Ma 32, ua ʻike wau he MS kaʻu. Eia kaʻu hana i nā lā i ukali.

Anter

• Pehea ʻoe i ʻike mua ai he MS kāu?
• He aha nā anuu hou?
• Kamaʻāina paha ʻoe me MS ke loaʻa iā ʻoe kāu hōʻailona?
• He aha nā mea nui loa i ka wā mua, a pehea ʻoe i hana aku ai iā lākou?
• Ua manaʻo paha ʻoe ua lawa kāu mau kumuwaiwai e hana ai me MS, ma ke kino a me ka noʻonoʻo?
• ʻO wai kāu mau kumu nui o ke alakaʻi a me ke kākoʻo i kēlā mau lā mua?
• Ke noi ʻia ʻoe e kūkākūkā ma ka polokalamu MS Buddy, he aha nā hiʻohiʻona āu i manaʻo ai he mea nui loa ia no ka mea pono nā mea hoʻomohala?
• Ua hala nā makahiki he ʻumi mai kou ʻike ʻia. He aha ka mea e hoʻonāukiuki ai iā ʻoe e hakakā i ka hakakā MS?
• He aha kahi mea e pili ana iā MS āu e makemake ai e hoʻomaopopo i ka poʻe ʻē aʻe?

Ma kahi o 2.3 miliona mau poʻe a puni ka honua e noho nei me nā sclerosis he nui. A loaʻa ka hapanui o lākou i kahi hōʻailona ma waena o nā makahiki 20 a 40. No laila, he aha ke ʻano o ka loaʻa ʻana o kahi hōʻailona i ka wā ʻōpio ke hoʻomaka nei nā poʻe he nui i ka ʻoihana, ka male ʻana, a me ka hoʻomaka ʻana i nā ʻohana?

No nā mea he nui, nā lā mua a me nā hebedoma ma hope o ka hōʻailona MS ʻaʻole ia he mea weliweli wale i ka ʻōnaehana, akā ʻo kahi papa kuʻi e pili ana i kahi kūlana a me ka honua a lākou i ʻike ʻole ai.

Ua ʻike maka ʻo Ray Walker i kēia. Ua loaʻa ʻo Ray i kahi kuhi o ka hoʻi hou ʻana o MS i 2004 ma ka makahiki he 32. He kahu huahana nō ʻo ia ma Healthline a ua hana nui ʻo ia i ke kūkākūkā ʻana no MS Buddy, he polokalamu iPhone a me Android e hoʻopili ana i ka poʻe i loaʻa MS me kekahi no ka ʻōlelo aʻoaʻo, kākoʻo, a me nā mea hou aʻe.

Noho mākou i lalo e kamaʻilio me Ray e pili ana i kāna ʻike ma loko o kēlā mau mahina mua ma hope o kāna kuhi a no ke aha he mea nui ka kākoʻo o nā hoa i kēlā me kēia mea e noho nei me kahi maʻi maʻamau.

Pehea ʻoe i ʻike mua ai he MS kāu?

Aia wau ma ka papa kolepa ke kāhea ʻia mai ke keʻena o kaʻu kauka. ʻ saidlelo ke kahu wahine, “Aloha ʻoe e Raymond, ke kāhea aku nei au e hoʻonohonoho i kāu pākū.” Ma mua o kēlā, ua hele aku nei wau i ke kauka no ka mea ua ʻānō wau i koʻu mau lima a me koʻu mau wāwae no kekahi mau lā. Ua hāʻawi mai ke kauka iaʻu i hoʻokahi manawa a ʻaʻole wau i lohe i kekahi mea a hiki i ke kāhea ʻana o ka iwi kuamoo. Mea weliweli.

He aha nā anuu hou?

ʻAʻohe mea hōʻoia no MS. Hele ʻoe i loko o nā hōʻike piha piha, a inā he maikaʻi kekahi o lākou, e hōʻoia paha kāu kauka i kahi hōʻailona. No ka mea ʻaʻohe mea e hōʻike, "ʻAe, he MS kāu," lawe lohi nā kauka.

He mau pule paha ma mua o ka ʻōlelo ʻana a ke kauka he MS wau. Ua hana wau i ʻelua mau kīʻaha iwi kuamoʻo, kahi hōʻike maka maka kūpono (kahi e ana ai i ka wikiwiki o ka mea āu e ʻike nei e hana nei i kou lolo), a laila MRI makahiki.

Kamaʻāina paha ʻoe me MS ke loaʻa iā ʻoe kāu hōʻailona?

ʻAʻole wau i iki. Hoʻokahi wale nō mea aʻu i ʻike ai, ʻo Annette Funicello (kahi mea hana keaka mai ka makahiki '50) iā MS. ʻAʻole wau i ʻike i ka manaʻo o MS. Ma hope o koʻu lohe he hiki, hoʻomaka koke wau e heluhelu. Minamina, ʻike wale ʻoe i nā ʻōuli maikaʻi loa a me nā hiki.

He aha nā mea nui loa i ka wā mua, a pehea ʻoe i hana aku ai iā lākou?

ʻO kekahi o nā pilikia nui loa i ka manawa i ʻike mua ʻia au e hoʻokaʻina ʻana i nā ʻike i loaʻa. Nui a weliweli e heluhelu no kahi ʻano e like me MS. ʻAʻole hiki iā ʻoe ke wānana i kāna papa, a ʻaʻole hiki ke hoʻōla ʻia.

Ua manaʻo paha ʻoe ua lawa kāu mau kumuwaiwai e hana ai me MS, ma ke kino a me ka noʻonoʻo?

ʻAʻohe aʻu koho, pono wau e hana. Ua male hou wau, huikau, a ʻo ka ʻoiaʻiʻo, makaʻu iki wau. I ka manawa mua, ʻo kēlā me kēia ʻeha, ʻeha, a me nā manaʻo ʻo MS. A laila, no kekahi mau makahiki, ʻaʻohe mea o MS. He lole wili aloha.

ʻO wai kāu mau kumu nui o ke alakaʻi a me ke kākoʻo i kēlā mau lā mua?

Ma laila kaʻu wahine hou. ʻO nā puke a me ka pūnaewele kekahi kumu waiwai o ka ʻike. Ua hilinaʻi nui wau ma ka National Multiple Sclerosis Society i ka hoʻomaka.

No nā puke, ua hoʻomaka wau e heluhelu i nā moʻolelo ola e pili ana i nā huakaʻi a ka poʻe. Ua hilinaʻi wau i nā hōkū i ka wā mua: ʻO Richard Cohen (ke kāne a Meredith Vieira), ʻo Montel Williams, a me David Lander i ʻike ʻia a puni kēlā manawa. Ua hoihoi wau e pili ana i ka hopena o MS iā lākou a me kā lākou huakaʻi.

Ke noi ʻia ʻoe e kūkākūkā ma ka polokalamu MS Buddy, he aha nā hiʻohiʻona āu i manaʻo ai he mea nui loa ia no ka mea pono nā mea hoʻomohala?

He mea nui iaʻu ua hānai lākou i kahi pilina alakaʻi-ʻano like. Ke ʻike mua ʻia ʻoe, nalowale a huikau ʻoe. E like me kaʻu i ʻōlelo ai ma mua, nui ka ʻike ma laila, pau ʻoe i ka make.

ʻO wau iho kahi i aloha i kahi veteran MS e haʻi iaʻu e maikaʻi nā mea āpau. A nui ka ʻike a ka poʻe kūpuna MS e kaʻana like ai.

Ua hala nā makahiki he ʻumi mai kou ʻike ʻia. He aha ka mea e hoʻonāukiuki ai iā ʻoe e hakakā i ka hakakā MS?

Kuhi cliché ia, akā kaʻu mau keiki.

He aha kahi mea e pili ana iā MS āu e makemake ai e hoʻomaopopo i ka poʻe ʻē aʻe?

Ma muli wale o koʻu nāwaliwali i kekahi manawa, ʻaʻole ia he manaʻo ʻaʻole hiki iaʻu ke ikaika.

Ma kahi o 200 ka poʻe i ʻike ʻia me MS i kēlā me kēia pule ma United States wale nō. ʻO nā polokalamu, nā hālāwai kūkā, nā hanana, a me nā pūʻulu pāpili e hoʻopili ai i ka poʻe me MS kekahi i kekahi e lilo i mea nui no ka poʻe e ʻimi nei i nā pane, ʻōlelo aʻoaʻo, a i ʻole kekahi mea e kamaʻilio ai.

Loaʻa iā ʻoe he MS? E nānā i ko mākou nohona me ke kaiāulu MS ma Facebook a hoʻohui me kēia mau mea kākau moʻolelo kiʻekiʻe MS!