How the My MS Manager App Helps Manage MS

Posted on June 24, 2016 by MSAA

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.

MS Relapse and Symptom Management Resources

Posted on March 23, 2016 by MSAA

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.

A Message from Our New President & CEO – Gina Ross Murdoch

Posted on January 13, 2016 by MSAA

Welcome to 2016! As we begin a new year, I am thrilled and honored to be assuming the role of President and Chief Executive Officer of our Multiple Sclerosis Association of America. My fourteen years with the National MS Society galvanized my dedication to all affected by MS. I join our organization building on the great foundation established by Doug Franklin, Bob Rapp, the Board of Directors, volunteers, and the entire staff. These visionary leaders have made a significant impact on the lives of those affected by multiple sclerosis. Through their dedication to improving lives, so many of our members have received much-needed equipment, critical MRIs, cutting-edge technology via our My MS Manager mobile app, and invaluable information through our programs. I would be remiss if I didn’t start off my first post with a heartfelt thank you for all that they have done.

Going into this new year, we face challenges and new opportunities. The worlds of healthcare, insurance and research are constantly changing. Despite this varied landscape, we at YOUR MSAA remain singular in our focus to improve lives. Although this is our singular focus, it is not our singular responsibility. I encourage each and every one of you to get involved in MSAA activities and help us expand the word about how we are here to help. Multiple sclerosis is unpredictable. I have seen that all too well in my many years engaged with our community. I have seen some do well on our ever growing list of disease-modifying treatments. I have also seen those who have lost so much to MS and the overwhelming effects of that diagnosis on their families.

Now as we face the challenges and opportunities of a new year, I invite you to be an advocate for MSAA, for yourself and for those still to be diagnosed. We have made an impact but every week 200 more people need our help, need our information, need our support. Collectively, our MSAA members are in the hundreds of thousands – a very powerful agent for improving lives. My goal is to work collectively with staff, board members, volunteers, and our partners to continue our key programs while also investigating what new services our members need tomorrow. Together, we can take the good work of MSAA to so many more. Together, we can touch more lives and IMPROVE more lives. You will hear me a lot during this year – where we are, what we are doing and how YOU can be a part of our next chapter. I encourage you to reach out to me and let us know about opportunities in your town, your state and your region. A constant flow of information leads to quicker and better ideas.

I thank you in advance for your involvement, your passion, your feedback, and your dedication to Improving Lives and Planning for Tomorrow.

Happy New Year,

Gina Ross Murdoch
MSAA President & CEO

Tips For Managing MS Fatigue

Posted on November 11, 2015 by MSAA

Fatigue is one of the many symptoms of multiple sclerosis. It affects the majority of individuals with an MS diagnosis, and can be challenging to manage. According to Can Do MS, there are many helpful and practical things you can do to help boost your energy and improve your daily activities.

Can Do MS sponsored a webinar in October titled, “Tired of Being Tired? Tips, Tools & Techniques to Keep You Going.” This webinar can be watched on the Archived Webinar section of their website.

To summarize, Can Do MS recommends the “4 P’s” as a potential solution for managing fatigue:

Planning: Consider using a day planner or phone app to help manage what you may have going on. This could help you track doctors’ appointments, medication regiment, meal planning and shopping trips, and ensure you do not try to do too much on any one specific day.
Prioritizing: If you are feeling tired on a particular day, decide what is important or must get accomplished and what can be put off for another day. Do those things that need to get done and give yourself permission to push the other tasks off for a day when you have more energy.
Pacing: This strategy will help prevent you from feeling overwhelmed when at work. If you expect a task to take an hour, don’t pressure yourself to get it done in an hour. Instead, give yourself an hour and a half and take a ten minute break for every 20 minutes of work.
Positioning: This involves rethinking the location of physical things in your life to make your daily activities simpler and more efficient. One example of this would be placing everyday cooking utensils in a convenient, easy to reach place in the kitchen so you do not have to exert yourself every time you reach for them. Making simple adjustments may help you save some energy for use at other times throughout the day.

In addition to managing your fatigue, it might also be a good idea to track your activity to determine what is causing you the most fatigue. This better understanding of your fatigue could help you modify your activities and help you conserve energy throughout the day. MSAA’s free mobile app – My MS Manager, now has a newly added fatigue scale to help you track and measure your fatigue. The app also allows you to connect to physicians and other members of your care team via the app to securely share your progress and reports. Click here to learn more and download the free app.

By following the “4 P’s” and tracking your fatigue, you will hopefully have a better understanding of what activities affect you the most and an easy tool to you manage your daily fatigue better.

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

Posted on November 9, 2015 by MSAA

Check 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.

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

Self-Advocacy for People with Multiple Sclerosis

Posted on March 3, 2014 by Angel Blair

Different thoughts may come to mind when you hear the word ‘advocacy.’ Some may not be familiar with the term or others may have a very vivid description of what the word means to them. Advocacy can be defined as active support, pleading or arguing in favor of something or for some type of cause. Individuals advocate for themselves in different ways, sometimes without the knowledge that they’re engaging in self-advocacy. When you visit your doctor and ask questions, this is a form of self-advocacy. You are supporting your healthcare by requesting more information to make the best informed decisions you can regarding your care. Some individuals have others assist them with this task at times; family members, friends and caregivers have been known to advocate for care when involved in the healthcare process. Sometimes it’s helpful to have another voice or set of ears advocating for your health needs when interacting with your medical team, and there can be different forms of this advocacy presented.

Here are some ways the MSAA can help you remain an advocate in your healthcare:

My MS Manager™: a mobile-phone application to track disease activity, store medical information, generate reports, and assist individuals with their treatment plan
MSAA’s S.E.A.R.C.H.™ Program: tools to help individuals with learning about the approved long-term treatments for MS, along with questions to discuss with the patient’s medical team
My MS Resource Locator: an MS-specific, online database offering targeted information and unique support services, including detailed guides

What are some ways you advocate for your care?

My MS Manager

Posted on November 16, 2012 by Anna Webber

A friend of mine has a little conversational quip whenever we’re stumped; when we don’t know who won yesterday’s football game, what the name was of that guy in the movie we just saw, or where the best place is to grab coffee in Midtown, he’ll say: “If only we had some sort of device that acts like a computer, small enough to fit in our pockets, with advanced search technologies. Wouldn’t that be neat?”

In a world where we have grown accustomed to having quite literally everything at our fingertips, the last and probably most important area that has been lacking is health and medicine. Sure, we have diet and exercise apps, calorie counters and WebMD. But what if we were able to have an app exclusively dedicated to helping manage a condition, disease, doctor’s info, and health records? An app that presents you with current up-to-date news topics and innovations in that field, hospitals, gyms, and local resources plotted out on your smartphone’s GPS exactly where you are, a place to journal and store all your results, symptoms logs and flare-up entries, in order to have more meaningful, detailed visits with your doctor… what a dream that would be.

That app for MS has been realized with My MS Manager, thanks to Ringful Health and MSAA. The first version for the iPhone is already in-use. And now — the app is available to many more people on Android.

I was floored when MSAA told me about the app in our first meeting. It’s genius!

For me, the app has changed how I live my life with MS. It means that I can live my life with MS.

As an active photographer, often traveling, my routine can so easily get lost in the shuffle. “What day is it?,” I’m often asking myself. Time-changes and inconsistency with sleep and diet can really throw anyone off, especially someone trying to manage multiple sclerosis.

Now that I have the app, I never skip a beat!

Medication is on-time and never forgotten. Catching up on MS advancements, news, and events in my city or globally while I’m sitting waiting for a train, bus or plane is easy. Finding a doctor, hospital, gym, or health food store or restaurant in a new city is as easy as it would be at home. My doctor’s visits are maximized and efficient, leaving us extra time to spend talking about things like how his kids are doing, or what he thinks about a new MS drug or diet approach.

The peace-of-mind that comes with carrying all my relevant MS information with me in my pocket, should I need it in an event or emergency, or just want to find a healthy place to eat while I’m traveling, helps me to free my mind, take a break from MS, and go about my day.

To download My MS Manager for your smartphone please visit www.mymsaa.org/mobile

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