Understanding and Managing ALS (Amyotrophic Lateral Sclerosis)

11. Living with ALS

ALS is a progressive disease and does not have a cure, so interventions mainly focus on functionality, autonomy, and improving quality of life. People with this condition may =visit an ALS clinic every two to three months. At clinic visits, the person's healthcare team will monitor symptoms and, as they progress, help them organize the support and additional care they need. They can make referrals and recommendations for therapists and help order equipment like cough assist machines and non-invasive ventilators when needed. People with ALS can live independently by making lifestyle modifications until their symptoms require increased care. For example, they may need to wear adaptive clothing that does not have zippers or buttons, use self-care products with flip-top lids that are easier to open, or use a transfer board to move from their wheelchair to the bed, toilet, or shower.

Key takeaways

ALS is a progressive neurological disorder that affects motor neurons. Over time, people with ALS lose the ability to perform voluntary movements and breathe on their own. While there is no cure for ALS, medications are available that can slow the progression of the disease. These medications are more effective when taken early, so early disease identification is critical. Current research focuses on understanding why some people get ALS to help doctors figure out how to prevent it as well as slow or stop the progression of the disease, reverse the damage caused by the disease, and use assistive technologies to help those with ALS improve their quality of life.