Amyotrophic Lateral Sclerosis (ALS) is a progressive, neurodegenerative disease that essentially causes motor neurons to die, leading to a complete inability to move. ALS is aggressive, and progresses relatively quickly. The average life expectancy after diagnosis is 3 years according to the ALS Association.
Given the quick progression of the disease, SLP support needs to happen and it needs to happen immediately. Most people aren’t aware of the role that SLPs play in the care for individuals with ALS, but like with those with other degenerative diseases (like dementia), SLPs can be a huge part of the care team. How so? Let’s talk about it in (very) brief.
Obviously, SLPs do not diagnose ALS. However, we are pros at identifying voice and speech disorders. There are a few different types of ALS, one of which presents first with what are called “bulbar symptoms,” or symptoms pertaining to nerves that start in the brainstem. For SLPs, this includes symptoms with speech and swallowing. While SLPs might not know outright that an individual’s symptoms are caused by ALS, they will likely refer out to a neurologist if they are unable to help pinpoint the cause of the symptoms. This can lead to a speedier diagnosis, which then leads to treatment.
As with all neurodegenerative diseases, cognitive decline goes hand-in-hand with ALS. SLPs can help prepare the individual for failing memory and behavioral changes that eventually arise. This can include memory strategies (picture books, visual schedules, memory journals, etc.) and modifying environments to make them easier to navigate and less distracting. Most importantly, the SLP will work with the caretakers of the individual to help them adapt their behaviors and responses to the individual with ALS.
Because ALS affects motor neurons, it ultimately impedes the individual’s ability to communicate verbally. Initially, SLPs will work on compensatory strategies for symptoms like hypernasality or strategies for communication breakdowns due to unintelligibility. SLPs will also work on alternative and augmentative communication (AAC) systems with these patients. AAC education begins as early as possible so that the individual can learn a system that they can use throughout the progression of ALS. Systems can include low or no tech communication such as developing a consistent yes/no response system or letter boards. AAC systems could also be high tech devices that have speech generating abilities or eye gaze systems. We’ll talk some more about these later this week and next week.
Just like speaking, swallowing will eventually become difficult for individuals with ALS because of the person’s inability to control their motor movements. SLPs can provide maneuvers to use during swallowing to prevent aspiration, or food going into the lungs. Changes in diet may also be made in order to prevent aspiration (remember puree foods?). However, because of the quick progression of the disease, it’s important to consider comfort and quality of life measures. This can be a bit controversial, and is the choice of the individual and their care takers.
As you can see, speech-language pathologist can play a big role in helping those with ALS. Questions? Have a loved one with ALS? Call your friendly neighborhood SLP!