Living with ALS

This resource provides information on how to deal with feelings of grief and loss following an ALS diagnosis and as the disease progresses. Grieving is a stressful process that may affect you in ways you didn’t anticipate. Gain the tools to learn how to better cope.

This blog post shares some of the technologies that helped Eddy Lefrançois maintain his personality and independence while living with ALS. Please note that these are personal examples from a person living with ALS and are intended as a resource only. For more information on how to maintain quality of life, please speak with your ALS Canada Community Lead.

This website is a source of information and additional resources for people living with ALS and caregivers. Developed by Mitsubishi Tanabe Pharma Canada, the website provides an overview of ALS, tools to help understand function assessment, tips for caregivers and stories from people and families affected by ALS. The site does not include any information pertaining to specific therapies for ALS.

Early intervention has been shown to prolong survival time and improve quality of life. ALS specialists recommend discussing options before symptom progression is too advanced.

An Occupational Therapist can assess people living with ALS experiencing mobility challenges and prescribe assistive devices that can increase independence and improve quality of life.

Physical therapy may also be recommended for people living with ALS to help with symptom progression. Your healthcare team can assess your needs and assist you with accessing these services.

ALS Canada’s ALS Guide provides additional information.

In Ontario, ALS Canada offers an Equipment Program to help people living with ALS continue living safely and comfortably in their homes.

For more detail on the program and how to access it, please refer to the ALS Canada Equipment Program Overview & Information

If you live outside of Ontario and would like to learn more about access to equipment, please contact your provincial ALS Society.

It is advised that people living with ALS discuss breathing support options with members of their healthcare team. This decision should be made well before breathing function has seriously declined. The decision should also be communicated with their ALS physician and personal healthcare directive so that the care they desire is received if a respiratory crisis occurs.

ALS Canada’s ALS Guide further addresses breathing and ventilation support.

People living with ALS might consider voice banking and assistive devices to facilitate communication as their symptoms progress. Individuals affected by dysarthria (difficulty speaking) should be regularly followed by a speech language pathologist to assess timely interventions and support.

ALS Canada’s ALS Guide further addresses speech, communication and assistive devices for people living with ALS and their families.

As ALS progresses, people living with ALS may encounter progressive difficulty in eating and feeding themselves. They might also be affected by nutrition deficiencies and weight loss, which can affect their digestive system. Some people living with ALS might also experience constipation.

Consultations and regular follow-ups with a dietitian or ALS specialist can help to accommodate dietary changes and address these issues.

To address digestive support in ALS, feeding tubes are devices that can support nutritional needs. This intervention is recommended on an individual basis, usually when a person is experiencing significant difficulties with swallowing, decreased respiratory function with increased risk of aspiration, and/or if they have lost more than 10% of their initial body weight. The decision to have a feeding tube always belongs to the individual, and it should be discussed with their primary care team.

ALS Canada’s ALS Guide further addresses nutrition support and feeding tube information.

While pain is not commonly reported by people living with ALS, some people experience physical pain, joint discomfort, or cramping. Movement exercises and keeping warm can help alleviate the feelings of pain. Medication prescribed by your ALS physician may also be needed in some cases.