Makemake ʻoe e aʻo e pili ana i ka ALS (Amyotrophic Lateral Sclerosis), kahi maʻi e hoʻopilikia ai i kāu ʻōnaehana nerve?

Ke manaʻo nei ʻoe i kekahi manawa e like me ʻoe e pupule ana, ua mae kou mau lālā, a ua hūpō paha kāu mau ʻōlelo ke ʻōlelo ʻoe? Hiki i kēia mau mea ke lilo i mea maʻamau. Eia naʻe, i kekahi manawa, hiki iā lākou ke lilo i hōʻailona o kahi mea ʻoi aku ka koʻikoʻi. I kēia lā e kamaʻilio mākou e pili ana i kahi maʻi paʻakikī iki, akā he mea nui loa ia e makaʻala. ʻO ia ka ALS, a i ʻole Amyotrophic Lateral Sclerosis .

He aha ka ALS (Amyotrophic Lateral Sclerosis)? E hoʻomaopopo maʻalahi kākou!

E noʻonoʻo i kou lolo a me ke kaula iwi kuamoʻo (ke kaula aʻalolo i loko o kou iwi kuamoʻo) ma ke ʻano he ʻāpana hoʻomalu nui o kahi kamepiula. ʻO kēia nā mea e hoʻomalu i nā mea āpau i loko o kou kino. Ma kēia ʻōnaehana, aia nā ʻano pūnaewele kūikawā i kapa ʻia ʻo 'neurons' . Hana lākou e like me nā ʻelele liʻiliʻi. Lawe kēia mau pūnaewele aʻalolo i nā leka mai ka lolo a i ko mākou mau lālā a me nā ʻiʻo, e haʻi ana iā lākou e hana i kēia.

I kēia manawa, ma kēia maʻi i kapa ʻia ʻo ALS, ʻo ka mea e hana ʻia ana, ua hōʻino ʻia nā ʻaʻalolo (`neurons`) āu i ʻōlelo ai . ʻOi aku hoʻi, ʻo nā ʻaʻalolo e kāohi ana i nā neʻe ʻana o ko mākou kino nā pahuhopu nui ma ʻaneʻi. Me he mea lā ʻaʻole hiki i kēlā mau ʻelele ke hana i kā lākou hana. He aha ka mea e hana ʻia a laila? ʻAʻole hele pono nā leka e hele mai ana mai ka lolo i nā ʻiʻo. Ma hope iki, e ʻoi aku ka ʻino o kēia kūlana.

I ka wā mua, e manaʻo paha ʻoe i kahi nāwaliwali iki i kou mau lālā, me he mea lā e ʻoniʻoni ana kou mau ʻiʻo ('muscle twitching`) . E paʻakikī paha iā ʻoe ke hele wale, e hōʻea i waho e hāpai i kahi mea, e nau i ka meaʻai, a i ʻole e ʻōlelo maopopo. I ka hala ʻana o ka manawa, hoʻomaka nā ʻiʻo, ma muli o ka hoʻohana ʻole ʻia, e atrophy ('atrophy`) . Ua like ia me kahi mīkini i hoʻohana ʻole ʻia a nalowale. I ka hopena, hiki i kēia kūlana ke hoʻopilikia i kou hanu ʻana. I kekahi manawa hiki ke hoʻoweliweli i ke ola.

Ua lohe paha ʻoe i ka maʻi ʻo Lou Gehrig . ʻO ia ke ʻano o ka ALS. He mea pāʻani kinipōpō kaulana loa ʻo Lou Gehrig i nā makahiki 1920 a me 1930. Ua loaʻa iā ia kēia maʻi.

ʻOiai ma kahi ʻāina e like me ʻAmelika, hōʻike nā helu helu he 5,000 mau kānaka i ʻike hou ʻia me ALS i kēlā me kēia makahiki. No laila, ʻoiai ʻaʻole kēia he mea maʻamau loa, pono e manaʻo ʻia he kūlana ia e hiki ke ulu i loko o kekahi.

ʻAʻohe lāʻau lapaʻau no kēia i kēia manawa . Akā, mai hopohopo. Ke holomua nei nā koho lapaʻau i kēlā me kēia lā. Me ka hui kūpono o nā lāʻau lapaʻau, hiki ke kāohi i ka laha wikiwiki o ka maʻi a hoʻomaikaʻi i ke ʻano o ke ola i kahi nui.

ʻElua ʻano nui o ALS.

Hiki ke hoʻokaʻawale ʻia ka ALS i ʻelua mau ʻano nui e pili ana i ke ʻano o kona ulu ʻana:

1. ALS Sporadic: ʻO kēia ke ʻano maʻamau.Ma kahi o 90% o nā maʻi ALS no kēia māhele. He hanana wale nō kēia. ʻO ia hoʻi, ʻaʻole ia he hoʻoilina. He paʻakikī ke ʻōlelo pololei i ke kumu o kona hiki ʻana mai.

2. ʻO ka ALS Familial: He mea maʻamau ʻole kēia, e helu ana ma kahi o 10% o nā hihia. Hoʻokumu ʻia ia e nā loli genetic . ʻO ke ʻano kēia, ua hoʻokumu ʻia ke kūlana e kahi kīnā i nā genes i hoʻoilina ʻia mai ka makuahine a i ʻole ka makuakāne.

He aha nā hōʻailona o ka ALS? E nānā kākou.

Hiki ke ʻokoʻa iki nā hōʻailona o ka ALS mai kēlā kanaka a kēia kanaka, a loli lākou i ka hala ʻana o ka manawa. I ka hoʻomaka ʻana, hiki i kekahi mau hōʻailona ke maʻalea loa a aneane ʻike ʻole ʻia.

• Ka nāwaliwali o nā ʻiʻo ma nā lima, nā wāwae, a me ka ʻāʻī: Manaʻo e like me ʻoe ʻaʻole ola. He paʻakikī ke hāpai a paʻa paha i kahi mea.
• ʻEhaʻeha o nā ʻiʻo: He ʻūmiʻi koke a ʻeha hoʻi o nā ʻiʻo.
• Ka manaʻo o ka ʻoniʻoni ʻana ma nā ʻiʻo o nā lima, nā wāwae, nā poʻohiwi a/a i ʻole ke alelo: me he mea lā he ʻoniʻoni liʻiliʻi e puka mai ana mai loko mai.
• ʻOʻoleʻa o nā ʻiʻo (`spasticity`): He manaʻo oʻoleʻa, e like me ka lālā lāʻau ʻoʻoleʻa, me he mea lā he paʻakikī ke kulou a hoʻopololei paha.
• Nā pilikia ma ka ʻōlelo: ʻŌlelo ʻino, paʻakikī i ka haʻi pololei ʻana i nā huaʻōlelo, a me nā loli i ka leo.
• Ka paʻakikī i ka moni ʻana a i ʻole ka drooling pinepine.
• Manaʻo luhi mau.
• Ka paʻakikī i ka ale ʻana i ka meaʻai a i ʻole ka wai (dysphagia): ʻO ka manaʻo ua paʻa ka meaʻai a paʻakikī paha ke ale.
• ʻO ka pahū koke ʻana o ka manaʻo, e like me ka ʻakaʻaka a i ʻole ka uē ʻana, i waho o ke kaohi: Hiki iā ʻoe ke uē me ke kaumaha ʻole, a i ʻole hiki iā ʻoe ke ʻakaʻaka me ke kumu ʻole. Ua kapa ʻia kēia ʻo 'Pseudobulbar affect' ma nā ʻōlelo lapaʻau.

I nā pae mua, ʻo nā hōʻailona maʻamau ka nāwaliwali a me ka ʻoʻoleʻa i nā lima a me nā wāwae, ka paʻakikī i ka ʻōlelo ʻana, a me ka paʻakikī i ka moni ʻana. Hiki i kēia ke paʻakikī i ka hana ʻana i nā hana o kēlā me kēia lā e like me ke kākau ʻana a me ka ʻai ʻana. I ka hala ʻana o ka manawa, laha pinepine kēia mau hōʻailona ma ke kino holoʻokoʻa. Eia nō naʻe, ʻokoʻa ka wikiwiki o ka holomua ʻana o kēia mau hōʻailona mai kēlā kanaka a i kēia kanaka.

I ka ʻoi aku o ka ʻino o nā hōʻailona , ​​hiki ke lilo i mea paʻakikī ke hanu, kū, a hele paha. Hiki nō hoʻi iā ʻoe ke ʻike i ka emi koke o ke kaumaha. Inā loaʻa iā ʻoe kēia mau hōʻailona a me he mea lā e ʻoi aku ka ʻino, e ʻike pono i ke kauka . Inā pilikia ʻoe i ka hanu ʻana , he pilikia ia a pono ʻoe e hele koke i ka haukapila.

No ke aha i loaʻa ai kēia maʻi i kapa ʻia ʻo ALS? He aha ke kumu?

ʻO kaʻoiaʻiʻo, ʻaʻole i ʻike pono nā kānaka noiʻi i ke kumu o ka ALS, akā manaʻoʻiʻo lākou he hui pū ʻana paha ia o nā kumu.

• Nā ʻano hoʻoilina:Ua kamaʻilio mua mākou e pili ana i ka ALS hoʻoilina. No laila, pili kekahi mau loli gene. ʻIke ʻia kēia mau loli genetic ma kahi o 70% o nā maʻi ALS hoʻoilina a ma waena o 5% a me 10% o nā maʻi ALS sporadic. ʻOi aku ka nui o ka hōʻike ʻana i nā loli i loko o nā genes `C9orf72`, `SOD1`, `TARDBP` a me `FUS`. Ua ʻike ʻia ma mua o 40 mau genes e pili ana i kēia.
• Nā kumu o ke kaiapuni: I kekahi manawa manaʻo ʻia he kuleana ko nā mea ʻawahia (e like me ke kēpau a i ʻole ka mercury ), kekahi mau maʻi, a i ʻole ka ʻeha i ke kino, akā ke noiʻi ʻia nei kēia mau mea.

ʻO ka mea a nā kānaka noiʻi i hiki ke hōʻoia, ʻo ia ka hōʻino ʻana o ka maʻi i kā mākou mau neurons motor . ʻO kēia mau neurons motor nā pūnaewele nerve e kaohi ana i nā mea a mākou e hana ai me ka ʻike, e like me ke kamaʻilio ʻana, ka nau ʻana i ka meaʻai, ka hoʻoneʻe ʻana i ko mākou mau lālā, a me ka hanu ʻana.

E noʻonoʻo ʻoe he pilina ko kou lolo a me nā ʻiʻo e like me ke laina kelepona. Hoʻouna nā ʻiʻo nerve i nā leka i nā ʻiʻo ma o kēia laina, e haʻi ana iā lākou e hana i kēia, e hana i kēlā. I ka ALS, lilo ka hōʻailona ma kēia laina kelepona i mea hoʻopilikia . Ua like ia me ka nalowale ʻana o ka loaʻa ʻana ma ke kelepona. Ua haki nā leka mai ka lolo a i nā ʻiʻo, ʻaʻole lākou e hele maopopo mai. I ka hopena, ua nalowale loa kēia pilina, me he mea lā ua ʻoki ʻia ke kelepona. A laila, ʻaʻole hiki i kēlā mau ʻiʻo nerve ke hoʻouna i nā leka hou. ʻO ia ke kumu e loaʻa ai iā ʻoe kēlā mau hōʻailona aʻu i ʻōlelo ai ma mua.

He maʻi hoʻoilina anei ka ALS?

He ʻano genetic kekahi mau ʻano ALS, ʻo ia hoʻi, hiki ke hoʻoili ʻia mai kēlā hanauna a i kēia hanauna. Hiki iā ʻoe ke hoʻoilina i nā loli genetic e hoʻoulu ai i ka ALS mai kou mau mākua. Eia nō naʻe, ʻaʻole maʻamau loa kēia ʻano ALS ('inherited ALS') . ʻO ka hapa nui o ka manawa, hana ʻia nā loli genetic me ka ulia pōpilikia, ʻo ia hoʻi, hiki ke hana ʻia inā ʻaʻohe mea o kou ʻohana i loaʻa i ke ʻano ma mua.

ʻO wai ka mea i ʻoi aku ka nui o ka pilikia o ka hoʻomohala ʻana i ka ALS?

ʻOiai hiki i kekahi ke loaʻa i ka ALS, ua ʻike ʻia he ʻoi aku ka nui o ka pilikia o kekahi poʻe ma mua o nā poʻe ʻē aʻe.

• Makahiki: ʻO ka poʻe ma waena o 55 a me 75 mau makahiki ka mea nui e loaʻa i nā hōʻailona.
• Lāhui a me ka lāhui: Hōʻike ka ʻikepili he ʻoi aku ka nui o ka poʻe keʻokeʻo (ʻaʻole Hispanic) e loaʻa i ka ALS.
• Kāne: I ka hui makahiki ma lalo o 55 mau makahiki, ʻoi aku ka nui o ka pilikia o nā kāne i ka hoʻomohala ʻana i kēia maʻi ma mua o nā wahine.
• Nā Koa Kahiko: Hōʻike kekahi mau noiʻi he ʻoi aku ka nui o ka pilikia o nā lālā lawelawe koa. Manaʻo nā kānaka noiʻi he kumu paha kēia o ka ʻike ʻia ʻana o nā mea pili i ke kaiapuni (e like me nā mea ʻawahia a i ʻole nā ​​pesticides).) a i ʻole nā ​​ulia kino e kū mai ana i ka wā hana.

He aha nā pilikia e hiki ke loaʻa mai ka ALS?

I ka wā e ʻoi aku ai ka koʻikoʻi o nā hōʻailona o kēia maʻi, ʻo ka mea pōʻino, hiki ke hoʻopōkole ʻia ka manawa e ola ai . ʻO ke aʻo ʻana e pili ana i kēia maʻi a me ka hoʻoponopono ʻana iā ia i kēlā me kēia lā hiki ke paʻakikī loa i ka noʻonoʻo. Hiki iā ʻoe ke manaʻo ua kaumaha ʻoe, nalowale, manaʻolana ʻole, a kaumaha. ʻO ka hopena, nui ka poʻe i ʻike ʻia me ALS e ʻike pū i nā pilikia olakino noʻonoʻo e like me ke kaumaha a me ka hopohopo .

He nui nā kauka a me nā kahu maʻi e hiki ke kōkua iā ʻoe e mālama i kou olakino kino. Akā he mea nui nō hoʻi e mālama i kou olakino noʻonoʻo . Inā makemake ʻoe i ke kōkua, e kamaʻilio me kāu hui lapaʻau a i ʻole kekahi kākāʻōlelo olakino noʻonoʻo .

Pehea e ʻike pololei ai nā kauka i ka ALS?

E nānā mua ke kauka iā ʻoe ma ke kino ('hoʻokolohua kino') , a laila e hana i kahi 'hoʻokolohua neurological' . Eia kekahi, hana ʻia kekahi mau hoʻokolohua ʻē aʻe e hoʻoholo ai inā he ALS kou.

ʻAʻole paha ʻoe e hiki ke ʻike koke ua loaʻa iā ʻoe ka ALS. Pono paha ʻoe e ʻike i kāu kauka i nā manawa he nui, a i ʻole pono paha ʻoe e ʻike i kekahi mau loea. E kauoha kāu kauka i nā hoʻokolohua like ʻole e noiʻi hou aku i kāu mau hōʻailona a ʻike pehea lākou e hoʻopilikia ai i kou kino. ʻO kēia no ka mea he nui nā maʻi ʻē aʻe i loaʻa nā hōʻailona like me ALS. No laila, he mea nui e hana i kēia mau hoʻokolohua like ʻole e hana i kahi hōʻailona pololei .

He aha nā hoʻokolohua i hoʻohana ʻia e ʻike ai i ka ALS?

No ka hōʻoia ʻana i ka maʻi, pono paha ʻoe e hana i kekahi mau hoʻokolohua, e like me:

• Nā hoʻāʻo koko: No ka hōʻoia ʻaʻohe pilikia olakino ʻē aʻe.
• Nā hoʻāʻo mimi: Hana ʻia kēia mau mea e kāpae i nā kumu ʻē aʻe.
• Electromyogram (EMG): Hoʻohana ʻia kēia e nānā i ka hana o nā ʻiʻo. Nānā ia inā ke hoʻouna pono ʻia nei nā leka mai nā aʻalolo i nā ʻiʻo.
• Haʻawina hoʻoili aʻalolo: Hoʻāʻo kēia i ka maikaʻi o ka hiki ʻana o nā aʻalolo ke hoʻouna i nā hōʻailona.
• Magnetic Resonance Imaging (MRI): Lawe kēia i nā kiʻi o kou lolo a i ʻole ke kaula kuamoʻo e ʻike inā he pōʻino. Hiki iā ia ke nānā inā he mau kūlana ʻē aʻe (e like me ka puʻupuʻu) ke kumu o nā hōʻailona.

He aha nā lāʻau lapaʻau no ALS? ʻOiai ʻaʻohe lāʻau lapaʻau, aia kekahi hōʻoluʻolu?

ʻO ka mea pōʻino, ʻaʻohe lāʻau lapaʻau e hiki ke hoʻohuli i ka pōʻino i nā hunaola nerve i hoʻokumu ʻia e ka ALS. Akā, mai hopohopo. Hiki i nā lāʻau lapaʻau ke hoʻolohi i ka holomua o nā hōʻailona a kōkua iā ʻoe e noho ʻoluʻolu e like me ka hiki.

Hiki i kāu hui lapaʻau ke ʻōlelo i nā lāʻau lapaʻau e like me:

• Nā lāʻau lapaʻau
• Nā ʻano lapaʻau like ʻole a i ʻole nā ​​​​papahana hoʻōla hou
• Kākoʻo meaʻai
• Kākoʻo no nā pilikia hanu

I ka holomua ʻana o ka maʻi, pono paha ʻoe i nā ʻano lāʻau like ʻole a i ʻole nā ​​​​lāʻau lapaʻau hou aku. Eia kekahi, hiki iā ʻoe ke loaʻa ka mālama kākoʻo e kōkua iā ʻoe e noho kūʻokoʻa a ʻoluʻolu hoʻi no ka lōʻihi e like me ka hiki.

Nā lāʻau lapaʻau i hāʻawi ʻia no ALS

ʻEhā ʻano lāʻau lapaʻau i ʻāpono ʻia e ka United States Food and Drug Administration (FDA) no ka mālama ʻana i ka ALS:

• Riluzole: Ua manaʻo ʻia kēia e hōʻemi i ka hōʻino ʻana i nā neurons motor. Hiki nō hoʻi ke kōkua i ka hoʻolōʻihi ʻana i ke ola no kekahi mau mahina.
• Edaravone: Hiki i kēia lāʻau lapaʻau ke hoʻolohi i ka wikiwiki o ka nalowale o nā ʻiʻo.
• Sodium phenylbutyrate/taursodiol: Hiki i kēia ke kāohi i ka wikiwiki o ka holomua o nā hōʻailona.
• Tofersen: Hiki i kēia lāʻau lapaʻau ke hōʻemi i kekahi o nā hōʻino i nā hunaola nerve. He mea kōkua paha kēia inā ua ʻike kāu kauka i kahi loli i loko o kahi gene i kapa ʻia ʻo SOD1.

Ma waho aʻe o kēia mau lāʻau lapaʻau nui, aia kekahi mau lāʻau lapaʻau ʻē aʻe e hiki ke kōkua i ka kaohi ʻana i kāu mau hōʻailona. No ka laʻana, hiki iā ʻoe ke hoʻohana i nā lāʻau lapaʻau no nā ʻūmiʻi ʻiʻo, ka ʻoʻoleʻa, ka salivation nui, ka ʻeha, a me nā pilikia olakino noʻonoʻo.

Nā ʻano lapaʻau like ʻole ('Nā Lapaʻau')

Hiki i kāu kauka ke ʻōlelo aku i nā ʻano lapaʻau like ʻole a i ʻole nā ​​​​lawelawe hoʻōla hou, e like me:

• Hoʻōla kino: Kōkua kēia iā ʻoe e noho kūʻokoʻa a palekana no ka lōʻihi o ka hiki. Aʻo ia iā ʻoe i nā hoʻomaʻamaʻa maʻalahi e hoʻoikaika ai i nā ʻiʻo a hoʻolaha i ke olakino holoʻokoʻa.
• Hoʻōla hana: Ke aʻo nei kēia i nā hoʻolālā e hana i nā hana o kēlā me kēia lā me ka ʻole o ka luhi ʻana iā ʻoe iho, me ka hoʻohana ʻana i nā mea kōkua e like me nā noho huila a i ʻole nā ​​​​​​mea pale.
• Hoʻōla ʻōlelo: Kōkua kēia iā ʻoe e ale a kamaʻilio palekana. Aʻo pū ia iā ʻoe i nā ʻano kamaʻilio waha ʻole (e laʻa me nā hōʻailona, ​​​​kākau) e kōkua iā ʻoe e ʻōlelo no ka lōʻihi e hiki ai a mālama i ka ikehu.

Kākoʻo meaʻai

No kekahi me ALS, hiki i kekahi manawa ke paʻakikī ke loaʻa i ka meaʻai a lākou e pono ai. ʻO ka paʻakikī i ka ale ʻana hiki ke alakaʻi i ka pohō kaumaha a hoʻolilo i mea paʻakikī ke loaʻa i nā huaora a me nā minelala a lākou e pono ai.

Kauka ʻai meaʻaiKōkua iā ʻoe e pale i nā meaʻai paʻakikī ke ale a hana i kahi papaʻai e hāʻawi ana i ka nui kūpono o nā calorie, fiber, a me nā wai. Hiki i ke aʻo ʻana i ka meaʻai ke kōkua iā ʻoe e mālama i kahi papaʻai olakino. I ka lilo ʻana o ka ale ʻana i mea paʻakikī, hiki i kahi meaʻai meaʻai ke kuhikuhi i nā ʻano ʻai ʻē aʻe e kūpono.

Inā pono, hiki ke hoʻohana ʻia kahi ʻōmole hānai . Hiki i kēia ke hōʻemi i ka pilikia o ka meaʻai a i ʻole nā ​​​​wai e komo ana i loko o nā māmā a hoʻoulu i nā kūlana e like me ka ʻū ʻana a i ʻole ka niumonia .

Kākoʻo hanu

I ka holomua ʻana o ka ALS, hiki ke paʻakikī ka hanu ʻana. Aia kekahi ʻano hana i kapa ʻia ʻo noninvasive ventilation (NIV) . Pili kēia i ka hoʻohana ʻana i kahi pale maka e uhi ana i ka ihu a me ka waha e kōkua iā ʻoe e hanu. Hiki ke hoʻohana ʻia i ka pō wale nō i ka wā mua, akā ma hope aku pono e hoʻohana ʻia i ke ao holoʻokoʻa.

I ka hala ʻana o ka manawa, pono paha ʻoe i ka mīkini ea, kahi mīkini hanu i kapa ʻia he respirator, e kōkua iā ʻoe e hanu i loko a i waho o kou mau māmā. Inā pilikia ʻoe i ka hanu ʻana, ʻoiai i ka wā e moe ana a i ʻole e hana ana i kekahi mea, e haʻi i kāu hui mālama ola. Hiki iā lākou ke kamaʻilio me ʻoe e pili ana i nā koho e kōkua iā ʻoe e hanu maʻalahi.

Āhea ʻoe e ʻike ai i ke kauka? E makaʻala i kēia mau mea

Inā ʻike ʻoe i kekahi o kēia mau hōʻailona, ​​e ʻike i ke kauka:

• Inā manaʻo ʻoe e pilikia ana ʻoe i kāu mau hana o kēlā me kēia lā .
• Inā ʻike ʻia e ʻoi aku ka ʻino o nā hōʻailona.
• Inā ʻoe i loko o kahi kūlana kahi hiki ʻole iā ʻoe ke neʻe wale.
• Inā hoʻokomo ka lāʻau i nā hopena ʻaoʻao .

Ua kamaʻilio mua mākou e pili ana i ke ʻano o ka ALS e hiki ai ke hoʻopaʻakikī i ka hanu ʻana. Eia kekahi mau hōʻailona o ka paʻakikī o ka hanu ʻana e pono ai ʻoe e ʻike i ke kauka:

• Inā ʻoe e manaʻo i ka pōkole o ka hanu , ʻoiai i ka wā hoʻomaha.
• Inā ʻike ʻia ka ʻū ʻana he nāwaliwali .
• Inā ʻaʻole hiki ke hoʻomaʻemaʻe maʻalahi ʻia ka puʻu a me nā māmā.
• Inā hōʻiliʻili nui ka lawai .
• Inā ʻaʻole hiki iā ʻoe ke moe i lalo ma kahi moe (no ka mea, ua manaʻo ʻoe ua pio kou hanu).
• Inā loaʻa pinepine iā ʻoe nā maʻi umauma (pneumonia) .

Hiki i kēia mau hōʻailona ke alakaʻi i kahi kūlana i kapa ʻia ʻo ka hāʻule ʻana o ka hanu . ʻO ia hoʻi, ʻaʻole hiki iā ʻoe ke hanu i ka oxygen lawa e loaʻa ai ka oxygen e pono ai kou kino. He mea hoʻoweliweli kēia i ke ola . No laila, inā pilikia ʻoe i ka hanu ʻana, e hele koke i ka lumi pilikia .

Aia kekahi ala e pale aku ai i ka ALS?

ʻO ka ʻoiaʻiʻo, hiki ke pale ʻia ka ALS.ʻAʻohe lāʻau lapaʻau i hōʻoia ʻia i kēia manawa. Ke hoʻomau nei ka noiʻi ʻana e hoʻomaopopo hou aku i nā kumu a me nā mea pilikia no kēia, a e hoʻomohala i nā ʻano pale i ka wā e hiki mai ana.

Pehea ka lōʻihi e hiki ai iā ʻoe ke ola me ALS? He aha ka manaʻo?

ʻO ka awelika o ke ola no ka ALS he ʻekolu a ʻelima mau makahiki ma hope o ka ʻike ʻia ʻana. Eia nō naʻe, ua manaʻo ʻia ma kahi o 30% o ka poʻe e ola ana no ʻelima mau makahiki a ʻoi aku paha, a ma waena o 10% a me 20% e ola ana no ka liʻiliʻi he ʻumi mau makahiki. Hiki ke ʻokoʻa kou kūlana mai kēia mau helu helu . No laila, e kamaʻilio me kāu kauka e aʻo hou e pili ana i kou kūlana.

ʻAʻole maikaʻi loa ka wānana no ka ALS, ma muli o ke ʻano o kona hopena i ka hana o nā neurons motor. Aia kou manaʻo i ka wikiwiki o ka hōʻino ʻia ʻana o nā hunaola nerve. ʻOiai ʻaʻohe lāʻau lapaʻau e hiki ke hoʻohuli i kēia hōʻino, hiki i kāu kauka ke hāʻawi iā ʻoe i nā koho e hoʻolohi i ka holomua o nā hōʻailona.

ʻAʻohe lāʻau lapaʻau no ALS i kēia manawa.

Inā loaʻa iā ʻoe ka ALS, makemake paha ʻoe e komo i kahi hoʻokolohua lapaʻau . Kōkua kēia mau haʻawina i nā mea noiʻi e hoʻomohala i nā lāʻau lapaʻau hou a hoʻomaopopo maikaʻi i ka maʻi.

ʻO ka mea hope loa, ʻo ka mea nui loa e hoʻomanaʻo!

Ke ʻike ʻoe he amyotrophic lateral sclerosis kou, a i ʻole ALS paha, nui paha kāu mau nīnau a me nā manaʻo.

E noʻonoʻo paha ʻoe, 'No ke aha i hiki mai ai kēia iaʻu? He aha ke kumu o kēia?' E huhū paha ʻoe, e kaumaha, a e kaumaha hoʻi i ka wā ʻaʻole hiki iā ʻoe ke hana hou i nā mea i maʻalahi iā ʻoe, e like me ke kāhili ʻana i kou lauoho, ka ʻai ʻana i kahi meaʻai ʻono, a i ʻole ke kamaʻilio ʻana me nā mea aloha. Hiki i kēia ke alakaʻi i ke kaumaha a me ka hopohopo, ʻoiai ke ʻoi aku ka ʻino o kāu mau hōʻailona.

Ma hea ʻoe a i ʻole pehea kou manaʻo, aia kāu hui lapaʻau ma aneʻi e kōkua iā ʻoe . Ke holomua nei nā lāʻau lapaʻau no ALS i kēlā me kēia lā, a ke noiʻi ʻia nei a hoʻāʻo ʻia nei nā lāʻau lapaʻau hou. ʻOiai ʻaʻohe lāʻau lapaʻau i kēia manawa, hiki i nā lāʻau lapaʻau i loaʻa ke hoʻolohi i ka holomua o nā hōʻailona a hiki iā ʻoe ke hoʻolilo i ka manawa hou aku me kāu poʻe aloha. Mai manaʻo mehameha. E noi i ke kōkua a me ke kākoʻo. ʻO kou ikaika kāu waiwai nui loa.

ʻALS , Amyotrophic Lateral Sclerosis, Neuropathy, Muscular Dystrophy, Lou Gehrig's, Neurons, Motor Neurons, ʻEhaʻeha Hanu