Making your own choices

Cyndi Zagieboylo,
President & CEO

by Cyndi Zagieboylo

Multiple sclerosis does not have a predictable course or clear-cut treatments. Some illnesses can be managed with a standardized course of antibiotics, perhaps, or simple dietary changes. MS, however, presents a unique set of symptoms and severity in every individual; there’s no predetermined path. What’s more, MS changes over a person’s lifetime, as you’ll hear from people who were interviewed for “Aging with MS” in this issue of Momentum.

In practical terms, that means that people who are diagnosed with MS need to make decisions—not just once, but many times throughout their lives—about what treatment and management strategy makes the most sense for them, right now. Each person living with the disease needs to consider questions like: Can I tolerate needles? Are the side effects worth the potential benefits of the treatment? Should I join a health club? What kinds of food make me feel best? How can I be more resilient when overcoming obstacles? How far out should I plan?

Then there’s the matter of trying a treatment approach and seeing how it works. With MS, you are continually and repeatedly self-monitoring, and making decisions regarding what’s best—and what’s next—for you. Such constant choices can be challenging if you lack the information needed to make the most informed decision for you.

Ideally, making treatment and lifestyle choices involves close collaboration with an MS specialist. As you’ll learn in “When doctors move on,” that can be challenging if a doctor—with whom you’ve spent years building a trusting relationship—suddenly moves his or her practice, or if you live in an area where MS specialists are scarce.

At the National MS Society, we’re taking action to help address these challenges. We believe that all people with MS should be able to access an MS specialist, as outlined in our Access to High Quality MS Healthcare Principles. We’re working to provide specialized training and education in MS care through clinical fellowships. Society resources are being directed to where they are needed most,such as gaps in certain regions and populations.

But more than that, we’re working to make our collective knowledge about MS available to everyone 24/7, regardless of where they live. We’re making the latest research accessible online and presenting it in plain language. We’re providing information on what medications are available, and on lifestyle and wellness strategies to try. We’re making sure that people with MS have opportunities to talk with others living with MS about their experiences. We want each person to know all the options for treating and managing his or her MS.

I’d like to hear what decisions you need to make and what support you could use to increase your confidence in decision-making. What information do you need? What should your healthcare provider know? What kinds of connections are important to you? We, at the National MS Society, strive to be the best possible partners as each person makes decisions to move his or her life forward.

That’s what’s on my mind. What’s on yours?

Cyndi Zagieboylo
President & CEO
National MS Society