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.

New Features Available Now on MSAA’s My MS Manager App

My MS Manager appCheck out the updated features on My MS Manager – MSAA’s mobile phone application, provided free of charge to individuals with MS and their care partners to use on your iPhone, iPad, iPod Touch or your Android mobile device.

My MS Manager, the first-of-its kind app created by MSAA to help individuals with multiple sclerosis better manage their disease, now offers new features – including a way to measure changes in fatigue and a way to connect and share information with your physician!

This free tool allows you to input and store important medical information, track symptoms and disease activity, and generate charts and reports across various metrics such as treatments, moods, symptoms, and more.

Other HIPAA-compliant features include:

  • private reminder settings
  • links to MSAA’s educational materials
  • a fatigue scale
  • **EXCLUSIVE to My MS Manager** – the ability to connect to physicians and members of your healthcare team via the app to share your progress and reports securely and as needed.

“In this world that is increasingly powered by all-things-digital, efficiency and clarity are at the top of my list. Having been diagnosed with MS as a 23-year-old, I wanted to do my best to take control of my health. Having a tool to help me do this has been extremely helpful. The Multiple Sclerosis Association of America’s mobile app, My MS Manager, allows me to not only keep track of all of my notes, meds, doctor info, labs, and journals, but also gives me access to local resources, current MS research updates, and so much more. I can now manage my disease with an incredible amount of clarity and efficiency – things I have not had before. A huge thank you to MSAA, for giving me the tools to be in control.” – Anna Webber, My MS Manager App Ambassador

My MS Manager is now available to everyone in the MS community on your Apple or Android mobile devices.

Google Play Store

Apple App Store

If you need assistance with the My MS Manager app, please call (800) 772-8277, ext. 178 or email us at apphelp@mymsaa.org.

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Wellness: The Importance of the Mind

By: Meagan Freeman

When I was diagnosed with MS in 2009, I never would have imagined that my greatest challenge would be overcoming my own demotivation and fatigue. My struggle over the past six years has involved many physical challenges, but I have found that my mind can truly pose the greatest threat to my own wellness.

I have never been diagnosed with depression, but I do cope with extreme fatigue, and the symptoms can be very similar. It is often confusing for patients to determine whether they suffer from a psychological, MS related depression, or rather the well-known phenomenon of MS fatigue, known as lassitude.

I have made many lifestyle changes since my diagnosis, including adopting a plant-based diet rich in fruits and vegetables, exercising regularly, and challenging my cognitive skills with writing and academics. According to my most recent blood pressure readings (I also have hypertension,) and my cholesterol panel, I am incredibly healthy from a cardiovascular standpoint. However, the one issue that remains my greatest obstacle is fatigue. As I sit on the couch, my life often swirls around me at the speed of light.

I sit, and my family moves around the house, carrying on with a normal day. Children play, my husband bustles around cleaning, picking up toys. Friends come and go, family members chatter on the phone. Children are getting ready for school, a trip to the park, or horseback riding lessons. All the while, I sit.

It is a feeling like no other, this inability to get up and take part in my life. This experience of being an observer, rather than an active participant. My mind wants desperately to get up, to join in and be there instead of here. My mind urges me, “Get up! You can do it! Let’s go! Don’t miss out!” But my body doesn’t listen. My life feels like a movie at certain moments. It is as if I am sitting in a theater seat, watching images on a screen. The only difference is, the scenes passing by in front of me are my life. Laughing, running, spinning, jumping children fly past me, friends call, invitations are declined. And my internal voices do battle. The mind vs. the body: The epic saga continues.

How do we cope with MS fatigue? Are there any good answers? Often, we ask ourselves whether we are just being lazy, or could we be clinically depressed? The answer is typically, neither! 80% of MS patients suffer from fatigue, and it isn’t your average, everyday exhaustion. It is specific to MS, and incredibly debilitating.

What can we do to manage this fatigue? First and foremost, see your provider. Make sure you aren’t missing a treatable reason for your fatigue, such as a thyroid disorder, sleep apnea, or anemia. Once those causes are ruled out, our options (as always) are quite limited. Physical therapy might be helpful. Sleep regulation is incredibly important, and should be addressed first. Stress reduction and relaxation techniques may be helpful. Avoiding extreme heat is a must, as heat may dramatically worsen fatigue. In addition, several medications are approved for fatigue management with MS.

Most importantly, make sure you are taking care of yourself in all the classic ways. Adequate hydration, nutrition, and rest are essential parts of your daily routine as an MS patient. Avoiding excessive caffeine and alcohol, avoiding smoking, and getting as much activity as possible are all effective ways to manage MS fatigue. Though it may seem counter-intuitive, getting some degree of physical activity can actually increase your energy, even if it is the last thing on Earth you feel like doing. Getting up and off that couch and taking in some sunlight can elevate your mood.

Consider inviting friends to visit you at your home, if you don’t have the strength to go visit them. Being completely honest is essential. Let your friends and family know the degree of your struggle with fatigue, and give them the opportunity to understand. It is important not to isolate and withdraw from friends and family due to fatigue. We often jump to the conclusion that “no one gets it. No one will ever understand.” Maybe they will if you give them a chance. Educating our family and friends about our illness is our responsibility, as patients. We should offer as much advice and information as possible to those in our circle. They will likely be happy to help if they can!

My own fatigue continues to be an ongoing battle, but with my Neurologist’s help, I am learning to manage my symptoms more effectively. I believe the most important thing to remember is that we are not alone. Many of our symptoms are entirely treatable, but we can never hope to see improvement until we reach out and ask for help.

*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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Adapting to My Limitations and Doing a Marathon Anyway

By: Stacie Prada

I walked a full marathon. I didn’t think I’d ever be able to say that. Before I was diagnosed with MS, doing a marathon was something out there that I thought I would do someday. After my MS diagnosis it seemed like a goal I would have to let go.

It’s all the more amazing and rewarding to me now since I wrote in my Life List post I had accepted that doing a marathon was something I wouldn’t do in this life. I thought marathons required that people run them, and my MS symptoms cause too many injuries when I run long distances. Surely 26.2 miles was out of the question now that I had MS.

Drop foot caused me to run off kilter and consistently brought on hip pain and injuries that took months of physical therapy to heal. When I complained that jogging hurt me but I wanted to do running events, my physical therapist responded, “You need to decide if it’s worth it.” She was wise to let me know that it was a choice I was making. It was then that I realized running long distances wasn’t wise for me anymore.

I decided to focus on other activities I enjoyed including walking and hiking. It was after a ten mile walk that a friend suggested I do the Portland Marathon where they encourage walkers to participate. I was immediately excited and signed up in January for the October marathon. Two friends also signed up, and we put together and followed a marathon training program that would allow us to not only do the marathon, but train in a way that would have us prepared and able to enjoy the entire adventure.

We usually upped our distance one mile per week. With 36 weeks to train, we had plenty of time to prepare. Internet sources educated us on how to train, and that was terrific. I’m sure we would have over trained if we’d come up with our own training schedule. We walked one long walk per week and did two to three other workouts each week of yoga, walking or gym cardio and weights. Sometimes we were ambitious and would increase our miles more than one mile per week. But we checked in with ourselves and each other throughout the journey to make sure we weren’t pushing ourselves too hard. The threat of getting sick or injured was enough to keep our drive in check.

We did have some physical challenges to address along the way. New shoes and socks, icing our ankles and feet after walking, coating our feet with Vaseline before walking, and staying hydrated helped us perform beyond our hopes. We started our training hoping to finish the marathon in less than the eight hours required. By race day we felt optimistic that maybe we could finish in six and a half hours. By the end of the marathon we were ecstatic to finish 20 minutes earlier than we ever could have hoped!

I chalk our success up to pacing ourselves, allowing enough time to train, making steady progress, paying attention to our bodies’ needs, and sharing the journey with good friends. We promised ourselves we would make sure we had fun every step of the way, and we did!

It’s empowering to accomplish goals even when I do them differently than I’d imagined. MS is full of adjusting expectations for the future, and modifying how I do something hasn’t diminished the enjoyment and sense of accomplishment. It’s made me appreciate the experience all the more.

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MSAA Teams Up with Wines ‘Til Sold Out

WTSO fundraiser

Join MSAA and Wines ‘Til Sold Out (WTSO.com) on Tuesday October 27th for an exciting online wine sale to benefit MSAA in support of the free programs and services offered to the entire MS community.

On October 27th from 8 AM – 8 PM ET, WTSO will donate $1 for every bottle sold to MSAA during their ‘Member Favorites’ Marathon which features customer favorites and the most requested wine deals, all up to 70% off (with free shipping options available). WTSO Marathons are fast-paced days that include upwards of 60 wine deals in one day, each offered one at a time until sold out, with a new deal every 20 minutes or sooner if the previous deal has sold out.

Becoming a member of WTSO.com is free and easy. To sign up and receive reminders about this fundraiser, please visit WTSO.com/invite/msaa.

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Putting Myself Out There

By: Stacie Prada 

Having MS has frustrated me, limited me, knocked me down for a bit, and eventually released me from fears I had that kept me from doing certain things and from becoming someone I want to be.

Since being diagnosed with MS in 2008, things I have done for the first time include: yoga, trapeze, traveling abroad, ending a long term marriage, running for and being elected to public office, walking a marathon, and writing. I’m sure there are more, but thinking through my feelings and putting them to paper has been extremely therapeutic for me.

I figure I put so much effort into learning about myself, MS, and how I can live a fulfilling life that maybe sharing my experiences, inspirations and perspective might be helpful to someone else. Or at least it’s something I can refer to when I need to be reminded of things that helped me in the past that I’ve forgotten.

I’m inspired and motivated by people and ideas every day. Hearing what other people with MS have experienced and overcome helps me ease fears and build confidence that I will be able to deal with whatever cards life deals me. And while I put a lot of effort into my health by eating well, exercising, building relationships, sleeping, and contributing to society, I know that I’m not protected from MS disease progression. If MS limits my mobility and my ability to do things in the future, I want to feel secure in knowing I did all I could to slow my disease progression and build a safety net. In the end I believe it will be my attitude that dictates how well I adjust to any difficulties I may have.

It’s with this motivation that I hope to periodically share blog posts in this forum. My name is Stacie, I’m technically a middle aged woman although I feel young, I work full time, I have MS, and I generally feel good about life. Thank you for taking the time to read this!

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Happy 50th Anniversary – Medicare Open Enrollment Begins

This year marks the 50th anniversary of President Lyndon B. Johnson signing into law the Medicare program. Since its inception July 30, 1965 the program has seen many changes. Medicare and Medicaid started as basic insurance programs for Americans who didn’t have health insurance, the programs have changed over the years to provide more and more Americans with access to quality and affordable health care.

Open Enrollment

You don’t need to sign up for Medicare each year. However, each year you have a chance to review your coverage and make changes. Most Medicare beneficiaries should receive an Annual Notice of Change (ANOC) and Evidence of Coverage (EOC) from their existing Medicare Advantage and Medicare Part D plan providers by September 30th.

Individual Medicare plans can change each year—things like cost, coverage, and which providers and pharmacies are in network. So it is important, that each year during the open enrollment period you dedicate some time to review your plan.

During this open enrollment period you can make changes to various aspects of your coverage.

  • You can switch from Original Medicare to Medicare Advantage, or vice versa.
  •  You can also switch from one Medicare Advantage plan to another; or from one Medicare Part D (prescription drug) plan to another.
  • And if you didn’t enroll in a Medicare Part D plan when you were first eligible, you can do so during the general open enrollment.

Get Started

Visit the Medicare Plan Finder at Medicare.gov/find-a-plan. With the Medicare Plan Finder, you can compare plans and learn about the coverage, benefits, and estimated costs for each plan. For further information and questions, contact Medicare directly at 1-800-MEDICARE (1-800-633-4227).

Want to learn more about Medicare, or the different types of coverage options available? MSAA’s My Health Insurance Guide provides comprehensive, easy-to-follow information and resources for the MS community about Medicare and Medicare Advantage plans.

Need additional help?

Get personalized counseling and assistance in choosing coverage. State Health Insurance Assistance Program (SHIP) provide free, in depth, one-on-one insurance counseling and assistance. Visit https://www.shiptacenter.org/ to locate the office nearest you.

Sources:
http://blog.medicare.gov/2015/07/27/medicare-and-medicaid-50-year-anniversary/
https://www.medicare.gov/Pubs/pdf/10050.pdf

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MSAA Motivator: Wellness in Multiple Sclerosis

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MSAA’s latest edition of The Motivator features an updated design, with printed and digital versions available.

Included in this issue of The Motivator:

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  • Cover Story – Wellness in MS: How good food choices, exercise, correct posture, and other lifestyle changes can have a positive influence on your overall health.
  • Up Front – MSAA’s president and CEO gives a special message to readers, reflecting on his 16 years of service to MSAA.
  • Research News – Updates on recent news items occurring since the last issue of The Motivator are featured.
  • Program Notes – MSAA’s new aquatic fitness DVD, plus My Health Insurance Guide, are both highlighted.

Throughout the month of October, aligned with the release of latest edition of The Motivator, MSAA Client Services staff and guest bloggers will continue to highlight the impact that a wellness strategy can have on an individual with MS. Discussing topics such as diet and exercise, mental health, and social wellness, we hope to continue the conversation about wellness and learn from each other’s experiences.

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Highlights from MSAA’s Annual Golf Tournament

On Monday, September 28th, MSAA hosted the annual Gary Wallace Memorial Golf Tournament at Little Mill Country Club in Marlton, NJ. The golf tournament is held in memory of Gary Wallace, MSAA’s former Vice President of Finance & Administration, who devoted himself to improving the lives of people living with MS.

It was a full day of fun and friendly competition, all in the name of fulfilling MSAA’s mission of improving lives today for the entire MS community.

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We would like to thank all of our supporters, sponsors, volunteers, and everyone who came out to the event.

Thank you!!

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No Routine Schedule with MS

By: Matt Cavallo 

There has been nothing routine about my schedule lately. Between traveling for work, the kids going back to school and everyday stress of life with multiple sclerosis, I am wiped out. My last flight was particularly exhausting. It seems that every time I travel, the airlines come up with new ways to delay my flights. This past one last week was a flat tire. Yes, a flat tire delayed me for two hours on a one hour flight to Santa Barbara.

That is the thing about life. There is relatively low predictability. Those of us living with MS love a predictable schedule, but the truth is that circumstances outside our control force us to adjust on the fly. The problem is that if we don’t keep up, we get left behind. So how do I manage to keep up with a busy schedule while dealing with a chronically fatiguing disease? Here are some tips that I use to make my hectic schedule a little more manageable.

3 Tips for Managing a Schedule with Multiple Sclerosis

1. Prioritize and Plan Ahead – Prioritize neurology, other doctor appointments or medical procedures ahead of time. There is limited availability for these medical services and spots fill up fast. If you know that you need a neurology follow-up, MRI, etc., plan six months ahead of time and book it. This will reduce the stress of trying to get an appointment at the last minute, which may cause the extra stress of having to juggle other items on your calendar.

2. Keep a Calendar – Whether electronic or paper, you need to have access to calendar reminders when planning your schedule. I cannot tell you how many times I have double booked myself because I did not refer to the calendar in my pocket. Using today’s technology will allow you to be prompted for important events or forecast possible conflicts. With MS you have enough to worry about, let the calendar manage your time, so you don’t have too. I know once I did, my stress of wondering what I had next was gone.

3. Let Go of what you can’t Control – This is perhaps the hardest lessen to learn. So you have prioritized, planned ahead and calendared an event. Then something unexpectedly flares up derailing your schedule. This is OK. It is bound to happen. Last week, there was nothing I could do about the flat tire on the plane. Some in the crowd went to customer service. Others went up to the gate agent. Most waited in some line for two hours asking questions about an event they couldn’t control. I sat in my seat and waited for the tire to be changed. After all, I would rather be a little late then try to land on a flat tire.

Living with multiple sclerosis is tough. It can be a chronically fatiguing condition that makes you feel like you are constantly trying to catch up with those around you. Don’t let your schedule contribute to your MS fatigue. Use my 3 tips for managing a schedule with multiple sclerosis. Remember to prioritize and plan ahead, keep an up-to-date calendar and let go of what you can’t control and you will find the everyday stress of keeping your time melt away.

*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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MS and Senior Year Stress: Helping Your Child Leave High School for College

By: Jeri Burtchell

My son came into this world two months premature, had the wrinkled skin of a little old man, and his head fit snuggly in my tightly cupped palm. I just prayed he would live to come home, too scared for our future to think about “prepaid college plans” or anything.

Seventeen years later, my preemie who once weighed 3 pounds is officially a senior. We weathered many challenges along the way, between my MS and his complications from being born too soon. But we’ve made it to this point and I couldn’t be more proud — or terrified.

He has his sights set on college and I’m kicking myself for never starting a prepaid college fund. Besides money, there’s a lot of planning involved, it turns out.

Starting with the senior photo shoot it seems like the wheels have been in motion and I’m falling off the back end of the wagon trying to keep up. There is so much to do!

He enrolled in two Advanced Placement (AP) courses that would look great on his transcripts. We followed that up with a trip to the guidance office where I thought we’d have a single session and be all set.

I think the moment I began fearing a possible MS relapse was at the end of that initial–and completely overwhelming–meeting. She let us know we were playing catch-up at this point. Who knew that college planning begins in the womb?

That prepaid college fund? Probably would have been a good idea. After all, how much can I realistically expect to save between now and next fall? The counselor nixed my idea of spending every dime I get on Lotto tickets in hopes of affording tuition. She said that’s not the best plan.

No, the best plan involves lots of research and determination on my part evidently. My son is bogged down with AP homework so I’m scouring the internet for scholarship opportunities. Thanks to MS for the insomnia I suffer, I have plenty of free time between 1 and 5 AM to read websites and figure out if they are scams or legitimate awards worth applying for.

There really is a scholarship opportunity for left-handers, for example, as well as for seniors who opt to construct their prom attire completely from Duct Tape. Aside from the unusual ones, however, did you know your children can qualify for scholarships if their parent has MS? My son even can even apply for one related to his asthma.

So what can I share with you to help pave the way for your talented child to be able to go to college? Here is my list of things it would have been helpful to know prior to senior year. Hopefully this will relieve some of the relapse-provoking stress, and prepare you for the exciting possibilities that lie ahead.

● Take Honors or AP courses as early and often as you can, striving for academic excellence. (My mantra his entire life was “If you ever expect to go to college you’re going to need a scholarship because I can’t pay for it,”–and we’re learning how right I was.)
● Go to College Night at the high school starting in Freshman year, and learn something each time you go. There are goals you can be achieving along the way, helping your roll out your plan.
● Make a short list of the colleges you’d like to attend and focus on finding out all of the requirements and deadlines for applying. You’ll want to keep track of:
○ Application deadline for the following fall. (I was shocked to see a lot of schools want my son’s submission by November 1 of this year!)
○ SAT, ACT, and GPA minimum requirements
○ In-state vs out-of-state tuitions and housing
● Your guidance counselor may be able to give you fee waiver passes to retake the SAT and/or ACT tests. The retakes do not cancel out previous test scores so don’t worry that you’ll do worse. Your best scores count!
● Search everywhere for scholarships to apply for. Even if it’s small, they can add up fast. Wells Fargo website has a database you can search for scholarships. You have to sign up and fill out a profile and they research the possibilities for you.

In all of your planning, parents, don’t forget about yourself. Your child, like mine, is probably a big help around the house and has been acting as a caregiver to some extent. You may not even realize how great a role they’ve been playing until your nest is empty, unless you have others still at home.

Be sure to create your own plan for how you will connect with your child while they are away, who will take over their caregiver or household responsibilities, and make the transition as smooth as possible.

This should be a time of joy and celebration (I keep reminding myself) so do all you can to prevent the stress that comes with it from sending you spiraling into a relapse. Keep cool, start early, stay focus, and have a plan.

And on the last day of school, toss your own hat in the air–you’ve earned it! Congrats!

*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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