A Manual For People Living with ALS PDF
Preview A Manual For People Living with ALS
2012 Manual People Living With ALS --- English_as.e$S_Layout 1 12-06-27 1:51 PM Page 1 A Manual For People Living with ALS Seventh Edition Jane McCarthy, MSc, MPH ALS SOCIETY OF CANADA Editor 1(800)267-4257 www.als.ca AMYOTROPHIC LATERAL SCLEROSIS 2012 Manual People Living With ALS --- English_as.e$S_Layout 1 12-06-27 1:51 PM Page 3 Contributors Pg. vi Manual Preface Pg. ix Acknowledgement Pg. x How to Use the Manual Pg. 1 A Message of Hope Pg. 2 SECTION 1: WHAT IS ALS? Pg. 3 SECTION 2: COPING WITH ALS Pg. 11 SECTION 3: GETTING TO KNOW THE ALS SOCIETY Pg. 17 SECTION 4: ALS DISEASE MANAGEMENT Pg. 19 Adapting to Changes in Mobility and Maintaining Independence Pg. 30 Adapting to Swallowing Problems and Maintaining Good Nutrition Pg. 37 Adapting to Changes in Speech and Maintaining Communication Pg. 45 Adapting to Changes in Breathing and Maintaining Lung Function Pg. 51 Maintaining Good Oral Health Pg. 60 Approaching End-of-Life Issues and Advance Care Planning Pg. 63 SECTION 5: ASSISTIVE EQUIPMENT Pg. 68 SECTION 6: FINANCIAL & LEGAL ISSUES Pg. 74 RESOURCE SECTION Pg. 84 iii 2012 Manual People Living With ALS --- English_as.e$S_Layout 1 12-06-27 1:51 PM Page 4 4: ALS DISEASE Section 1: WHAT IS ALS? Section MANAGEMENT 19 -Your Healthcare Team 23 - Overview of ALS Management Issues 3 - General Description 23 - Mouth and Throat Problems 3 - Types of ALS 24 - Symptoms that Affect Daily Living 4 - Symptoms, Signs and Diagnosis 25 - Mobility 5 - What Causes ALS? 27 - Sexual Concerns 9 - Is ALS Treatable? 27 - Complementary and Alternative Healthcare and Natural Health Products SUB-SECTIOnS: Adapting to Changes in Mobility and Section 2: COPING WITH ALS Maintaining Independence 30 - Exercise and ALS 31 - Mobility Aids 35 - Travel Tips Adapting to Swallowing Problems and Maintaining Good nutrition 11 - The ALS Diagnosis: Now What? 37 - The Mechanics of Swallowing 11 - Coping Strategies for the Person with ALS 38 - Adapting How and What You Eat 12 - Meeting the Challenge 40 - Maintaining Good Nutrition 13 - Tools for Staying on Track 41 - Tube Feeding 14 - Coping Strategies for Family Members 15 - Helping Children to Cope Adapting to Changes in Speech and Maintaining Communication 45 - Changes in Speech 46 - Augmentative and Alternative ........Communication (AAC) Strategies 47- No-Tech Strategies 47- Low-Tech Strategies 3: GETTING TO KNOW Section 48- High-Tech Strategies THE ALS SOCIETY Adapting to Changes in Breathing and Maintaining Lung function 17 - ALS Society of Canada 51 - The Mechanics of Breathing 17 - Providing Information 53 - Monitoring Breathing Function 17 - Supporting Research 54 - Complications of Respiratory Infection 17 - Providing Support 55 - Staying Healthy: Preventive Airway 18 - Contacting the ALS Society Management Strategies iv 2012 Manual People Living With ALS --- English_as.e$S_Layout 1 12-06-27 1:51 PM Page 5 56 - Respiratory Failure: Advanced Breathing 6: FINANCIAL & Section Management Options LEGAL ISSUES Maintaining Good Oral Health 74 - Living with ALS Can Be Expensive 60 - Oral Health Issues 74 - Employment and ALS 61 - Oral Health Devices 74 - Insurance Issues 77 - Pension Plans Approaching End-of-Life Issues 78 - Tax Issues and Advance Care Planning 79 - Future Planning Documents 63 - Why It's Important to Talk about It 80 - Health Care Decision Making 63 - Approaching the Concept of End-of-Life 80 - Living Wills and Advance Care Plan 64 - Advance Planning 81 - Estate Plans 67 - Leaving a Legacy 82 - Last Will and Testament Section RESOURCES Print Materials Section 5: ASSISTIVE EQUIPMENT 84 - ALS Medical Textbooks 84 - ALS Management Guides and Coping 68 - Before Purchasing Equipment with Chronic Illness 68 - Types of Equipment 86 - Cook Books 68 - Assistive Tools for Activities of 86 - Caregiver Books and Guides Daily Living (ADL) 88 - End-of-Life Books and Guides 69 - Body Supports 90 - Bereavement Books 70 - Walking Aids 92 - Personal ALS Stories 70 - Wheelchairs 94 - Fiction 71 - Lifts and Stair Glides 94 - Books for and about Children 71 - Bathroom Equipment Videos 72 - Beds and Mattresses 96 - Videos/DVD’s 72 - Augmentative and Alternative Internet Resources Communication (AAC) Equipment 98 - ALS Specific 72 - Tube Feeding Equipment 99 - Assistive Technology 73 - Home Modifications 99 - Caregiver Sites 73- Service Dogs 100 - General Health Resources 100 - Government Resources ALS Society fact Sheets ALS Research Updates ALS SOCIETY OF CANADA 1(800)267-4257 www.als.ca 2012 Manual People Living With ALS --- English_as.e$S_Layout 1 12-06-27 1:51 PM Page 6 CONTRIBUTORS Karen Hall, MScOT, OT Reg. (Ont.) 7th Edition Reviewers/Contributors: Assistive Technology Clinic Toronto, ON Heather Allen, MSW, RSW Social Worker Jennifer Libramonte, CFP ALS Clinic/Neuromuscular Care Stream Financial Planning Advisor The Ottawa Hospital Rehabilitation Centre Toronto, ON Ottawa, ON Douglas A. McKim, MD, FRCPC, FCCP, ABSM Kathleen Beggs, RD Medical Director, Respiratory Rehabilitation Services Dietitian, ALS Team Associate Professor, Department of Medicine GF Strong ALS Centre University of Ottawa Vancouver, BC Ottawa, ON Stuart Cleary, PhD, CCC-SLP, R-SLP Leann Merla, MSc, OT Reg (Ont) Associate Professor Occupational Therapy Clinical Specialist Board Recognized Specialist in Swallowing and Neuromuscular Clinic Swallowing Disorders (BRS-S) University Hospital/London Health Sciences Centre Department of Speech Pathology and Audiology London, ON Faculty of Rehabilitation Medicine Adjunct Associate Professor (Neurology) Gwyneth Moe, BSc, PT Faculty of Medicine and Dentistry Physiotherapist University of Alberta GF Strong ALS Centre Edmonton Alberta Canada Vancouver, BC Shelley Dibranon, B.Sc., RD Lorraine Papineau, PT Clinical Dietitian Physiotherapist ALS Clinic/Neuromuscular Care Stream ALS Clinic/Neuromuscular Care Stream The Ottawa Hospital Rehabilitation Centre The Ottawa Hospital Rehabilitation Centre Ottawa, ON Ottawa, ON Heather D. Durham, PhD Brigitte Poirier, M.P.O., RSLP Professor Speech-Language Pathologist Department of Neurology and Neurosurgery GF Strong ALS Centre Montreal Neurological Institute Vancouver, BC McGill University Montreal, QC Nicole Shuckett, RD Consulting Dietitian Karen Findlater, PT Toronto, ON Neuromuscular Clinic University Hospital/London Health Sciences Centre Amy Shuster, MSW London, ON GF Strong ALS Centre Vancouver, BC Nancy Forseth, BSc, OT GF Strong ALS Centre Past Contributors to Previous Editions: Occupational Therapist Vancouver, BC Denise Burdon, RDH York Region Dental Hygienists Society vi A Manual for People Living with ALS 2012 Manual People Living With ALS --- English_as.e$S_Layout 1 12-06-27 1:51 PM Page 7 SECTION 1 CONTRIBUTORS Ottawa, ON Markham, ON Alayne MacDonald, MSc, S-LP(C) Pat Carey, RN Speech-Language Pathologist Edmonton, AB Nova Scotia Hearing and Speech Centres Elaine Cawadias, RD Halifax, NS Clinical Dietitian The Rehabilitation Centre Ruth McFeat Ottawa, ON Past ALS Caregiver London, ON Marcia Choi, MSc, SLP(C) Registered Speech Language Pathologist Mikelle Meaden, MSW Vancouver Coastal ALS Centre Neuromuscular Clinic Vancouver, BC University Hospital/London Health Sciences Centre London, ON Monique L. D'Amour, MD Medical Director Colleen O'Connell, MD, FRCPC CHUM - Hôpital Saint-Luc Stan Cassidy Centre for Rehabilitation Clinique SLA Fredericton, NB Montréal, Québec Patricia Ordynec Sue Decker, MSc, R-SLP Manager-North Region Speech Language Pathologist-North Region ALS Society of Alberta ALS Society of Alberta Edmonton, AB Edmonton, AB Ann Rowe, RN Denise Figlewicz, PhD London, ON Neuroscientist (past VP, Research ALS Canada) London, ON Nigel Van Loan Past ALS Caregiver Marjorie L. Griffin, MSW Ottawa, ON Vancouver, BC Patricia Van Loan, MSW, MScEd Janice Hagel, OT Person with ALS Calgary, AB Ottawa, ON Wendy S. W. Johnston, MD, FRCPC William Weir Associate Professor and Co-Director, Person with ALS Neuromuscular/ALS Program Hamilton, ON University of Alberta/Walter Mackenzie Health Sciences Centre Kathleen Beggs, RD Edmonton, AB Dietitian, ALS Team Vancouver Coastal ALS Centre Carole LeBlanc RRCP (RRT) Vancouver, BC Professional Practice Leader Respiratory Therapy Denise Burdon, RDH The Rehabilitation Centre York Region Dental Hygienists Society Subsidiary Corporation of The Ottawa Hospital Markham, ON vii A Manual for People Living with ALS 2012 Manual People Living With ALS --- English_as.e$S_Layout 1 12-06-27 1:51 PM Page 8 SECTION 1 CONTRIBUTORS Elaine Cawadias, RD Clinical Dietitian The Rehabilitation Centre Ottawa, ON Monique L. D'Amour, MD Medical Director CHUM - Hôpital Saint-Luc Clinique SLA Montréal, Québec Karen Findlater, PT Neuromuscular Clinic University Hospital/London Health Sciences Centre London, ON Wendy S. W. Johnston, MD, FRCPC Associate Professor and Co-Director, Neuromuscular/ALS Program University of Alberta/Walter Mackenzie Health Sciences Centre Edmonton, AB Douglas A. McKim, MD, FRCPC, FCCP, ABSM Medical Director, Respiratory Rehabilitation Services Associate Professor, Department of Medicine University of Ottawa Ottawa, ON Leann Merla, OT Neuromuscular Clinic University Hospital/London Health Sciences Centre London, ON Colleen O'Connell, MD, FRCPC Stan Cassidy Centre for Rehabilitation Fredericton, NB Nigel Van Loan Past ALS Caregiver Ottawa, ON viii A Manual for People Living with ALS 2012 Manual People Living With ALS --- English_as.e$S_Layout 1 12-06-27 1:51 PM Page 9 MANUAL PREFACE he purpose of this Manual is to provide Updated editions of the Manual will be published information and helpful hints to individuals periodically, so readers with suggestions for updating Tand families recently diagnosed and living with or changing content, or altering the format to be as ALS. Readers are encouraged to use this manual as a user-friendly as possible, are asked to share their tool to keep notes, organize personal information, and insights by sending an e-mail to 2012 Manual People Living With ALS --- English_as.e$S_Layout 1 12-06-27 1:51 PM Page 10 ACKNOWLEDGEMENT revious editions of this Manual have been used as a source of information and support Pby many people across this country living with ALS, including those with the disease, their families, and caregivers. This was especially true for its original author Bob Macdonald. Bob had a unique exposure to ALS through his grandmother's, his father's, and his own experience living with the disease. When he was diagnosed with familial ALS, he plunged full force into the prepara- tion of the first version of this resource manual. His search for more information on the disease to expand on what he already knew led him around the world through his computer. The fruits of his search are still evident here in the seventh edition which Bob Macdonald reflects updated information thanks to the health care professional contributors who so graciously gave of (Photo and permission to use their time to review the Manual and provide neces- provided by Sandra Macdonald) sary changes (see “Contributors”). This manual is dedicated to the memory of all those who have lived with ALS, but in particular to Bob Macdonald who held a vision for the original edition and inspired its continuation. -2012 x A Manual for People Living with ALS
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