LANDANI
"Kutaya mawu kwanga kunali kovuta kwambiri chifukwa zinkachitika pang'onopang'ono, ndikumva kuti luso langa lolankhulana latayika komanso nthawi yomweyo kuzunzika kwa kusamvetsetsa kwa omwe akuzungulirani. Izi zidapangitsa kuti pasakhale kulumikizana pakati pa abale ndi abwenzi. Zinalinso zovuta chifukwa zidachitika nthawi yomweyo kuti mavuto omeza amawonekera. Kwenikweni, sitepe iyi ya matendawa ndi yovuta kwambiri chifukwa mudzazindikira zenizeni za matendawa, koma gawo lililonse limakonzekera lotsatira, lomwe ndi lovuta kwambiri: kwa ine, kutaya mphamvu ya kupuma. Umu ndi momwe Fran Vivó, wazaka 34 ndipo adapezeka ndi matenda amyotrophic lateral sclerosis (ALS) kwa zaka zitatu ndi theka, akufotokozera nthawi imodzi yovuta kwambiri ya matenda ankhanza kwambiri omwe amadwala nawo.
Yathu imanena mu mauthenga a WhatsApp olembedwa mothandizidwa ndi owerenga diso, omwe amabala ndi mawu a robotic zomwe amalemba ndi maso ake, kayendetsedwe komaliza ka minofu komwe okhudzidwa amataya.
Bambo ake, Francisco Vivó, amakumbukiranso nthaŵi imene mwana wake anasiya kulankhula: “Fran anali ndi mawu osangalatsa kwambiri, omveka bwino kwambiri. Tonse tinamujambula ndi chikondi chachikulu m'mavidiyo ena abanja ndi mbiri yakale ya moyo wake. Kutaya mawu kwakhala chochitika chomvetsa chisoni kwambiri. Ndikuganiza kuti aliyense amene amakumana ndi zomwe akumana nazo anganene zimenezo. Koma m'matendawa, omwe amathandizira kupita patsogolo kosalekeza kukufika pakuipiraipira kosalekeza, chinthu chimodzi chimachitika: kuti chilichonse cham'mbuyomu sichifunikira. Nthawi zonse muyenera kupempha ndi njira zonse zomwe zilipo panopa ”, akuvomereza.
ALS ndi matenda osokonekera omwe amakhudza ma neurons omwe amatumiza kukhudzidwa kwa mitsempha kuchokera ku Central Nervous System kupita ku minofu yosiyanasiyana ya thupi. Ndi chipolopolo chosatha komanso chakupha chomwe chimayambitsa kufooka kwa minofu yomwe ikupita patsogolo. Ndi matenda omwe amapezeka pafupipafupi m'mitsempha ya neuromuscular enclaves. Chaka chilichonse ku Spain, malinga ndi deta yochokera ku Spanish Society of Neurology (SEN), anthu pafupifupi 700 amayamba kukhala ndi zizindikiro za matendawa. Theka la anthu omwe ali ndi ALS amamwalira pasanathe zaka 3 chiyambireni zizindikiro, 80% m'zaka zosakwana zisanu, ndipo ambiri (5%) zaka zosakwana 95.
Akataya luso lolankhulana, odwala ALS amatha kufotokoza maganizo awo kupyolera mwa owerenga maso (kutsata maso) omwe amabala zilembo kapena mawu omwe amawaloza ndi maso awo ndi liwu lokhazikika la robotic. Ndi chida chofunikira kwambiri kuti mukhale olumikizana ndi dziko lozungulira.
Poyesa kupangitsa kuti kulumikizanaku kukhale kwaumunthu, Irisbond, kampani yaku Spain yomwe ndi katswiri paukadaulo wolondolera maso komanso chizindikiro cha Augmentative and Alternative Communication (AAC), limodzi ndi AhoLab ndi mabungwe ena aku Spain a ELA monga adELA, AgaELA. , ELA Andalucía ndi conELA Confederación, ADELA-CV ndi ANELA, alimbikitsa njira ya #merEgaLAstuvez kuti athandizire ku AhoMyTTS Voice Bank. Mwanjira imeneyi, nzika iliyonse imatha kujambula ndikubwereketsa mawu ake kwa munthu yemwe ali ndi ALS. Ngakhale odwala omwe angopezeka kumene amatha kujambula mawu awo pa chojambulira kuti apitilize kuzigwiritsa ntchito pazida zawo za AAC akataya.
“Ndikofunikira kutulutsanso malingalirowo ndi kamvekedwe ka mawu kuti okhudzidwawo adziŵe bwino lomwe. Kukhala ndi mawu osiyanasiyana oti musankhe kungakhale kolimbikitsa kwambiri. Ndikufuna mawu ondikumbutsa zanga ”, adatsimikiza Fran Vivó.
"Tidapanga izi ndi dipatimenti yofufuza ya UPV yomwe imagwira ntchito zozindikira mawu. Iwo ali ndi pulogalamu yomwe imakulolani kuti mujambule mawu kudzera mu chida chanzeru chochita kupanga ndikupanga banki ya mawu. Aliyense akhoza kulowa mu ndondomekoyi, yomwe ndi yosavuta ", Eduardo Jáuregui, yemwe anayambitsa Irisbond, adafotokozera ABC.
Khalani ndi chomverera m'makutu chokhala ndi maikolofoni ndi chipangizo chokhala ndi msakatuli wosinthidwa kukhala mtundu waposachedwa. Kupyolera mu kulembetsa mwachidule, pa nsanja ya AhoMyTTS, mutha kujambula mawu 100 osiyanasiyana.
Othandizira izi akuyenda kuti anthu ambiri alowe nawo ndikuwonetsetsa, monga wosewera mpira Mikel Oyarzabal kapena chef Elena Arzak, komanso kutchula zisudzo ndi zisudzo ndi mawu odziwika bwino monga María Antonia Rodríguez Baltasar yemwe amatchula Kim. Basinger, Julianne Moore kapena Michelle Pfeiffer; wolengeza komanso wochita mawu José Barreiro; Claudio Serrano, wolengeza ndi wotsatsa malonda kwa Otto wochokera ku The Simpsons, Dr. Derek Shepherd wochokera ku Grey's Anatomy ndipo, ndithudi, Batman mwiniwake wa trilogy ya Christopher Nolan. Aperekanso mawu awo Iñaki Crespo, woyimba mawu a Jason Isaacs ndi Michael Fassbender; José María del Río yemwe adatcha Kevin Spacey, Dennis Quaid, Pocoyo kapena David Attenborough; Dove Porcelain ndi Sarah Jessica Parker; Concepción López Rojo, mawu a Buffy the Vampire Slayer, Nicole Kidman, Salma Hayek, Juliette Binoche kapena Jennifer López.
"Cholinga chake ndikukwaniritsa mabanki ochulukirapo komanso kuti anthu omwe akufunika kuwagwiritsa ntchito athe kuwapeza kwaulere," akutero Jáuregui.
Adriana Guevara de Bonis, pulezidenti wa AdELA (Spanish Association of Amyotrophic Lateral Sclerosis) kwa zaka 16, akuganiza kuti ndi "lingaliro lalikulu". "Ma synthesizer ndi opangidwa mwaluso kwambiri, ali ndi mawu achitsulo osati amunthu. Odwala athu ambiri, kuchokera pamlingo wina, amasiya kuyankhulana. Kukhala ndi mawu omveka awa ndi anthu ambiri, "adatero pokambirana ndi ABC.
Purezidenti wa AdELA akutsimikizira kuti imodzi mwa nthawi zovuta kwambiri zotseka ndi maloko ndi pamene amalephera kulankhula. Iye anati: “N’zosangalatsa kwambiri kuti odwala azitha kulankhula ndi mawu amene akuwadziwa kapena achibale awo.
Kutsata kwamaso kumaphatikizidwa ndi ntchito zoyambira za Unduna wa Zaumoyo ndipo tsopano zili ndi madera kuti ayambe kuyitanitsa kuti zitheke kuti odwala onse a ALS ali ndiukadaulo woti apitilize kuyankhulana. Ngakhale kuchokera ku AdELA amatsutsa kuti Utumiki "umangopereka ndalama 75% ya chipangizo" ndipo 25% iyenera kulipidwa ndi wogwiritsa ntchito. “Tili ndi thumba la mgwirizano chifukwa kwa odwala ambiri ndalamazo sizitheka. Timabwereketsanso zida zaulere ndipo akamaliza kuzigwiritsa ntchito amatibwezera,” akutero Adriana Guevara de Bonis.
Koma wodwala ALS samangofunika luso loyankhulana, komanso kuti azisuntha, malingana ndi gawo lomwe ali nalo: kuchokera ku mipando yamagetsi kupita ku magalimoto oyendetsa galimoto, kuphatikizapo ma vani osinthidwa. "Kafukufuku ayenera kuthandizidwa, komanso njira zowapatsa moyo wabwino", adamaliza motero Purezidenti wa AdELA.
Ndi chimodzi mwazotsimikizira za Fran: "Choyamba ndifunse kafukufuku wochulukirapo, ndipo, pamlingo waukadaulo, kuti zitha kukhala ndi masensa a alamu omwe amakhudzidwa kwambiri ndi kayendedwe ka maso ndikagona pansi osalumikizidwa ndi wowerenga diso. dongosolo, chifukwa pakadali pano ndasiya kale kuyenda, kupatula maso anga”, akutero. “Mwanjira imeneyi akanatha kulankhulana ndi kutidziŵitsa pamene ali ndi chosoŵa ndipo samaikidwa pamaso pa woŵerenga ndi maso, zimenezo zingakhale zofunika,” akuwonjezera motero atate wake.
