Many people diagnosed with ALS experience difficulties with communication, especially as the disease progresses. When the motor neurons in the brainstem are affected (bulbar ALS), the muscles used in speech and swallowing are impaired, and speech becomes slurred and difficult to understand.
In a retrospective study of 100 hospice patients with ALS, 28% were anarthric (unable to speak) and 47% were severely dysarthric (slurred speech) at the time of their deaths. Only 25% could speak understandably during the terminal stage of the illness ( alsa.org ).
The ability to speak is one of the basic human abilities and its loss may have strong emotional impact on people with ALS and their caregivers. Grief, anger, confusion, distorted sense of self, and social disconnectedness are among common reactions to the decline of speech function. Currently no treatment exists to maintain and prolong speech in persons with ALS.