Our Programs and Services for people living 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:

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.

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!

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.

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.

Download the form here

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

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


In 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.

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