Ke manaʻo nei ʻoe ua nāwaliwali a make? E kamaʻilio kākou e pili ana i ka ALS (Amyotrophic Lateral Sclerosis)

E noʻonoʻo i nā hana maʻalahi āu e hana ai i kēlā me kēia lā, e like me ka hāpai ʻana i ke kīʻaha, ka hoʻopili ʻana i kou lauoho, a i ʻole ke piʻi ʻana i nā alapiʻi, ke lilo nei i mea paʻakikī. Ke manaʻo nei ʻoe e mae ana kou mau lālā, e haʻalulu ana kou mau ʻiʻo, a i ʻole e hūpō ana kāu mau ʻōlelo ke ʻōlelo ʻoe? ʻO kēia nā hōʻailona mua o kahi maʻi koʻikoʻi a ka poʻe he nui e hoʻowahāwahā nei, akā hiki nō. I kēia lā e kamaʻilio mākou e pili ana i kekahi o ia mau maʻi, ʻo ia hoʻi ʻo ALS, a i ʻole Amyotrophic Lateral Sclerosis.

I ka ʻōlelo maʻalahi, he aha ka ALS?

He maʻi ka ALS e hoʻopilikia ana i kā mākou ʻōnaehana nerve. ʻO ka pololei, he maʻi ia e hōʻino ana i nā hunaola nerve, a i ʻole nā ​​neurons, i loko o ko mākou lolo a me ke kaula spinal. Kāhea mākou i kēia mau neurons he mau neurons motor. ʻO kā lākou hana nui ka lawe ʻana i nā leka mai ko mākou lolo a hoʻouna iā lākou i ko mākou mau ʻiʻo. ʻO nā neʻe āpau e like me "hāpai i kou lima", "e kau i kou wāwae i mua", "e wehe i kou waha" e kāohi ʻia e kēia mau leka.

E noʻonoʻo e like me ke laina kelepona mai kou lolo a i kou mau ʻiʻo. Ke ulu ka ALS, e haki mālie kēia mau laina kelepona. A laila, ʻaʻole hiki pono nā leka i hoʻouna ʻia mai ka lolo i nā ʻiʻo. Hoʻopau ʻia nā leka. I ka hopena, nalowale loa ka pilina. ʻO ka hopena, ʻaʻole i loaʻa i nā ʻiʻo ke kauoha e hana, no laila e emi mālie lākou a atrophy. I ka lāʻau lapaʻau, kapa mākou i kēia atrophy .

Ua kapa mua ʻia kēia maʻi ʻo ka maʻi ʻo Lou Gehrig. No ka mea, ua loaʻa i kahi mea pāʻani kinipōpō kaulana i nā makahiki 1920 a me 30 kēia maʻi. ʻAʻohe lāʻau lapaʻau no kēia maʻi. Akā, mai hopohopo, ua hoʻomohala ʻia nā lāʻau lapaʻau e kōkua i ka kaohi ʻana i ka maʻi, e hōʻemi i nā hōʻailona, ​​a e ola i kahi ola ʻoluʻolu.

ʻElua ʻano nui o ka maʻi ALS.

Hiki ke hoʻokaʻawale ʻia kēia maʻi i ʻelua ʻano nui ma muli o ke ʻano o kona hanana ʻana.

He aha nā hōʻailona e makaʻala ai?

Hiki ke ʻokoʻa nā hōʻailona o ka ALS mai kēlā kanaka a kēia kanaka a hiki i ka maʻi ke hoʻomaka ma nā ʻāpana like ʻole o ke kino. Eia nō naʻe, aia kekahi mau hōʻailona maʻamau.

Hiki ke hoʻomaka mua kēia mau hōʻailona ma kekahi lima a wāwae paha a laila laha i nā ʻāpana ʻē aʻe o ke kino i ka hala ʻana o ka manawa. ʻAʻole like ka wikiwiki o ka holomua ʻana o ka maʻi no kēlā me kēia kanaka.

No ke aha e ulu ai ka ALS? He aha nā kumu pilikia?

ʻO kaʻoiaʻiʻo, ʻaʻole i loaʻa i nā kānaka noiʻi kahi kumu kūpono no ka ALS, akā aia kekahi mau kumu i manaʻo ʻia e kōkua i ia.

• ʻIke Hoʻoilina: ʻO ke ʻano ʻohana o ka ALS a mākou i kūkākūkā ai ma mua, ua hoʻokumu ʻia e nā hoʻololi hoʻoilina. Ua ʻike ʻia hoʻi he hapa liʻiliʻi o nā maʻi ALS sporadic e loaʻa paha kahi mana hoʻoilina.
• Nā kumu o ke kaiapuni: ʻO ka ʻike ʻana i nā kemika ʻawahia e like me ke kēpau a me ka mercury, kekahi mau maʻi, a i ʻole nā ​​​​​​ʻeha kino koʻikoʻi e manaʻo ʻia hoʻi e kōkua i kēia.

Nā kumu e hoʻonui ai i ka pilikia o ka hoʻomohala ʻana i kēia maʻi:

• Makahiki: ʻOi aku ka nui o ka pilikia o ka poʻe ma waena o 55 a me 75 mau makahiki.
• Kāne: Ma waena o ka poʻe ma lalo o 55 mau makahiki, ʻoi aku ka nui o ka loaʻa ʻana o ka maʻi i nā kāne ma mua o nā wahine.
• ʻOihana koa: Ua hōʻike kekahi mau noiʻi he nui ka pilikia o ka poʻe i lawelawe ma ka pūʻali koa (ʻoi aku hoʻi ma nā ʻāina ʻē) i ka loaʻa ʻana o ka ALS. Hiki paha kēia ma muli o ka ʻike ʻana i nā kemika ʻawahia a i ʻole ka hoʻoikaika kino nui.

Pehea e ʻike ai ke kauka i kēia maʻi?

ʻAʻole hiki ke ʻike ʻia ka ALS me kahi hoʻāʻo hoʻokahi. Nui nā maʻi ʻē aʻe i loaʻa nā hōʻailona like. No laila, hiki i kāu kauka ke holo i kahi moʻo o nā hoʻāʻo e kāpae i nā maʻi ʻē aʻe.

Eia nā hoʻokolohua i hana pinepine ʻia:

• Nā hoʻāʻo koko a me ka mimi: E nānā i nā pilikia olakino ʻē aʻe i loko o ke kino.
• Electromyogram (EMG): Hoʻāʻo kēia i ka hana uila o nā ʻiʻo.
• Haʻawina Hoʻoili Aʻalolo: Ana i ka wikiwiki o ka hele ʻana o nā leka ma o nā aʻalolo.
• Kiʻi Hoʻohui Magnetika (MRI):Hana ʻia kahi scan MRI e nānā i kekahi pōʻino a i ʻole nā ​​​​pūpū i loko o ka lolo a me ke kaula spinal.

He aha nā lāʻau lapaʻau no ALS?

E like me kā mākou i ʻōlelo ai ma mua, ʻaʻohe lāʻau no ka ALS a i ʻole kahi lāʻau no ka maʻi. Eia nō naʻe, aia kekahi mau lāʻau lapaʻau e hiki ke hoʻolohi i ka holomua o nā hōʻailona a kōkua i nā mea maʻi e ola ʻoluʻolu a kūʻokoʻa.

Hiki i kāu kauka a me kāu hui lapaʻau ke kuhikuhi i nā lāʻau lapaʻau e like me:

Nā lāʻau lapaʻau

Aia kekahi mau lāʻau lapaʻau e hiki ke kōkua i ka hoʻolohi ʻana i ka holomua o ka maʻi a kaohi i kekahi o nā hōʻailona. ʻO 'Riluzole' lāua ʻo 'Edaravone' ʻelua o nā mea nui. Eia kekahi, hāʻawi ʻia nā lāʻau lapaʻau kaʻawale no nā mea e like me ka ʻoʻoleʻa o nā ʻiʻo, ka wai kahe, ka ʻeha, a me ke kaumaha.

Nā Lapaʻau a me ka Hoʻōla Hou ʻana

• Hoʻōla Kino: Hāʻawi i nā hoʻomaʻamaʻa kino a me nā ʻōlelo aʻoaʻo e kōkua i ka mālama ʻana i nā ʻiʻo ikaika, pale i ka ʻoʻoleʻa o nā hono, a kōkua iā ʻoe e hana kūʻokoʻa no ka lōʻihi e like me ka hiki.
• ʻO ka Lapaʻau Hana: Ke aʻo nei pehea e hoʻohana ai i nā mea hana e like me nā noho huila a me nā mea kōkua hele wāwae a pehea e hana maʻalahi ai i nā hana o kēlā me kēia lā.
• Lapaʻau ʻŌlelo: Ke aʻo ʻana e mālama i ka hiki ke ʻōlelo no ka lōʻihi e like me ka hiki, e ale i ka meaʻai me ka palekana, a e hoʻohana i nā ʻano kamaʻilio ʻē aʻe inā pono.

Kākoʻo Meaʻai

Hiki i nā pilikia o ke ale ʻana ke alakaʻi i ka pohō kaumaha. No laila, he mea nui e hahai i nā ʻōlelo aʻoaʻo a ke kauka meaʻai a ʻai i kahi meaʻai maʻalahi ke ale ʻia a hāʻawi i ka meaʻai e pono ai. I kekahi mau hihia, hiki ke hoʻohana ʻia kahi ʻōmole hānai e hāʻawi pololei i ka meaʻai i ka ʻōpū ma o ka ihu a i ʻole ka ʻōpū.

Kākoʻo Hanu

I ka holomua ʻana o ka maʻi, nāwaliwali nā ʻiʻo hanu. I kēlā manawa, pono paha nā lako e like me ka `Noninvasive Ventilation (NIV),` e hāʻawi ana i ka ea ma o kahi pale maka i kau ʻia ma luna o ka ihu a me ka waha. I nā pae hope loa, pono paha ke kōkua o kahi mīkini e pamu i ka ea i loko o nā māmā (mechanical ventilation).

He mea nui loa nō hoʻi kou olakino noʻonoʻo.

ʻO ka ʻike ʻana he maʻi kou e like me ALS a me ke ola ʻana me ia hiki ke lilo i mea kaumaha loa. Hiki ke loaʻa nā manaʻo e like me ka huhū, ka manaʻolana ʻole, ka huhū, ke kaumaha, a me ka hopohopo.