A GUIDE FOR PEOPLE LIVING WITH ALS
sla-quebec.ca 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
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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.
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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
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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
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1.0 MY ALS SOCIETY WHO WE ARE
Our Name
The ALS Society of Quebec
What We Do
The ALS Society of Quebec offers a wide variety of services to families living with ALS across the province of Quebec. We:
• Provide support and referrals for people with ALS and their loved ones
• Fund research
• Raise awareness of the disease among the general public, government officials, and medical and paramedical practitioners.
Our Values
AS A MEMBER OF THE FEDERATION COUNCIL OF THE ALS SOCIETIES ACROSS CANADA, THE SOCIETY’S VALUES ALIGN WITH THOSE OF OUR NATIONAL PARTNERS AS WE AIM TO WORK WITH COMPASSION, EMPATHY, AND RESPECT THROUGH ETHICAL BEHAVIOUR.
Where We Are
5415 Paré Street, Suite 200 Mount-Royal, QC H4P 1P7
Tel: 514 725 2653
Toll free in Quebec: 1 877 725 7725
Email: [email protected]
Website: http://als-quebec.ca/
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OUR CLIENT SERVICES PROGRAMS
Information
Conferences Documentation Newsletters Resources, website and webinars
Psychological Support
Orientation and reference Bereavement support Toll-free line Support groups Teleconferences
Technical and Financial Aid
Residential adaptation Equipment assistance Financial contribution Respite Financial contribution program for children
Information
Regional information sessions Social activities Online community Online caregiver network
Information, Guidance, and Referrals and which professionals may be involved in our members’ care. Conferences, discussion forums with specialists, and The ALS Society of Quebec welcomes individuals testimonials on relevant topics are offered to people with diagnosed with amyotrophic lateral sclerosis (ALS) or ALS, to their caregivers, and to professionals. For information primary lateral sclerosis (PLS), and their caregivers, on upcoming dates, topics, and locations, please consult our living in the province. We provide general information website at http://als-quebec.ca/. about resources offered through the healthcare The ALS Society of Quebec is committed to accompanying system as well as community and governmental you every step of the way. We offer regular follow-up with resources that are helpful to people living with ALS. families living with ALS throughout the progression of the We help members navigate the healthcare system, illness with the aim of offering support and services that, in offering general information on typical care plans, tandem with those of other organizations, help to meet your including which types of services can be expected specific needs and improve your quality of life.
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Support and Social Activities These modifications are focused on improving entrance and exit access to the home, access and Personalized support is available to all of our members safety modifications of essential spaces to allow throughout their journey with ALS. Whether in the completion of daily activities in a safe manner for form of one-on-one meetings, group gatherings, people who have a permanent disability. social activities, or conferences, we aim to satisfy the • Financial contribution for particular needs: This varying needs of our diverse members throughout annually renewable (November 1 to October the province at different locations, including some 31) maximum contribution of $500 assists hospital-based ALS clinics, Local Community Service with costs of special needs such as massage Centres (CLSCs), and rehabilitation centres. therapy, transportation to medical appointments, Keeping in contact with our members directly helps psychological support, etc. familiarize us with our members’ needs, which we • Financial support for respite services: This annually believe is crucial in helping us to be responsive and renewable (November 1 to October 31) maximum remain relevant. contribution of $1,500 assists with costs for respite home or institutional care and can be used all at Technical and Equipment Assistance once or over several instances. Families choose In covering rental fees or purchase costs for the care provider. This program complements needed equipment such as wheelchairs, scooters, other community caregiving support programs. communication aids, monitoring services, etc., the • To facilitate participation in our social activities and ALS Society of Quebec provides technical support for support groups, costs related to respite services the items not provided by the provincial healthcare or transportation can be covered by the Society. system. Members are encouraged to contact the In certain circumstances, when accessible public ALS Society of Quebec for further information and transit is absent or inadequate, private transport eligibility criteria. costs, taxi costs, or costs incurred by a driver can also be reimbursed. Financial Support • Families with children under 18 years old: An Whether it is by promoting greater balance for annual contribution of $300 per child is available caregivers by helping them take a break, by alleviating for children of a parent diagnosed with ALS so the burden of costs related to life with ALS, or by that children can continue to participate in making life more comfortable by covering some of the extracurricular activities (sports, art classes, music, costs of additional care, the ALS Society of Quebec summer camp, etc.) during their parent’s illness. offers certain financial supports to people with ALS and their families. To qualify for these supports, a Support for Caregivers request must be made on your behalf by a health professional from a CLSC or by a healthcare institution. The ALS Society of Quebec knows that caring for Our programs include the following: someone diagnosed with a neurodegenerative disease is physically and emotionally demanding. From the • Residential adaptation program: This is a one- outset, the Society’s goal has been to help improve the time maximum contribution of $1500 that can quality of life of caregivers, as well as those diagnosed help defray home adaptation costs that are not with ALS, by providing services to support, equip, covered by the Société d’habitation du Québec PAD and refer our caregiver members as needed, thus (Programme d’adaptation de domicile) program. lessening the risk for injuries, exhaustion, depression,
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8 ALS GUIDE anxiety, and stress. By doing so, we help you set the Bereavement support for caregivers stage for a less complicated grieving process. When it comes time for a loved one’s journey to end, We are an ally, an advocate, and a resourceful lifeline the ALS Society of Quebec remains available to provide that ALS caregivers in Quebec can rely upon and trust. respectful and compassionate bereavement support. Our committed team is available to support caregivers Whether a family member or friend is in search of throughout their caregiver journey at every stage of someone to talk to, a resource, or some other kind the disease. We recognize that caregivers devote an of information, our counsellors are there to help. enormous amount of time, energy, focus, and financial If the loss of your loved one has been especially difficult resources to caring for loved ones with ALS, but they and you would like to consult with a professional that can’t do it alone. Providing families with different is specialized in bereavement but are hesitant to options for interactive and specialized support groups, because of the cost, please contact your counsellor training, teleconferences, and webinars with disease- at the ALS Society of Quebec. specific information allows caregivers to break their sense of isolation and share their stories, worries, and frustrations while offering one another emotional comfort and support.
We know that when it comes to a challenging disease such as ALS, one size simply does not fit all. Each caregiver’s path is unique and has its own needs and rhythm. We also strive to work with ALS caregivers on providing access to information and resources so that caregivers are better equipped to maintain their own health and have the energy, knowledge, and ability to meet the day-to-day demands, challenges, and impacts of the illness.
To see more about the ALS Society of Quebec’s caregiver-specific support programs and services, such as our online learning environment, called Taking Care, please consult Section 5g: Supports and Services for Caregivers, or visit our website at http://als-quebec.ca/support-and-services/caregiver/.
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2.0 ABOUT ALS Amyotrophic lateral sclerosis (ALS), often known as Lou Gehrig’s disease, is the most common form of motor neuron disease (MND).
In French, ALS is called sclérose latérale amyotrophique (SLA) or maladie de Charcot. The first full account of ALS symptoms was published in 1874 by Dr. Jean-Martin Charcot, a French neurologist and founder of the field of modern neurology.
Other less common types of MND are primary lateral sclerosis (PLS) and Kennedy’s disease.
Throughout this guide, we will use the shorter abbreviation ALS to refer to ALS/MND.
2A WHAT THE NAME MEANS
Amyotrophic Lateral Sclerosis stands for:
a | absence
myo | muscle
trophic | nourishment
lateral | side (referring to the spine)
sclerosis | hardening or scarring.
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2B HOW ALS AFFECTS THE BODY
ALS affects the motor neurons of your body, causing voluntary muscles to atrophy (deteriorate and weaken). Voluntary muscles are muscles that are under an individual’s conscious control. These muscles include the ones in the arms, such as the biceps and triceps. The muscles of the face, neck, and tongue are also voluntary muscles that allow you to eat, support and move your head, and make facial expressions. Muscles that are not under an individual’s conscious control, such as the heart muscle, are called involuntary muscles.
What are motor neurons?
Figure 1. Nervous system
Central Nervous System