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A Guide to Amyotrophic Lateral Sclerosis (Als) Als Guide

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A Guide to Amyotrophic Lateral Sclerosis (Als) Als Guide ALS GUIDE A GUIDE TO AMYOTROPHIC LATERAL SCLEROSIS (ALS) ALS GUIDE INTRODUCTION Receiving a diagnosis of ALS can be overwhelming. You may day-to-day challenges of living with ALS. It is meant to experience many different emotions, and you may feel the complement your primary source of information – the need to learn more about how this complex disease will healthcare team managing your ALS. affect you. Some people want to know as much as possible, often right after diagnosis. Others prefer to take a gradual approach as changes occur and as the need for specific information develops. Take the approach that works best for you. Family members and close friends may also wish to learn more about ALS. The ALS Guide has been developed to provide practical information about ALS, its progression, and how people and families living with ALS can find solutions to help maintain independence. There are different versions of this guide. All of the content is the same except for the information about the local delivery of care and services, which can be different from province to province. The purpose of the ALS Guide is to help people and families with ALS plan for the physical, emotional, and financial challenges ahead and to offer tips and support for the ACKNOWLEDGEMENTS This ALS Guide is a project of the Federation Thank you to the Client Services Committee and treatment, research and provincial Council of ALS Societies across Canada – for their diligence and hard work in specific information. Client Services Committee. developing this Guide. Each provincial ALS We hope that the ALS Guide provides you Society developed content for segments The 2019 edition of the ALS Guide in English and your family with helpful information. specific to their region. The ALS Guide is and French is built upon the premise of stronger as a result of all the thoughtful Diana Rasmussen, Executive Director, ALS previous editions of the ALS Manual, with feedback. Society of Manitoba and Chair of the Client new and exciting, up to date information. Services Committee Appreciation is also given for the language Thank you to staff at ALS Canada who editor, translators, and designer whose Lisa Droppo, Vice President, Client Services, researched and wrote the majority of the contributions were critical to this ALS Guide. ALS Canada and ALS Guide Project Manager. content with expertise from numerous healthcare providers and people living with This guide will be updated on an ongoing ALS, their caregivers and other experts. basis to reflect changes about ALS, care ALS GUIDE 2 ALS GUIDE HOW TO USE MY ALS SOCIETY PAGE 6 01 How the ALS Society in your province can THE GUIDE support you and your family through this journey. This guide is divided into seven main sections, which means you can refer easily ABOUT ALS PAGE 8 to the information you need when you need 02 Facts about the disease it. You may prefer to skim through the guide or choose certain sections to read first. AFTER THE DIAGNOSIS PAGE 15 03 The journey from diagnosis to planning It is not necessary to read the guide all at for the road ahead. Includes advice on once. You may pick sections that you want communicating the news, tips on coping, to read yourself and others you want to tools to help you plan, and information share with family, friends, and caregivers. on legal, social, and financial supports available. LIVING WITH ALS PAGE 36 04 Detailed information about major changes to the body and how to manage everyday routines. FOR CAREGIVERS PAGE 68 05 How caregivers can deal with common emotions, manage stress, and receive support. RESEARCH AND ALS PAGE 84 06 Research and clinical trials. ADDITIONAL RESOURCES PAGE 88 07 Additional reading suggestions are organized by topic. While every effort has been made to provide up-to-date content at the time of publication, certain information – particularly in the area of research and clinical trials – may change faster than we can update the guide. To stay updated, please refer to the ALS Society in your province and ALS clinical specialists from time to time for new information. Disclaimer: The information in this publication has come from sources that the ALS Society of Canada deems reliable and is provided for general information purposes only. It is not intended to replace personalized medical assessment and management of ALS. The ALS Society of Canada disclaims any liability for the accuracy thereof, and does not intend to disseminate either medical or legal advice. Throughout this publication, people with ALS are advised to consult with healthcare and legal professionals for medical and legal advice, respectively. ALS GUIDE 3 ALS GUIDE SECTIONS SUB SECTIONS 01 MY ALS SOCIETY 02 ABOUT ALS 2A What the Name Means 2B How ALS Affects the Body 2C How do You Get ALS? What Are the Risk Factors? 2D Diagnosing ALS 2E Spinal/Limb Onset ALS 2F Bulbar Onset ALS 2G ALS and Cognitive Changes 03 AFTER THE DIAGNOSIS First Steps: 3A Register with Your local ALS Society 3B Communicating the News Throughout the disease: 3C Strategies for Coping with ALS 3D Strategies for Helping Children Cope with ALS 3E Participating in the ALS Community 3F Your Healthcare Team 3G Planning for Your Illness 3H Financial, Social and Legal Assistance 04 LIVING WITH ALS 4A Overview 4B Tools for Staying on Track 4C Mobility and Independence 4D Swallowing, Nutrition and Oral Health 4E Speech, Communication and Assistive Devices 4F Breathing 4G Cognitive Changes 4H Relationships and Intimacy 4I End of Life and Advance Care Planning ALS GUIDE 4 ALS GUIDE SECTIONS SUB SECTIONS 05 FOR CAREGIVERS 5A Who Caregivers Are and What They Do 5B You Are Not Alone 5C Recognizing and Understanding Common Caregiver Emotions 5D Compassion Fatigue 5E Reducing Caregiver Stress and Compassion Fatigue 5F Taking Care of Yourself 5G Supports and Services for Caregivers 5H Dealing with Bereavement 5J Beyond Bereavement 06 RESEARCH AND ALS 6A Overview 6B Clinical Trials 6C Research Partners 6D Genetics and Research 07 ADDITIONAL RESOURCES ALS GUIDE 5 ALS GUIDE 1.0 MY ALS SOCIETY ABOUT US The ALS Society of Canada We work with the ALS community to improve the lives of people affected by ALS through community-based support in Ontario, advocacy and investment in research for a future without ALS. Our values permeate and guide the work that we do: ACCOUNTABILITY, COLLABORATION, COMPASSION, INTEGRITY, RESILIENCY, AND RESPECT. Our Location 393 University Avenue, Suite 1701 Toronto, ON M5G 1E6 Our Contact Information Tel: 416-497-2267 Toll free: 1-800-267-4257 Fax: 416-497-8545 Email: [email protected] ALS GUIDE 6 ALS GUIDE OUR CLIENT SERVICES PROGRAMS Regional managers Education, information, and resources ALS Canada has a team of regional managers in People living with ALS/MND and their families often communities across the province who assist people ask for information about the disease, ongoing and families living with ALS/MND in navigating their research, and the support services that are available journey. They do this through: to them. They also ask for help with access to • In-home visits, phone calls, emails, and virtual assistive equipment, home care, and other support. connections to discuss individual and family needs ALS Canada strives to be a leader in obtaining and • Providing emotional and educational support providing information relevant to ALS/MND and • Acting as a liaison between people living with ALS/ about services available to those affected by the MND and healthcare and community services disease. We offer a number of resources, from • Participating in multidisciplinary ALS/MND clinics print material such as this ALS Guide and fact when possible to provide additional support to clients sheets, to free research-focused webinars. For • Advocating on behalf of clients and their families more information and access to these resources, when they need assistance and when they have contact your ALS Canada regional manager or visit concerns during their ALS/MND journey als.ca/guide-resources. Support groups Advocacy ALS Canada hosts support groups across the province At ALS Canada, we see firsthand and understand the in select communities so that people living with ALS and tremendous impact of an ALS diagnosis–physically, their caregivers can share experiences and emotions psychologically and financially–and they reinforce with people in similar situations. Support groups are a the need for better government support and access great opportunity for people living with ALS and their within the health care system. caregivers to learn from each other. Depending on the That is why we engage with officials in the federal and area, support groups may be caregiver only, client only, Ontario governments to represent the voices and or a mixed client-caregiver group. To find the closest experiences of people living with ALS. We advocate support group to you, contact your ALS Canada regional for policy changes that will have a meaningful impact manager or visit als.ca/guide-regional. on people living with ALS today and in the future, including equitable, timely and affordable access to therapies, improved home and community care, Assistive equipment program research funding and more. ALS Canada offers an Assistive Equipment Program to We also engage at the local level with health care help clients continue living safely and comfortably in their providers and agencies to help the people we homes. The program is made up of three sub-programs: support access services and other resources that the Equipment Loan Program, the Equipment Funding can lessen the burden of living with ALS. To learn Assistance Program, and the Flexible Funding Program. more about our advocacy initiatives, visit als.ca/ For more detail on each program and how to access guide-advocacy.
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