You've just been diagnosed with amyotrophic lateral sclerosis (ALS) or someone you love has. You may be devastated or overwhelmed or in shock. As the diagnosis sinks in, you may realize you have countless questions, everything from "Should I get a second opinion?" and "Can stem cells cure ALS?" to "Will exercise make me stronger?" and "Is a gastric feeding tube worthwhile?"
In the newest book in the American Academy of Neurology's Neurology Now Books series published with Oxford University Press, Navigating Life with Amyotrophic Lateral Sclerosis, authors Mark B. Bromberg, MD, PhD, FAAN, and Diane Banks Bromberg, JD, answer these questions and many others. The husband-and-wife team brings a unique perspective to managing ALS. Dr. Bromberg is an ALS specialist who runs a multidisciplinary ALS clinic at the University of Utah. His wife is a lawyer whose mother died from the disease. In fact, the neurologist and lawyer met when Diane brought her mother, Lois, to Mark's first ALS clinic at the University of Michigan.
The book is divided into 18 chapters that address all aspects of living with ALS, from how it's diagnosed and what happens when motor neurons die, to which treatments, if any, are effective. The authors provide advice about aids for living with the neurodegenerative disease (walkers, wheelchairs, gastric feeding tubes, breathing devices), as well as guidelines for discussing and planning end-of-life decisions. The chapters are sprinkled with stories of people living with ALS, including Diane's mother. The tone is clear eyed and direct. The authors do not shy away from the realities of this progressive, fatal disease, but their book is neither despairing nor hopeless.
They note that surprisingly few ALS patients experience depression and many see the diagnosis as an opportunity to fulfill specific goals and live a more focused life. To that end, the authors provide practical advice on how patients can maintain function and purpose for as long as possible. They also answer many important caregiver questions, reflecting their deep understanding of ALS's effect on the entire family.
Navigating Life with Amyotrophic Lateral Sclerosis is available from all major booksellers.