LANDELA
“Inqubo yokulahlekelwa izwi lami yayinzima kakhulu ngoba yenzeke ngokuqhubekayo, ngizwa ukuthi ikhono lami lokukhuluma lilahlekile futhi ngesikhathi esifanayo ukuhlupheka kokungezwani nokungaqondi kwabaseduze kwakho. Lesi simo sidale ukunqamuka ezingxoxweni nomndeni nabangane. Kwaba nzima futhi ngoba kwenzeka ngaso leso sikhathi kwavela izinkinga zokugwinya. Eqinisweni, lesi sinyathelo sesifo sinzima kakhulu ngoba uzoqaphela iqiniso lesifo, kodwa isigaba ngasinye silungiselela esilandelayo, okuyinto enzima nakakhulu: esimweni sami, ukulahlekelwa amandla okuphefumula. Lena yindlela u-Fran Vivó, oneminyaka engama-34 ubudala futhi okwatholakala ukuthi une-amyotrophic lateral sclerosis (ALS) iminyaka emithathu nengxenye, achaza ngayo esinye sezikhathi ezinzima kakhulu zesifo esinonya kakhulu kulabo abaphethwe yiso.
Okwethu ukukutshela ngomsindo we-WhatsApp oqoshwe ngosizo lomfundi wakhe wamehlo, okhiqiza ngezwi lerobhothi lokho akubhala ngamehlo akhe, ukunyakaza kokugcina kwemisipha okulahleka kwabathintekile.
Uyise, uFrancisco Vivó, naye ukhumbula isikhathi lapho indodana yakhe yayeka ukukhuluma: “UFran wayenezwi elimnandi kakhulu, elinephimbo elikhangayo. Sonke samqopha ngothando olukhulu kwamanye amavidiyo omndeni kanye namarekhodi omlando wempilo yakhe. Ukulahlekelwa izwi kube yinto ebuhlungu kakhulu. Ngicabanga ukuthi wonke umuntu odlula kulokho okuhlangenwe nakho angakusho lokho. Kodwa kulesi sifo, esisekela intuthuko engenakulungiseka yokuya esimweni esibi njalo, kwenzeka into eyodwa: ukuthi isimo sangaphambilini ngasinye silahlekelwa ukubaluleka. Kufanele ngaso sonke isikhathi ufune ngazo zonke izindlela ezikhona kulesi simo esikhona manje,” uyavuma.
I-ALS isifo esiwohlokayo esithinta ama-neuron adlulisa ama-nervous ama-nervous asuka ku-Central Nervous System aye emisipheni ehlukene yomzimba. Kuyi-enclave engapheli futhi ebulalayo ebangela ubuthakathaka obuqhubekayo bemisipha. Kuyi-pathology evame kakhulu endaweni ye-neuromuscular enclaves. Njalo ngonyaka eSpain, ngokusho kwedatha evela ku-Spanish Society of Neurology (SEN), abantu abangaba ngu-700 baqala ukuthuthukisa izimpawu zalesi sifo. Ingxenye yabantu abane-ALS ifa esikhathini esingaphansi kweminyaka engu-3 kusukela ekuqaleni kwezimpawu, ama-80% ngaphansi kweminyaka emi-5, kanti iningi (95%) lingaphansi kweminyaka eyi-10.
Lapho zilahlekelwa ikhono lokuxhumana, iziguli ze-ALS zingaziveza kuphela ngokusebenzisa izifundi zamehlo (ukulandelela iso) ezikhiqiza kabusha izinhlamvu noma amagama eziwakhomba ngamehlo azo ngezwi elivamile eliyirobhothi. Kuyithuluzi elibalulekile ukuze uhlale uxhumekile nezwe elibazungezile.
Emzamweni wokwenza lokhu kuxhumana kube okobuntu, i-Irisbond, inkampani yaseSpain engungoti wezobuchwepheshe bokulandelela amehlo kanye nebenchmark ku-Augmentative and Alternative Communication (AAC), kanye ne-AhoLab nezinye izinhlangano eziyinhloko ze-ELA yaseSpain ezifana ne-adELA, i-AgaELA. , ELA Andalucía kanye ne-conELA Confederación, ADELA-CV kanye ne-ANELA, bakhuthaze umkhankaso we-#merEgaLAstuvez wokufaka isandla ku-AhoMyTTS Voice Bank. Ngale ndlela, noma yisiphi isakhamuzi singakwazi ukuziqopha futhi siboleke izwi laso kumuntu one-ALS. Ngisho neziguli ezisanda kutholwa zingathwebula izwi lazo kokurekhodiwe ukuze zikwazi ukuqhubeka nokuzisebenzisa kumadivayisi azo e-AAC uma ziwalahlekela.
“Kubalulekile ukukhiqiza kabusha imicabango ngephimbo lezwi labo abathintekile bezokwazi ukuzibona kangcono. Ukuba nenqwaba yamazwi ahlukene ongakhetha kuwo kungaba insiza ekhuthaza kakhulu. Ngingathanda izwi elingikhumbuza eyami,” kugcizelela u-Fran Vivó.
“Siqhamuke nalolu hlelo nomnyango wocwaningo we-UPV osebenza ezindabeni zokuhlonishwa kwezwi. Banohlelo lokusebenza olukuvumela ukuthi urekhode amazwi ngethuluzi lobuhlakani bokwenziwa futhi udale ibhange lamagama. Noma ubani angangena kule nqubo, elula ", u-Eduardo Jáuregui, umsunguli we-Irisbond, wachazela i-ABC.
Iba nehedisethi enombhobho kanye nedivayisi enesiphequluli sewebhu ebuyekeziwe ibe yinguqulo yakamuva. Ngokubhalisa okufushane, endaweni ye-AhoMyTTS, ungafinyelela ukurekhodwa kwemishwana eyi-100 eyahlukahlukene.
Abagqugquzeli balolu hlelo bayanyakaza ukuze abantu abavelele emphakathini bajoyine futhi bakwenze kubonakale, njengomdlali webhola likanobhutshuzwayo uMikel Oyarzabal noma umpheki u-Elena Arzak, kanye nokuqamba abalingisi nabalingisi ngamazwi aziwayo njengoMaría Antonia Rodríguez Baltasar obiza uKim. U-Basinger, uJulianne Moore noma uMichelle Pfeiffer; umsakazi nomlingisi wezwi uJosé Barreiro; U-Claudio Serrano, ummemezeli kanye nomlingisi wokukhangisa we-Otto we-The Simpsons, uDkt. Derek Shepherd waseGrey's Anatomy futhi, kunjalo, u-Batman ngokwakhe ovela ku-trilogy ka-Christopher Nolan. Baphinde banikela ngezwi labo elithi Iñaki Crespo, umlingisi wezwi kaJason Isaacs noMichael Fassbender; UJosé María del Río owabiza uKevin Spacey, uDennis Quaid, uPocoyo noma uDavid Attenborough; I-Dove Porcelain kaSarah Jessica Parker; UConcepción López Rojo, izwi likaBuffy the Vampire Slayer, uNicole Kidman, uSalma Hayek, uJuliette Binoche noma uJennifer López.
“Umgomo uwukuthola ibhange elinemishwana eminingi nokuthi abantu abadinga ukuwasebenzisa bakwazi ukuyithola mahhala,” kusho uJáuregui.
U-Adriana Guevara de Bonis, umongameli we-AdELA (i-Spanish Association of Amyotrophic Lateral Sclerosis) iminyaka engu-16, ucabanga ukuthi "umbono omuhle". “Ama-synthesizer anomshini kakhulu, anezwi eliyinsimbi hhayi elomuntu kakhulu. Iziguli zethu eziningi, kusukela esigabeni esithile, ziyeka ukukwazi ukuxhumana. Ukuba naleli bhange lamazwi kuwubuntu kakhulu”, esho engxoxweni ne-ABC.
Umongameli we-AdELA uqinisekisa ukuthi esinye sezikhathi ezinzima kakhulu zokukhiya kanye nemvelo yabo yilapho belahlekelwa ikhono lokukhuluma. “Kuyajabulisa kakhulu ukuthi iziguli zikwazi ukuveza imizwa yazo ngezwi ezilaziyo noma elelungu lomndeni,” usho kanje.
Ukulandelelwa kwamehlo kufakiwe kuphothifoliyo yezinsizakalo eziyisisekelo zoMnyango Wezempilo futhi manje sekusele emiphakathini ukuthi iqale izinqubo zokubhida ukuze kube yiqiniso ukuthi zonke iziguli ze-ALS zinobuchwepheshe bokuqhubeka nokuxhumana. Nakuba bevela kwa-AdELA bagxeka ukuthi uMnyango "uxhasa kuphela i-75% yedivayisi" futhi i-25% kufanele ikhokhwe ngumsebenzisi. “Sinesikhwama sobumbano ngoba ezigulini eziningi leyo mali ayitholakali. Siphinde siboleke amathuluzi mahhala futhi uma sebeqedile ukuwasebenzisa basibuyisele wona,” kusho u-Adriana Guevara de Bonis.
Kodwa isiguli se-ALS asidingi nje kuphela ubuchwepheshe ukuze sixhumane, kodwa futhi sihambe, kuye ngesigaba esikuso: kusukela ezihlalweni zikagesi kuya emalolini okudonsa, kuhlanganise namaveni ashintshiwe. "Ucwaningo kumele lwesekwe, kuphinde kusekelwe izindlela zokubanikeza izinga lempilo", kuphetha umongameli we-AdELA.
Kungenye yeziqinisekiso zikaFran: "Okokuqala ngizocela ucwaningo olwengeziwe futhi, ezingeni lobuchwepheshe, ukuthi lingaba nezinzwa ze-alamu ezizwela kakhulu ukunyakaza kwamehlo lapho ngilele futhi ngingaxhumekile kumfundi wamehlo. uhlelo, ngoba kulesi sigaba sengivele ngilahlekelwe yikho konke ukuhamba komzimba, ngaphandle kwamehlo ami,” usho kanje. Ngale ndlela ubekwazi ukuxhumana futhi asazise lapho enesidingo futhi engabekwa phambi komfundi wamehlo, lokho bekungabaluleka,” kunezela uyise.
