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.

It’s OK to Be a Little “Selfish”

Posted on December 9, 2016 by MSAA

By Lisa Scroggins

People who have MS are like snowflakes: they have the same diagnosis, but each one will have a unique portfolio of signs and symptoms. It’s really a bizarre feature of MS, that despite similarities, the way symptoms appear can be drastically different. Many of the symptoms are invisible to others, yet have a profound effect on the person. Even so, most folks with MS understand pretty well the weird sensations and feelings of discomfiture that each one of us experiences.

Family members operate in a similar way, in that they all have their own relationship with each of the others. Some are closer than others, and some have little to talk about. While as a person with MS, you don’t get to choose your symptoms, you can choose the people with whom you surround yourself. Most of us know that drama and conflict are burdens on our nervous systems which we can ill afford. As demyelination strips us of some important “insulation,” we have to compensate for the less-than-ideal environment that we are left with. Emotions as well as signs and symptoms all emanate from our brains, and as MS uses a lot of our reserve, we have to rethink the best use of what we’ve got. This means that on a difficult day, when symptoms are aggravating, it’s not the ideal time to drag up an old argument.

Many of us cling to notions of what the “perfect” family looks like and even subconsciously try to recreate that at special times. It’s prudent to bear in mind that emotions are likely to be running high, just because of the sentimental character of beloved holidays. Combining that with any worsening of old symptoms or the entry of new ones has explosive potential. It’s very important to protect yourself from stormy interactions if at all possible!

What I’m really trying to say, is that if you have MS, you really must be selfish at times (like the holidays) of high stress. I use the word “selfish,” but truthfully, your selfishness will pay off for the people who are closest to you. If you’re able to refuse to engage in ancient dramas, to get upset about inane things like “who should do X,” and “why don’t you do Y?”, you will have gone a long way toward preserving the quality of this time for you, and for those closest to you. I wish you all a serene, sometimes exciting, and happy time, whichever holiday you are celebrating.

No more stress? Is that even possible?

Posted on November 28, 2016 by MSAA

By Penelope Conway

Stress is not a good combination with Multiple Sclerosis. I hear all the time how stress needs to be limited to keep from triggering an exacerbation, but how do you do that in a world full of “I want it now” people and “it can’t wait” situations?

There are hundreds of lists on the internet explaining what you can do to avoid stress, but listing things out and doing them are two different things. Then if you add MS into the mix of things, it seems an impossibility.

Maybe your day starts something like this…

You wake up in the morning to a busy day planned. You didn’t hear the alarm clock earlier so you are already being rushed to get your day started. It’s early, you’re exhausted and your body isn’t cooperating. You take a shower, and even though you did every cool down technique you know, your body is simply too weak to keep going at the fast pace you have set for yourself.

You take a moment to rest then push on to get dressed so you can get out the door to make up for missed time. All the while, playing through your head is a rundown of everything you must do today. You have lists created, app alarms set on your phone to remind you of your time constraints and post-it notes scattered everywhere.

You do your best to hold back your frustrations but before you have even left the house to begin the day, you are feeling overwhelmed and defeated. Somehow MS just doesn’t fit into a busy day and somehow you always seem to forget that tiny little fact.

The unexpected happens much more often now that MS is a part of your world. You get tired faster, weak muscles limit your functionality, your vision messes with your ability to complete even the simplest of tasks, dizziness and vertigo trip you up, and your thinking gets all muddled in the process. It’s hard planning for the MS unexpected. I always say a life with multiple sclerosis is like a box of chocolates…you never know what you’re gonna get. (Thanks Forest Gump for the inspiration.)

I have discovered that stress makes you extremely tired and can cause MS to worsen, but it’s stressful to avoid stress so you end up stressed out anyway. It’s really not easy trying to avoid stress. Ugh…just thinking about it is stressing me out.

So how do you fit a life with MS into a stress free list found on the internet? Well, for me that’s an impossibility. It seems MS doesn’t like lists or plans. It kind of has a mind of its own and doesn’t seem to want me to know ahead of time what it has in store for me throughout the day.

When life become overwhelming, and many times even before it gets to that point, I find that I need to take a moment to step back from all my commitments, work, and obligations. I need to take a moment to pause and re-examine everything. Literally.

Is there anything I could change or remove from my day that would help ease the load? Do I really need to vacuum the house today, tomorrow or even next week? If I wait and take a shower before I go to bed rather than when I get up in the morning, will it help? Can I recruit someone to pick up a few things from the store for me so I don’t have to go? Will the world fall apart if the laundry isn’t finished?

You are more important than the chaos that surrounds you and way more important than the stress that it can cause. Work on changing your workload bit by bit, little by little, moment by moment. You won’t be able to quit everything (which I happen to think would be nice to do at times) and you won’t be able to stop the world from spinning out of control, but you can make a positive change in your own life.

Take time to slowly work your way out of those over-commitments by finding others willing to step in and help. You may need to juggle schedules around and say no to people you normally wouldn’t say no to, but in order to simplify your life and relieve the pressures weighting you down, you have to do it. It’s not an option.

Do what you can today and leave the rest for another day. Take one step closer to living stress free, and before you know it you will be enjoying your life….even with Multiple Sclerosis.

*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.

Happy Thanksgiving from MSAA

Posted on November 24, 2016 by MSAA

Wishing you and your family a Happy Thanksgiving from all of us here at MSAA!

To send a Thanksgiving eCard to your friends and family, go to support.mymsaa.org/holidayecards.

Please note: MSAA will be closed on Thursday, November 24th and Friday, November 25th. We will be back in the office on Monday, November 28th.

Happy Thanksgiving!

Last Chance for Thanksgiving eCard Vote

Posted on November 18, 2016 by MSAA

Have you voted yet for your favorite MSAA Thanksgiving eCard?

There’s still time to cast your vote for your favorite holiday greeting! Voting closes on Friday, November 18th at 3:00 pm (Eastern) so make sure you get your vote in at support.mymsaa.org/voteforcard!

Didn’t get a chance to vote? No problem! We’ll be announcing the winner the week of Thanksgiving on Facebook and via email.

Be the first to know which Thanksgiving eCard was triumphant by following us on Facebook or signing up for email.

Make Life Easier To Get More Done and Lessen Stress

Posted on November 9, 2016 by MSAA

By Stacie Prada

Everyone I know feels overwhelmed at times. They forget things, and they accomplish less than they’d like sometimes. I’m comforted when I have an organized life and am not worried that I’m forgetting something. I like to create systems that support me in being organized, simplify my life, and make life easier so that I can exert energy on the good stuff.

To reduce my stress level, frequently I put effort into reducing the number of decisions I need to make and the quantity of things I need to remember. If I don’t have a method for remembering it, I’ll get in a thought loop reminding myself to do it later. After a while, it can be crazy. It’s wasted energy that could be put to better use.

Streamlining things I do repeatedly makes them easier, less stressful, and more likely to get done. Making decisions takes energy. The more decisions I make in a day, the more energy it takes to get through the day. Decision fatigue is real, and when MS fatigue already affects a person’s health it can really lower their quality of life. Given that I want to be productive and maximize what I can accomplish, reducing the number or decisions I need to consider and decide repeatedly frees up energy and time for other things.

Simple ways I reduce the number of decisions daily life requires and ways I make decisions when I’m not in a time crunch are as follows:

Lay out my clothes the night before so that I don’t need to figure it out in the morning when I have a time limit for getting ready. I include my underwear and socks so everything is ready for me to get dressed and there are NO decisions to be made. My shoes and coat are ready by the front door, and so are my keys.
Create a packing list for things I do or places I go repeatedly. I refer to lists frequently before I go on a bike ride, take a long walk or hike, or go to the pool.
When making meals, make extra. Leftovers are easily one of the most time saving and decision reducing methods for reducing stress. Think about how often you ask yourself what to make for dinner or your next meal.
Automate bill payment when possible. For things like electrical or phone bills, set up bill pay so that they automatically get paid with a credit card. I can pay multiple bills in one sitting when I pay my credit card bill. I also don’t need to worry about forgetting to make a payment.

Lots of times it’s not about being unable to do something I want done, it’s about not remembering to do it. It’s easy to forget things if I’m out and about or get distracted at home. Creating memory triggers helps. Check out these easy ways to stay focused:

Make reusable flashcards. I use 3” x 5” index cards for recurring tasks or habits I want to create. When I remember I need to do a recurring task and can’t do it immediately, I’ll pull that card out or make a new one. I’ll place it somewhere I look frequently. For me it’s the kitchen counter or dining table. It’s a time saver and memory jogger. These reminders are especially great when you share your home. Family members will realize that laundry needs to be done and may help without you asking. They’ll also appreciate that you’re doing things that contribute to the home when otherwise they may not have noticed.
Set a timer: When cooking or doing things where I may not hear the buzzer, I’ll set a kitchen timer or phone alarm. This is great for things like laundry, cooking that requires pre-heating, or pulling something off the stove. It’s not a failure to need to use these tools. I know people with perfect cognition that get distracted and nearly burn the house down by putting something on the stove and forgetting. The timer is a necessity for reminding me I turned on the oven or put a load of laundry in the wash. I don’t necessarily need to have a reminder card for that (even though it doesn’t hurt), but there are instances when the timer goes off and it takes me a moment to remember what it’s for.
Leave myself a note: When needing to do something later, I’ll put a note in a hot spot I see frequently. It may be a post=it left in the car, at home or on my computer monitor at work.
Put appointments and reminders on the calendar in a mobile phone with an alert.
Create lists for what I need to bring for things I do repeatedly. I have lists for going for a walk, bike ride, leaving town, and getting back from out of town. I also have a pretty standard list of grocery items that I frequently eat. The point is to ease up on the number of times I need to figure out the same thing.

Often the difference between feeling overwhelmed and feeling like things are doable is one task or obligation. If you’re stressed out and having a hard time getting things done, be brutal. Remove things that don’t absolutely need to be done the way you’re used to doing them or would prefer to have them done. What’s the minimum necessary to get it done, and when is the deadline? What can be delayed until tomorrow, next week, or next month? What doesn’t need to be done by you or at all?

Get over the feeling that it’s embarrassing or not okay that you need reminders. I once had a family member laugh at me because she saw my reminder on the counter to “pack” for a trip. She thought it was absurd that I was reminding myself to do something that was obvious. Yes, it was needed and obvious, but my simple reminder kept me focused and less stressed.

I’ve learned that a single tracking or organization tool isn’t going to work for everything I want to remember or do. Just like Facebook, Instagram, Pinterest, email and texting have different strengths and times where they’re appropriate, organization is a compilation of lots of little methods. Think about what works and why it works for you. Then build on that. Where do you need to remember things and where do you frequently look? Make a system that works for you. It’ll be unique to you, your life, and your priorities.

*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/

Wellness and MS

Posted on October 26, 2016 by MSAA

By Lisa Scroggins

Before I had to start using a walker to get around, I was still working full time, plus I had an hour one-way commute to work. Honestly, I worked far more than the 40 hours a week that counts as full time. But in those days, I used to joke that my healthcare was an additional part time job, in itself. Between going to the clinic every thirty days for an infusion, and handling refills for other medications, as well as the other “normal” things that everyone has to do (teeth cleaning, physicals, mammograms, etc.), it took up too much time, in my opinion.

I had it so easy! Now, it really is a kind of job. After I stopped working, almost three years ago, I told myself that I would dedicate myself to “rehab.” With a lot of other life details that intervened, I didn’t do the best job of rehabbing on my own. There was a little bit of denial; I believe that deep down, I thought maybe without the stress of my job and commute, I would just naturally “get better.” Probably, this won’t be a shock to anyone, but that’s not what happens! It took me awhile to come to terms with my new and unwelcome status. Much of the turmoil surrounding my leaving the workforce, and the other big changes that took place in our lives has calmed and life feels a little bit stable now. And so, my new job/work of rehab has begun in earnest.

I have come to embrace a sort of DIY wellness attitude, as I no longer enjoy a “yes, but” condition, as in “Yes, I have this disease called MS, BUT I can still work, and it is invisible to most people.” It’s plain to see that I’m disabled. After I left my job, I spent a good year and a half traveling to an MS specialty clinic that’s within a day’s drive for me, hoping that maybe there was a “holy grail” that the ordinary neurologist wasn’t hip to. There isn’t. I did learn a lot that I hadn’t known before, and I also learned a hard lesson: not all neurologists, even the specialists, have a decent bedside manner. I had a gut reaction to the specialist the very first time I saw her, but told myself that as long as she might be able to help me, I shouldn’t worry about the touchy-feely part. I know better, and I’m not sure why I didn’t trust my gut, something I always told my kids to do. I’ve stopped going to that doctor, since her demeanor was so objectionable to me. While I may return to that clinic, it will be to a different neurologist. I’ve empowered myself to only seek out assistance from doctors who seem to care about me, something paramount for mental wellness.

Nowadays, I spend a lot of time reading and researching everything from up-and-coming medications to figuring out new and different ways to exercise. One new issue for me is pain. Except for the occasional flashpoint of trigeminal neuralgia, pain wasn’t an issue for me. In retrospect, this new symptom first started to occur about a year and a half before I stopped working, and if I hadn’t made a note of it, I wouldn’t have realized how it sneaked up on me. What’s worse is that it has continued to develop and progress. In some online MS groups, a lot of people with MS do have pain. Lots of them take powerful drugs to try to control it. As bad as my back hurts at times, I do not want to use a pain-killer, and would prefer not to add any more drugs at all. I have learned that when the pain seems especially bad, what helps me the most is to apply a cold pack. I tried heating pads, and those sticky thermal pads that you can buy in stores. My husband bought a pad that can be used for warmth or cold. On a whim, we tried putting it in the freezer then inserting it in its carrier and wearing it so that it covers my shoulders and upper back. For me, it’s far more effective than any of the heat methods I tried. I’ve gotten so smart that I no longer wait until the pain is excruciating, but actually try to ward it off. I know that my sarcastic attitude doesn’t always help me, but really, why on earth do I beat myself up for not knowing? What matters is that I found some relief. I try to be open to new ways, even if I don’t believe they will help. There are other approaches to managing pain, too. I take a lot more NSAIDS than I used to (usually Aleve or ibuprofen) but have deemed it necessary. I even tried some homeopathic stuff, but didn’t notice any affect at all. What does seem to help is sticking to a schedule of exercise. I know that it’s vital, but it remains a challenge to structure my day around that. The effort to manage my time so that exercise is a priority, yet doesn’t prevent me from doing other things remains a struggle. For example, it’s important to do food preparation, which involves deciding what to eat, making the shopping lists, planning the menus, and actually preparing the food, all of which used to be easy. I’m still learning how to structure my days so I have built-in rest times between tasks, and preventing pain and fatigue that destroy the rest of the day.

The other thing that really is phenomenal is the smorgasbord of information that’s available to everyone, including people with MS: the internet. It’s friend and foe both, and if you’ve dipped your toe into it at all, it’s easy to get overwhelmed. I have found a few resources that I turn to again and again, because I find them to be chock-full of information. My favorite online tool has been “MS News and Views,” hosted by a patient with MS. I am not a fan of watching videos on my smart phone or any other way when it comes to MS; I just prefer to read rather than watch. But what I like about this resource is:

It’s run by a fellow patient and,
Information is available in many ways: MSVN channel on YouTube, with recordings of presentations, E-newsletter, Blog-Talk Radio series archive, a Webinar Series, and much more. The website is: www.msviews.org. The YouTube channel is called MSViewsandNews Learning Channel. There are presentations about exercise adaptations, nutrition, MRI’s, and medication. I have learned to love watching videos and this website is the reason! Some of the videos are almost as good as a visit to a doctor, in terms of the information and education made available.

Wellness in the context of a chronic, life-long disease may seem oxymoronic, but it’s not. I challenge you to take back some control and avail yourselves of a plethora of self-management.

Wellness Covers A Wide Field

Posted on October 21, 2016 by MSAA

By Lauren Kovacs

Staying well encompasses physical and mental skills. Everyone has different needs and tricks. The key is to find what works for you. Maybe you choke up on the bat or spit in your glove.

For me, gluten reduction helps me stay ‘well-ish’. Eliminating it completely caused massive weight loss. I figured it out when my beloved donuts caused me to be super floppy. It turns out too much sugar contributed to the wet noodle effect too.

I did therapeutic horseback riding for years. It improved my gait, when I had one. After years, I had to give it up. I was wobbly and I was seriously freaking my Dad out who was my official side-walker.

Turmeric seems to help me be able to walk some. I use a walker in the house to keep my circulation going. Yoga helps, if you have energy. I like seated Yoga or I find exercises geared to seniors. I try to be active while reducing falls by being seated.

I schedule my day of any activity between 9-12. Not ideal, but I am worthless after lunch. I am in a different body, after lunch. I take half my “awake” medicine, nap and take the other half to get me through homework time with the kids. Combating fatigue is like walking a tight rope. One bobble one-way or the other will make you crash.

Be patient with yourself. We are standing in front of a pitching machine. It takes a lot of practice and there is a learning curve. You have to be ready to take a hit too. Strategy is important. Sometime you can smack the pitch and others you swing and miss.

Just like selecting your pitches, select how you respond to want MS throws at you. Days where you strike out miserably are going to happen. Maybe the pitch hits you and you have a bruise, but you advance to first base. You now have knowledge about avoiding that situation again. In my case, I learn to avoid a fall that way again.

Learn to treat yourself. Cheer yourself on out load. Positive affirming words to yourself out load can have a big impact. Just like a cheer squad helps to push a team forward, cheer for team YOU.

2017 Art Showcase Submissions

Posted on October 19, 2016 by MSAA

MSAA is now accepting submissions for the MS Ability Showcase and the Four Seasons Showcase!

A Panda Named Roni by Susan Russo

MSAA welcomes paintings in oil, watercolor, and acrylic, as well as pastels and drawings in pencil and ink. MSAA also accepts digital artwork.

Artwork will only be accepted from individuals who have MS. Submitted pieces must be two-dimensional. Sculpture, pottery, fabric, and other types of three-dimensional works cannot be accepted to either showcase. The MS Ability Showcase is open to all themes; however, submitted artwork to the Four Season Showcase must depict a specific season or holiday.

Snowy by Paula Breiner

Submissions will be featured on MSAA’s website beginning March 2017 in recognition of MS Awareness Month. Each month we will highlight one artist and his or her work.

Submissions will be accepted between now and December 16, 2016.

Submit your best work and view complete submission guidelines at support.mymsaa.org/showcase!

Read the Latest Issue of The Motivator

Posted on October 17, 2016 by MSAA

Service Animals and MS – read the newest Summer/Fall 2016 issue of The Motivator, available now in print and digital editions.

Read about the following articles in this issue of The Motivator:

Cover Story:
The Joys and Challenges of a Service Dog Partnership
Dr. Darbi Haynes-Lawrence takes readers along her eventful journey to partner with a service dog, encountering many benefits and hurdles along the way.

Up Front:
MSAA’s President and CEO Gina Ross Murdoch talks about record-breaking outreach, a new online community, and upcoming events to support MSAA’s vital programs and services.

Research News:
Information is given on newly approved Zinbryta™ (daclizumab) and two investigational medications, Ocrevus™ (ocrelizumab) and siponimod.

Read the latest issue at support.mymsaa.org/motivator.

My Wellness Litmus Test & Sphere of Wellbeing

Posted on October 14, 2016 by MSAA

By Stacie Prada

If I distill my health down to a litmus test to objectively judge my level of wellness, it boils down to this: How am I naturally behaving right now?

How I naturally behave is a reflection of the thoughts in my head and how I perceive the world. Am I struggling with something, or am I content? Am I interacting with other people positively without thinking, or is it taking extra effort to behave in a socially acceptable manner? Do I respond to inconveniences with frustration or compassion?

When our physical health is compromised and we’re sick, injured or chronically ill, it’s easy to be grumpy. After a car accident in high school, I lived with a constant headache for five years before having jaw surgery to correct TMJ misalignment. During those years, constant physical pain became normal. There were likely many moments I was grumpy. But living with pain didn’t preclude the wonderful times I experienced, nor did it override my sense of wellness. It was a part of the experience and something I worked on trying to improve. MS is like that for me. It’s an inconvenience and something I factor in to my daily decisions and life choices. With years of monitoring my health and adapting, MS has become only a part of my experience and not a constant dominating fear.

That said, MS does affect how I feel and can make me feel a little unwell at times. It doesn’t mean I’m not well. It may just mean I need an adjustment, a slight course correction to stay on the wellness path. Converting the realization that I’m not as well as I want to be can be done by thinking about the areas of my life that contribute to my wellbeing.

When I list them all, the list gets long, and I can overthink it pretty quickly. Thankfully ruminating is an enjoyable hobby for me. I loved reviewing wellness wheel graphics online and seeing how other people explain factors for health.

There are a lot of variations of the wheel of wellness and they can be used as a starting point, but I think it’s important to think about what you care about, not what you think you should care about.

I want to learn, contribute, be active, have meaningful relationships, feel good and look good. I want to be financially stable, have a tidy home and travel. For me being well means I can do at least a little of each without neglecting other aspects of my life that are important to me.

What if someday never comes? And what if it does? For me wellbeing is enjoying life today while planning for a future. The perfect day for me would include rest, activity, relationships, learning, contributing, creativity and celebration.

Look inside yourself, look outside yourself, and think about the mark you want to leave. If I wanted to score wellness for myself, it would be a complex equation with many, many variables. In my attempt to create an equation I visualized a sphere that magnifies based on my areas of health. When I focus on things I can control, say, do or believe, it bolsters my sense of wellbeing. It distracts me from things I can’t control, and it genuinely boosts my mood and love of life.

What would you add for your own sphere of wellbeing?

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