Neurological Disease
How do we care for someone with ALS?

Amyotrophic lateral sclerosis, commonly called ALS or Lou Gehrig’s disease, is a progressive disease that affects the nervous system. The disease eventually affects someone’s mobility, independent functioning, communication, swallowing and breathing.

Generally, care for people with ALS includes these considerations:

  • the illness itself;
  • the impact of the illness on daily functioning;
  • planning for care when eating and breathing become difficult;
  • planning for issues arising near the end of life.

In early stages of the illness attention is give to approaches that may slow disease progression. A person with ALS is assessed by a neurologist, who is up to date on the latest medications that may help. The person also may be assessed by a specialized team, which can include a speech-language pathologist, physiotherapist, occupational therapist, and dietician or nutritionist. These health care providers work together to develop a plan that helps the person function as well as possible throughout the course of the illness.

Swallowing difficulties can be addressed by speech-language pathologists, dieticians or nutritionists. They can suggest ways to adjust food texture, and calorie intake as well. There may come a time when someone can’t swallow. At that time a feeding tube or intravenous fluids become options to be discussed. The person with ALS may decide to refuse artificial replacements for eating and drinking, and may choose instead to focus on comfort. This is an individual choice, and each person must decide what’s best for her or him.

If breathing becomes weak, breathing machines or ventilators will likely be offered as possible interventions to help a patient breathe. Two machines are commonly used. One is referred to as Continuous Positive Airway Pressure (CPAP), the other as Bi-level Positive Airway Pressure (BiPAP). Each supplies oxygen through a mask that fits over the face. The oxygen is under pressure, which helps the lungs expand. If breathing becomes even weaker, then a machine called a ventilator may be considered. This delivers oxygen directly into the lungs through a tube placed into the trachea. As with food and fluids, some people may choose to refuse artificial breathing assistance. If so, then the focus of caring for this person is on comfort.

Some people with ALS have pain. This can be controlled with opioids such as morphine, which are adjusted as needed. Opioids also help if someone feels short of breath.

Many important issues arise as the end of life nears, which require decisions by the patient and family. The person with ALS and the family need to make decisions about care, or about other matters. Decision making is best addressed before the need arises, while people still have the strength and capacity to take part in discussions.

Decisions