How common is a swallowing disorder?

In 30–40% of all people with ALS, the disease begins with a “bulbar syndrome.” This refers to the involvement of the muscles of the tongue, pharynx, face, and larynx, which are all controlled by the bulbar region of the brain (the lower functional unit of the brainstem). Typically, bulbar syndrome begins with a speech disorder (dysarthria). A few weeks to months after the onset of the speech disorder, a slowly progressive swallowing disorder (dysphagia; “dys” = disorder; “phagein” = to eat) follows.

In rare cases, a swallowing disorder may also be the very first symptom of the disease. Even in patients whose disease begins with paralysis of the limbs, bulbar syndrome and dysphagia may develop as the disease progresses. About 70% of all people with ALS experience swallowing difficulties as the disease progresses.