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.

2016 Improving Lives Benefit Recap

On March 30th, we held our third annual Improving Lives Benefit in Philadelphia, PA. The proceeds of this event benefit the multiple sclerosis community through the programs and services we provide.

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(Pictured above from left: MSAA Board Chair James Anderson, Honoree Susan Russo, Honoree Douglas Franklin, and MSAA President & CEO Gina Murdoch)

We want to truly thank you for your contribution this year – your support and generosity are crucial to our mission of Improving Lives Today. With the help of supporters like you, MSAA was able to raise more than $130,000 – which will make a tremendous difference in the lives of numerous individuals and families with MS.

Please visit our online ad journal for a list of supporters and event sponsors at support.mymsaa.org/adjournal.

Donations for this event are still welcome. You can donate by clicking the button below.

give now

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MSAA and MultipleSclerosis.net Partner for a Live AMA

MSAA recently partnered with MultipleSclerosis.net to co-host a live Facebook “Ask Me Anything”. For one fast-paced hour on March 22nd, everyone from the multiple sclerosis community was invited to ask questions about living with MS and have their questions answered by MSAA Client Services Specialists and MultipleSclerosis.net staff and patient advocates.

Read more about this AMA and find out what topics were discussed at MultipleSclerosis.net.

AMA March 22 2016

A special thanks to our friends at MultipleSclerosis.net for allowing MSAA to be a part of this special MS Awareness Month event and for helping improve lives today for the entire MS community!

 

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Relapses: Not Always Easy to Define or Diagnose

With a majority of MS patients diagnosed with relapsing-remitting MS, the idea of defining and recognizing the signs of relapse becomes very important. This topic can cause both MS patients and neurologists to debate the issue, and some of the lines can be blurry, to say the least. The official definition of a relapse is as follows:

“During a relapse, inflammation is occurring along the nerves and the myelin, causing patients to have a temporary worsening or recurrence of existing symptoms and/or the appearance of new symptoms. This can range from a few days in duration to a few months, followed by a complete or partial recovery (remission). Acute physical symptoms and neurological signs must be present for at least 24 to 48 hours, without any signs of infection or fever, before the treating physician may consider this type of flare-up to be a true relapse.” (MSAA, 2016.)

The new physical signs and symptoms must be separated from a previous relapse by at least one month. As you can see, this definition leaves a great deal of room for interpretation, and every neurologist responds to relapses in very different ways.

Some neurologists treat each relapse with steroids, and do not perform MRIs each time. Steroids are anti-inflammatory medications, almost like “Mega Ibuprofen.” Steroids are very effective at calming the inflammation that causes MS symptoms, but they come with a load of side effects that always need to be considered and weighed. Treatment can be done with IV steroids (Solu-Medrol,) or with oral steroids such as Prednisone. Other neurologists insist on performing MRIs before ordering steroids. Some neurologists prefer to save steroids for only the most severe relapses such as weakness and vision loss, and do not use them for sensory symptoms such as numbness and tingling. It is very much a matter of opinion, and there truly is no “right or wrong” answer in this area.

My own neurologist does not perform MRIs for my relapses, because he does not believe that there is a clinical correlation between the MRI and clinical symptoms. A clean MRI does not necessarily indicate that we are not experiencing relapse, and vice versa. It is also possible that we may be experiencing a pseudoexacerbation. Pseudoexacerbations are temporary increases in symptoms caused by external factors such as heat, which go away after a short period of cooling off. These can also be the result of infections and fever.

I have had RRMS for almost 7 years, and in that time I have experienced very active disease. On a daily basis, I experience new and varying symptoms, ranging from buzzing/tingling/numbness, to burning/pain/spasm, to weakness/vision loss/bladder issues/cognitive issues. These symptoms come and go very unpredictably, and it is truly maddening. The one thing I have learned is that I can’t allow myself to panic if I experience something new, because most often these symptoms with leave as quickly as they appear, within a few hours. However, if they do persist beyond 24-48 hours, make sure you contact your neurologist and get advice, because if there is something you can do, you should! I am always grateful to get my neurologist’s advice in these situations, because it can be very difficult to assess our own symptoms in an unbiased way. Don’t ever hesitate to ask for advice in this area, because it can be very confusing for even the most experienced MS patient!

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

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MS Relapse and Symptom Management Resources

During this final week of MS Awareness Month, MSAA has been focusing on the often overlooked issue of relapse management. MS relapses (or exacerbations) are initially experienced by most people diagnosed with multiple sclerosis. During a relapse, individuals have a temporary worsening or recurrence of existing symptoms or the appearance of new symptoms ranging from a few days in duration to a few months

MSAA’s MS Relapse Resource Center was developed to help you learn, engage, and gain a better understanding of MS relapses. Visit the MS Relapse Resource Center to learn more about relapses, watch a video or webinar, download our relapse brochure, and browse all of the tools available on this comprehensive section of our website. You can also take the new MS Relapse Awareness quiz to test your knowledge!

And if you’re looking for more tools to help better manage your MS and symptoms, check out the features of the My MS Manager app in the video below. To learn more about the app and to download it for free to your mobile phone or tablet, visit mymsaa.org/mobile.

https://youtu.be/5MuAq2l1gB4

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Monitoring MS Symptoms and Trying To Avoid Relapses

By: Stacie Prada

Most of my energy is focused on managing my health with the goal of avoiding relapses and disease progression. Since fatigue tends to be my earliest symptom when I’m headed for a relapse, I monitor my fatigue level and adapt my activities and schedule to treat fatigue seriously.

By the time I was diagnosed with MS, fatigue had become a constant presence in my health. I felt I had no choice but to push through it and only stop when I physically could no longer do any more. Just because I could push through it at times, it came at the price of relapses. In the span of a little more than a year after learning I had MS, I had three exacerbations.

Fortunately my MS is relapse remitting, and my body has responded well to disease modifying medication and lifestyle changes. It’s now been four years since I’ve felt like I had an exacerbation, and my MRI scans support the conclusion that I haven’t had a relapse in that time. Please know that I know I’m lucky this is working for me, and someone else may do everything they can and still have relapses. What I’m doing now may not work forever, but I’ll keep doing it as long as it works for me.

Specifically I listen to my body and take it seriously when my energy level dips. I track my fatigue level and adapt my activities based on that level. When fatigue overwhelms me or I’m having an exacerbation, I prioritize self care above all else. The hard part about self care is that what I think I may need in the moment might not be helpful for me in the long run. A good example is sleeping during the day. Sleeping more than an hour or so during the day usually upsets my sleep hygiene and keeps me up during the night. Once that starts, it can take a week or so to get back on track and sleeping through the night again.

If I’ve hit the point where I realize I need to stay home from work or other activities, I’ll clear my calendar. I’ll prioritize obligations and only do the top of the list based on mandatory items and those that will support me the most. The threshold for a mandatory item is really high at this point, and they’re things that absolutely can’t wait to be done differently.

Following these guidelines helps me make good use of my time for physical health recovery and mental health maintenance:

1. Look into yourself. What do you need most right now? The answer will be different from moment to moment. Check in frequently.
2. Rally the troops on standby. Let people know who care that you’re managing your health and this is a normal part of your life. Promise to let them know if there becomes cause for worry or a need for assistance.
3. Reduce input. Focus on one thing at a time. Limit technology as it can make your eyes tired and tax your brain.
4. Wear comfortable clothes, but still get dressed and groomed if possible. You’re not sick; you’re maintaining your health!
5. Move your body. Stretch, move each part of your body if possible. A slow yoga sun salutation can stretch most muscles in the body, raise your heart rate and lift your spirit. It takes energy, but the physical and emotional reward is tremendous. If you don’t feel up to much movement, just move from the bed to the sofa or a chair. Any movement helps!
6. Don’t move your body. Lay down. Close your eyes. Meditate. Make yourself so comfortable that there is nothing else you’d rather be doing in this moment.
7. Nap only if necessary. Maintaining a regular sleep cycle is important, and napping can disrupt nighttime sleep for days to come.
8. Open the drapes or blinds. Let in the daylight. Rest somewhere other than bed if possible.
9. Stick to regular routines for meals and snacking if possible.
10. Do something productive. Journal, learn something new, research a topic, declutter, organize, write a thank you note, or make a healthy dish. Limit it to the level of your energy, and don’t push too hard. Intersperse these activities with doing absolutely nothing.
11. Be responsible and responsive. Know your work and social commitments so you may cancel or postpone them proactively. Or go in to work for an hour or so and do the absolute minimum that can’t be postponed or canceled. Leaving colleagues and friends scrambling to cover for your commitments will understandably cause frustration and resentment on their part, guilt on yours, and more tension in your life.
12. Seize opportunities to pause. An unscheduled hour or two during your work day may be ideal for taking some personal time off from work. This may help reduce the instances of needing to take a full day off from work and the impact to your colleagues.
13. Congratulate yourself for having the strength and good sense to listen to your body’s signals and adapt your schedule to accommodate them!

I wrote about my Pause Approach during a particularly difficult week years ago, and I still refer to the guidelines I created for myself when I’m feeling vulnerable to an MS relapse. It reduces time and energy spent trying to decide what I should do, and it helps me give myself permission to take care of myself. That’s the best I can do for myself as a person living with MS.

*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/

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Why Do I Cry or Laugh Inappropriately?

As MSAA continues to highlight important MS symptoms during MS Awareness month, this week, Pseudobulbar Affect Awareness Week (week of March 14, 2016), MSAA invites clients to learn about this lesser-known but very impactful symptom by watching a recently produced video featuring Daniel Kantor, MD.

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In this one-on-one interview, MS expert Dr. Daniel Kantor provides valuable insights into understanding PBA and its cause, the differences between PBA and depression and other mood disorders, guidance on discussing PBA with your doctor, and ways to evaluate and treat the condition.

More information, including a survey on PBA can be found at mymsaa.org/pba.

Share your symptom story in the comments below. How has PBA affected your life?

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Living With MS: One (Careful) Step at a Time

By: Jeri Burtchell

I remember my first relapse. Early in 1999 my legs had gradually gone numb from the bottoms of my feet up to my waist over a period of two weeks. By the time I decided it wasn’t just a pinched nerve or something else that would go away on its own, I could barely walk. Every step felt like I was waist-deep in quicksand trying to push my way forward and sinking fast.

That was 17 years ago, and all but a few of my subsequent relapses have also affected my legs. Before I began my current MS therapy in 2007, I would often spend some of my time in a wheelchair during the recovery phase of the more intense relapses.

Although I have only had two mild relapses in the past eight years, it doesn’t mean I am living symptom-free. My legs have betrayed me many times over the course of the years, and my face has become intimately familiar with all sorts of things one’s face shouldn’t see up close — asphalt, dirt, and even kitty litter on one occasion when I tripped and did a faceplant right in the cat box.

So when writing on the perils of walking, I draw from firsthand experience (much to my chagrin).

Besides legs that tire easily, I’ve also developed drop foot. Drop foot is like having your kickstand come down on your bike unexpectedly. You’re tooling along fine when your foot drops mid-stride and causes you to trip over your own two feet, like flying over your handlebars.

So I’m terrified of walking without holding someone’s arm or using a cane, rollator, grocery cart or assistive device — especially when I’m traveling. In my mind my wheels are constantly turning, assessing the terrain, the angle of incline. Judging the surface for the traction I’ll get in the type of shoes I’m wearing. It’s mentally exhausting. I literally cannot walk and chew gum if I want to be competent at either task.

The Doozie of All Faceplants

It was 2010 and my best friend Karen and I decided to take the kids to the county fair. She had her niece and nephew, and I had my youngest boy, Alix, with me. I was wearing sensible walking shoes and told all the kids I’d just watch them ride the rides so I wouldn’t get dizzy and fall. I thought I had covered all my MS safety angles.

It was the perfect day. Laughter and screams of delight filled the blue skies. We ate popcorn and cotton candy, and strolled around until the sun began to set. By that time the kids had ridden every ride except for the Zipper.

The Zipper was halfway across the fairgrounds and as we headed over there for the final ride of the day, I began digging in my purse for the rest of the tickets. With both hands occupied, my feet decided they’d had enough. My left foot dropped, scraping the asphalt pathway we were walking on and I was catapulted into the air.

I landed Tim Tebow style, on one knee for a brief second before launching face first into the pavement. I heard my sunglasses scrape the ground before flying off and skittering away. My initial reaction was “Crap! Those glasses were prescription!”, but I calmed when I remember they were just $5 drug store sunglasses. Then I could focus on what really mattered — the bloody egg-sized bump growing over my left eyebrow.

Alix and Karen came rushing to my side and helped me to a nearby bench, then ran to get some ice. I just kept asking for someone to call an ambulance. With the ice bag pressed firmly to my head, I leaned over my knees trying my best to ward off the nausea that was overcoming me.

Before long I heard a voice.

“Ma’am, can you stand up and get into the vehicle for me?”

I’m thinking to myself, “What kind of an EMT would ask me to do that without even a cursory exam?”

“Can you hear me, ma’am?”

Finally I take the ice from my forehead and look up to see it’s a clown with a big red nose and a huge upturned white grin who is asking me to step into a golf cart. I was certain I’d knocked my brain loose.

After several confusing moments while we discussed the lack of foresight or budget allocated to their first aid preparation, he convinced me an ambulance was waiting at the perimeter gate.

Karen followed behind with all the kids in tow as we rushed to the hospital.

They ran a battery of tests that included everything but shaking a Magic 8 Ball. In the end, all signs pointed to a concussion. I have never felt so sick in all my life. I had two black eyes and a huge knot on my head. When I saw the eye doctor a few days later, he speculated that my sunglasses saved me from breaking my orbital bones.

I managed to come away from that experience without any residual physical effects, but one thing is certain: I had developed a newfound fear of walking. I never leave town without my cane, and if I go to a store for a loaf of bread I’ll be pushing it around in a grocery cart. It’s not that I need an assistive device to be upright, I just can’t trust my feet.

I used to fear balance issues as my body’s greatest source of betrayal, but drop foot has taken its place. When I begin to tire or know I will have to walk for more than 25 feet unaided, I deliberately high step, figuring if I pick my legs way up in the air, my toes have less chance of tripping me up. While it might look silly, I believe it has saved me from kissing the concrete on numerous occasions.

If it gets worse I think I’ll look into a brace, but for now I’m taking MS one (careful) step at a time.

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

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Just Take It One Step at a Time- Part 2

By: Amy McKay, M Ed, CSCS, CES

Revisit Part 1 of this two part series by Amy McKay, certified Strength and Conditioning Specialist providing “useful tips on how to improve each part of every step you take”.

FLEXIBILITY

Let’s face it, as we age our bodies lose their flexibility and elasticity. Before you know it, what used to just be a stretch, is now a strain! Flexibility is known as the quality of bending without breaking. As it pertains to walking, flexibility of the knees, ankles, feet, and toes is critical to a successful stride. Here are a few things to try to keep your feet feeling sweet.

  • Spread your toes out! Our toes were designed to move freely and independently. Purchase shoes that allow your toes to wiggle while they work. Choose footwear that has a sturdy sole and provides cushion and support while you walk. When you shop for shoes, shop late in the day. Our feet tend to swell up to a half size as the day goes on. And, walk around in the shoes in the store at least 10 minutes before you make your purchase.
  • Getting a proper pedicure is a necessity, not just a luxury. Proper care of your toenails and calluses is imperative. Overgrown or ingrown toenails, thick calluses, or blisters can make walking painful and very inefficient.
  • When it comes to your ankles, the best way to keep them mobile is to think about tapping your toes up and down, pointing and flexing your feet, and making imaginary circles in both directions. Having adequate ankle mobility will help prevent drop foot and ensure that the traveling foot lands right where you had planned.

TORSO STABILITY

Torso stability is a vital factor in taking a successful stroll. Without a stable torso, the low back carries more than its share of body weight causing pain and discomfort. Stability is defined as having the strength to stand or endure. Experiment with the following activities to add strength and stamina to your torso.

  • Do squats every day. Squats will strengthen all of the muscles surrounding the torso. The added torso strength will help the hip, knee, and ankle joints function more efficiently with each step. A squat is an exercise that can be modified to ANY fitness level. Simply start off by sitting down in a sturdy chair and then standing back up! Feel free to use the arms of the chair or push your hands against your thighs to help you. Repeat this 5 to 10 times in a row. Once you have successfully mastered that, try repeating the same thing without using your arms to do any of the heavy lifting! The next step would be to pretend like you are sitting in an “invisible chair” behind you. Begin your daily squat program by doing just 5 to 10 squats per day and progress from there. This movement is one of the most fundamental skills for the human body.
  • Practice perfect posture. We live a world that has us in a forward flexed position. Activities such as using your phone, tablet, computer, and even driving makeup a large portion of our day. The best way to counteract the forward flex position, is to realign your spine starting from the top. Use your “ESP” to coach yourself with these 3 quick verbal cues:
    1. Extend the crown of your head directly to the sky.
    2. Squeeze your shoulder blades together.
    3. Pretend like you are zipping a jacket up!

Tying it up…

So, whether you are stepping out on the town or still shuffling through the grocery store, building efficient walking patterns can allow your body to move more with less effort. These new ideas about the complex skill of walking may allow you to move throughout your day with less fatigue and more energy to do the things you enjoy. This could add to your overall quality of life and improve your life today. Keep learning and keep practicing these exercises. So, put a smile on your face and just take it one step at a time.

*Amy McKay is an Assistant Professor at Tarleton State University in Stephenville, Texas. She is a certified Strength and Conditioning Specialist for the National Strength and Conditioning Association, a certified Corrective Exercise Specialist with the National Association of Sports Medicine, a certified Sports Nutritionist and Specialist in Exercise Therapies with the International Sports Science Association, a certified Personal Trainer with the Aerobics and Fitness Association of America, and a Youth Nutrition Specialist with the International Youth Conditioning Association. She is an avid marathoner and tri-athlete. Amy believes that modifying exercise is necessary for everyone and strives to “find a way” for all to be involved. Her personal motto is to make every day “the best day ever!”

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Just Take It One Step at a Time- Part 1

By: Amy McKay, M Ed, CSCS, CES

When was the last time that you actually stopped and thought about the process of walking? Did you know that you could actually improve the efficiency and effectiveness of each step you take with a few simple changes? Put your best foot forward as we explore ways to create a great gait pattern.

Efficient walking starts with your brain. Begin to start thinking about walking. Walking is a complex motor skill. It involves balance, coordination, flexibility, and torso stability. As we stop and study each of these topics, I will provide a few useful tips on how to improve each part of every step you take.

BALANCE

Balance is a very important part of walking. With each step taken, there is a brief moment of balance on the foot that is in contact with the ground. Balance is a skill related component of fitness and can be improved with practice. Balance is defined as an even distribution of weight enabling someone or something to remain upright and steady. When balance skills are compromised, the typical compensation is to shuffle the feet, instead of actually placing one foot in front of the other.

Try adding this simple exercise to your daily life to improve your balance.

  • Practice standing on one foot while brushing your teeth, drying your hair, or working at your kitchen sink. The great thing about practicing this skill while in these locations is that you have the counter right in front of your to provide safety and support when needed. Simply start with 5 to 10 seconds at a time and build up from there. You will find that you are more successful on one side than the other, so be sure to practice BOTH sides.

COORDINATION

Are you one of those people that can walk and chew bubble gum at the same time? That seems to be our society’s check point for coordination. Coordination is defined as the organization of the different elements of a complex body or activity that enables them to work together effectively. Our bodies are complex machines that are made for movement. When they are properly tuned up, all of our daily activities, including walking, happen with less effort and more ease. Activities that cross the midline of the body have been shown to enhance coordination skills. Add these activities to daily routine.

  • Alternate reaching your right hand all the way across the left side of your body, then your left hand across right side. Repeat this movement 10-20 times each side per day. This not only enhances coordination, but also is great for the range of motion in your shoulders.
  • While standing with support nearby, alternate touching your right elbow to your left knee followed by your left elbow to your right knee. Start with just 3 or 4 repetitions on each side and then add more as you begin to feel stronger. This activity can help with your balance, coordination, and can provide stability and flexibility training for your spine.
  • Shake things up and take a dance class or just crank up your favorite tunes and move to the beat. Dancing is a great way to enhance your coordination, improve cognitive function, and is a FUN way to get some exercise!

Check back on Wednesday, March 9th for part 2 of Amy’s Just Take It One Step at a Time post.

*Amy McKay is an Assistant Professor at Tarleton State University in Stephenville, Texas. She is a certified Strength and Conditioning Specialist for the National Strength and Conditioning Association, a certified Corrective Exercise Specialist with the National Association of Sports Medicine, a certified Sports Nutritionist and Specialist in Exercise Therapies with the International Sports Science Association, a certified Personal Trainer with the Aerobics and Fitness Association of America, and a Youth Nutrition Specialist with the International Youth Conditioning Association. She is an avid marathoner and tri-athlete. Amy believes that modifying exercise is necessary for everyone and strives to “find a way” for all to be involved. Her personal motto is to make every day “the best day ever!”

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MSAA Celebrates MS Awareness Month

While every day here at MSAA we strive to improve lives today through vital services and support; March is a very important time of the year. MSAA is proud to launch the March is MS Awareness Month campaign. Throughout the month of March, MSAA will heighten awareness around MS symptom and relapse management, dedicating each week to a particular MS symptom or issue.

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Walking Awareness and MS (week of March 7th) – featuring comprehensive information on walking and MS with a newly developed awareness survey, a video provided by Acorda Therapeutics, blog posts by our guest bloggers, and social media posts. Content posted to www.mymsaa.org/walking.

Pseudobulbar Affect (PBA) Awareness (week of March 14th) – featuring MSAA’s new MSi video on PBA with Dr. Kantor, a patient-focused awareness survey, blog and social media posts. Content posted to www.mymsaa.org/pba.

MS Relapse Awareness (week of March 21st) in collaboration with the Multiple Sclerosis Foundation – featuring a newly developed Relapse Awareness Quiz, an updated version of our Understanding and Treating MS Relapses brochure, and blog and social media posts. Content posted to our MS Relapse Resource Center – www.relapses.mymsaa.org.

Have you visited our new website yet?

MSAA recently unveiled our newly redesigned website, MyMSAA.org. With a clean, mobile-friendly design, the new mymsaa.org features enhanced graphic images, links to important topics including MS Symptoms, Treatments, and information specifically for the Newly Diagnosed.

Check out all of the enhancements and features at mymsaa.org and let us know your thoughts!

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