Amyotrophic Lateral Sclerosis: A Patient Care Guide for Clinicians Book

Preface; Contributors; 1. What Is ALS? Carmel Armon, MD, MSc, MHS, FAAN, FANA: Definitions: Motor Neuron System and Motor Neurons, ALS and Frontotemporal Dementia; ALS Lookalikes: Differential Diagnosis; Sporadic, Familial, and Western Pacific ALS: Familial ALS, Western Pacific ALS/PDS; Clinical Phenomenology: Onset and Spread; Pathophysiology at Tissue and Cellular Level; Descriptive Epidemiology of Sporadic ALS/MND; Environmental Risk Factors: Analytic Epidemiology; ALS as one of the System Degeneration Diseases; 2. Neurological Assessment and Medical Management: James A. Russell, DO, Terry Heiman-Patterson, MD, and Carmel Armon, MD: When to Suspect ALS; How to Diagnose ALS; ALS Mimics; Breaking the News; Assessments that are Important for Patient Care; Predicting Progression; Caring for Patients with ALS; Managing Common Symptoms; Pros and Cons of Specific ALS Therapies; Alternative and Off-Label Treatments; Resources Available to ALS Patients and their Families; 3. Nursing Care and Coordination: Dallas Forshew, RN, BSN, and Nicole Yarab, RN, BA: A Lasting Impression: the Day of Diagnosis; Coordination of the Multidisciplinary Clinic; The Nurse as the Glue that Holds it all Together; Preparing for Clinic Day: Essential Patient Evaluations at Every Clinic, Keeping the Day Organized, Communication Between Team Members on Clinic Day, Take-Home Messages for Patients; Post-Clinic Meeting: A Little Bit of Everything: Essentials of Each Discipline That the Nurse Must Know, Social Work, Speech and Swallowing, Patient Education, Special Issues, Resources for Professional Development; Visiting Established ALS Centers: Research Opportunities for Patients, Caring for the Caregiver; 4. Speech and Swallowing Interventions: L.J. Ball, PhD, CCC, K.A. Wright, MCD, CCC-SLP, and S. Lewis, PhC, CCC-SLP: Speech Features of ALS: Motor Speech/Dysarthria, Voice, Speaking Rate and Intelligibility, Communication Effectiveness; Assessments: Dysarthria, Voice, Intelligibility, Communication Effectiveness; Speech Staging; Interventions: Compensatory Strategies, Voice Banking, Timing Referrals for AAC, Patient and Caregiver Education; Swallowing Features of ALS: Oral Phase Swallowing, Pharyngeal Phase Swallowing, Sensory Differences for ALS; Swallowing Assessment: Oral Phase Swallowing, Pharyngeal Phase Swallowing, Time to Consume Meals, MBSS/FEES, Timing Referrals for Percutaneous Endoscopic; Gastrostomy (PEG); Interventions: Exercises, Swallowing Safety, Conserving Energy, Managing Secretions; 5. Nutrition and Nutrition Therapy: Edward J. Kasarskis, MD, PhD, and Margaret T. Hucks, MS, RD, LD: A Well-Balanced Diet; Nutritional Challenges in ALS; Integrated Approach to Nutritional: Management in ALS, Diet Modification and Eating Strategies, Problems with Self Feeding, Chewing and Swallowing Difficulties, Diet Modification to Increase Calories, Hydration, Constipation, Determine if a Patient Is in Positive or Negative Energy, Balance, Recommending Percutaneous Endoscopic Gastrostomy (PEG) as an Alternative Route for Nutritional Intake if EI< TDEE , Risk Stratification for Peg Insertion Based on % FVC; Dietary Supplements; Resources for People with ALS and Caregivers: Cookbooks, Home Delivered Meals/Food, Nutritional Supplements, Chewable Multivitamin Supplements, Acknowledgments; 6. Physical Therapy: Ronit Sukenick, DPT, and Fondre Goulbourne, DPT: Evaluation; What Is Physical Therapy's Role in the ALS Disease Process?; Role of Physical Therapy in all Stages of ALS; Rehabilitation in Reverse; Avoiding Secondary Complications; Multiple Disciplines Influence Physical: Therapy Plan of Care; Assistive Devices: Walking Aids, Orthoses; Transfers; Pain; Flexibility; Aerobic and Strength Training; 7. Occupational Therapy: Amber Ward, MS, OTR/L, BCPR, ATP, and Benjamin Rix Brooks, MD: Evaluation; Adaptive Equipment: Eating/Drinking/Cutting, Upper Body Dressing, Lower Body Dressing, Bathing, Toileting,
Grooming, Mobile Arm Support, Indoor Leisure Activities, Outdoor Leisure Activities; Splints; Wheelchairs; Wheelchair Accessible Vans and Lifts: Types of Vans, Raised Roof versus Lowered Floor, Rear Entry versus Side Entry, Rear Seat or Passenger Seat, Docking/Tie Downs, Lift versus Ramp, Lifts for the Back of the Vehicle, Ramps; Home Modification: Doors, Ramps, Stair Lift/Elevators, Bathrooms; Driving Modifications; Patient/Family Education; 8. Respiratory Therapy: James B. Caress, MD, and Connie C. Paladenech, RRT, RCP: Natural History; Measurements; Treatments; 9. Assistive Technology: Sara Feldman, PT, MA, DPT, ATP: Evidence-Based AT; AT in the Clinic; Computer Access; iPad; Accessing Ebooks; Environmental Controls; Brain Computer Interface; Summary; 10. Social Work Practice in ALS: Stacey Asnani, MSW, LCSW, and Suzanne Gilroy, MSW: Education; Supportive Counseling: Caregiver Support; Employment Concerns; Disability Programs; Insurance Coverage; Veterans Benefits; Home Health Care and Equipment for Home Use; Unique Populations; Skilled Nursing Facility Placement; Advance Directive Documents; End of Life Care Planning; Palliative and Hospice Care; Advocacy; Treatment Team Support; 11. Psychological Assessment and Support: Susan C. Woolley, PhD, and Jonathan S. Katz, MD: Frontotemporal Dementia, Cognitive Impairment, and Behavioral Impairment: Frontotemporal Lobar Dementia (FTLD), Frontotemporal Dementia in ALS (ALS-FTD), Behavioral Impairment in ALS, Cognitive Impairment in ALS, Prevalence Estimates, Implications of Cognitive and Behavioral Impairment; Differential Diagnosis: Screening, Comprehensive Assessment; Mood Disorders in ALS: Differential Diagnosis; Summary; 12. Ethics and ALS: Katelin Hoskins, RN, MBE, and Leo McCluskey, MD, MBE: Breaking the News; Decision Making; Genetics; Research Participation; Communication; Feeding Tube; Long-Term Mechanical Ventilation; Hospice Care; Physician-Assisted Suicide and Euthanasia; 13. End-of-Life Care: Jerome Kurent, MD MPH, and Meraida Polak, RN: Management of Physical Symptoms: Dyspnea, Terminal Anxiety and Delirium, Dysphagia, Pseudobulbar Palsy and Emotional Lability, Muscle Cramps, Depression, Sialorrhea, Pain, Constipation; The Final Stages of Life for the Patient with ALS: Vital Role of the ALS Patient Family Caregivers and Caregiver Toll, Role of Hospice; 14. Web-Based Resources: Paul Wicks, PhD, and Jamie Heywood: Information Preferences in ALS; Advice for Patients Using the Internet; Online Resources for People with ALS: Static Information, Dynamic Information, Interactive Resources, Improving Your Own ALS Center's Website; Index