stress and feelings of anxiety – think of it as a structured day dream. This process can help with different types of physical and emotional stress by helping the body relax as you are guided along by a recording. Some benefits of guided imagery can include:

Improved mood by calming, relaxing, inspiring, and motivating
Reduced feelings of anxiety and depression
Lower blood pressure

Most guided imagery is practiced using a recording of someone coaching you on your breathing and a mental image designed to reduce your stress levels. By envisioning an ideal place of relaxation (like a cabin in the woods, or a beach) in this almost meditative state, your body starts to physically relax and react as if you are actually in that place.

The more you practice guided imagery, the easier it can become to find your happy place and relax in a stressful environment, giving you a sense of control over your stress and your body’s reaction to it!

Interested in learning more about guided imagery? Check out our cover story from the Winter/Spring 2008 edition of The Motivator, Imagine the Possibilities: An Introduction to Guided Imagery and Its Potential Benefits for Individuals with MS.

Important 2018 Insurance Deadlines

Posted on December 6, 2017 by MSAA

As the 2017 calendar year starts coming to a close, we would like to remind everyone about two important enrollment deadlines that are approaching for 2018 health insurance coverage:

Medicare
Medicare Open Enrollment ends on December 7th for coverage that begins on January 1, 2018.

Health Insurance Marketplace
Private insurance through the Affordable Care Act’s Health Insurance Marketplace has a December 15th deadline in order to receive coverage that begins on January 1, 2018. If you do not enroll in a marketplace plan by December 15th, you cannot enroll in a plan for the rest of 2018 unless you qualify for a Special Enrollment Period.

Ensuring that you have health insurance coverage to manage the many medical expenses that can accompany MS is crucial. You can visit these sites in order to enroll or re-enroll in a health insurance plan that meets your needs.

To help you better understand the complexities of health insurance coverage, you can also visit our website section My Health Insurance Guide or call the MSAA Helpline at (800) 532-7667, ext. 154. This is an important time, so please be sure to enroll in a health insurance plan that is right for you!

Enjoying the Holiday Season When Health is an Issue

Posted on December 4, 2017 by MSAA

By Stacie Prada

There are reasons to stress all year long, but the added social events and holiday tasks in November and December consistently encourage us to overdo it. People expect things from us, and we put expectations on ourselves.

Sometimes – or a lot of times – “just” getting to work, paying bills, keeping house, caring for others, and maintaining some modicum of basic health is an overwhelming goal. Add the holiday season expectations, and those of us with MS can be vulnerable to increased symptoms.

I firmly believe that these suggestions are good for anyone, those in perfect health and those with chronic illnesses. It’s just that what may be optional for them is critical for us.

Establish the minimum: Decide what the absolute minimum is that you need to do to maintain your health and be happy this season. Not being able to do everything we want to do is a daily harsh reality with MS, but being strategic about how we spend our time and energy can help alleviate the discouragement.

For holiday tasks, be very clear on what is needed and what is preferred. Anything beyond what is necessary is a choice, not an obligation. Sometimes just a shift in thinking can change how I feel from resentment to joy. If I’m doing something expected and I’m coming from a place of resentment, I will suffer. When I’m gifting, I’ve decided this is something I’ve chosen to do and I’ll feel good doing it. When it’s appreciated, it’s only an added bonus.

Reduce the demands: Ask yourself the following:

How can I do this so that it lessens my burden?
Can someone help?
Does it need to be done at all?
Can it be done at a different level of effort?
Can I purchase it without compromising my finances?

When someone asks me to do something, I’ll ask them the questions above. I’ll ask myself: Would I enjoy it, and can I do it without overloading myself? If I’ll resent it, I better adjust my attitude or not do it.

Organize and plan ahead: Don’t expect to remember everything without any extra effort. I keep a list of holiday season tasks that I want to make sure I do each year. It includes things I’ve done in the past, mailing due dates for cards and packages, gifts given, gifts received, thank you notes sent, and events attended.

If possible, I’ll proactively schedule time off from work to do holiday tasks. Trying to accomplish them all during evenings and weekends often doesn’t allow enough rest for maintaining health.

Make room for joy: Connect with loved ones in person, or by phone, text or letter. For many years I’ve alternated between Christmas cards sent in December and New Year’s cards sent in January depending on how much I had to do that season. Some years I didn’t send cards at all.

Include time to recharge in ways you love that feed your soul. I love getting outside and moving my body. It’s important to not just set sights on getting through the holiday season. Experiencing joy along the way is crucial for my sanity, and I will not do without just because I have a chronic illness.

Adjust to changing plans: I’d forecasted the things I would do this holiday season to match a level that I thought could accommodate my MS fatigue. Then my career placed demands on me I hadn’t anticipated. Sure, I whined about the surprise demands before verbalizing that it’s my choice to participate. The truth is I want to do these events; it’s only the scheduling that frustrated me given it challenges me with fatigue. To adjust, I found time on the work schedule where I could come in late or take some time off to offset the longer days. I also talked to a couple people who scheduled the events and asked them to consider spacing them out if done again in the future.

Receive judgement with compassion: People will judge the choices you make. Understanding that we can no longer do everything we’ve always done is hard to take for those that know and love us. Sometimes it’s not about the task, it’s about them wishing our health will be okay. It’s hard for us, but it’s also hard for them to accept that we have a serious illness that affects every aspect of our lives. Other times due to the invisible symptoms we experience and successfully accommodate, they forget we have limitations. It’s up to us to share our limitations when they affect others. No one who cares about us really wants our health compromised because of them. Usually they don’t understand that the little things could be a tipping point for us that requires a long time to recover.

It takes a lot of effort to live well with a chronic illness among people that have much more natural energy. They haven’t been forced to face these issues, and they may not understand how little things for them can be big things for us. It’s our job to take care of ourselves while nurturing relationships and living a life we 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/

You Are Stronger Than You Think

Posted on November 22, 2017 by MSAA

By Penelope Conway

There are so many things that I’m thankful for. I could list the usual: family, friends, warm fuzzy slippers and coffee…but those things seem so shallow to me now. Not because they aren’t important, but because my focus has shifted greatly over the years.

This morning, as I sat asking myself why I’m thankful, a flood of thoughts came to my mind. I have seen people faced with terrible circumstances who have become bitter in the process, and I have seen others rise above their challenges and become a light and a source of hope to the world around them. Which am I? Which are you?

As someone living with multiple sclerosis, I remember the day I sat in the doctor’s office when he gave me the unwelcome news that I have MS. I went through a full range of emotions in the weeks that followed from denial, to pain, to anger, to depression, to acceptance. It was a shocking blow to my life and something that I never saw coming. I had plans and MS wasn’t one of them.

It’s definitely been a hard road. I have had to adjust the way I do just about everything because even the simplest of daily tasks have become challenging for me. Some days I even have arguments with myself about getting dressed for the day or going to the store for something other than toilet paper. It’s amazing how much I took for granted before MS.

But you know, regardless of the struggle, I refuse to give up. I will NOT let MS keep me from being thankful…or from living.

The questions that I’ve asked myself, even just recently, have been simple. Can I be thankful regardless of the circumstances I find myself in? Can I find beauty in the chaos? Can I look this disease of MS square in the eyes and say, “I am not defeated because of you and in spite of the challenges I face, I will be thankful for each new day I am given.”

I decided to stop questioning why I was going through this crazy storm in my life and resolved to be thankful as I go through. I pictured myself as a tree swaying in the wind, but anyone who has ever lived through a tsunami, hurricane or tornado knows that even the strongest of trees break. It may still be standing when the storm subsides, but scars are left behind as a reminder of what once was branches and sometimes even the trunk breaks.

The truth is, multiple sclerosis changes you. It leaves scars both in your brain and spine, but also in your heart. You change. The storm you are enduring…people can’t see it. Some try to understand, but without living in your body and experiencing your journey by walking in your shoes, they just can’t understand the mental and emotional pains you face each day along with a slew of symptoms. They don’t know how often you cover your tears with a smile and piece together your heart with bubble gum and shoestrings.

Are you stronger because of MS? Absolutely you are. You are stronger even in the breaking. You have endured much and just like how a tree grows new limbs once a storm has torn it apart, you are growing and changing every day. You may be at a place where you feel like the storm is overtaking you, but the winds will calm and the sun will come out.

Hold on with everything you’ve got, then when you find your strength again…hold your head high proud of what you’ve come through and choose to be thankful for all you’ve overcome. I have learned that strength isn’t measured by the amount of things I can do or by how little I cry, it’s determined by the attitude that I have while going through the storms in life.

Not many people can make it through a storm, break, then keep going…but you are doing it. So the next time someone tells you to stay strong, smile in your brokenness realizing that your scars speak of your strength and tell a story that only a warrior can tell.

An Ode to Mobility Aids

Posted on November 20, 2017 by MSAA

By Doug Ankerman

As one with multiple sclerosis for twenty-one years, I have much gratitude and thankfulness to share.

Certainly family comes to mind with their heartfelt devotion, care and attention to my round-the-clock stumbling. My health practitioners earn a much deserved shout-out. As do complete strangers willing to help load packages into my car, offering their place in long lines, to the deputy opening the cell door.

But this isn’t about them.

This message of gratitude honors the gaggle of mobility aids I depend upon each day.

First, my wheelchair. My loyal steed. Though reluctant to use the chair at first, it has become a savior of independence. Taking me through sun, snow, rain and mud, my wheelchair has jostled my backside countless miles. It has allowed me to see nature’s wonders. Witness major events. And traverse cavernous big-box stores. Yes, independence would not be possible without my chair and for that I am grateful.

Next, my rollator. The rollator sits in the garage mostly waiting for yard work to be done. On those intrepid days, the rollator allows me to walk over uneven grass while keeping my weaving body upright.

Plus the rollator’s basket is perfect for carrying small gardening tools, gloves and chilled beverages on warm days. (An MSer must keep hydrated, you know.)

Lastly, canes are my everything. Always within arm’s reach. Canes allow me to shuffle along without leaving messy fingerprints on the walls. My canes help me stand. Canes let me look someone in the eye. And feel somewhat unburdened. Although my gait is glacier-esque in speed, I have tried to create an illusion of fleet-footedness with the clever use of Nike swooshes added to their tips.

If you are curious, they didn’t help. I am still sloth-slow.

My mobility aids have given me life post-diagnosis. Hand controls, wheelchair, AFO, rollator, Dyna-splint, canes, grab bars, I feel like the Inspector Gadget of disability. But it is all for a purpose. A purpose of independence. And for that I am grateful.

Gratitude and Thankfulness

Posted on November 17, 2017 by MSAA

By Susan Russo

The holiday season is once again fast approaching. I honestly feel like I just finished boxing up all my decorations from last year. This is a time when everyone tells us to be thankful and to be grateful. But why are these sentiments so pressured into us at this time of year? Why not all year around? I don’t actually have an answer for you except for what these graces mean to me in my own life and why I choose to celebrate all year long.

I remember when I was diagnosed with multiple sclerosis. Was I grateful and thankful for this disease at the onset? Absolutely not! I was angry and frustrated and in a serious “why me” phase. But, as time seems to heal all wounds, over the following months, my heart softened and I started appreciating MS for what it is; a disease that can crush you or build you up. I chose the latter. MS taught me a strong lesson about gratitude and being thankful, I promise you.

I am a single lady with no man to date as far as the eyes can see. My son is grown and my family lives out of state. So when Thanksgiving arrives, I tend to feel really sad and lonely. It’s a time for families to celebrate. And I’m reminded it’s just me.

I try to chalk it up as just another Thursday in a world of Thursday’s. But the season itself reminds me I am alone. Many people are alone. I get that. I can choose to wallow in self pity or I can choose to see what is all around me.

I have a home which did not flood during Hurricane Harvey. I have people who love me. I have a strong faith in Jesus. My son has grown up into an amazing man. (I raised him by myself; jus’ sayin’). I can still walk and when I can’t, I’ll buy myself a purple scooter. I’ve always wanted one anyway. And purple is my favorite color.

My point is this: being thankful and grateful are a choice. It’s not easy to be appreciative of life when all around us, our world is falling into pieces. But here’s the thing: choose to take a long hard look at all you have in your life. I am certain there is always something to be grateful for. If you feel stuck, begin a life of service to others. I did, and this one choice completely changed me for the better.

About a year ago, I became a member of the Pearland Citizens Police Academy Alumni Association. I volunteer to serve our officers and believe me, if anything will teach you to be thankful, it will be the police officers and their stories of courage and strength against all odds. These men and women leave their homes every day to keep us safe, not ever knowing if they will come home. But they do it anyway. This choice alone has made me eternally grateful for our men and women in blue.

Here’s the thing: becoming a police officer was never a choice for me, but serving them and my community are; MS was not a choice. But becoming healthier in mind and spirit was a decision I happily made. Being alone at the holidays is not my choice. But giving back to others is something I have grown to love. Not having a decent, God-fearing man to share my life with is not my choice. But believing God will one day answer my prayers, well, that truly is my choice.

And baking apple and pecan pie is not my choice either, but eating every single one in sight until I disappear into a sugar coma, well, now that’s a decision I never regret.

Until I stand on the scale…

Home and Lifestyle Modifications – New Edition of The Motivator

Posted on November 13, 2017 by MSAA

The Multiple Sclerosis Association of America is proud to introduce the latest edition of The Motivator, available now in both print and digital versions! This edition’s cover story, “Home and Lifestyle Modifications for Safety and Accessibility,” covers various strategies for better living at home – from strategically placed grab bars for safety, to building ramps and widening doorways for increased accessibility. Learn about easy DIY changes you can make, as well as tips on how to choose the right handyman to make any larger changes to your home.

Also included in this edition:

Organization updates from MSAA President and CEO, Gina Ross Murdoch
MSAA’s Chief Medical Consultant, Dr. Jack Burks, answers reader’s questions
MS research news updates, and much more!

Read an excerpt from our cover story here:

I remember skipping down the stairs and leaping over the baby gate at the bottom with my hands full of laundry. Then I’d run down another flight of steps to the basement to fill the washer before sprinting back up with the wet sheets. With one arm full of wet sheets and the other grasping my son, I’d jump down the back steps and hang the sheets on the clothesline. And that was all before breakfast.

I never dreamed that a few years later, I’d be stranded on my front landing, unable to get down the two steps without holding onto my husband. I certainly never imagined that I’d get stuck in my bathtub, unable to stand up without my husband to pull me out.

Over time, I found solutions to some of the obstacles I was experiencing. Some remedies were not difficult. For instance, I learned that showering was easier than taking a sit-down bath. When the time came that I needed to sit while bathing, I purchased a shower chair at a medical supply store. When the single railing on our inside staircase became too difficult for me to navigate, purchasing a second railing at a home-improvement store was a simple fix.

Continue reading the cover story at support.mymsaa.org/motivator to learn more about home and lifestyle modifications you can use to make your home more accessible.

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