Below you will find information that may be useful for people living with ALS, their families and the network of health professionals. The ALS Society of Quebec does not endorse and is not responsible for the information contained on external sites. If you find a resource that you find interesting, tell us about it!
The following is not necessarily an exhaustive or up to date list of resources available. Should you have questions about any of the services or require additional information, please contact the organizations directly. These links are provided as a convenience and should not be construed as a endorsements of any of the organizations.
Source: ALS Canada
Source: Association de la Suisse Romande et Italienne contre les Myopathies (in French only)
- Amyotrophic Lateral Sclerosis
- Living with ALS. The patient, family and society
- Living with ALS, daily life, physiotherapy and caregivers
For People with ALS
The seventh edition of the Manual For People Living with ALS is a useful tool filled with practical advice. Readers will find helpful tips on how to take charge of their health. The Manual can also help stimulate discussions among themselves, their family members and their healthcare providers. The content also deals with managing ALS care and coping with an often rapidly progressive neurological disease.
For a printed version of the Manual, contact the ALS Society of Quebec or the ALS Society in your province.
- understand the healthcare system
- find the information and services you need
- review and evaluate the information you find
- talk with your doctor or healthcare provider
- ask for a second opinion
- manage your condition
- pay for your medication
- participate in a clinical trial
- advocate and ask for the support you need
It should be noted that the information contained in this guide is not intended to replace the medical advice of your healthcare team. It is strictly intended to serve as a guide to what can be a challenging journey.
This guide is filled with recipes developed specifically for feeding tubes and for people experiencing difficulty eating. The authors, a group of Concordia University students, also included guided meditation podcasts. This guide was developed as part of a school project.
For Families and Caregivers
L’appui pour les proches aidants (French only)
|Care-ring Voice Network||Regroupement des Aidantes et Aidants Naturels de Montréal (French only)||Regroupement des aidants naturels du Québec (French only)|
Caregiver Action Network
American association working to improve the quality of life for caregivers. Their recently launched website is presented as a guide for family caregivers of loved ones with rare diseases. Click here to go to their website.
Information Guide for Young People
To help families living with ALS, the ALS Society of Canada has published five guides destined for various audiences: teens, children, parents, schools and health professionals.
Each of these publications has answers to many questions and concerns that may arise from this diagnosis.
Guide for Schools
Guide for Children
Guide for Teens
Parental Information Guide
Guide for Health Professionals
Websites for Young People:
For Healthcare Professionals
Produced by the ALS Society of Canada, this guide is designed to inform primary care physicians treating patient with ALS. This guide will help physicians to:
- recognize the signs and symptoms of ALS
- understand ALS progression, symptom management, changing patient needs, and the importance of interdisciplinary ALS care
- help your patients and caregivers cope with living with this very complex and progressive neuromuscular
Amyotrophic Lateral Sclerosis
By Dr. Robert G. Miller, Dr. Deborah Gelinas, and Patty O’Connor, RN
Dementia and Motor Neuron Disease
By Michael J. Strong
Informa Healthcare (2006)
This book is the single authoritative reference on the current understanding of frontotemporal dementia in ALS.
ISBN : 0415391660
TRAINING AND WORKSHOPS
For a number of years now, Jean Bilodeau, Consultant in Neuromuscular Respiratory Health and Care has hosted a number of information sessions at the ALS Society of Québec.
His presentations at the Montreal ALS office entitled Respiratory Problems: Causes and Potential Solutions for Homecare Use have been hugely successful not only amongst people with ALS and caregivers but with the growing number of healthcare professionals who’ve been attending over the years as well.
We are pleased to inform that Mr. Bilodeau is readily available and willing to adapt and provide 2-hour trainings and/or workshops outside of Montreal to better serve and respond to specific needs within the healthcare network. Consulting and coaching sessions from 60 to 90 minutes with healthcare teams dealing with homecare challenges are also offered.
We thank you for offering a modest honorarium to Mr. Bilodeau given his competence and 20 years experience in his field.
To contact him:
Jean Bilodeau, B.Sc.Inf.
COPING WITH GRIEF
This resource will help you understand the grief process and assist you as you yourself face loss or work through a loss that has already occurred.
WHAT TO DO IN THE EVENT OF DEATH—2013-2014 EDITION
The death of a loved one is a difficult time, during which a number of pressing administrative tasks must be accomplished. The What to Do in the Event of Death guide provides an overview of the main obligations you have to fulfill and the applicable deadlines.
Published by Services Québec, a gouvernement du Québec organization.
Books and Videos
Histoires d’un homme heureux
By Pierre Lacroix
This book is a compilation of several poems and thoughts expressing sometimes distress, but mostly wisdom, hope and even humor. The texts are presented in beautiful watercolor background giving each text a special atmosphere. 76 pages, printed on quality paper and presented tastefully. (French only)
Click here to learn more or to download the order form.
Learning to Fall: The Blessings of an Imperfect Life
By Philip E. Simmons, Ph.D.
In the book Learning to Fall, English professor at Lake Forest, Philip Simmons, tells the story of his own spiritual journey, which began when he was first diagnosed at the age of 35 with ALS, a deadly disease. With humour and wisdom, he answers life’s biggest questions and shows us how to live richly in the face of loss.
ISBN : 073884022
To read an excerpt: www.learningtofall.com Xlibris: www.xlibris.com, or call 1-888-795-4274 (during business hours, EST).
Tuesdays With Morrie
By Mitch Albom
ABC news Presents Morrie Schwartz: Lessons on Living
Tuesdays with Morrie proved to be a highly popular memoir, in which college professor Morrie Schwartz was caught in conversation with former student Mitch Albom. Albom was inspired to write this book after catching Morrie in conversation with Ted Koppel, on his Nightline television show. Attempting to chronicle his dying days on Koppel’s show, Morrie’s recollections are earnest, heartwarming, and a fascinating glimpse into one man’s final moments on the planet. They are presented here, and are both funny and sad in equal measure, with Morrie displaying all his trademark wit despite his failing health due to ALS.
Request a DVD a copy online at www.cuniverse.com or at the library.
ALS Lou Gehrig’s disease
This video is a 30-minute program from “The Doctor is In” a Dartmouth-Hitchcock Medical Center Production. It studies the cases of two people with ALS and a family caregiver. Expert medical and scientific commentary is provided by Lucie Bruijn, PhD, Research Director and Vice President of The ALS Association, and Jeffery Cohen, MD, a neurologist at Dartmouth-Hitchcock Medical Center.
Bearing Witness—Robert Coley-Donohue
This 90-minute film is an in-depth, poignant, and personal look at five years in the life of Robert Coley-Donohue, a Vancouver Island resident who lost his wife to ALS and then received the same diagnosis himself later. The film depicts everyday life for Robert chronicling his progression, the support of his family and friends, the complexity of care, and hope and healing as he prepares to die.
National Film Board of Canada
Making Hard Decisions
Two videos dedicated to the memory of Dr. Barry Smith who died of ALS in June 2001. One video is designed for caregivers, to view either in groups or individually. The second video is designed for healthcare providers. Both come with a study guide.
1-800-542-2164 (toll-free from the U.S.)
1-514-283-9450 (Montreal and international)
The Man Who Learned to Fall
Produced by Beitlel/Lazar Productions Inc. (2004)
This documentary by Garry Beitel features the life of Phil Simmons, gifted writer and eloquent professor, who celebrates the wonders of life even as he is slowly dying of ALS. As his muscles deteriorate and his body becomes increasingly paralyzed, Simmons continues to ‘wrestle joy from heartbreak’ at each stage of his ongoing losses. This film is a personal view of Phil Simmons and his family on their journey together during the last months of his life.
Phil Simmons is the author of Learning to Fall, as described above.
For more information about rates or to order, email Beitel_Lazar@videotron.ca or call 1-514-487-9726.
In partnership with the ALS Society of Quebec, a team made up of information technlologies specialists, occupational therapists and speech pathologists put together the Projet Interconnexion. The Project aims at improving communication for people with ALS, using technologies, such as the iPad.
It is important to note that for the moment, this project is only available at regions covered by the CSSS La Pommeraie and CSSS Haute-Yamaska.
Video and Audio Conferences
La nutrition et la dysphagie dans la SLA – by Véronique Langevin, nutritionist
Directives médicales anticipées et le mandat en prévision de l’inaptitude – by Mrs. Louise Boyd and Mrs. Danielle Chalifoux
Mourir dans la dignité et le projet de loi 52 sur les soins de fin de vie – by Mrs. Danielle Chalifoux
Facteurs de risques environnementaux dans la SLA – by Dr. Benoit Gentil
Les cellules gliales et la jonction neuromusculaire (+ PDF presentation here)- by Dr. Richard Robitaille
Cognition in ALS – by Dr. Michael Strong
Découvertes en génétiques sur la SLA – by Dr Nicolas Dupré, neurologist
La nutrition et la SLA – by Véronique Langevin, nutritionnist
Musicothérapie – by Sandrine Zuyderoff, music therapist
Sclérose latérale amyotrophique et sclérose latérale primaire – by Dr Nicolas Dupré, neurologist
SLA et intimité – by Christine Tremblay, nurse, PhD
Génétique et épigénétique – Nouvelles données pour comprendre et traiter la SLA – by Dr Benoit Gentil, neurologist (+ PDF presentation)
La difference entre la Sclérose Latérale Primaire (SLP) et la Sclérose Latérale Amyotrophique – by Dr Nicolas Dupré, neurologist
Les causes génétiques et environnementales de la SLA – by Dr Nicolas Dupré, neurologist
Le patient au cœur de la recherche – Cafés Scientifiques des IRSC
Quand manger devient un défi – by Geneviève Lapointe, nutritionist and Nadia Bélanger, occupational therapist of the CHU of Québec (Hôpital de l’Enfant Jésus)
Les cellules gliales dans la SLA – Richard Robitaille, Professor, PhD, neuroscience Department, Université de Montréal
Les proches aidants d’aujourd’hui – Mrs. Danielle Chalifoux, president of l’Institut de Planfication des Soins
La recherche actuelle sur la SLA – Dr. Nicolas Dupré, neurologist
Les essais cliniques en cours– Dr. Benoît J. Gentil
Quand manger devient plus compliqué– by Geneviève Lapointe, nutritionist and Nadia Bélanger, occupational therapist , CHU de Québec (Hôpital de l’Enfant-Jésus)
La maladie grave d’un proche vécue par les jeunes – by Marie-Paule Poulin, TS
Tourisme accessible pour tous – by Isabelle Ducharme, Keroul
Transition d’un proche vers l’hébergement – by Sylvie Riopel di RAANM
Connaître les nouvelles directives médicales anticipées pour mieux planifier ses soins – by Mrs. Danielle Chalifoux
The five myths of palliative care – by Teresa Dellar
Communiquer avec un proche atteint de la SLA – by Martine Barrette, speech therapist at the CRDP Le Bouclier
Communication Issues in ALS – by Tiziana di Rocco
Des vacances accessibles, au Québec et ailleurs dans le monde! – by Isabelle Ducharme
Financial and Legal Questions
Institut de planification des soins (French only)
Services Québec – Coping with a Loss of Independance: (French only)
La Chambre des notaires du Québec/Ligne info-juridique (French only)
Répertoire des Centres de Santé et de Services sociaux (CSSS) (French only)
Services Québec—Programme d’adaptation de véhicule (French only)
Leisure and Tourism