Amyotrophic Lateral Sclerosis (ALS)

Amyotrophic Lateral Sclerosis (ALS) is a fatal motor neuron disease which causes the progressive degeneration of nerve cells in the spinal cord and brain. Eventually, those living with ALS will lose the ability to walk, talk, eat, swallow, and breathe. ALS does not affect intelligence or the ability to think, see or hear.

There is no known cure for ALS; this diagnosis is incredibly overwhelming for individuals and families, as there are many challenges and changes to consider.  If you are a health care provider wanting to understand the unique experience of caring for someone with an ALS diagnosis or to learn more about available resources for individuals and their caregivers, then please visit the following websites:

Pallium Canada

Pallium Palliative Pocketbook Chapter 15 – Non-Cancer: Select Issues

Provides a brief overview of clinical presentation as well as symptom management considerations including:

  • Weakness
  • Dyspnea
  • Dysphagia
  • Dysarthria
  • Airway secretions
  • Respiratory failure and support
  • Pseudobulbar affect
  • Pain
  • Bowel Care
  • Muscle fasciculations

ALS Society of Canada

ALS Canada offers a variety of resources for people wanting to learn more about ALS whether they are patients, caregivers, or health care providers including:

  • General information and fact sheets
  • Support services, clinics, and clinical trials by province
  • ALS Guide: A resource for people living with ALS https://als.ca/wp-content/uploads/2020/03/ALS-guide-ON-EN-WEB.pdf
  • Guide to Patient Care for Primary Care Physicians https://als.ca/wp-content/uploads/2017/02/A-Guide-to-ALS-Patient-Care-For
  • Primary-Care-Physicians-English.pdf
  • Best Practice Recommendations
  • ALS Canada Equipment Program
  • Talking to children and youth about ALS

ALS Pathways

These additional resources provide information for patients, caregivers, and health care providers including:

  • Tools specific to ALS such as the ALS Functional Rating Scale–Revised (ALSFRS-R)
  • ALS Podcast: Stop, Listen, and Learn
  • Video Series: provides a candid look on life with ALS as Mike and Carmen discuss the real-life challenges they have encountered since Mike’s ALS diagnosis and the strategies that have helped them throughout their journey.

Resources

  1. Pallium Canada – https://www.pallium.ca/
  2. ALS Canada – https://als.ca/
  3. ALS Pathways – https://www.alspathways.ca/

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PDF – Amyotrophic Lateral Sclerosis (ALS)