1. MS support groups
Whether you are newly diagnosed or have been living with MS for many years, it is important to connect with other people who have similar experiences. When I was newly diagnosed, my neurologist hosted a monthly support group/educational meeting for other newly diagnosed patients with their care-partners, parents, loved ones, or close friends. This provided an opportunity for us to learn reliable information, to ask questions, and to talk to other people with MS going through the same first-year experience. The National MS Society (NMSS) and the Multiple Sclerosis Foundation (MSF) sponsor extensive networks of MS support groups throughout the country. You can call their offices or go online to find a support group near you.
2. Educational events Many of the MS organizations and larger MS support groups and clinics offer online and in-person educational events. Attending meetings and webinars can be an excellent way to learn about MS and to gather important information that helps you live well beyond the diagnosis.** Can Do™ Multiple Sclerosis, MSF**, and MS Views and News host a variety of programs that you should check out.
An unexpected way to learn about MS and to connect with other people living with MS is by attending programs sponsored by each of the pharmaceutical companies that produce treatments for MS patients. These meetings typically offer a program presented by a recognized MS professional on a select topic, an inspirational story from a person with MS, and an opportunity to ask your MS-related questions. You can also network with other attendees which may lead you to local resources you hadn’t known about.
3. MS research
One of the first things my neurologist recommended after diagnosis was for me to sign-up for an MS patient registry that conducts longitudinal research through simple surveys. Two of the most prominent patient-based research initiatives in the US are iConquerMS™ which is patient-governed and sponsored by the Accelerated Cure Project (ACP), a non-profit organization in Boston dedicated to research, and the NARCOMS project which is run by the Consortium of MS Centers (CMSC).
4. MS publicationMSS,** MSF**, and Multiple Sclerosis Association of America (MSAA) publish quarterly or bi-annual magazines that are delivered to your home. It’s as easy as signing-up. These magazines and select articles can also be viewed online in digital format which is great, especially if you want to share specific information with family and friends and you can link directly to the source. These organizations have also created large libraries of brochures on topics related to practically every aspect of living with MS.
5. MS advocacy and awareness
The National MS Society and the MS Coalition—a collaborative group of nine MS-related non-profit organizations—assist people with MS in becoming MS activists who join their voices together to advance federal, state, and community policies and programs that benefit people with MS and their families. To become an MS activist, simply sign-up with NMSS to learn about current issues, volunteer, and take action by reaching out to lawmakers. Consider participating in MS awareness and fundraising events such as Walk MS or Bike MS—it can be an uplifting experience.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.