Navigating Life With Amyotrophic Lateral Sclerosis by Bromberg, Mark B. -- Read -- Imperial Library of Trantor

Index

Cover Title Page Copyright Page Dedication Contents About the AAN’s Neurology Now™ Books Series Foreword Preface Acknowledgments 1. Introduction

What Are the Basic Features of ALS? How It Starts: Patient Stories How to Use This Book

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?

3. The Diagnosis of ALS

What Does the Neurologist Look for? What Are the Symptoms and Signs of ALS?

Bulbar Difficulties Upper Extremity Difficulties Lower Extremity Difficulties Progression of Symptoms

What Are the Most Important Tests? What Are the El Escorial Criteria? What Are “Rule Out” Tests? Why Does Making the Diagnosis Take So Much Time? Do I Really Have ALS? What Diseases Mimic ALS?

Multifocal Motor Neuropathy with Conduction Block Inclusion Body Myositis 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?

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 Familial 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 Lobe 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?

5. Motor Progression in 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?

6. Nonmotor 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?

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?

7. Management and 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 Genetic Counselor Palliative Care and Hospice Pulmonologist Gastroenterologist Psychiatrist Psychologist Orthotist

How Often Should I Be Seen in the Clinic? Should I Attend a Support Group? What Is Available on the Internet? What Should I Take for My ALS? What about Riluzole (Rilutek)? 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 Cell Treatment?

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?

Should I Exercise?

Can Exercise Improve Strength? If I Don’t Exercise, Will I Lose Strength Faster? Can Exercise Be Harmful?

8. Living with ALS

What Will My Quality Of Life Be? What Can I Still Do? What Should I Do in the Time I Have, and When Should I Do It? Can I Travel? Can I Still Have Intimacy? Can I Have a Child? What Is My Legacy to My Family?

9. Nutrition and ALS

Why Is Nutrition Important in ALS? Why Do I Lose Weight? Which 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 Radiologically Inserted Gastrostomy 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?

10. Breathing and ALS

How Does ALS Affect Breathing? How Does the Diaphragm Work? How Will I Know If My Breathing Is Affected? What Does High Carbon Dioxide Do? How Is Breathing Measured in the Clinic? What Can I Do to Help My Breathing on My Own?

What Is Air or Breath Stacking? Should I Stop 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 Are Mechanical Aids to Breathing? More about Noninvasive Ventilation What Is Diaphragm Pacing? More about Invasive Ventilation How Do I Make the Choice for or against Full-Time Ventilation? What Does “Locked in” Mean? What If I No Longer Want to Continue Full-Time Ventilation?

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 Speech Aids?

Speech Amplification Mobile Telephones Digital Tablets

What Are High-Tech Speech Aids?

Head- and Eye-Tracking Devices Voice Banking Brain-Computer Interface Communication

12. Mobility and ALS

How Can I Pursue Athletic Activities? How Can I Manage Dressing? 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? How Can I Support My Head and Back? Why Do I Feel Unsteady and Fall? What Can Be Done to Aid Walking?

Ankle-Foot Orthosis 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 and 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 Reluctant to Use Mobility Aids? How Can I Transfer Safely? What Is a Lift?

Floor Lifts Ceiling Lifts

What about Changes and Renovations to the Home? Can I Still Drive?

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 Do I Manage Pain? How Can I Treat Depression? How Can I Treat Anxiety? How Can I Get Better Sleep? What If I Can’t Swallow Pills?

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 Caregivers Manage? How Do Caregivers Manage Changes in Roles? What Can Caregivers Do to Ease Their Care Burden? Does Providing Care Affect Caregivers’ Health? What Do Caregivers Really Feel? Is Depression Common among Caregivers? How Can a Caregiver Manage Stress? What Are Respites? What Is Bereavement While the Patient Is Alive? Can a Caregiver Have Survivor’s Guilt? How Should the Caregiver Prepare for Being Alone?

15. The End Stages 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 Patients with ALS Take Their Own Lives? What Are Palliative and Hospice Care? When Should Hospice Care Be Considered? How Can Spirituality Help?

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 Healthcare Do-Not-Resuscitate Order

What Do I Need to Know about Estate Planning?

Will Trust Agreement Power Of Attorney for Financial Affairs 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?

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?

18. Concluding Thoughts

Neurologist’s Perspective Caregiver’s Perspective

Glossary About the American Academy of Neurology and American Brain Foundation Index

← Prev
Back
Next →

← Prev
Back
Next →