Updated: Jun 6
May is ALS Awareness Month. ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Approximately 80-95% of individuals with ALS will require the use of AAC to support their communication needs (Beukelman et al., 2011). We at Forbes AAC are proud to support those with ALS!
When providing treatment for individuals with ALS, a three-phase intervention model is recommended (Ball et al., 2007). This intervention model is discussed below.
Early Phase: Monitor, Prepare, Support
This phase occurs during the period from the patient’s initial diagnosis of ALS through the time of referral for an AAC assessment. During this phase clinicians have several responsibilities including monitoring speech for changes, screening for any cognitive decline, and obtaining recordings for voice and message banking for future AAC use.
Additionally, this is an important time for clinicians to be educating and counseling the patient and their family on the expected changes to come related to speech and swallow as part of the ALS diagnosis.
ALS has two typical presentations at disease onset with approximately 70% of patients presenting initially with spinal onset while 30% of patients present with bulbar onset (Wijesekera & Leigh, 2009). Bulbar changes affect speech and swallowing musculature while spinal changes occur when muscle weakness and atrophy occurs in the limbs and trunk.
In the early phase, individuals with spinal-onset ALS may not have speech changes present, however those with bulbar-onset ALS may present with mild changes in speaking rate at the time of diagnosis, so this phase may be very short for them (Beukelman & Light, 2020). Additionally, nearly 85% of patients with spinal-onset ALS exhibit bulbar changes as the disease progresses (Haverkamp et al., 1995).
Middle Phase: Assess, Recommend, Implement
This phase occurs from the time of referral for the AAC assessment until AAC supports are selected, purchased, and initial training is completed.
When should the individual with ALS be referred for an AAC assessment? Research shows that speaking rate reduction occurs before reduction in speech intelligibility (Ball et al., 2002), thus speaking rate is the standard for determining when to refer for an AAC assessment. Ball and colleagues (2002) recommended that an individual with ALS should be referred for an AAC assessment when their speaking rate approaches 125 words per minute.
During the middle phase, the individual with ALS will participate in the AAC evaluation by providing information related to their current and future communication needs. Clinicians must provide education and assessment recommendations related to AAC in addition to recommendations related to assistive technology (AT) and environmental control unit (ECU) supports.
Late Phase: Adapt and Accommodate
The late phase refers to the time after initial AAC intervention until the time of the individual’s death. During this time, modifications in AAC supports are needed to accommodate the changing communication needs of the individual with ALS.
It’s common for those with ALS to be using eye gaze at this time to communicate due to the significant motor deficits they have at this stage.
It is important that the person with ALS is able to communicate effectively and independently at this phase for them to be able to maintain quality of life as well as ensuring they are able to make important end-of-life decisions.
To learn more about ALS Awareness Month, take a look at this blog post from the ALS Association: https://www.als.org/blog/als-awareness-month-how-our-fight-continues
Ball, L., Beukelman, D. R., & Bardach, L. (2007). Amyotrophic lateral sclerosis. In D. R. Beukelman, K. L. Garret, & K. M. Yorkston (Eds.), Augmentative communication strategies for adults with acute or chronic medical conditions (pp. 287–316). Baltimore, MD: Brookes.
Beukelman, D., Fager, S., & Nordness, A. (2011). Communication support for people with ALS. Neurology Research International, 2011, 714693. https://doi.org/10.1155/2011/714693
Beukelman, D. R., & Light, J. C. (2020). Augmentative & alternative communication: Supporting children and adults with complex communication needs (5th ed.). Brookes.
Haverkamp, L. J., Appel, V., & Appel, S. H. (1995). Natural history of amyotrophic lateral sclerosis in a database population validation of a scoring system and a model for survival prediction. Brain, 118(3), 707–719. https://doi.org/10.1093/brain/118.3.707
Wijesekera, L. C., & Leigh, P. N. (2009). Amyotrophic lateral sclerosis. Orphanet Journal of Rare Diseases, 4, 3. https://doi.org/10.1186/1750-1172-4-3
Katie Threlkeld, M.S., CCC-SLP is a licensed, ASHA-certified speech-language pathologist and the Educational Program Developer at Forbes AAC. She has over eight years of experience in AT and AAC assessment and treatment with both the pediatric and adult populations. Katie has presented at the state and national level on AAC topics and she has University teaching experience at the undergraduate and graduate level.