About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

How the My MS Manager App Helps Manage MS

In 2014, MSAA partnered with app developers @Point of Care to update the My MS Manager mobile app – making it a much better tool to not only help you manage day-to-day life with MS but to also help facilitate shared decision making between you and your doctor.

More than 7,000 people affected by multiple sclerosis currently use the app to record and track their specific MS disease-related information, such as daily activities, fatigue scale records, medications, and other relevant information.  The app organizes this data into useful charts and reports that can easily be shared with your doctor and healthcare team.

Earlier this year, @Point of Care and MSAA surveyed users of the app to see how they were using it and if it was effective in helping manage their MS. This data was presented earlier this month at the 2016 Consortium of Multiple Sclerosis Center (CMSC).

Results from the survey of more than 1,300 active monthly users showed:Capture

  • 77% utilize the app daily or weekly
  • 80% state the app helps them track how well they are doing
  • 78% reported that regular use of the app improved their ability to discus and manage their MS
  • 70% have a sense of improved well-being as a result of using the app
  • 75% reported better management of their fatigue by using the app
  • 73% discuss and share their app records with their doctor to improve MS management
  • 86% reported they are motivated to discuss management of their MS with their doctors as a result of using the app

For more information and to download the My MS Manager app for free, please visit mymsaa.org/mobile.

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Staying Connected, Staying Sane: Social Media & MS

By Jeri Burtchell

I’ve never been very outgoing. In my younger days, I was the one off in the corner at the party quietly taking it all in. Casual conversation terrified me.

So it should come as no surprise that, in real life, I only have a handful of friends and most of them are relatives. But when I was diagnosed with MS in 1999, my microscopic social world seemed to get even smaller. I’d never really taken into account that George, who faithfully bags my groceries, or Shirley, who has cut my hair for years, were friends, too.

During my first MS attack my legs became weak and totally numb. I was suddenly unable to drive. My car – and the mundane socialization of everyday interactions – came to a complete standstill. That’s when I realized how much I depended on the Georges and Shirleys of the world to keep me connected.

When I was first diagnosed, I was trying to care for my infant son while grappling with symptoms that made every diaper change seem like an Olympic event. The combination of raging MS and motherhood left me physically and emotionally exhausted. I kept that to myself most of the time, not wanting to burden my family and friends for fear of driving them away. I didn’t realize at the time just how toxic fear and loneliness can be.

It wasn’t until I got a computer and the blazing speed of dial up internet that my world opened up. The gray clouds had parted and the rays of friendship – or at least camaraderie – were beaming in. I found people online I could relate to. Others with MS who understood exactly what I was going through both physically and mentally because of this disease. I had only ever met one person with my condition prior to passing through this portal to a whole new world.

That was back when online forums and chat rooms were about as social as it got. But I learned a lot about my disease from the internet, and even more about symptom management and treatment options from others like myself. People in search of friendship and a way out of the isolation that chronic illness so often imposes on people.

Then came Facebook and Twitter, two platforms that have exploded in popularity, giving us access to the world and each other in real time. Empowering people living with chronic illness to find each other and share information, experiences, and photos of our cats. Facebook groups are where I go to learn the latest news of cutting-edge science in MS. Hashtags on Twitter give me an easy way to join conversations about health activism or to follow my passion – raising awareness about the importance of clinical trials.

It was through one hashtag, #whyclinicaltrialsmatter, that I met my new friend Janelle, who lives in Australia. Despite a 14 hour time difference, we Skype on Sundays now, brainstorming how together we might make an impact on the world.

If MS is the worst thing that has happened to me, the internet and social media have been among the best. My computer has enabled me to travel the world from my living room, learning, growing, and making new friends. Social media was the conduit, turning me from a frightened and lonely introvert into a health activist championing for change. I’m not saying that’s how it would – or should – work for everyone. Social media is a tool. With it, you can build whatever connections you like that fulfill you and add to your happiness and wellbeing.

I may not be close to everyone I know through Facebook or Twitter, but they all bring value to my life. They enrich me, they educate me, and they shine light into dark places when I begin to feel like my world is closing in. So while my small circle of family and friends in real life are my go-to connections, I appreciate what the Georges and Shirleys of this world mean to my social health. And I cherish my online friends who are never out of reach. They’re always just an app away.

*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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Things To Consider When Searching for the Right MS Treatment

There are many important factors to consider when having conversations with your doctor about your treatment options. The treatment decision for each person is unique and must be addressed individually between you and your healthcare team. Additionally, it’s important to recognize the need to prioritize your issues, questions, and concerns in order to maximize the time with your healthcare team. With so much information to remember, organize, and prioritize, MSAA recognized the need to help frame these important discussions. By doing so, MSAA is able to support patients and their physicians in their S.E.A.R.C.H.™ for the most appropriate therapy for each individual.

Designed as a memory aid, the S.E.A.R.C.H. acronym represents the key areas that should be considered when “searching” for the most appropriate MS treatment. Each letter represents an important topic that must be considered by patients, physicians, and other healthcare and social service professionals. S.E.A.R.C.H. stands for:

search-box-web

MSAA has produced a variety of informational tools to help people maximize their success with S.E.A.R.C.H.™. Current S.E.A.R.C.H.™ tools available for download include:

SEARCH_Cover

For more information about the S.E.A.R.C.H. program and to receive any of these resource items, please visit the S.E.A.R.C.H. for Treatment Options page on our website.

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The Social Butterfly

By Lauren Kovacs

Staying social is a huge obstacle for many people with MS. Even before MS, I was more of a wallflower than a butterfly. Now, I struggle with my inner hermit. I think I might be allergic to people.

Like a butterfly that has two wings for balance, so does a social life with MS. Balance is key to our safe and an even flight into the world. We cannot fly with one wing.

Socializing outside can inject heat into your plans. Just as you pack for a beach trip, pack your MS bag. Be prepared for anything. Good thing my sons are Boy Scouts. Being prepared is their theme.

Planning ahead makes for a smoother flight. Look at the temperature and the humidity level. Know where and how close bathrooms are. For me, heat boils my guts. Bubble, bubble toil and tummy trouble is my summer cheer.

Stay cool however you can if you are outside. Jumping into lake water might be your only option. In my case, flopping off the edge of the boat or being thrown in is my method. Air conditioning is best. Don’t suffer in silence. Butterflies are silent creatures, but let people know when you are too warm.

You need to know your limits. Boating above 80 degrees with high humidity is not an option for me. The lure of delicious KFC chicken and a good time are not enough for me to risk turning into a wet noodle with tummy issues.

Be a social butterfly when you can, on your terms. Butterflies are cold blooded and like the heat. However, like there are thousands of different butterfly species, heat effects us all differently. A wet rag slurring his or her words is no fun to be around. You don’t want to be a hermit, but socialize smart.

If my feet are cool, I feel better. Investing in several pairs of sport/water sandals is a must, for me. If I am neat water, my feet are in it. I always make sure to get a fabulous pedicure. Painting my own toes is just ugly.

It is a struggle to be social in summer. Be a butterfly when it is cooler. Sitting around a fire pit at night toasting marshmallows can be just as fun as boating with friends. Slap on some bug spray and enjoy the night. Butterflies are sleeping, but the owls are out.

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MSAA Joins Spasticity Alliance

Spasticity Alliance

Spasticity, which is an involuntary tightness or stiffness of the muscles, is one of the most common symptoms of multiple sclerosis (MS), affecting approximately 80 percent of those living with the disease. Among other issues, it can be painful and limit movement. Like many MS symptoms, spasticity can have a negative impact on a person’s quality of life.

To increase education surrounding this symptom and treatment strategies, the Multiple Sclerosis Association of America (MSAA) is proud to announce that we have joined with the National Stroke Association, United Spinal Association, United Cerebral Palsy, and the Brain Injury Association of America to form the Spasticity Alliance, found at www.spasticityalliance.org. Together, our goal is to raise awareness about spasticity and help people living with spasticity resume normal daily activities.

This site, launching in conjunction with Spasticity Awareness Week (June 13-19), features a variety of educational resources, multimedia tools, and personal stories of those with different health conditions living with spasticity. The Spasticity Alliance hopes to empower individuals and their family members through these valuable tools, along with offering effective management options.

Spasticity Alliance Learn More

 

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Maintaining a Social Life Despite MS

By Meagan Freeman

Sometimes, I avoid social contact because I fear that I might need a helping hand from my friends due to my MS issues, whether that might be a simple door being held open, or help with bags. This need for assistance keeps me from interacting at times, and I realize that I may not be alone in my feelings. This fear of dependence might keep us from enjoying our friends and family, and this is not something we should ever allow. I detest feeling dependent on others, especially my close friends and family. In fact, one of the first thoughts I had after my MS diagnosis was: “I refuse to be someone’s burden!” 

There are little things that happen each day, my inability to open a jar, my inability to drive at night, my fatigue in the afternoons. Then, there are larger issues such as my ability to earn a living the way I used to, the missed children’s football and soccer games due to heat and flares, and the emotional impact this is having on my husband and children. How do you cope with this loss of independence? It is almost inevitable that this diagnosis goes hand in hand with increased dependence on others.

The MS patients I have met in the last few years are just like me. Have you noticed that? Most of us are very strong, stubborn, independent individuals who feel just as I do. I find myself feeling guilty every time I have to ask for help. Apparently, this is my life lesson, my challenge, my big obstacle to overcome.

As I examine my motivations and feelings more closely, I realize that a lot of these feelings are purely my ego. I gain self-esteem from being independent, and I always have. I have had a constant little voice in my mind throughout my life asking “would I be okay if I lost everyone I know?” My answer was always a resounding: YES! However, now I realize that this was not a healthy mindset. Now, I have much to lose.

In the past, I mistakenly saw my lack of dependence as strength. I thought that because I had nothing to lose, I was untouchable emotionally. No one could ever hurt me if I did not care that much. I needed nothing from anyone, and I liked it that way. Boy, was I wrong.

We need to feel supported by others. It is a basic human need.

The question then, is: How do we do this? How do we accept our small (or large) losses of independence? My answer is that our loss may actually be our gain.

When we ask for help we:

1. Show that we are trusting of another human being.
2. Show that we are in need at the moment, but not forever.
3. Develop a bond with another human being.
4. Form the foundation of a long, connected relationship.
5. Create an opportunity to help someone else in the near future.

How great would that feel? To know without a doubt that your friend/spouse/caregiver/family member will always be there for you, no matter what? This is what I gain when when I lose. I may need a hand opening my next jar, but I have a lifelong bond with my spouse that is strengthened each time I need a hand.

Do not mistake needing help for weakness, or independence for strength. Strength comes from building a strong relationship with those closest to you. This is where our true strength lies. Socializing is an important part of our lives, and MS should never stand in the way of enjoying activities with those we love.

*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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Making Relationships a Priority When I’m Tired and Everything is Important

By Stacie Prada

I didn’t worry about needing to consider my social life as it related to my health before I was diagnosed with MS.  The downside was I also pushed myself beyond my limits and consequently averaged two exacerbations per year. Unknowingly I was adding stress to my body and accelerating my MS disease activity.

Spending time with friends and going on adventures were something I believed I should be able to do, and I didn’t see fatigue as a symptom of something larger and more serious. I still believe I should be able to spend time with friends and experience adventures, but I now weigh and budget the energy it takes with the joy I’ll experience.

The Harvard Study of Adult Development tracked men for 75 years (and counting) and showed that people with good quality relationships with family, friends and community are not just happier than people without good relationships, they are also physically healthier. They experience less memory loss, pain doesn’t affect their mood as much, and they’re generally more resilient.

As such, I see my relationships as imperative to my future health.  Investing time in my social relationships is not optional.  MS symptoms like fatigue can make it more difficult to build and maintain those social connections.  When work, bills, housekeeping and everyday tasks take more energy than a person has, it’s easy to turn down invitations to social gatherings and become isolated.

Rethinking beliefs:

I grew up believing that school came first and only after you get all your work done can you get the reward of playing with friends. As an adult with a chronic condition that affects my energy level, I’ve learned that this approach feels like constant punishment. It also neglects the human need to have more in life than work. I’ll never have enough energy to do enough of the good stuff I want to do after all the work is done.  To compensate, I pace myself on things I need to do, reduce the effort it takes to do them, and save enough energy for the good stuff in life. Among the good things are spending time connecting with other people.

I’ve heard the saying that to be rich, a person can make more or want less. I translate that as to be more energetic, I can make more energy or use less energy. I can do things that recharge my energy level, and I can conserve my energy by reducing the effort it takes to do things.

I boost my energy by exercising, eating nutritious food, being organized, pacing myself and resting. I’ll conserve my energy by streamlining, prioritizing, and delaying or delegating tasks. Doing these things allows me to feel confident that I’m doing the best I can, and it allows me to feel justified in placing a high priority on fun and relationships.

Prioritize Joy and Relationships:

A terrific method to maximize joy with limited energy is to double up on the benefits by combining things that need to be done with social interaction. I’ll go for a walk with a friend to combine exercise, social engagement, time outside getting fresh air, and time not eating or doing other things I should limit.

If I need to do some shopping, I might go with a friend who can drive and help me find what I need. I make sure to allow time to rest before, during, and after the excursion. It often changes the experience from one that can be draining to one that is invigorating and recharging.

I’ll reduce the effort it takes to participate in social events.  I’ll shorten the length of time I’ll stay, but I’ll still show up. Sometimes I choose events that are easier to do and less physically taxing.  Other times I’ll choose events that may require a lot of energy but are rewarding and worth the effort.  If I love it, I make sure I streamline and reduce other activities so that I can have enough energy to do the one that’s a big deal.

The level of effort it takes to engage socially vastly ranges. I can choose how I want to connect at any time based on my level of energy and the relationship I want to maintain:

  • Text
  • Write an email
  • Write a letter or send a card
  • Call them on the phone
  • Skype
  • Meet for coffee, lunch or dinner
  • Go to a movie together
  • Exercise with a buddy: Go for a walk, hike, bike ride, swim, etc.
  • Go to an event: Attend a concert, museum, or dance
  • Plan an adventure
  • Take a trip, visit family, explore new places with someone

It also helps to explain to the people in your life how MS might limit your activities and that you’ll do your best to stay connected. While talking on the phone with my sister one night, we were having a very engaging and fun conversation when I hit the metaphorical wall.  I interrupted her, “I’m sorry, but I need to go now so I can go do nothing.”  We laughed at the time, and I still crack up that I could say that to her without being rude and without her feelings getting hurt.  It’s important and empowering to recognize when to push myself to be socially engaged and when to quit while I’m ahead.

biking break cropped

*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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Staying Social with MS

By Matt Cavallo

Many of you who follow this blog may have noticed that I haven’t posted here in a while. That is due in large part to a massive MS relapse I suffered in March and April. The relapse rendered me non-functional on my right side. I developed drop foot and could barely walk. My face drooped on the right side and I couldn’t squeeze my lips tight enough to drink without dribbling or even swish water while brushing my teeth. Most devastating is that my right arm and hand were completely numb. I couldn’t lift it or feel any sensation other than pins and needles. I also couldn’t pick anything up with my right hand and couldn’t grab a pen, keys or even type.

April and May were spent mostly in recovery, waiting for my functionality to return.  As a result, I wasn’t writing. Writing wasn’t the only thing I was avoiding. I didn’t want my friends to see me while I was in a relapse and recovery mode. I started isolating myself to anyone outside of my house. I missed events at school for my kids and major events like a good friend’s baby shower. (Actually, I briefly attended that one but quickly left due to embarrassment when I dropped a plate of food in the buffet line due to my numb hand). This also took a toll on social interactions at work. I travel quite extensively and all of a sudden I was asked to stay home instead. While it was for the better, it still changed the dynamics of those relationships.

Deep down I knew avoiding everyone wasn’t healthy, but I also didn’t want anyone to see me in my current state. I have spent so much of my life and professional career showing people how well I am managing my MS and to have this severe a relapse really was damaging to the way I felt about myself. While my wife was a rock, I could see that my condition was taking a toll on my two young boys, age 6 and 8. I couldn’t participate in their activities and they had to watch their dad go receive home infusions and struggle with mobility. All of a sudden, I found myself in the throes of depression. I knew I had to take action, but I didn’t know where to start.

The first thing I did was talk to my neurologist. Since I was having a major relapse, my neurologist was seeing me every two weeks to monitor my recovery. I disclosed to him some of the concerns I was having at home, at work and with friends and he suggested that I talk to a psychologist. While I thought it was a good idea, I decided to manage my depression on my own. This was a personal decision, if you are going through something similar, please reach out to someone who could help.

I decided to have a talk with my boss. He completely understood and supported me in my recovery. He appreciated that I was being open and honest with him. He reiterated that I was a valuable member of the team and that my health was the most important thing. He made changes to my schedule to accommodate my disability.

Next, I started having discussions with my friends. I reached out to some close friends to meet me for dinner. I explained everything I was going through and they were very sympathetic. Like my boss, they wanted me to know that they valued me as a person and that my MS was a part of who I was and that it didn’t change the way they thought about me at all.

Finally, I had a talk with my kids. I explained in the best way I could what was going on with my relapse and recovery. They hugged me and told me that despite what I was going through, that I was the best dad in the world. My wife has been my rock through this and I couldn’t have started my social outreach if it hadn’t been for her support and understanding.

Some of you may have a hard time staying social with MS. Maybe you are withdrawing from your family, friends and work, like I was. I just want to let you know that you are not alone. Being diagnosed with MS, losing functionality, dealing with devastating fatigue is a lot for a person to handle. To further complicate it, the people closest to you may not understand what you are going through. Everyone deals with MS in a different way. I just want to let you know that if you are feeling isolated or depressed, there are people out there that can help.

If you are feeling the same way, here are some tips that can help:

  • Talk to your neurologist, or other doctor, about how you are feeling.
  • Tell your friends, family and coworkers what you are experiencing. Even if they don’t completely understand they will want to be involved in your life.
  • Attend a support group meeting, MS webinar or social media MS group. There are opportunities to network with other people living with MS like you and sometimes it is nice to have a conversation with someone who understands.
  • Don’t overdo it. When I first decided to reengage socially, I pushed myself to the limit and wound up being really fatigued. If you set expectations and don’t overdo it, everyone will understand.

This last relapse was a tough one. It made me pull away from the people and the things that I love. I stayed isolated and depressed for a while. I decided to talk to my doctor, friends, coworkers and family about how I was feeling and together, we got through it. If you are having trouble with MS, staying social just might be the support you need.

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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Celebrating Memorial Day

Memorial Day is considered by many as the official start of the summer season. Some of you may be celebrating by going to a cookout with friends and family. Some of you may be heading to the beach to enjoy the sun. And some may just spend the day relaxing. No matter how you enjoy your holiday, it’s important to reflect on and remember what the day represents. Memorial Day is a time to remember those who have served in the US military; those who fought for our country and dedicated their lives to keeping us safe.

On this day of remembrance, MSAA honors all of the men and women who served this country so courageously.

Please note that MSAA’s offices will closed on Monday, May 30th, in observance of Memorial Day. 

Have a safe and enjoyable weekend!

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The 2016 MS Research Update Available Now From MSAA

The 2016 edition of MSAA’s MS Research Update provides a comprehensive overview of research findings on many experimental drugs currently under investigation for the long-term treatment of multiple sclerosis. Also included are new clinical trial data on some of the currently approved disease-modifying therapies, as well as directions for future research in areas such as stem-cell research, biomarkers, genetic studies, and gut microbiota.

Research Update 2016

In addition to the exciting research aimed at relapsing forms of MS, several studies are also looking into the treatment of progressive forms of MS. To assist individuals interested in learning more, trials with progressive forms of MS have been highlighted in bold for quick identification.

This year’s MS Research Update has been published jointly by the Multiple Sclerosis Association of America (MSAA), the Consortium of Multiple Sclerosis Centers (CMSC), and the International Organization of MS Nurses (IOMSN). MSAA greatly appreciates the support from the CMSC and IOMSN to assist with the production of this publication.

Read MSAA’s latest MS Research Update here

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