Navigating Life with Amyotrophic Lateral Sclerosis provides accessible, comprehensive, and up-to-date information about the challenges patients, family members, and caregivers face when confronted by ALS, a disease that affects approximately 5,600 Americans every year, with as many as 30,000 people managing the disease at any given time. ALS is a difficult disease for the patient and is also challenging for the caregiver and family as there are many questions, issues relating to care, and problems to manage. This guide covers all aspects of managing ALS, from the onset of symptoms, diagnosis, treatments, and coping strategies, to the use of home health care or hospice, and new research in the field. The book also sheds lights on difficult topics, such as end-of-life care and managing legal affairs. Navigating Life with Amyotrophic Lateral Sclerosis is unique because it covers two perspectives: one author is a neurologist with 30 years of experience treating ALS patients, and the other author experienced first-hand the issues in providing care for a parent with ALS. Formatted in a question-and-answer style, peppered throughout with patient stories, and with sections devoted to family members and caregivers, this compassionate resource provides guidance to those seeking to understand how to live with this disease.

Mark B. Bromberg, MD, PhD, FAAN, received his PhD in neurophysiology from the University of Vermont and his MD from the University of Michigan, where he also received his training in neurology. He is currently a professor of neurology at the University of Utah. He has been involved in ALS research and patient care for more than 30 years. Diane Banks Bromberg, JD, earned her law degree from the University of Utah and practices commercial real estate law. She cared for her mother, who had ALS.

About the ANN's Neurology NowTM Books Series Lisa M. Shulman, MD Dedication Preface Acknowledgements Chapter 1- Introduction What are the Basic Features of ALS? How it Starts - Patient Stories How to Use this Book Chapter 2 -ALS Origins Why the Name ALS? Is ALS Different from Motor Neuron Disease? Is ALS a New or Old Disease? How Common Is ALS? Who Was Lou Gehrig? Who Else had ALS? Chapter 3 - The Diagnosis of ALS Diagnosis What Features Make the Diagnosis? What Does the Neurologist Look For? What Are the Symptoms and Signs of ALS? Bulbar Difficulties Upper Extremity Difficulties Lower Extremity Difficulties Why So Many Tests? What Are the El Escorial Criteria? What Are "Rule Out" Tests? Why Does it Take So Much Time to Make the Diagnosis? Do I Really Have ALS; What Diseases Mimic ALS? Multifocal Motor Neuropathy with Conduction Block (MMN) Inclusion Body Myositis (IBM) Kennedy Disease Cervical Spondylitic Myelopathy Lumbosacral Spondylitic Radiculopathy Lyme Disease Carpal Tunnel Syndrome Ulnar Neuropathy at the Elbow Should I Get a Second Opinion? How Was the Diagnosis Given and Received? Chapter 4 - Causes of ALS What Causes ALS? Why Do Neurons Die in ALS? Glutamate Excitotoxicity Oxidative Stress Mitochondrial Dysfunction Protein Aggregation Immune Dysfunction Gene Mutations Challenging Facts About ALS Why Do I Have ALS? Environmental factors Clusters Military Service What Is Familial ALS? How Is ALS Passed On? Autosomal Dominant Inheritance Autosomal recessive Inheritance X-linked Inheritance How Many Genes are Associated with Familial ALS? Are There Genes Associated with Frontotemporal Dementia? Are Genetic Causes of ALS and Frontotemporal Lobe Dementia Related? How Do I Know if I Have Familial ALS? Should I Have Genetic Testing for ALS? Should Family Members of Individuals with Familial ALS Have Genetic Testing? Chapter 5 - Motor Progression of ALS How Does ALS Progress? How Is Progression Measured? Muscle Strength Functional Rating Scale How Fast Am I Progressing? Does ALS Ever Get Better? Are There Staging Scales for ALS? Chapter 6 -Non-Motor Features of ALS What Is Frontotemporal Lobe Dementia? What Are the Features of Frontotemporal Lobe Dementia? How Is Frontotemporal Lobe Dementia Diagnosed? Why Is It Important to Diagnose Frontotemporal Lobe Dementia? How Are Symptoms of Frontotemporal Lobe Dementia Treated? What Is Pseudobulbar Affect (PBA)? What Are the Features of Pseudobulbar Affect? How Is Pseudobulbar Affect Diagnosed? Why Is it Important to Diagnose Pseudobulbar Affect? How Is Pseudobulbar Affect Treated? Can ALS Cause Changes in Bowel and Bladder Function? Why Do I Feel so Fatigued? ALS Can be Depressing; How Do I Know if I Am Depressed? Why Have I Noticed Changes to My Skin? Why Do I Have Scaly Skin? Why Do I Sweat so Much? Why Do My Eyes Sting? Why Do I Bite My Cheek? Why Are My Hands or Feet Red, Swollen or Cold? Do I Have to Worry About a Deep Venous Thrombosis (Blood Clot)? Do I Have to Worry About Skin Pressure Sores? Chapter 7 - Treatment of ALS Do I Need a Primary Care Physician? Should I Continue with My Current Medications? Where Can I Get the Most Comprehensive Care? What Happens in a Multidisciplinary ALS Clinic? Neurologist Nurse Speech-language Pathologist Occupational Therapist Physical Therapist Respiratory Therapist Dietitian Social Worker Genetics Counselor Palliative Care and Hospice Pulmonologist Gastroenterologist Psychiatrist Psychologist Orthotist How Often Should I Be Seen in Clinic? Should I Attend a Support Group? What Is Available on the Internet? What Should I Take for My ALS? What About Rilutek or Riluzole? What Else Is Available? What About Stem Cells for ALS? What Can Stem Cells Do? How Are Stem Cells Delivered in ALS? Where Can I Get Stem Cells? What About Dietary Supplements and Alternative Therapies? Will Protein Supplements Build Muscle? Can Creatine Give Me More Strength? Can Chelation Therapy Get Rid of Toxins? Should I Replace My Amalgam (Silver) Dental Fillings? What About Massage and Acupuncture? Can Exercise Improve Strength? If I Don't Exercise Will I Lose Strength Faster? Can Exercise Be Harmful? Chapter 8 - Living with ALS What Will Be My Quality of Life? What Can I Still Do? Can I Travel? Can I Still Have Intimacy? Can I Have a Baby? What Is My Legacy to My Family? Chapter 9 - Nutrition in ALS Why Is Nutrition Important in ALS? Why Do I Lose Weight? What Foods Are Harder or Easier to Swallow? How Much Weight Loss Is Too Much? How Do I Stop Weight Loss? High Calorie Foods Supplements What Is Patient-Caregiver Stress over Food? What if I Can't Maintain My Weight Despite Supplements? How Are Feeding Tubes Placed? Percutaneous Endoscopic Gastrostomy (PEG) Radiologically Inserted Gastrostomy (RIG) Surgically Placed Gastrostomy How Do I Use a Feeding Tube? How Do I Take My Medications if I Have a Feeding Tube? What Can I Expect From a Feeding Tube? Can I Still Eat if I Have a Feeding Tube? Chapter 10 -Breathing and ALS How Does ALS Affect Breathing? How Does the Diaphragm Work? How Will I Know My Breathing Is Affected? What Does High Carbon Dioxide Do? How Is Breathing Measured in Clinic? What Can I Do To Help My Breathing on My Own? What Is Air or Breath Stacking? Stopping Smoking What Will Supplemental Oxygen Do? What Breathing Numbers Concern Doctors? Why Is My Cough Weak? What Is a CoughAssist Device? What Causes My Throat to Tighten and Make It Hard to Breathe? What Happens When My Breathing Becomes Weaker? What Is Non-invasive Ventilation? What Can I Expect with Non-invasive Bi-level Ventilation? What Is Diaphragm Pacing? How Is Progressive Respiratory Failure Managed? What Is Invasive Ventilation? What Can I Expect with Invasive Ventilation? How Do I Make the Choice For or Against Invasive Ventilation? What Does Locked-in Mean? What If I No Longer Want to Continue Invasive Ventilation? Chapter 11 - Communication and ALS How Does ALS Affect Speech? How Can Speech Be Optimized? What Are Low-Tech Speech Aids? Handwriting Alphabet Board What Are Medium-Tech Aids? Speech Amplification Mobile Tele…