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Navigating Life with Amyotrophic Lateral Sclerosis


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Table of Contents

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 Telephones Digital Tablets What Are High-tech Speech and Writing Aids? Head and Eye Tracking Devices What Is Voice Banking? What Is Brain-Computer Interface Communication? Chapter 12 - Mobility and ALS How Can I Pursue Athletic Activities? How Can I Manage Dressing? Button Hooks Velcro Zippers Loose-Fitting Clothes Shoes How Can I Get On and Off the Toilet? How Can I Get In and Out of the Shower and Tub? Showers Bathtubs How Do I Manage Personal Hygiene? How Do I Manage Brushing My Teeth with Weak Hands? How Can I Turn Over in Bed? Blanket Tent Satin Bed Clothes Bed Handholds How Can I Support My Head and Back? Why Do I Feel Unsteady and Fall? What Can Be Done to Aid Walking? Ankle-foot Arthosis Cane or Walking Stick Walker Lift Chairs Medications for Spasticity What If I Fall and Cannot Get Up - Medical Alert Signaling Systems? What About Wheelchairs? Manual Wheelchairs Power Wheelchairs How Do I Get a Power Wheelchair In/Out of the House and Car? Does Insurance Pay for a Wheelchair? How Do I Order a Wheelchair? What About a Scooter? Why Are Patients Frequently Reluctant to Use Mobility Aids? How Can I Transfer Safely? What Is a Lift? Floor Lifts Ceiling Lifts What About Changes to the Home and Renovations? Can I Still Drive? Chapter 13 - Managing ALS Symptoms How Can I Manage My Saliva? How Can I Manage Thick Phlegm? What Can I Do About Muscle Cramps? How Can I Stop Muscle Twitches (Fasciculations)? How Can I Reduce Leg Stiffness? How Can I Manage Sudden Urges to Urinate? How Do I Manage Constipation? What Are Anticholinergic Side Effects of Medications? How Can I Manage Pain? How Can I Treat Depressed? How Can I Treat Anxiety? How Can I Get Better Sleep? What If I Can't Swallow Pills? Chapter 14 - The Caregiver and ALS Who Provides Care? How Does Providing Care Change with ALS Progression? What Is the Best Way to Offer Help? How Do Patients and Caregiver Manage? How Do Caregivers Manage Changes in Roles? What Can Caregivers Do to Ease the Care Burden? Does Providing Care Affect Caregiver's Health? What Do Caregivers Really Feel? Is Depression Common Amongst Caregivers? How Can a Caregiver Manage Stress? What Are Respites? What Is Bereavement While the Patient Is Alive? Can a Caregiver Have Survivors' Guilt? How Should the Caregiver Prepare for Being Alone? Chapter 15 - Events at the End of ALS How Do People with ALS Die? What if I Want to Continue Living? What if I Can't Make Up My Mind About Ventilation? What if I Don't Want to Continue Living? Do ALS Patients Take Their Own Lives? What Are Palliative Care and Hospice? When Should Hospice Be Considered? How Can Spirituality Help? Chapter 16 - Planning Ahead Who Should I Tell? How and What Should I Tell My Family? What Should I Tell My Children? What Are Medical Directives? Living Will Power Of Attorney for Health Care Do Not Resuscitate Order What Do I Need to Know About Estate Planning? Will Trust Agreement Power of Attorney Lifetime Gift What About Computer Passwords and Safety Deposit Boxes? What About Health Insurance? Medicare Military Veteran Benefits Should I Keep Working? What Is Family and Medical Leave? What Are Other Financial Considerations? Chapter 17 - Research in ALS What Is Going on in ALS Research? How Are Drugs Discovered and Tested? Where Can I Get More Information About Trials? Should I Participate in a Trial? What is Informed Consent? Let Me Try It; What Do I Have to Lose? Chapter 18 - Concluding Thoughts Neurologist's Perspective Caregiver's Perspective Glossary Index

About the Author

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.


"This is a marvelous book for patients, families and caregivers dealing with one of the most devastating disorders that we encounter. The Brombergs have a unique perspective on the disease- Dr. Bromberg is internationally recognized expert in the clinical care of patients with ALS and his wife, Diane is a lawyer who has personally dealt with the disease in her family. The book is remarkable in its comprehensive approach. Not only dealing with the scientific, medical, emotional, functional aspects of the progressive weakness, but also about end-of-life decisions, legal concerns, spirituality, intimacy and other issues that are all part of dealing with the ever changing condition. For anyone having to deal with ALS, this book is a tremendous resource that will answer questions, relieve anxieties and give some comfort to all involved." -Richard A. Lewis, MD, Director, Electromyography Laboratory, Professor of Neurology, Cedars-Sinai, Los Angeles, CA

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