KOKOA
"He paʻakikī loa ke kaʻina hana o ka nalo ʻana o koʻu leo no ka mea ua holomua ia, me ka manaʻo i ka nalowale ʻana o koʻu hiki ke kamaʻilio waha a ma ka manawa like ka ʻeha o ka ʻike ʻole ʻia e ka poʻe a puni ʻoe. ʻO kēia kūlana i hoʻokaʻawale i nā kamaʻilio me ka ʻohana a me nā hoaaloha. He mea paʻakikī nō hoʻi no ka mea i ka manawa like e puka mai ana nā pilikia ʻona. ʻOiaʻiʻo, paʻakikī loa kēia ʻanuʻu o ka maʻi no ka mea e ʻike ʻoe i ka ʻoiaʻiʻo o ka maʻi, akā hoʻomākaukau kēlā me kēia pae no ka mea e hiki mai ana, ʻoi aku ka paʻakikī: i koʻu hihia, ʻo ka nalowale o ka hiki ke hanu. ʻO kēia ke ʻano o Fran Vivó, 34 mau makahiki a ʻike ʻia me ka amyotrophic lateral sclerosis (ALS) no ʻekolu a me ka hapa makahiki, wehewehe i kekahi o nā manawa paʻakikī loa o kahi maʻi ʻino loa me ka poʻe i loaʻa iā ia.
ʻO kā mākou haʻi iā ia ma kahi leo WhatsApp i hoʻopaʻa ʻia me ke kōkua o kāna mea heluhelu maka, e hana hou me ka leo robotic i kāna mea i kākau ai me kona mau maka, ʻo ka neʻe hope loa i nalowale ka poʻe i hoʻopilikia ʻia.
Ke hoʻomanaʻo nei hoʻi kona makuakāne, ʻo Francisco Vivó, i ka manawa i hoʻōki ai kāna keiki i ka ʻōlelo ʻana: “He leo ʻoluʻolu loa ʻo Fran, me kahi leo maikaʻi loa. Ua hoʻopaʻa mākou a pau iā ia me ke aloha nui i kekahi mau wikiō ʻohana a me nā hoʻopaʻa moʻolelo o kona ola. ʻO ka nalo ʻana o koʻu leo he mea ʻeha loa ia. Manaʻo wau hiki i nā poʻe a pau e hele i kēlā ʻike ke ʻōlelo i kēlā. Akā i loko o kēia maʻi, ka mea e hoʻomau nei i kahi holomua hiki ʻole i ke kūlana o ka piʻi mau ʻana, hoʻokahi mea e hiki mai ana: ʻo kēlā me kēia kūlana mua e lilo i mea nui. Pono ʻoe e koi me nā ala āpau i loaʻa i kēia mokuʻāina, ”ʻae ʻo ia.
ʻO ka ALS kahi maʻi degenerative e hoʻopilikia i nā neurons e hoʻouna i nā manaʻo nerve mai ka Central Nervous System i nā ʻiʻo like ʻole o ke kino. He enclave ma'i a make loa ia e ho'oulu ai i ka nawaliwali o ka 'i'o. ʻO ia ka maʻi maʻamau maʻamau i ka lua o nā enclaves neuromuscular. I kēlā me kēia makahiki ma Sepania, e like me ka ʻikepili mai ka Spanish Society of Neurology (SEN), ma kahi o 700 mau kānaka e hoʻomaka e hoʻomohala i nā hōʻailona o kēia maʻi. ʻO ka hapalua o ka poʻe me ALS e make ma lalo o 3 mau makahiki mai ka hoʻomaka ʻana o nā hōʻailona, 80% ma lalo o 5 mau makahiki, a ʻo ka hapa nui (95%) ma lalo o 10 mau makahiki.
Ke nalowale ka hiki ke kamaʻilio, hiki i nā poʻe maʻi ALS ke hōʻike iā lākou iho ma o ka poʻe heluhelu maka (eye tracking) e hana hou i nā leka a i ʻole nā huaʻōlelo a lākou e kuhikuhi ai me ko lākou mau maka me ka leo robotic maʻamau. He mea pono loa ia e pili pū me ka honua a puni lākou.
I ka hoʻāʻo ʻana e hana i kēia kamaʻilio kanaka, ʻo Irisbond, kahi hui ma Sepania he loea i nā ʻenehana nānā maka a me kahi hōʻailona ma Augmentative and Alternative Communication (AAC), me AhoLab a me kekahi o nā hui ELA Spanish nui e like me adELA, AgaELA. , ELA Andalucía a me conELA Confederación, ADELA-CV a me ANELA, ua paipai i ka hana #merEgaLAstuvez e hāʻawi i ka AhoMyTTS Voice Bank. Ma kēia ala, hiki i kēlā me kēia kama'āina ke hoʻopaʻa iā lākou iho a hāʻawi i ko lākou leo i kahi kanaka me ALS. Hiki i nā poʻe maʻi i ʻike hou ʻia ke hopu i ko lākou leo ma kahi hoʻopaʻa leo i hiki iā lākou ke hoʻomau i ka hoʻohana ʻana ma kā lākou mau mea AAC ke nalowale lākou.
"He mea nui e hana hou i nā manaʻo me ka leo leo e hiki ai i ka poʻe i hoʻopilikia ke hoʻomaopopo maikaʻi iā lākou iho. ʻO ka loaʻa ʻana o nā leo like ʻole e koho ai he kumu hoʻoikaika nui. Makemake au i kahi leo e hoʻomanaʻo mai iaʻu, "wahi a Fran Vivó.
"Ua hele mai mākou me kēia hana me ka ʻoihana noiʻi UPV e hana ana i nā pilikia ʻike leo. Loaʻa iā lākou kahi polokalamu e hiki ai iā ʻoe ke hoʻopaʻa i nā leo ma o kahi mea hana akamai a hana i kahi waihona huaʻōlelo. Hiki i nā mea a pau ke komo i ke kaʻina hana, he mea maʻalahi, "i wehewehe ʻo Eduardo Jáuregui, ka mea hoʻokumu o Irisbond iā ABC.
Loaʻa wale i kahi headset me kahi microphone a me kahi polokalamu me kahi polokalamu kele pūnaewele i hōʻano hou ʻia i ka mana hou loa. Ma o ka hoʻopaʻa inoa pōkole, ma ke kahua ʻo AhoMyTTS, hiki iā ʻoe ke komo i ka hoʻopaʻa ʻana o 100 mau huaʻōlelo like ʻole.
Ke neʻe nei nā mea hoʻolalelale i kēia hana e hui pū nā poʻe lehulehu a hāʻawi iā ia i ka ʻike, e like me ka mea pāʻani pôpeku ʻo Mikel Oyarzabal a i ʻole chef Elena Arzak, a me nā mea hana dubbing a me nā mea hana keaka me nā leo kaulana e like me María Antonia Rodríguez Baltasar nāna i hoʻopaʻa inoa iā Kim. Basinger, Julianne Moore a me Michelle Pfeiffer; ka mea hoʻolaha a me ka mea hoʻokani leo ʻo José Barreiro; ʻO Claudio Serrano, ka mea hoʻolaha a me ka mea hoʻolaha hoʻolaha no Otto mai The Simpsons, ʻo Kauka Derek Shepherd mai Grey's Anatomy a, ʻoiaʻiʻo, ʻo Batman ponoʻī mai ka trilogy a Christopher Nolan. Ua hāʻawi pū lākou i ko lākou leo ʻo Iñaki Crespo, ka mea hoʻokani leo no Jason Isaacs lāua ʻo Michael Fassbender; ʻO José María del Río nāna i kapa inoa iā Kevin Spacey, Dennis Quaid, Pocoyo a i ʻole David Attenborough; ʻO Dove Porcelain na Sarah Jessica Parker; ʻO Concepción López Rojo, leo o Buffy the Vampire Slayer, Nicole Kidman, Salma Hayek, Juliette Binoche a me Jennifer López.
"ʻO ka pahuhopu ka loaʻa ʻana o kahi panakō nui loa o nā ʻōlelo a hiki i nā poʻe pono e hoʻohana iā lākou ke komo iā lākou me ka manuahi," wahi a Jáuregui.
Manaʻo ʻo Adriana Guevara de Bonis, ka pelekikena o AdELA (Spanish Association of Amyotrophic Lateral Sclerosis) no 16 mau makahiki, he "manaʻo maikaʻi". "He mechanical loa ka synthesizers, me ka leo metala a ʻaʻole kanaka. ʻO ka nui o kā mākou poʻe maʻi, mai kahi pae, hoʻōki i ka hiki ke kamaʻilio. ʻO ka loaʻa ʻana o kēia panakō leo ʻoi aku ka nui o ke kanaka", kuhikuhi ʻo ia i ke kamaʻilio ʻana me ABC.
Ke hōʻoiaʻiʻo nei ka pelekikena o AdELA ʻo kekahi o nā manawa paʻakikī loa no nā laka a me ko lākou kaiapuni ke nalowale lākou i ka hiki ke ʻōlelo. "He mea hauʻoli loa i ka poʻe maʻi ke hiki ke hōʻike iā lākou iho me ka leo a lākou i ʻike ai a i ʻole kekahi o ka ʻohana," wahi āna.
Hoʻokomo ʻia ka nānā ʻana i ka maka i loko o ka waihona o nā lawelawe kumu o ke Kuhina Ola a i kēia manawa aia i nā kaiāulu e hoʻomaka i nā kaʻina hana i lilo i mea ʻoiaʻiʻo e loaʻa i nā maʻi ALS āpau ka ʻenehana e hoʻomau i ke kamaʻilio. ʻOiai mai AdELA ke hoʻohewa nei lākou ʻo ke Kuhina "ʻo 75% wale nō o ka hāmeʻa" a ʻo 25% e uku ʻia e ka mea hoʻohana. "He kālā koʻikoʻi kā mākou no ka mea he nui nā mea maʻi ʻaʻole hiki ke hoʻokaʻawale. Hāʻawi pū mākou i nā mea hana no ka manuahi a i ka pau ʻana o ka hoʻohana ʻana iā lākou e hoʻihoʻi mai iā mākou, "wahi a Adriana Guevara de Bonis.
Akā, ʻaʻole pono ka mea maʻi ALS i ka ʻenehana no ka kamaʻilio ʻana, akā no ka neʻe ʻana, ma muli o ke kaʻina o lākou: mai nā noho uila a hiki i nā kaʻa huki, me nā kaʻa i hoʻololi ʻia. "Pono e kākoʻo ʻia ka noiʻi, akā ʻo ke ala hoʻi e hāʻawi iā lākou i ka maikaʻi o ke ola", i hoʻopau ai ka pelekikena o AdELA.
ʻO ia kekahi o nā manaʻo hoʻopono a Fran: "E noi mua wau no ka noiʻi hou aʻe, a ma ka pae ʻenehana, hiki iā ia ke loaʻa i nā mea ʻike maka e ʻike nui ʻia i ka neʻe ʻana o ka maka no ka wā e moe ana au a ʻaʻole pili i ka mea heluhelu maka. ʻōnaehana, no ka mea, i kēia manawa ua nalowale wau i ka neʻe ʻana o ke kino, koe wale koʻu mau maka," wahi āna. "Ma kēia ala hiki iā ia ke kamaʻilio a haʻi mai iā mākou i ka wā e pono ai ʻo ia a ʻaʻole i waiho ʻia i mua o ka mea heluhelu maka, he mea nui ia," wahi a kona makuakāne.
