Whether you've just been diagnosed with multiple sclerosis (MS), have been living with the disease for years, or have a family member or other loved one with the condition, there's something for you in the revised version of Navigating Life with Multiple Sclerosis, part of the American Academy of Neurology's Brain & Life® book series, published with Oxford University Press.
The book is authoritative yet warm and accessible. Reading it is like having a team of specialists at your fingertips ready to explain everything from the latest disease-modifying therapies to how things like exercise, sleep, and stress affect the disease.
The book was written by a trio of MS experts, each with her own specialty. Barbara Giesser, MD, FAAN, is a neurologist at the Pacific Neuroscience Institute in Santa Monica, CA, who sees people with MS and has led clinical trials in the field for more than 40 years. Kathy Costello, MS, spent more than 20 years as an MS nursing specialist at the University of Maryland and the Johns Hopkins Medical Center in Baltimore before taking on leadership roles with the National Multiple Sclerosis Society. She is currently the chief operating officer of Can Do MS, which offers free programs and resources for those with MS and their care partners. Rosalind Kalb, PhD, is a clinical psychologist and certified health coach in West Bath, ME, who has worked with people with MS and their families for more than 40 years. Before joining Can Do MS as a mental health programs consultant, she served as vice president of the professional resource center at the National MS Society.
How is this book different from the many other books about MS?
Dr. Giesser: Our book is kind of like MS 101. We explain exactly what the disease is, how it can affect you, and how you can manage it. Our goal is to empower people to take charge of their health. That's why we describe in depth how medications work, how to partner with a provider to choose the right one, and how lifestyle interacts with MS.
Dr. Kalb: I think this book does a great job of making technical information accessible to everybody. The three of us have spent decades talking to a broad range of people about a very complex illness, so we know how to share information in a way that people can understand and use.
Costello: It's easy to read and an excellent reference. The glossary alone is rich with information. If you come away from a doctor's visit wondering what some term was, you can find it in the glossary and read more about it. I think the comprehensive nature of this book—looking at the science, the therapies, your life, your family, and health and wellness—is unique.
The first edition of Navigating Life with Multiple Sclerosis came out in 2015. What has changed since then?
Costello: We know so much more about the underlying disease process, about the importance of accurate and timely diagnosis, and about new treatments, particularly high-efficacy disease-modifying therapies that can change the progression of the disease. In addition, an enormous amount of research has been published about lifestyle and things that people can do to take control of their health.
Dr. Kalb: We added an entire section on the impact of MS on family members, particularly care partners. One of my favorite chapters is about how people can prepare themselves for the unpredictability of their disease while making the most of the moment they're in. This book aims to help people feel more in control and more prepared.
What are some of the lifestyle recommendations?
Dr. Giesser: Back in the “bad old days,” the conventional wisdom was that people with MS shouldn't exert themselves. Now we know that couldn't have been worse advice. Exercise is beneficial for everyone, but particularly for people with MS.
Dr. Kalb: A few years ago, I led an expert review panel for the National MS Society that recommended that people work with their doctors to establish a physical activity plan. In general, it should include at least 150 minutes of moderate exercise or physical activity a week.
Costello: We now know that attending to your overall health and avoiding chronic illnesses is not only good for you generally but also good for your MS, so the book expands on things like diet and nutrition, intimacy and reproductive health, stress and sleep, and family issues.
What do you hope people will take away from this book?
Dr. Kalb: I hope readers will understand the importance of health and wellness not only for people with MS but for their care partners as well. Even though they don't have the disease, care partners are significantly affected by MS. We know that they experience depression, and they tend to neglect their own health and well-being and feel selfish taking care of themselves. We've tried to make it clear that because they are the linchpins in the relationships, their health and well-being are critical as well.
Dr. Giesser: One of the scariest things about being diagnosed with MS is the disease's unpredictability. Uncertainty is scary. But today we can confidently tell most newly diagnosed people that, given highly effective therapies and knowledge about lifestyle and symptom management, it's reasonable to expect that it will be unlikely for them to have significant disability. There are no guarantees, but with earlier diagnoses, more effective therapies, and better understanding of the interplay between treatment and lifestyle, people have more control over their disease and its outcome.
