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.

Relapse Management Ask Me Anything – A Recap

Posted on March 16, 2018 by MSAA

On Monday night, MSAA held its first Ask Me Anything session of MS Awareness Month 2018! Focusing on the topic of Relapse Management, MS Expert Annette Okai, MD spent one hour answering more than 25 questions from our My MSAA Community members.

Some of the most popular questions from the AMA with Dr. Okai include:

“How do you differentiate relapse from progression or what I call symptoms creep?”
“Is there a disadvantage to waiting out the symptoms, and not initiating steroids?”
“How long does a relapse typically last?”

Find Dr. Okai’s answers to these questions and many more on the community at: healthunlocked.com/mymsaa

Relapse Management

Posted on March 14, 2018 by MSAA

By Stacie Prada

Managing MS relapses can mean different things to different people, and success varies immensely depending on how long you’ve had multiple sclerosis, the symptoms you experience, your level of physical ability, your disease course, and your expectations. When I think of managing relapses, I think of treating, avoiding and learning from them in order to slow disease progression and reduce the justifiable fear that comes each time one occurs.

We can treat relapses to try to shorten the duration.
We can try to avoid relapses with lifestyle and medication. This is an idealistic goal and may be possible, but it places a lot of blame or praise on the person with MS. It’s a pass-fail test that doesn’t necessarily correlate with how well a person manages their health.
We can learn from relapses each time we have one to better understand how our body works.
We can work to manage the fear that comes with relapses and disease progression. This part holds a lot of mystery and is sometimes the most difficult part.

When I was first diagnosed, I had no idea at any given moment if I was having a relapse or not. My scans made it clear I’d likely had MS for over a decade before diagnosis, and I’d had no idea I even had a health issue. My symptoms were just my life, and I had no comparison. It was scary and felt unpredictable. I didn’t know if there was anything I could to do reduce them, if I was doing things that made it worse, or if at any moment I was in the midst of a relapse.

Managing relapses at that time meant figuring out when I was having one and trying to stop it once it started. It took learning about MS symptoms and paying attention to how I felt. I compared how I felt to my MRI scans and neurologist’s assessment in order to know whether or not I was having an MS exacerbation. Steroid treatment was done to try to stop relapses. Because my biggest symptom was fatigue and I had no way to objectively measure it, I lived in a fairly constant state of fear and self-doubt. What got me through was a belief that I would get through this phase and learn what I needed to know to live with MS. I didn’t know how, but I trusted it would happen eventually.

At six years past diagnosis, I experienced an MS milestone. I achieved a point of confidence where I felt like I could finally tell if I was having an exacerbation or not. I knew how terrible I felt when I was having a relapse, and I knew how well I could feel when I wasn’t. I’d learned my body enough to know which symptoms were normal for me. I could distinguish between when the intensity and duration was likely due to existing damage from previous relapses and when it was likely new active MS activity.

I attribute this MS milestone to constant monitoring and self-assessment. After a relapse, I would consider what helped and what was hard about it. I’d speculate on what would have made it easier and how I can prepare for the next relapse. I’d think about how it felt, and I’d try to match up that feeling to my test results. When I felt poorly but wasn’t having a relapse, I’d use that information to learn what is normal for me. Knowing that helped me increase confidence and lessen my fears.

There’s so much to learn about MS, relapses and how your unique body behaves that has no prepared reference manual or shortcut around education and effort. It’s a moving target since our bodies are aging and old damage can cause new symptoms. There is no one proven or best way to manage health to avoid relapses. Monitoring your health, learning all you can, and trying things to see what works helps build self-confidence. Understanding how MS affects a body in general and yours specifically helps reduce the fear of the unknown. Reducing fear can make every aspect of living with MS more bearable.

People with MS do not have complete control over whether or not they have a relapse. If someday there is a determined cause, cure and 100% effective management regimen, then that might be possible. Until then, the only ways I think relapses can be managed are to tackle them when they happen, to reflect on them after they happen to try to find any patterns or contributors that you might be able to control, incorporate what helps, avoid what doesn’t, and to try to make the fear manageable when they do happen.

*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/

MS Awareness

Posted on March 9, 2018 by MSAA

By Lauren Kovacs

Guess what? Awareness goes both ways.

Yet another thing that MS folks deal with is awareness. You have to be aware of your own limits and make others aware, too. Who doesn’t want people to see MS? Sadly, awareness has to be spoon fed to others. Little bits. The taste is bitter so, go slow.

If you overdo the information, glazed eyeballs are the result. Some choking may also happen. Strained MS information spit back at us is the last thing we need. Like feeding a baby strained peas, take it slow. Be patient. Little bites.

I see MS awareness as conjoined twins when it comes to others. I give others the scientific/medical side and I always couple it with a simple explanation. MS is not easy for anyone to understand. Analogies help when explaining a symptom to others.

Yes, there are times I lied and said it was from my college cheerleading days. I tell them it was a neck injury from falling off a pyramid. What? I was, in fact, a college cheerleader and I did fall off a pyramid. Not a total lie. Plus it is way more glamorous and interesting. The people I have told this to were usually repairmen that I will never see again.

Lying is wrong, I know. Everyone likes a bit of drama though. I now say it is MS and let them digest it and ask questions, if they want. Boring. Most people need time to digest MS information. Awareness is part of that digestion. Frustration at others not grasping or understanding it is the greased pig of MS.

Heat and fatigue plague most of us. I never keep that to myself. This is when you get to play detective too. If you think the person can take a bigger bite, share. If not, back off a bit. You have to kind of see what the person can handle.

Know your own limits too. We are all super heroes, but even super heroes have limits. The Flash can only run so fast, for example. Super heroes know their limits and have enough humility to know when to stop.

It has gotten easier, as my MS shows now. People know I can’t regulate my temperature. The ice wraps and frozen drinks give it away. Maybe me looking like a wet dishrag was a clue. I make the drowned rat style look good.

Explaining neurological fatigue is not easy. We don’t really have chronic fatigue, but it is chronic. It never goes away and sleep doesn’t mean energy, ever. It helps that my sons and husband see when I begin to wilt. Around others I say it politely and do what I got to do. I exit the stage and if people boo and hiss, I let them. Take care of YOU. Self-awareness is important too.

Awareness is tough, but be aware that you are the one dealing with MS on a personal level. Fatigue and heat ruin YOUR fun. We are the ones who deal with what happens when we get too tired and/or hot.

Years ago, I once got too hot and lost vision in both eyes for about 30 minutes. My life stopped. Fear tore me apart. No one else knew and life didn’t stop for them. It was a very long 30 minutes for me.

We have roadblocks and we have to find a way around them. Even if people had known, would it have made my eyesight come back faster? If I had avoided getting hot, my sight would have been fine. Learn to be on top of your own awareness. Awareness goes both ways.

Finding a Support Network

Posted on March 7, 2018 by MSAA

A support network is somewhere that you can share feelings or vent frustrations – a place to be able to check in and touch base with others or make connections. Ultimately, it’s a system that is there for you without judgment or expectation that you can depend on. That’s what members have found on our platform, My MSAA Community. This online forum not only offers a safe place to ask questions and find information, it has also become a reliable “check-in” community for those involved.

Updates are often sent to one another, as members check in with the community to let everyone know about their medical appointments to get feedback and encouraging words.

“I know it can be overwhelming with all the different tests and doctors. Try to relax (I know, easier said than done). Good luck.”
– Community Member

Countless moments of kindness and empathy can often be found on the community, especially as members face some challenging issues such as depression. Community members often find themselves showered with support. Members also reach out to each other to ask how things are, to send well wishes when needed, and to offer encouragement to those having a difficult time. One member of the community shares, “just letting you know all our thoughts are with you today – keep smiling” to another member having an MRI done that day. In addition, the community’s Birthday Ambassador keeps track of birthdays and sends special messages on celebrating the occasion.

If you haven’t done so already, take some time to check out My MSAA Community and find a new support network today.

About MS – Newest MSAA Publication

Posted on March 5, 2018 by MSAA

MSAA is pleased to announce its latest booklet, About MS. In this second edition, MSAA provides a comprehensive introduction to the development and treatment of MS, along with a great deal of useful information that touches on many aspects of the disease.

The second edition of About MS includes:

An overview of the history, development, types, and potential causes of MS
Information on who gets MS, how MS is diagnosed, and how disease activity is evaluated
Descriptions for treatments for both relapses and long-term disease activity
And more!

Read an excerpt from About MS here:

Initially, most people with MS experience symptom flare-ups, which are also known as relapses, exacerbations, or attacks. When someone experiences a relapse, he or she may be having new symptoms or an increase in existing symptoms. These usually persist for a short period of time (from a few days to a few months) and afterward may remain symptom-free for periods of months or years. This type of MS is referred to as relapsing-remitting MS (RRMS). Approximately 80 to 85 percent of people with MS are initially diagnosed with this form of the disease.

Over time, RRMS may advance to secondary-progressive MS (SPMS). This form of MS does not have the dramatic variations in symptoms that RRMS does, but rather has a slow, steady progression – with or without relapses. If relapses do occur, they usually do not fully remit. Without treatment, approximately half of individuals with RRMS convert to SPMS within 10 years. However, with the introduction of long-term disease-modifying therapies (DMTs), fewer individuals advance to this latter form of the disease.

Individuals who are not initially diagnosed with RRMS may be experiencing a more steady progression of the disease from the onset. Approximately 10 percent of the MS population is diagnosed with primary-progressive MS (PPMS), where individuals experience a steady worsening of symptoms from the start, and do not have periodic relapses and remissions.

Continue reading this booklet at mymsaa.org/publications/about-ms/ to learn more about multiple sclerosis history, diagnosis, treatments, and resources.

Meet the Board

Posted on February 28, 2018 by MSAA

MSAA strives to be a leading resource for the entire MS community by improving lives today through vital services and support – and we could not accomplish this without the help of our volunteer board members. MSAA’s Board of Directors is comprised of accomplished professionals from across the country who volunteer their time to further MSAA’s mission. With our new series, Meet the Board, we hope to introduce you to our wonderful volunteer board members!

MSAA is proud to highlight two volunteer board members this month – Eric Bossard and Steve Bruneau

Eric Bossard
Member of the Audit and Finance Committee, Communications and Marketing Committee, and Development Committee

Professional Background: Eric Bossard founded Commonwealth Insurance Advantage in 2016 in an effort to expand his outsourced risk management and insurance expertise globally. In addition, he co-founded Archway Insurance in 2002 as an outsource risk manager, which placed insurance coverage on behalf of brokers nationwide. In 2006, Mr. Bossard was instrumental in the acquisition of Alliance National Insurance Company (formally UMI Insurance Company), a New York domiciled property and casualty insurance company where he originally served as president and chief operating officer. He is currently one of the owners.

Steve Bruneau
Treasurer and Chair of the Audit and Finance Committee

Professional Background: Steve Bruneau is a product-development expert and business leader who draws upon his engineering, information-technology (IT), and business skills to develop award-winning, patented products and services that have jump-started businesses ranging from startups, to Fortune 500 companies, to programs for the United States Military. Mr. Bruneau is presently the Chief Operating Officer for Pulsar Informatics Inc. in Philadelphia, Pennsylvania. Steve also presently serves as the Business Manager for Bruneau Family Care, P.C. in Mount Laurel, New Jersey.

What inspired you to join MSAA’s Board of Directors?

Bossard: “Former chair and current board member Jim Anderson and I are longtime friends. I was in the process of making a professional change and he was aware that an integral part of this change was to become more involved volunteering. When I met with newly elected president Gina Ross-Murdoch she displayed a level of enthusiasm rarely seen in the nonprofit arena. This organization truly demonstrates there is more to life than the moment we all live in.”

Bruneau: “From the time I was young I have been involved in service organizations. I came from a modest family and appreciated the help that we got from so many places growing up that continuing to pay it forward is not only the right thing to do, but it is very rewarding. When my kids aged out of youth sports and the local school system, I wanted to find other organizations where I can apply my energy to do good things…and I stumbled across the MSAA in all seriousness.

My wife is a primary care physician and we have our own medical practice. There are many patients who need assistance in one way or another and when I came across the MSAA and its mission of helping people today, it struck a chord with me that I couldn’t help but get excited about.”

What are your goals as an MSAA Board Member?

Bossard: “I am dedicated to expanding the awareness of what we as an organization provide to the MS Community which is to Improve as many Lives as we can Today…be it cooling vest, our help line or covering the cost of an MRI. In addition, I am eager to help develop new and exciting fund-raising activities for the organization.”

Bruneau: “I want to bring my professional experience and talents to the team to help the organization grow and expand its value to the MS community. MSAA has such a tremendous, dedicated staff of people who work tirelessly to help those with MS get the support and services they need and with my IT background, I think I can help evolve our internal and customer facing systems to ease the burden of providing our services while increasing the impact, responsiveness, and value to those with MS and their caregivers.”

Editor’s Note: MSAA is extremely proud and honored to enlist the support of Eric Bossard, Steve Bruneau and all of our dedicated Board Members who volunteer their time, expertise, compassion, and leadership to help us achieve our mission of improving lives today for the entire MS community. We are very grateful for their service and look forward to their continued support as we strive to serve more people in more places than ever before. Thank you once again Eric and Steve!

What’s New?

Posted on February 23, 2018 by MSAA

By Lauren Kovacs

I know this is very hard. Fear is paralyzing, even without MS. You wonder why you didn’t wear your brown pants when trying something new. I am not suggesting Bungee jumping in your wheelchair or am I?

Branch out a bit. I skied the Swiss Alps, was a gymnast, a college cheerleader and hiked the Highlands of Scotland. Physical freedom may be way out of reach now for most of us now. Wheelchair wheels don’t do well in mud and sheep poop. Do something small instead. Be adventurous. My adventurous thing is leaving the house wearing regular jeans.

Try something new to you. People may not be impressed that you can do something, but you might. When I rode horses, for therapy, they had me ride backwards to work other muscles. I hated it and was terrified. But, not many people have seen the southbound end of a horse while it walked around the ring. Try. You may surprise yourself.

I have terrible hand coordination. I got a Knifty Knitter hoop and made hats. Takes me days, but when I am done I know I accomplished something. Others may not appreciate your hard work, but you know. Maybe you need to see and touch your accomplishments.

Pick a new thing and try it. I tried painting with my non-dominant hand. I used to be a great painter and it was so bad my kids could not even tell what it was. I no longer paint, but I tried it.

Maybe try a new thing when no one is around. I tried painting when the kids were at school. It was an epic fail, but the important thing is to try. It was a horse in a field and my kids thought it was a rock and I had to work hard to even get them to guess.

Try things that are completely new. Painting with my non-dominant hand was a disaster. I saw the mess on paper, when I was trying something I used to be good at. It just pointed out how MS has taken everything. Don’t set yourself up for disappointment.

Now, if an opportunity involves something very new, I try it. Ok, bungee jumping will never happen. I stay away from what I used to be able to do. Set yourself up for success. Trying what you used to do might cause failure. Trying something totally new might be your thing.

You may find you are awesome at fly-fishing, for example. What you used to shy away from or dismiss could be a great activity. Maybe you can pick out great lures for fly-fishing. Playing guitar with your toes might be for you.

Gender norms might need to be crossed. I know a guy who took up knitting. Be brave. It is like when my mom made me eat Lima beans, when I was a kid. I still hate Lima beans. Don’t knock it until you try it. Feel free to knock it out, if it is not for you.

Benefits of Yoga

Posted on February 21, 2018 by MSAA

Attempting to try a new exercise routine can feel intimidating, whether it is something you have thought about trying for years, or an impulsive decision. It’s not always easy, but stepping out of your comfort zone can be good for your body and keep your muscles from getting too complacent. One exercise routine that is gaining popularity is yoga.

An estimated 20 million Americans practice some form of yoga for exercise, and more than a third of those people are fairly new to the practice. Yoga is a gentler form of exercise that focuses on stretching and breathing, which can offer a number of benefits including increased flexibility and improved respiration.

There are many different types of yoga available for a range of experience and flexibility levels, as well as yoga practices designed for people who may have limited mobility due to a chronic illness, like multiple sclerosis. Many traditional yoga poses can be adapted to be performed in a seated position on a chair or laying on a bed, rather than sitting or laying on the floor. Yoga can offer specific benefits to individuals with MS by helping:

Reduce fatigue
Reduce spasticity
Improve range of motion
Improve balance

Yoga may not be for everyone, but if you are looking for something new to try as a way to stretch your muscles and get some exercise, look into yoga as a possibility*. If you are interested in learning more about yoga designed for people who have MS, check out our story from the Winter/Spring 2008 edition of The Motivator, Health and Wellness: Enjoying the Benefits of Yoga.

*As with any form of exercise, be sure to check with your physician before you begin a new workout routine.

Trying New Things: The Rewards Usually Outweigh the Risk

Posted on February 16, 2018 by MSAA

By Stacie Prada

I’m realizing I have a pattern of planning ambitious goals or adventures when I’m feeling my lowest. My guess is that it helps me to look forward to something. It’s a way for me to get outside of my head where I’m thinking about how tough things can be.

It’s reasonable to limit activities when you have health issues. Addressing nutrition, rest, fitness and overall well-being is a full-time job. Just the idea of adding a new activity or event to my schedule can create anxiety for what it will take to make it happen.

Doing things outside of my routine usually involves budgeting my energy leading up to and following the event. The lure of staying home and resting is comforting, and conceding to that tendency isn’t a bad decision. It’s often easier and causes less conflict with people who care about us to stick to activities that clearly help our physical health. They may think, and we may agree, that we may be compromising our health and taxing our bodies by pushing ourselves.

I think the key to why this matters is that having a chronic illness can make a person feel weak, powerless and like a victim. Feeling like that is depressing. Setting goals or doing things outside of our comfort zone creates a feeling of adventure and accomplishment. It adds to a sense of strength and empowerment. This is one area of life where I think one can help offset the other. It’s hard to feel powerless when you’re kicking butt doing something you’ve never done before.

It was at a very low point in my health that I found a Groupon for doing trapeze (read about it here) and decided to give it a shot. I bought it and planned going with a friend. Assuming I would feel better at some point and planning the excursion was something that inspired me. It also distracted me from how I was feeling at the time. I went on to do the trapeze class, love it, and go back many times. I tried it, succeeded, and built up my physical confidence.

Conversely, I don’t even need to succeed by someone else’s standards to feel empowerment. There are times when we find ourselves in a situation where we can take the safe route or we can jump in to a new experience. I once endured an uncomfortable and socially horrifying event at a professional conference dinner, and I now think of it as an achievement for me. Picture this: I enter a hotel ballroom where only two tables have people sitting at them. One table with ten place-settings is full. The other has eight twenty-year-old Japanese students. With two seats open at that table, I embraced the moment and asked them if I could sit with them. One of the young men said I could. I sat down, and then the other tables filled up around us. I quickly realized I was now sitting at a table with eight Japanese men where only one of them spoke English. I don’t speak any Japanese. I conversed with the one young man about professional topics to find some commonality. While I did, it was clear the rest of the men were commenting about me and laughing at me. They weren’t subtle, and I’m positive I wasn’t being paranoid. I found myself in a situation where I felt I needed to stay gracious and endure. It was a sit-down dinner, and I felt stuck until dessert had been served and cleared. At an opportune moment, I thanked them for welcoming me and jumped to an empty chair at an adjacent table. My guess is the time at that table was only about 30 minutes, but it felt like hours.

Having dinner with men I didn’t know, where we didn’t speak the same language, and where I was being laughed at was a difficult and social disaster. But I hold it up as a benchmark experience. It’s a figurative badge of honor for me to believe that if I can experience that, then I can probably survive any social interaction. It helped me feel a lot more confident, and that’s a huge deal given how shy and insecure I used to be.

This experience helped me build my social and emotional confidence. Trying trapeze helped me with my physical confidence. Both of them reduce the chance that someday I’ll have regrets for what I didn’t try. Any chance we have to push ourselves outside our comfort zone for things that seem intriguing will have a reward. That reward may be for accomplishing it well, and it may be for just enduring and surviving. Either way, we win.

Let Today Be the Start of Something New

Posted on February 9, 2018 by MSAA

By Penelope Conway

I woke up this morning yet again to the reality of multiple sclerosis. Sometimes it feels like I’m stuck in the movie Groundhog Day with Bill Murray. Do you remember that movie? Every morning the alarm clock would go off and the same day would begin…over and over and over.

I don’t know when it started for me, but day after day my life became a blend of naps, computer screens, brain fog moments and doctor appointments. Trying something new just didn’t seem to fit into the mix of things.

From the outside everything in my world looked fine. I had a roof over my head, food in my pantry, an internet connection to get online with and friends both near and far, but what couldn’t be seen were the limitations I began having because of MS and the stresses that came with those limitations.

I failed at everything I tried to do. I had a hard time clipping my own fingernails, couldn’t drive safely even to the corner store, ran into walls that weren’t even in my way, tripped on air, forgot appointments and dropped everything I got my hands on. Talk about depressing…ugh! No matter how hard I tried, I couldn’t find the stop button for the out of control spinning chaos that surrounded me.

If someone approached me with even the thought of getting out and doing something new, at that time in my life I had become so defeated that I couldn’t hear what they were saying and would lash out at them for even suggesting such a thing. All I could see were the things I couldn’t do. Those were not some of my proudest moments, but great friends help you get through the rough patches in life, and thankfully I have great friends.

I call them my Push Coaches. They pushed me to see past my limitations and helped me to see that there is always more than one way to doing something. I discovered that the only real limitations I had were the ones I created for myself and realized that trying new things actually made me happier in life.

As weird as it may sound, stepping out from my daily routine brought excitement to my day and became a welcomed change of pace to the day-in and day-out rut I had gotten myself into.

Sure, my legs may not work well anymore, my hands may fumble with everything I get a hold of, and vertigo may keep me from seeing straight, but those things should never stop me from trying something new. I was determined to try something new at least once a day.

At first I did simple things like taking a different route to the grocery store or wearing crazy colored socks. Those simple changes to my day surprisingly made me smile more. After a short period of time I found myself seeking out other things to try like community art classes and volunteering at the local hospital. I began looking forward to the changes in my day.

It takes a lot of courage to get out there and do something new. If I could be your Push Coach today, I would encourage you to step out from your daily routine and try something new. Change your hair color, try a new tea flavor, join a book of the month club, enroll in cooking classes…just get out there and try something new.

Don’t let MS keep you from having new and exciting adventures in life. Besides, you just might surprise yourself and find a hidden talent you didn’t even know existed.

*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.

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