My Experience of Living with Nonfluent/Agrammatic Variant Primary Progressive Aphasia: Challenges, Compensatory Strategies and Adaptations

Autor/in	Douglas, Joanne T.
Titel	My Experience of Living with Nonfluent/Agrammatic Variant Primary Progressive Aphasia: Challenges, Compensatory Strategies and Adaptations
Quelle	In: International Journal of Language & Communication Disorders, 58 (2023) 2, S.542-554 (13 Seiten) PDF als Volltext Verfügbarkeit
Zusatzinformation	ORCID (Douglas, Joanne T.)
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1368-2822
DOI	10.1111/1460-6984.12798
Schlagwörter	Aphasia; Neurological Impairments; Diseases; Intervention; Quality of Life; Communication Skills; Language Skills; Barriers + Suchen Sie Ihr Suchwort? Expressive Aphasie; Aphasie; Neurodegenerative Erkrankung; Disease; Krankheit; Lebensqualität; Kommunikationsstil; Language skill; Sprachkompetenz
Abstract	Background: Primary progressive aphasia (PPA) is a rare neurodegenerative brain disorder characterized by declining language ability. There is currently no way to reverse or slow the course of the progressive brain degeneration, nor is there a cure for PPA. Throughout the course of the disease, any treatment must therefore be palliative in nature and should be designed to manage symptoms and improve the quality of life of the affected person. There is little information in the medical literature about strategies to make meaningful improvements to the quality of life of people with PPA written from the perspective of those living with this condition. Aims: I have a clinical diagnosis of the nonfluent/agrammatic variant of PPA (nfvPPA), supported by imaging. In this report I discuss my experience of the progressive loss of language and communication skills, and detail the challenges I have been facing. I also describe how my quality of life has been enhanced by the early initiation of treatment focusing on communication strategies targeted to my specific impairments and designed to support my individual interests and goals. Methods & Procedures: I was fortunate to obtain an early diagnosis from a cognitive neurologist experienced with PPA. From the onset of my language difficulties, I have received excellent personalized care from a multidisciplinary medical team including speech-language pathologists, a cognitive neurologist and other doctors. Main Contributions: My life during the early stage of nfvPPA has been enriched by personalized care focused on supporting the particular activities, interests and goals that are most important and meaningful to me. As my disease has progressed, I have benefited from an evolving range of strategies and adaptations targeted to the specific deficits in the areas of speaking, writing and reading that I have been facing at any given time. In addition, I have adopted methods to enhance the benefit of these language-directed strategies. And I have been employing evidence-based approaches that improve general brain health and thereby indirectly support my language. (As Provided).
Anmerkungen	Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2024/1/01