Management of bulbar symptoms in amyotrophic lateral sclerosis.

Abstract

The bulbar symptoms of ALS include difficulty with the management of swallowing, saliva, aspiration, and communication. These symptoms originate from the disability of the oropharyngeal muscles and actually represent varying degrees of severity of a single problem. The management of these symptoms requires the concerted effort of a rehabilitation team, which should include a surgeon, speech pathologist, neurologist, psychosocial worker, and dietitian. Early education of the patient and patient's family greatly facilitates successful management of bulbar symptoms. Early recognition of the signs of dysphagia, aspiration, and communicative disability are important in order to provide solutions before severe and possibly life-threatening debilitation occurs. The treatments and techniques presented in this chapter must be applied to each patient on an individual basis. The moral and social decisions regarding the providing or withholding of treatment to ALS patients are difficult ones. It is important, however, to realize that management decisions of ALS patients must deal not only with the quantity of life but also the quality of life. This distinction often falls into a 'gray zone' with management of bulbar symptoms since swallowing difficulties are life-threatening as well as uncomfortable. One of the difficulties that we present ourselves as health care providers in ALS is that, more often than not, our patient is in a noncommunicative position and cannot contribute to treatment decisions. If careful and aggressive care is taken to preserve the communicative abilities of our patients, the difficult situation of making decisions based on the family's inclinations and our own inclinations can be avoided. When we are confronted with a decision to maintain or cease support for a patient, the moral and emotional issues that present can be overwhelming. However, the patient's input, if it were direct and included the ability to express complex thoughts, could often provide the information necessary to make the decisions more clear.