Appendix #1: Resources for Pursuing Enhanced Wellness

Apps

MSAA’s award-winning My MS Manager™ mobile app, which is provided free of charge to people with MS or their care partners, can be downloaded on both Android and Apple iOS mobile devices.

Developed in conjunction with @Point of Care, this first-of-its-kind app for MS offers individuals a convenient and effective tool for managing the ever-changing course of the disease. Features of My MS Manager include:

A daily journal for logging symptoms, blood pressure and weight, physical activity, and personal notes
Health measurement scales that track fatigue, depression, bladder patterns, and cognitive abilities
The option to generate charts and reports across various metrics such as treatments, moods, symptoms, and more
Links to additional educational materials from MSAA

Other HIPAA-compliant features include optional private reminder settings and the ability to connect to physicians and other clinicians on your care team via the app to share your progress and reports securely and as needed. Please visit mymsaa.org/mobile for more information.

Beyond apps developed specifically for people living with MS, mobile phones typically record and can provide information on step count, walk steadiness and stride, and stairs climbed. Wearable health devices (e.g., Fitbit^® or the Oura^® Ring) can provide additional information, including details on sleep patterns, stress levels, and more.

Videos and webinars

Educational videos can also be useful resources. Those videos with the most reliable information are produced by medical societies, non-profit advocacy groups, well-known healthcare institutions or board-certified physicians, and other healthcare professionals with expertise in MS.

For example, earlier this year, MSAA produced the webinar, “The Long Game: Lifestyle Medicine & MS.” This webinar features a wealth of practical, scientifically sound advice from Lisa Doggett, MD, MPH, a board-certified family and lifestyle medicine specialist practicing at UT Health Austin’s Multiple Sclerosis and Neuroimmunology Center.

Websites and publications

Once more, the challenge isn’t finding information about wellness and MS online or in print, it’s selecting current, pertinent, and accurate information available through an internet search.

MSAA’s website, mymsaa.org, offers many resources, from access to videos, webinars, and podcasts, to extensive content on everything from symptoms and their management to our Ultimate MS Treatment Guide (an interactive tool for learning about and comparing the different disease-modifying therapies). In addition, other sections include our My MSAA Community peer-to-peer online forum as well as our MS Conversations blog.

While on our website, you’ll also find a variety of publications, including several issues of this magazine, The Motivator; About MS, a comprehensive overview of MS and its treatments; MS Relapse Toolkit, a booklet explaining ways to prepare for and minimize the effects of a relapse; and more. In addition, MSAA offers “What’s New in MS Research,” a bimonthly online article providing research updates.

Being a savvy consumer of MS information

It is important to “consider the source” and to assess the quality of information being provided. Ask yourself:

What qualifications do the authors or speakers possess?
Is the sponsoring organization a medical society (e.g., the American Academy of Neurology), non-profit advocacy organization, MS center or clinician, or a for-profit entity? (Of course, businesses provide many valuable products and services for people with MS, so for-profit status isn’t a reason to dismiss information from such sources. It is, however, important to be aware of who is providing the information.)
How current is the information? Does it disclose when it was published, posted, or updated?
Is the advice being offered broadly consistent with what you are seeing and hearing from other sources?
Are any claims supported by references to articles published in scientific journals, recommendations from reputable organizations, or government health agencies? And do those claims seem realistic? Because, as you know, “If it sounds too good to be true, it probably is.”

Finally, before making any significant changes in your wellness strategy – particularly in terms of starting over-the-counter supplements, herbal preparations, or similar products – consult with your healthcare team, who remain your best source of information on multiple sclerosis.

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