Our Programs and Services for People with ALS, Caregivers and Healthcare Professionals

The Amyotrophic Lateral Sclerosis Society of Quebec is dedicated to improving the lives of people living with ALS and supporting their caregivers. Through our close collaboration with healthcare partners, we are able to offer a variety of programs and services that are complementary to those offered by other organizations.

The needs of people living with ALS and their caregivers change during all stages of the disease, which is why the ALS Society of Quebec offers many different services. Through documentation, conferences, newsletters and a website, people with ALS, caregivers and healthcare professionals can learn more about issues with regard to ALS. A team of dedicated psychosocial counselors offers support to each member of the Society: through orientation meetings, support groups, phone support meetings and a toll-free support line. Social and networking activities help reduce social isolation felt by many.

Please note that in order to have access to our services, you need to be registered as a member.

To register

Please select the registration form that corresponds best to your profile:

Information on ALS

Conferences

In 2015, 15 conferences and 9 regional phone meetings have been held. Topics generally include research, nutrition, caregivers and many more! Be sure to subscribe to our Calendar newsletter to be the first to know about our upcoming conferences.

Documentation

Manual for people living 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, manage ALS care and cope with the progression of the disease which in some cases can be rapid.

Fact sheets

Source: ALS Society of Canada

10 Facts About ALS  ALS Fact Sheet ALS, First Steps
Bulbar ALS ALS, MS and MD 10 Facts about Pain and ALS
When Speaking About ALS ALS Ways to Help Primary Lateral Sclerosis (PLS)
Clinical Trials Caregiver Stress Assisting Families Living with ALS
Reducing Stress Coping with Grief Compassion Fatigue
Spinal Muscular Atrophy Ventilation: Options and Decision Making Kennedy’s Disease
The Dangers of Unproven Therapies Natural Health Products Alternative Treatments
Natural Health Products—Understanding Complementary or Alternative Medicine Complementary Therapies Sexuality, Intimacy and Chronic Illness
ALS and Cognitive Changes Genetic Testing for ALS

Resources for Youth

The following booklets are available to help teens and children whose life is affected by the disease of a loved one.

Information on bereavement

Coping with Grief

This resource will help you understand the grieving process and assist you in your own experience with loss.

Information for Physicians

Guide to ALS Patient Care for Primary Care Physicians

To ensure that ALS patients receive the highest quality care, it is important for primary care physicians to be well informed about the disease, and to work with a team of specialists for their patient’s care.

This guide will help physicians:

  • recognize the signs and symptoms of ALS
  • understand ALS progression, symptom management, changing patient needs, and the importance of interdisciplinary ALS care
  • help patients and caregivers cope with this very complex and progressive neuromuscular disease

Newsletters

We send out two types of newsletters to keep you informed about our upcoming events and news from the ALS community.

InfoXpress: Monthly Events Calendar

Be among the first to know about our upcoming events! The InfoXpress is sent once a month and lists all our upcoming activities for our members, such as support groups, social activities, conferences and fundraisers.

Centaurea: Quarterly bulletin

The Centaurea is our quarterly newsletter and features inspiring stories of people touched by ALS, as well as researchers profiles, research news, our major fundraising events and different ways you can get involved for the cause!

Psychosocial Support

Orientation and reference

The ALS Society of Quebec offers its members personalized psychosocial support. Our team of four psychosocial counselors are dedicated to helping you and your loved ones during all stages of the disease.

Toll-free line

Contact us at 514 725-2653 (or toll-free in Quebec 1 877 725-7725) to speak to a psychosocial counselor or schedule an appointment. Our team of counselors can answer your questions and concerns, as well as those of your family.

Support groups

We organize monthly social and support activities such as outings, support groups, and conferences. These informal and friendly events are perfect to meet and exchange with people going through a situation similar to yours. Visit our Events Calendar to browse our upcoming events.

Teleconferences

In order to reach as many people throughout the province as possible, we offer many phone conferences.

Here are some upcoming events that may interest you:

Oct
25
Wed
Conference: exercising and ALS @ The ALS Society of Quebec
Oct 25 @ 13:30 – 15:00
Conference: exercising and ALS @ The ALS Society of Quebec | Mount Royal | Quebec | Canada

All are invited! You will be able to have a general idea on the sort of exercises you can do depending on the stage of the illness, including cardio-respiratory exercises, strengthening and flexibility exercises. You will also learn when to stop doing certain exercises and to replace it with something more appropriate.

At the end of this presentation you will have answers to the following questions:

– Can I exercise?
– What is the realistic outcome I can expect from exercising?
– Are there any risks involved in some exercises?

Guest speaker: Nathalie Langevin, physiotherapist from the CISSS de la Montérégie Centre
Time: 1:30pm to 3:00pm
Location: The ALS Society of Quebec Office
Registration: Elizabeth at 514 725-2653, ext. 103 or ebarbosa@sla-quebec.ca

Oct
26
Thu
Phone meeting
Oct 26 @ 13:30 – 15:30
Phone meeting

We are happy to announce regional phone meetings for people with ALS, caregivers and healthcare professionals. Meet other people touched by ALS in your region. Discuss, share your feelings and concerns and talk about your journey in a safe environment.

Bas St-Laurent & Gaspésie Îles-de-la-Madeleine

When: Thursday September 28th from 1:30pm to 3:30pm

Saguenay Lac St-Jean, Capitale nationale & Chaudière-Appalaches (in French)

When: Thursday October 26th, from 1:30pm to 3:30pm

Registration:  Elizabeth at ebarbosa@sla-quebec.ca or 1 877 725-7725 ext. 103

For more more information please contact our psychosocial counselor Yves Lafleur by email ylafleur@sla-quebec.ca or telephone at 1 877 725-7725 ext: 107

Oct
31
Tue
Support Group – Monteregie @ Centre Montérégien de Réadaptation
Oct 31 @ 13:30 – 15:30

Have you been touched by amyotrophic lateral sclerosis? Would you like to share and exchange with others who understand your experience with ALS?

Two groups are offered simultaneously: one for the people with ALS and one for caregivers. The purpose of this dedicated time and space is to share your experiences, discuss your concerns, and exchange information and resources with others. Our psychosocial counselors are bilingual are available to translate as required.

  • Free parking, accessible for people with reduced mobility
  • Possibility of reimbursement for travel and respite expenses to facilitate participation
  • Drink and snack included

Rooms: Longueuil for caregivers and Montérégie for people with ALS

* Possibility of cancellation if 3 or fewer people register

Logo_Appui

Nov
6
Mon
Support Group by NOVA West Island
Nov 6 @ 18:00 – 20:00
Support Group by NOVA West Island @ Beaconsfield | Québec | Canada

ALS caregiver support Group

In partnership with Nova West Island and with the generous support of the Tony Proudfoot Fund, monthly meetings are organized with fellow ALS caregivers to discuss some of the challenges each are facing. Although each person engages according to their comfort level, caregivers are encouraged to participate by sharing their personal experiences with others who are in a similar situation.

When: The 1st Monday of every month from 6-8 pm

Where: 447 Beaconsfield Blvd. Beaconsfield, H9W 4C2

Nova West Island will provide free of charge:

  • Two experienced home care nurses to facilitate the group
  • Health Care Aides, for home support, [in our catchment area] to facilitate the caregivers attendance at the meetings

Possible topics and guest speakers:

  • Home adaptation
  • Community resources
  • Insurance coverage
  • Compassionate Benefits
  • Spiritual guidance
  • Social worker/Family Therapist
  • Children Support

For more information or to register, please contact Viviane Schami at 514-695-8335, ext. 209 or e-mail vschami@novawi.org

Nov
8
Wed
Regional conference on ALS: Laval @ CLSC Ste-Rose
Nov 8 @ 13:30 – 17:00

Better understand Amyotrophic Lateral Sclerosis

Conference for people living with ALS, their loved ones and healthcare professionals 

Location: CLSC de Ste-Rose, 280, boul. du Roi-du-Nord, Laval, QC H7L 4L2, Room: 903 (in the basement)
Time: 1:30pm to 5:00pm
Registration: Elizabeth Barbosa at 514 725-2653 extension 103 or ebarbosa@sla-quebec.ca

Schedule

1:30pm Presentation of services offered by the ALS Society of Quebec

1:45pm: Understanding ALS with Dr Geneviève Matte, neurologist

3:15pm: Q&A session

3:30pm:
 Break

3:45pm:
Respiratory difficulties in ALS: a global approach to a better understanding and control, with Jean Bilodeau, clinical nurse (B.Sc.Inf.)

5:00pm: End

About the guest speakers

Dr Geneviève Matte

Dr Geneviève Matte, neurologist

Dr. Geneviève Matte  is a neurologist specializing in neuromuscular diseases at the Centre Hospitalier de l’Université de Montréal (CHUM) (Hôpital Notre-Dame).

Jean Bilodeau, clinical nurse

Jean Bilodeau, clinical nurse

Jean Bilodeau is a clinical nurse and  a guest speaker for the ALS Society of Québec and a home ventilation consultant for complex respiratory issues.

Social activities and networking events

We organize three types of social activities and networking events.

  • Support and education events
  • Social activities
  • Fundraising activities

Here are our upcoming events

Oct
25
Wed
Conference: exercising and ALS @ The ALS Society of Quebec
Oct 25 @ 13:30 – 15:00
Conference: exercising and ALS @ The ALS Society of Quebec | Mount Royal | Quebec | Canada

All are invited! You will be able to have a general idea on the sort of exercises you can do depending on the stage of the illness, including cardio-respiratory exercises, strengthening and flexibility exercises. You will also learn when to stop doing certain exercises and to replace it with something more appropriate.

At the end of this presentation you will have answers to the following questions:

– Can I exercise?
– What is the realistic outcome I can expect from exercising?
– Are there any risks involved in some exercises?

Guest speaker: Nathalie Langevin, physiotherapist from the CISSS de la Montérégie Centre
Time: 1:30pm to 3:00pm
Location: The ALS Society of Quebec Office
Registration: Elizabeth at 514 725-2653, ext. 103 or ebarbosa@sla-quebec.ca

Oct
26
Thu
Phone meeting
Oct 26 @ 13:30 – 15:30
Phone meeting

We are happy to announce regional phone meetings for people with ALS, caregivers and healthcare professionals. Meet other people touched by ALS in your region. Discuss, share your feelings and concerns and talk about your journey in a safe environment.

Bas St-Laurent & Gaspésie Îles-de-la-Madeleine

When: Thursday September 28th from 1:30pm to 3:30pm

Saguenay Lac St-Jean, Capitale nationale & Chaudière-Appalaches (in French)

When: Thursday October 26th, from 1:30pm to 3:30pm

Registration:  Elizabeth at ebarbosa@sla-quebec.ca or 1 877 725-7725 ext. 103

For more more information please contact our psychosocial counselor Yves Lafleur by email ylafleur@sla-quebec.ca or telephone at 1 877 725-7725 ext: 107

Oct
28
Sat
Odanak traditional Autumn Pow-Wow @ Odanak Community Center
Oct 28 @ 12:30
Odanak traditional Autumn Pow-Wow @ Odanak Community Center  | Odanak | Québec | Canada

Welcome to Odanak

On Saturday, October 28th, come discover the cultural richness of the First Nations from the Odanak traditional autumn Pow wow. An event opens to all! Benefits will be given to the ALS Society of Quebec.

Grand entry at 12h30

Restaurant and Abenaki crafts kiosk on site.

Host Drum: Buffalo Hat Singers (others to be announced)

Head female dancer: Nathalie Hamel (jingle dancer, Odanak)

Head male dancer: Luc O’bomsawin (men’s traditional, Odanak)

Odanak flag and Eagle staff carrier: John Watso (Odanak)

Arena Director: Ray Deer (elder from Kanahwake)

Head Veteran: Moogly Hamel (Canadian armed forces)

 

Voluntary contribution to cover the honorarium of the drummers.

For more information, contact Jacques T. Watso at 450-494-1265 or at JACKOWATSO@hotmail.com  or Catherine Boivin at 819-692-4690.

Oct
30
Mon
Benefit conference: The Quebec Bridge @ Maison des aînés de Lévis, salle Marguerite-Poiré
Oct 30 @ 19:30
Benefit conference: The Quebec Bridge @ Maison des aînés de Lévis, salle Marguerite-Poiré | Lévis | Québec | Canada

To mark the 100th anniversary of the Quebec Bridge,
the ALS Society of Quebec
invites you to a conference by Michel L’Hébreux titled:

“The Quebec Bridge: An Exceptional Bridge with a Fascinating History”

Today, still, the Pont de Québec, or Quebec Bridge, is the longest cantilever bridge in the world. Michel L’Hébreux, author of a history of this exceptional bridge, will be giving a lecture on the bridge illustrated with over 400 period photographs. It will be a unique opportunity for attendees to learn more about the bridge, often described as a world wonder. Every aspect will be covered: history, collapse, related myths, titles of nobility, the dangerous work performed by the workers, and maintenance issues.

An event not to be missed!

Location:  Maison des aînés de Lévis, salle Marguerite-Poiré

10 rue Giguère, Lévis  G6V 1N6

Date:          Monday, October 30, 2017 at 7 :30 p.m.

Cost:          $10 per person (the purchase of the ticket is not included in a donation made online)

If you can’t attend the event, you can still make a donation to support their project!

Visit the event’s Facebook page for more details

All proceeds will be donated to the ALS Society of Quebec.

Oct
31
Tue
Book Sale
Oct 31 all-day
Book Sale

Reading for the cause!

The ALS Society invites you to purchase the fantastic and historical french novel “Longtinonda L’intégrale” from Ad Vitam publishing. For each book sold, $ 2 will be donated to support the ALS Society of Quebec.

Come experience an unusual adventure with a character that travels through time. The many historical references will make you rediscover the history of mankind.

We thank you in advance to those who will participate in the project of “Reading for the cause”. Note that you can also make a donation without the purchase of a book!

For further information, please visit: www.leseditionsadvitam.com

Support Group – Monteregie @ Centre Montérégien de Réadaptation
Oct 31 @ 13:30 – 15:30

Have you been touched by amyotrophic lateral sclerosis? Would you like to share and exchange with others who understand your experience with ALS?

Two groups are offered simultaneously: one for the people with ALS and one for caregivers. The purpose of this dedicated time and space is to share your experiences, discuss your concerns, and exchange information and resources with others. Our psychosocial counselors are bilingual are available to translate as required.

  • Free parking, accessible for people with reduced mobility
  • Possibility of reimbursement for travel and respite expenses to facilitate participation
  • Drink and snack included

Rooms: Longueuil for caregivers and Montérégie for people with ALS

* Possibility of cancellation if 3 or fewer people register

Logo_Appui

Nov
6
Mon
Support Group by NOVA West Island
Nov 6 @ 18:00 – 20:00
Support Group by NOVA West Island @ Beaconsfield | Québec | Canada

ALS caregiver support Group

In partnership with Nova West Island and with the generous support of the Tony Proudfoot Fund, monthly meetings are organized with fellow ALS caregivers to discuss some of the challenges each are facing. Although each person engages according to their comfort level, caregivers are encouraged to participate by sharing their personal experiences with others who are in a similar situation.

When: The 1st Monday of every month from 6-8 pm

Where: 447 Beaconsfield Blvd. Beaconsfield, H9W 4C2

Nova West Island will provide free of charge:

  • Two experienced home care nurses to facilitate the group
  • Health Care Aides, for home support, [in our catchment area] to facilitate the caregivers attendance at the meetings

Possible topics and guest speakers:

  • Home adaptation
  • Community resources
  • Insurance coverage
  • Compassionate Benefits
  • Spiritual guidance
  • Social worker/Family Therapist
  • Children Support

For more information or to register, please contact Viviane Schami at 514-695-8335, ext. 209 or e-mail vschami@novawi.org

Nov
8
Wed
Regional conference on ALS: Laval @ CLSC Ste-Rose
Nov 8 @ 13:30 – 17:00

Better understand Amyotrophic Lateral Sclerosis

Conference for people living with ALS, their loved ones and healthcare professionals 

Location: CLSC de Ste-Rose, 280, boul. du Roi-du-Nord, Laval, QC H7L 4L2, Room: 903 (in the basement)
Time: 1:30pm to 5:00pm
Registration: Elizabeth Barbosa at 514 725-2653 extension 103 or ebarbosa@sla-quebec.ca

Schedule

1:30pm Presentation of services offered by the ALS Society of Quebec

1:45pm: Understanding ALS with Dr Geneviève Matte, neurologist

3:15pm: Q&A session

3:30pm:
 Break

3:45pm:
Respiratory difficulties in ALS: a global approach to a better understanding and control, with Jean Bilodeau, clinical nurse (B.Sc.Inf.)

5:00pm: End

About the guest speakers

Dr Geneviève Matte

Dr Geneviève Matte, neurologist

Dr. Geneviève Matte  is a neurologist specializing in neuromuscular diseases at the Centre Hospitalier de l’Université de Montréal (CHUM) (Hôpital Notre-Dame).

Jean Bilodeau, clinical nurse

Jean Bilodeau, clinical nurse

Jean Bilodeau is a clinical nurse and  a guest speaker for the ALS Society of Québec and a home ventilation consultant for complex respiratory issues.

Nov
21
Tue
Support Group – Quebec City @ Centre Noël-Brulart, rooms #107 and #104
Nov 21 @ 13:30 – 15:30
Support Group - Quebec City @ Centre Noël-Brulart, rooms #107 and #104 | Québec | Québec | Canada

Two support groups take place simultaneously in the Quebec City region: the first group is intended for caregivers and the second group is for people with ALS. (Free parking)

Date and time: Tuesdays, from 1:30pm to 3:30pm. 
Location: Centre Noël-Brulart (1229, Chanoine-Morel, Quebec, G1S 4B1)
Room 107 for caregivers and Room 104 for people with ALS
Registration: Odette Lacroix  418-626-8726 or 418-655-8726

Nov
30
Thu
Support group – Laurentides @ Centre Culturel Louis St-Laurent
Nov 30 @ 10:00 – 12:00
Support group - Laurentides @ Centre Culturel Louis St-Laurent | Lorraine | Québec | Canada

You are invited to join one of our open support groups: there will be one for people with ALS and another for caregivers. Coffee, juice and snacks will be offered. You may bring a cold lunch.

Technical Aid And Financial Assistance

The ALS Society of Quebec facilitates the rental of equipment that helps improve the quality of life for people with ALS but that is not provided free of charge under the provincial healthcare system. In cases of urgent need, the Society can defray purchasing or rental costs for certain equipment that the patient requires immediately, but that the concerned institution cannot immediately provide.  The Society also has programs related to minor home adaptations and financial contributions towards services not normally covered by any governmental program.  Please note that any request for financial aid must come from a health professional.

To find out more about the programs, please contact us.

Financial contribution for respite

Caring for the caregiver: Respite Care Pilot Program aims to support families of people living with ALS

RespiteIn December 2014, the ALS Society of Quebec conducted a CROP survey with its members—people living with ALS, their caregivers and healthcare providers—to get feedback on the Society’s services and determine their most pressing needs. One of the main findings of the survey was the need for respite care. Feedback from the survey showed that not only is respite care a vital issue, but that it means different things to different people. ALS is a complex disease and family members can have very different needs at various stages. Our new respite care program is designed to support families in meaningful ways that will complement the services already available to them.

The Respite Care Program is being launched thanks to the hugely successful Ice Bucket Challenge (IBC) in 2014, which coincides with ALS Society of Quebec board member, Chantal Lanthier`s proposal for such a program, shortly before the IBC made headlines.

How the program works

Families must request respite care services through their CLSC (social worker or occupational therapist); a form to request reimbursement will be made available to members. Any questions about the program may be sent to Kate Busch at the ALS Society of Quebec

Initially, the Respite Care Program will take the form of a six-month pilot project. Members of the ALS Society of Quebec will be eligible to receive up to $1,500 annually, to reimburse expenses for respite care, in order for those caring for someone with ALS to find additional support or the opportunity to take a break from their ongoing responsibilities. Diane Tkalec, ALS Society of Quebec board member and Respite Care Program committee member explains that the idea is to help maintain health and wellness by reducing stress. Not only will funds be provided, but families will be able to choose the services that suit their specific needs. Examples include getting help from local homecare providers for days, nights or weekends or spending time at an adapted care facility.

francais-carrousel-web

Every August until a cure

Oct 25 @ 13:30 – 15:00 The ALS Society of Quebec
All are invited! You will be able to have a general idea on the sort of exercises you can do depending on the stage of the illness, including cardio-respiratory exercises, strengthening and flexibility exercises. You[...]
Oct 26 @ 13:30 – 15:30
We are happy to announce regional phone meetings for people with ALS, caregivers and healthcare professionals. Meet other people touched by ALS in your region. Discuss, share your feelings and concerns and talk about your[...]
Oct 28 @ 12:30 Odanak Community Center
Welcome to Odanak   On Saturday, October 28th, come discover the cultural richness of the First Nations from the Odanak traditional autumn Pow wow. An event opens to all! Benefits will be given to the[...]
Oct 30 @ 19:30 Maison des aînés de Lévis, salle Marguerite-Poiré
To mark the 100th anniversary of the Quebec Bridge, the ALS Society of Quebec invites you to a conference by Michel L’Hébreux titled: “The Quebec Bridge: An Exceptional Bridge with a Fascinating History” Today, still,[...]