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Neurorehabilitation and Neural Repair
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Ventilator Dependency in ALS: Management, Disease Progression, and Issues of Coping

Mark B. Bromberg, MD, PhD

Department of Neurology, University of Utah, Salt Lake City, Utah

Dallas A. Forshew, RN, BSN

Department of Neurology, University of Utah, Salt Lake City, Utah

Sandra Iaderosa, MSW

Department of Social Work, University of Michigan, Ann Arbor, Michigan

Evelyn R. McDonald, RN,, MS

Department of Research and Education, The New Road Map Foundation, Seattle, Washington

The natural progression of amyotrophic lateral sclerosis (ALS) leads to respiratory fail ure and death. Artificial ventilation can prolong the course, leading to extreme degrees of weakness and dependence. Little specific information is available to counsel ALS patients about making the decision for artificial ventilation. In order to gain more infor mation, we visited four ventilator-dependent ALS patients and their primary caregivers. We determined the neurologic state and level of function of the patients and inter viewed their primary caregivers to assess medical care and management needs (both social and financial) and how they were being met. We also administrated question naires to assess the psychological well-being of both patient and primary caregiver and how the relationship between the patient and primary caregiver changed under these circumstances. Key Words: ALS—Artificial ventilation—Disease progression.

Neurorehabilitation and Neural Repair, Vol. 10, No. 3, 195-199 (1996)
DOI: 10.1177/154596839601000306
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