My experience of living with nonfluent/agrammatic variant primary progressive aphasia: Adaptations and strategies to improve quality of life

Abstract

Primary progressive aphasia is a major clinical presentation of frontotemporal lobar degeneration and is a young-onset disorder characterized by deteriorating language skills. There is currently no cure for primary progressive aphasia, nor is it possible to slow the course of the underlying progressive brain degeneration. Hence the chief goal of treatment is palliative. Although the inability to employ language at one’s previous level represents a significant functional impairment for those affected, there is a dearth of information about how to make meaningful improvements to the quality of life of people in the early stages of primary progressive aphasia. I have a clinical diagnosis, supported by imaging, of the nonfluent/agrammatic variant of primary progressive aphasia and am under the care of a multidisciplinary medical team. This report is based on my ongoing experience and describes the development and implementation of an evolving set of targeted strategies and adaptations designed to enhance the quality of life of a person in the early stages of this disorder.