Nānā MS: ʻO kaʻu moʻolelo diagnostics

Anter

• ʻO Matthew Walker, ʻike ʻia ma 2013
• ʻO Danielle Acierto, ʻike ʻia ma 2004
• ʻO Valerie Hailey, ʻike ʻia ma 1984

"He MS kāu." Inā haʻi ʻia e kāu kauka mālama mua, kāu neurologist, a i ʻole nā ​​mea nui ʻē aʻe, kēia mau huaʻōlelo maʻalahi ʻekolu i ka hopena o ke ola.

No ka poʻe me ka sclerosis (MS) he nui, "poina ʻole ka lā ʻike" hiki ʻole ke poina. No kekahi, he mea hoʻopūʻiwa i ka lohe ʻana ke noho nei lākou i kēia manawa me kahi ʻano mau. No nā poʻe ʻē aʻe, he mea ʻoluʻolu ke ʻike i nā mea e hopena nei i ko lākou mau hōʻailona. Akā ʻaʻohe mea pehea a hiki mai paha, kū hoʻokahi kēlā me kēia lā diagnosis MS.

Heluhelu i nā moʻolelo o ʻekolu mau poʻe e noho nei me MS, a ʻike pehea lākou i hana ai me kā lākou diagnose a pehea lākou e hana nei i kēia lā.

ʻO Matthew Walker, ʻike ʻia ma 2013

"Hoʻomaopopo wau i ka lohe ʻana i ka 'leo keʻokeʻo' a ʻaʻole hiki ke kia i ke kūkākūkā me kaʻu kauka," wahi a Matthew Walker. "Hoʻomaopopo wau i kahi mea a mākou e kamaʻilio ai, akā manaʻo wau e nānā wale ana wau i kahi mau ʻīniha mai kona alo, a me ka hōʻalo ʻana i ka ʻike maka ʻana me koʻu makuahine pū kekahi me aʻu. … Ua unuhi ʻia i loko o koʻu makahiki mua me MS, a me aʻu e lawe ʻole nei i ia mea. ”

E like me nā mea he nui, manaʻo ʻo Walker he MS kāna, akā ʻaʻole ʻo ia i makemake e alo i nā ʻoiaʻiʻo. I ka lā ma hope o kona ʻike kūhelu ʻia, ua neʻe ʻo Walker ma waena o ka ʻāina - mai Bosetona, Massachusetts, a i Kapalakiko, Kaleponi. Ua ʻae kēia neʻe kino ʻana iā Walker e hūnā i kāna hōʻoia ʻana.

"Ua ʻano mau au i kahi puke hāmama, no laila hoʻomanaʻo wau i ka mea paʻakikī loa iaʻu ka makemake e hūnā iā ia," i ʻōlelo ʻo ia. "A ʻo ka manaʻo," No ke aha wau e hopohopo nui e haʻi aku i kekahi? No ka maʻi maikaʻi paha ia? '"

He manaʻo hopohopo nui ia i mau mahina ma hope i alakaʻi iā ia e hoʻomaka i kahi blog a kau i kahi wikiō YouTube e pili ana i kāna kuhi. E hele mai ana ʻo ia mai kahi pili lōʻihi loa a manaʻo i ka pono e kaʻana like i kāna moʻolelo, e hōʻike he MS kāna.

"Manaʻo wau he nui ka hōʻole ʻana i koʻu pilikia," i ʻōlelo ʻo ia. "Inā hiki iaʻu ke hoʻi i ka wā, ua hoʻomaka wau e hana i nā mea i ʻano ʻokoʻa i ke ola."

I kēia lā, haʻi pinepine ʻo ia i nā poʻe ʻē aʻe e pili ana i kāna MS wanaʻao, keu hoʻi nā kaikamahine āna e nānā nei a hiki i kēia lā.

"He mea āu e hana pū ai a he mea e paʻakikī e hana aku. Akā noʻu iho, i loko o ʻekolu mau makahiki, ua hoʻomaikaʻi maikaʻi koʻu ola a mai ka lā aʻu i ʻike ai i kēia manawa.ʻAʻole ia kahi mea e hoʻonui ai i ke ola. Aia iā ʻoe. "

Eia nō naʻe, makemake ʻo ia i nā poʻe ʻē aʻe me MS e ʻike i ka haʻi ʻana i nā poʻe ʻē aʻe i kā lākou hoʻoholo.

"ʻO ʻoe wale nō ka mea e loaʻa i kēia maʻi i kēlā me kēia lā, a ʻo ʻoe wale nō ka mea e kamaʻilio me kou mau manaʻo a me kou naʻau i loko. No laila, mai hoʻoikaika i ka hana i kekahi mea āu e ʻoluʻolu ʻole ai. "

ʻO Danielle Acierto, ʻike ʻia ma 2004

Ma ke ʻano he makua ma ke kula kiʻekiʻe, ua nui ka manaʻo o Danielle Acierto i kona wā i ʻike ai he MS kāna. Ma ke ʻano he 17 ona makahiki, ʻaʻole ia i lohe iki i ka maʻi.

"Ua nalowale wau," i ʻōlelo ʻo ia. "Akā ua paʻa wau i loko, no ka mea inā ʻaʻole ia he mea e uē ai? Ua hoʻāʻo wau e pāʻani iā ​​ia me he mea ʻole lā iaʻu. ʻElua wale nō huaʻōlelo. ʻAʻole wau e ʻae e wehewehe iaʻu, keu hoʻi inā ʻaʻole wau i ʻike i ka wehewehe o kēlā mau ʻōlelo ʻelua. "

Hoʻomaka koke kāna mālama ʻana me nā inikō, nāna i hōʻehaʻeha i loko o kona kino, a pēlā hoʻi me ka hou a me ka haʻalulu o ka pō. Ma muli o kēia mau hopena ʻaoʻao, ua ʻōlelo kona poʻo kula e hiki iā ia ke haʻalele mua i kēlā me kēia lā, akā ʻaʻole ia ka makemake o Acierto.

"ʻAʻole wau i makemake e mālama ʻia i nā ʻano ʻokoʻa a i ʻole me ka nānā kūikawā," i ʻōlelo ʻo ia. "Makemake au e mālama ʻia e like me nā poʻe āpau."

ʻOiai ʻo ia e hoʻāʻo nei e ʻike i nā mea e hana nei me kona kino, ʻo kona ʻohana a me nā hoaaloha pū kekahi. Ua kuhi hewa kona makuahine i "scoliosis," ʻoiai ua hoʻomaka kekahi o kāna mau hoaaloha e hoʻohālikelike iā ia i ka maʻi ʻaʻai.

"ʻO ka hapa paʻakikī o ka haʻi ʻana aku i ka poʻe i ka wehewehe ʻana i ke ʻano o MS," i ʻōlelo ʻo ia. "Coincidentally, ma kekahi o nā malls kokoke iaʻu, ua hoʻomaka lākou e hāʻawi i nā kūpeʻe lima kākoʻo MS. Ua kūʻai aku koʻu mau hoaaloha āpau i nā kūpeʻe lima e kākoʻo iaʻu, akā ʻaʻole lākou i ʻike he aha ia. "

ʻAʻole ʻo ia i hōʻike i nā ʻōuli o waho, akā ua hoʻomau ʻo ia i ka manaʻo ua kaupalena ʻia kona ola ma muli o kona kūlana. I kēia lā, ʻike ʻo ia ʻaʻole pololei kēlā. ʻO kāna ʻōlelo aʻo i nā mea maʻi hou i ʻike ʻia ʻaʻole e hāʻawi pio.

"ʻAʻole ʻoe e ʻae e kāohi iā ʻoe no ka mea hiki iā ʻoe ke hana i nā mea āu e makemake ai," i ʻōlelo ai ʻo ia. "ʻO kou noʻonoʻo wale nō ka mea e kāohi iā ʻoe."

ʻO Valerie Hailey, ʻike ʻia ma 1984

ʻLelo lohi. ʻO ia ka hōʻailona mua a Valerie Hailey o MS. Ua ʻōlelo mua nā kauka ua loaʻa ka maʻi o ka pepeiao i loko, a laila hoʻopaʻi iā ia i kekahi ʻano maʻi ʻē aʻe ma mua o ka hōʻoia ʻana iā ia me "MS paha." ʻO ia ʻekolu mau makahiki ma hope, iā 19 wale nō ona makahiki.

"I ka manawa i ʻike mua ʻia ai au, ʻaʻole i kamaʻilio ʻia [MS] a ʻaʻole ia i loko o ka nūhou," i ʻōlelo ʻo ia. "I ka loaʻa ʻole o ka ʻike, ʻike wale ʻoe i nā kamaʻilio wale āu e lohe ai e pili ana, a makaʻu kēlā."

Ma muli o kēia, ua lawe ʻo Hailey i kāna manawa e haʻi aku ai iā haʻi. Ua hūnā ʻo ia i kona mau mākua, a haʻi wale i kāna wahine hoʻopalau no ka mea ua manaʻo ʻo ia he kuleana kona e ʻike.

"Ua makaʻu wau i kāna mea e manaʻo ai inā e iho wau i ke ala me kahi kō keʻokeʻo i wahī ʻia i ka polū aliʻi, a i ʻole he noho huila e hoʻonani ʻia i nā keʻokeʻo a me nā momi," i ʻōlelo ʻo ia. "Ke hāʻawi nei wau iā ia i ke koho o ka hoʻi ʻana inā ʻaʻole makemake ʻo ia e hana me ka wahine maʻi."

Ua makaʻu ʻo Hailey i kāna maʻi, a makaʻu e haʻi i nā poʻe ʻē aʻe ma muli o ka stigma e pili ana.

"Ua lilo kou mau hoaaloha no ka mea manaʻo lākou," ʻAʻole hiki iā ia ke hana i kēia a i kēlā. "Ke kū mālie nei ke kelepona i ke kani ʻana. ʻAʻole like kēlā i kēia manawa. Hele wau a hana i nā mea āpau i kēia manawa, akā manaʻo ʻia he mau makahiki leʻaleʻa kēlā. ”

Ma hope o ka ʻike hou ʻana i nā pilikia, ua haʻalele ʻo Hailey i kāna hana moemoeā ma ke ʻano he loea ophthalmic a me excimer laser technician ma ka Halemai ʻo Stanford a hele i ke kīnā mau. Ua kaumaha a huhū ʻo ia, akā ke nānā nei i hope, ua laki ʻo ia.

"Ua lilo kēia mea weliweli i mea hoʻomaikaʻi nui loa," i ʻōlelo ʻo ia. "Ua hiki iaʻu ke hauʻoli i ka loaʻa i kaʻu mau keiki i kēlā me kēia manawa ke makemake lākou iaʻu. ʻO ka nānā ʻana iā lākou e ulu aʻe nei he mea e maopopo ʻole ai iaʻu inā ʻaʻole wau e kanu ʻia i kaʻu ʻoihana. "

Mahalo nui ʻo ia i ke ola i kēia lā ma mua o ka wā ma mua, a haʻi aku ʻo ia i nā mea maʻi hou aʻe i ʻike ʻia aia he ʻaoʻao ʻālohilohi mau - inā ʻaʻole ʻoe e manaʻo.