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008 241120t20242024nyu fo d z eng d
010 _a2024022412
020 _a9781501778346
_qPDF
024 7 _a10.1515/9781501778346
_2doi
035 _a(DE-B1597)9781501778346
035 _a(DE-B1597)697106
040 _aDE-B1597
_beng
_cDE-B1597
_erda
050 0 0 _aRC406.A24
050 4 _aRC406.A24
_bS78 2024
072 7 _aSOC002010
_2bisacsh
082 0 4 _a616.8/39
_223/eng/20240613
084 _aonline - DeGruyter
100 1 _aStavrianakis, Anthony
_eautore
245 1 0 _aCrucible of the Incurable :
_bFacing ALS /
_cAnthony Stavrianakis.
264 1 _aIthaca, NY :
_bCornell University Press,
_c[2024]
264 4 _c2024
300 _a1 online resource (248 p.)
336 _atext
_btxt
_2rdacontent
337 _acomputer
_bc
_2rdamedia
338 _aonline resource
_bcr
_2rdacarrier
347 _atext file
_bPDF
_2rda
490 0 _aExpertise: Cultures and Technologies of Knowledge
505 0 0 _tFrontmatter --
_tContents --
_tPreface FACING AMYOTROPHIC LATERAL SCLEROSIS --
_tAcknowledgments --
_tIntroduction ON LINKING KNOWLEDGE AND CARE FOR ALS --
_tPart 1 KNOWLEDGE --
_t1 THE EMERGENCE OF A DIAGNOSTIC CERTITUDE --
_t2 NOSOLOGICAL INDETERMINATIONS --
_tPart 2 CARE --
_t3 MULTIDISCIPLINARY ALS CARE --
_t4 ALS CLINIC --
_t5 PALLIATIVE CARE CLINIC --
_tPart 3 ONE BY ONE --
_t6 EPISTLES TO ONES --
_t7 PLEA FOR A BLESSING --
_t8 ADVOCATE --
_tConclusion THE INCURABLE AND THE POSSIBLE --
_tNotes --
_tIndex
506 0 _arestricted access
_uhttp://purl.org/coar/access_right/c_16ec
_fonline access with authorization
_2star
520 _aCrucible of the Incurable concerns how people face life with amyotrophic lateral sclerosis (ALS). Anthony Stavrianakis spent a year in clinics and with people living with the illness in the United States. He examines the multiple meanings of care in a context of a chronic, degenerative, one-hundred percent fatal, neuromuscular illness, whose most common duration is between two and five years. How do people diagnosed with ALS continue to "live as well as possible, for as long as possible" in accordance with the normative work at the heart of outpatient ALS care? Crucible of the Incurable shows how those touched by the situation of a person living with ALS bear this problem and this task. Given the sense of certitude around the diagnosis, given past experiences of those aware of its usual progression, and given the uncertainty of the disease's cause and its progression for each specific person; how then do people orient themselves to the experience of life with this illness, how to support those who are confronted with it, and how to provide aid or solace.
538 _aMode of access: Internet via World Wide Web.
546 _aIn English.
588 0 _aDescription based on online resource; title from PDF title page (publisher's Web site, viewed 20. Nov 2024)
650 0 _aAmyotrophic lateral sclerosis
_xPatients
_xCare.
650 0 _aAmyotrophic lateral sclerosis
_xPatients
_xSocial conditions.
650 0 _aAmyotrophic lateral sclerosis
_xPsychological aspects.
650 4 _aANTHROPOLOGY.
650 4 _aMEDICINE & MEDICAL ISSUES.
650 4 _aSOCIOLOGY & SOCIAL SCIENCE.
650 7 _aSOCIAL SCIENCE / Anthropology / Cultural & Social.
_2bisacsh
653 _aEthnography of illness, Neurodegenerative disease diagnosis, Illness narrative, Incurable.
850 _aIT-RoAPU
856 4 0 _uhttps://doi.org/10.1515/9781501778346?locatt=mode:legacy
856 4 0 _uhttps://www.degruyter.com/isbn/9781501778346
856 4 2 _3Cover
_uhttps://www.degruyter.com/document/cover/isbn/9781501778346/original
942 _cEB
999 _c305361
_d305361