Ke manaʻo koke nei ʻoe i ka ʻūlū ʻana o nā ʻiʻo ma ka lima, ka wāwae, a i ʻole ka poʻohiwi? A i ʻole ke manaʻo nei ʻoe ua paʻakikī kāu mau ʻōlelo ke ʻōlelo ʻoe, a ua mae paha kou mau lālā? ʻOiai ke manaʻo nei mākou he mau mea maʻamau kēia, i kekahi manawa hiki i kēia ke lilo i mau hōʻailona mua o kahi maʻi ʻoi aku ka koʻikoʻi e pili ana i ka ʻōnaehana nerve, e like me ALS ( Amyotrophic Lateral Sclerosis ) . Mai makaʻu ke lohe ʻoe i kēia inoa. I kēia lā ke kamaʻilio nei mākou e pili ana i kēia maʻi i kapa ʻia ʻo ALS, e like me ke kamaʻilio ʻana me kahi hoaaloha.
I ka ʻōlelo maʻalahi, he aha ka ALS?
E noʻonoʻo e pili ana i ia mea, ua like ko kākou kino me kahi mīkini paʻakikī. Hoʻouna ko kākou lolo i nā leka i nā ʻāpana o kēia mīkini e hana. Aia kekahi ʻano kūikawā o ke aʻalolo e lawe ana i kēia mau leka i nā ʻiʻo. Kāhea mākou i kēia mau neurons motor . Ke hele ʻoe, ʻai, kamaʻilio, hanu, hoʻomalu ʻia kēia mau mea a pau e nā leka e puka mai ana mai kēia mau neurons motor.
I loko o ka ALS, no kekahi kumu, nāwaliwali mālie kēia mau neurons motor, lilo i mea hana ʻole, a make. A laila, ʻoiai makemake ka lolo, ʻaʻohe ona ala e hoʻouna ai i nā leka i nā ʻiʻo. Ke loaʻa ʻole nā leka, emi mālie nā ʻiʻo a nāwaliwali. Kāhea mākou i kēia atrophy .
He maʻi holomua ka ALS, ʻo ia hoʻi, e ʻoi aku ka ʻino o nā hōʻailona i ka hala ʻana o ka manawa. ʻO ia hoʻi, e lilo nā mea e like me ka hele wāwae, ke kamaʻilio ʻana, ka ʻai ʻana, a me ka hanu ʻana i mea paʻakikī i ka nāwaliwali ʻana o nā ʻiʻo.
ʻOiai ʻaʻole hiki ke hoʻohuli ʻia ka pōʻino i hana ʻia e kēia maʻi, hiki i nā lāʻau lapaʻau like ʻole ke maʻalahi i ke ola o kēlā me kēia lā a kaohi i ka wikiwiki o ka holomua ʻana o ka maʻi.
ʻElua ʻano nui o ALS.
Hiki ke hoʻokaʻawale ʻia ka ALS i ʻelua mau ʻāpana nui:
1. ALS Sporadic: ʻO kēia ke ʻano maʻamau. Ma kahi o 95% o nā maʻi ALS i loaʻa i kēia ʻano. ʻO ke ʻano "Sporadic" ʻo ia hoʻi, hiki wale mai ia me ka ʻole o ke kumu maopopo.
2. ʻO ka ALS Familial (FALS): He ʻano hoʻoilina kēia. Ma waena o 5% a me 10% o nā maʻi ALS i loaʻa i kēia ʻano. Maanei, ua hoʻokumu ʻia ka maʻi e kahi kīnā genetic (mutation gene) a ua hoʻoili ʻia ka gene hemahema mai nā mākua a i nā keiki.
He aha ke kumu maoli o ka ALS?
ʻO kaʻoiaʻiʻo, ke hoʻāʻo nei nā kānaka noiʻi e ʻike i ke kumu maoli o ka ALS. Eia nō naʻe, aia kekahi mau mea i manaʻo ʻia e kōkua i ia mea:
- Nā hoʻololi ʻana o nā genes: Ma muli o nā loli i kekahi mau genesUa ʻike ʻia hiki ke hōʻino ʻia nā hunaola aʻalolo motor .
- ʻO ke kaulike ʻole o ka Glutamate: He kemika (neurotransmitter) ka Glutamate e hoʻouna i nā leka ma waena o ka lolo a me nā aʻalolo. Ua manaʻoʻiʻo ʻia e hōʻiliʻili kēia glutamate a puni nā hunaola aʻalolo o nā maʻi ALS a hiki ke hōʻino i nā aʻalolo.
- Nā pilikia o ka ʻōnaehana pale: I kekahi manawa hiki i ka ʻōnaehana pale ponoʻī o ko mākou kino ke hoʻouka a luku i nā hunaola nerve olakino.
- ʻO ke kaumaha oxidative : ʻO kekahi mau huahana ʻino (nā radical free) e hana ʻia i ka wā e hana ai kā mākou mau cell i ka ikehu hiki ke hōʻino i nā cell nerve.
- Nā kumu o ke kaiapuni: Ke hana ʻia nei hoʻi ka noiʻi e ʻike ai inā paha he kumu ke komo ʻana i kekahi mau kemika a i ʻole nā huakini.
He aha nā hōʻailona o ka ALS?
Hiki ke ʻokoʻa nā hōʻailona o ka ALS mai kēlā kanaka a kēia kanaka, akā ma ke ʻano laulā, ʻo ka hōʻailona nui ka nalowale o ka mana o nā ʻiʻo i ka hala ʻana o ka manawa.
| Ke kahua o ka maʻi | Nā hōʻailona maʻamau |
|---|---|
| Nā hōʻailona mua |
|
| Nā hōʻailona e kū mai ana i ka wā o ka exacerbation o ka maʻi |
Pehea e ʻike ʻia ai ka ALS?
Hiki ke paʻakikī iki ka ʻike ʻana i ka ALS, no ka mea, hiki ke like nā hōʻailona me nā maʻi ʻē aʻe. No laila, e hana ke kauka i kekahi mau hoʻokolohua e hōʻoia ʻaʻohe mau kūlana ʻē aʻe.
ʻO ka mea nui loa, ʻo ia ke ʻike koke ʻana i ke kauka inā loaʻa iā ʻoe kēia mau hōʻailona, ʻoiai hoʻi ke kauka neurologist.
| Hoʻāʻo | He aha kāna hana? |
|---|---|
| ʻElekromyogram (EMG) | Hoʻokomo ʻia kahi mea e like me ke kui i loko o ka ʻiʻo a ana ʻia kāna hana uila. Inā loaʻa iā ʻoe ka ALS, he ʻano ʻē ka hana ʻana o nā ʻiʻo. |
| Haʻawina Hoʻoili Aʻalolo | Nānā ia pehea e hoʻoili ʻia ai nā leka ma waena o nā aʻalolo a me nā ʻiʻo. |
| MRI Scan | Lawe ʻia nā kiʻi kikoʻī o ka lolo a me ke kaula kuamoʻo e nānā i nā ʻōpū a i ʻole nā pilikia ʻē aʻe. |
| Nā hoʻāʻo koko a me ka mimi | Kōkua kēia i ke kāpae ʻana i nā pilikia olakino ʻē aʻe. |
| ʻO ka Biopsy ʻiʻo | Lawe ʻia kahi ʻāpana ʻiʻo liʻiliʻi a nānā ʻia ma lalo o kahi microscope. Hiki i kēia ke kōkua i ka hoʻoholo ʻana inā he mau maʻi ʻiʻo ʻē aʻe. |
He ʻelua mau mea like ʻole ʻo ALS a me MS?
He nui ka poʻe e huikau ana i ka ALS (Amyotrophic Lateral Sclerosis) a me ka MS (Multiple Sclerosis). ʻOiai ʻelua e hoʻopilikia i ka ʻōnaehana nerve, he ʻelua maʻi like ʻole lāua.
- ʻO ka MS (Multiple Sclerosis) kahi maʻi autoimmune e hōʻino ana i ka uhi pale (myelin) a puni nā hunaola nerve.
- I loko o ka ALS , ua luku pololei ʻia nā neurons motor.
Ka mālama ʻana a me ka hoʻokele ʻana o ALS
ʻAʻohe lāʻau lapaʻau no ka ALS i kēia manawa. Eia nō naʻe, aia kekahi mau lāʻau lapaʻau e hiki ke kōkua i ka hoʻolohi ʻana i ka holomua o ka maʻi, hoʻolōʻihi i ke ola, a hoʻomaʻalahi i ke ola o kēlā me kēia lā. No ka laʻana, ua ʻae ʻia ʻo Riluzole lāua ʻo Edaravone no kēia kumu. Na kāu kauka e kuhikuhi i ka lāʻau lapaʻau kūpono loa nāu.
Eia kekahi, aia nā ʻano lapaʻau like ʻole no ka mālama ʻana i nā hōʻailona.
- Lāʻau lapaʻau no nā mea e like me ka pehu ʻana, ka ʻeha, ka paʻa ʻana o ka paʻa, a me ka luhi.
- Hoʻōla Kino: Kōkua i ka mālama ʻana i nā ʻiʻo ikaika a neʻe no ka lōʻihi e hiki ai.
- ʻO ka Lapaʻau Hana: Ke aʻo aku nei iā ʻoe e pili ana i nā lako a me nā ʻano hana e kōkua iā ʻoe e hana maʻalahi i nā hana o kēlā me kēia lā.
- Lapaʻau ʻŌlelo: Kōkua me nā pilikia o ka ʻōlelo a me ke ale ʻana.
- Lapaʻau Hanu: Hāʻawi i ke kākoʻo i ka wā e pilikia ai ka hanu ʻana.
Nā mea e pono ai ʻoe e ʻike i ka wā e noho ai me ALS
He pilikia hoʻololi ola ka maʻi ALS. Eia nō naʻe, aia nā ala e ola ikaika ai me ke kūlana.
- E ʻae iā ʻoe iho e ʻike i kou mau manaʻo: He mea maʻamau ke kaumaha, huhū, a makaʻu paha. Mai hūnā i kēlā mau manaʻo, e kamaʻilio me kahi āu e hilinaʻi ai.
- E hoʻomaopopo ʻia: E aʻo e pili ana i kou kūlana. E nīnau i kāu kauka.
- E hui pū me nā hui kākoʻo: ʻO ke kamaʻilio ʻana me nā poʻe ʻē aʻe e noho nei me kēia maʻi e like me ʻoe he kumu nui ia o ka ikaika noʻonoʻo.
- E hana i nā hoʻololi ma ka home: I ka holomua ʻana o ka maʻi, hiki ke lilo i mea paʻakikī ke hele wāwae. No laila, e noʻonoʻo i nā mea e like me ka wehe ʻana i nā kāpeti pahee, ke kau ʻana i nā kaola hopu i loko o ka lumi ʻauʻau, a me ka hoʻoponopono ʻana i nā puka e maʻalahi ai no ka noho huila.
- E kākoʻo i kou poʻe mālama: He kaumaha nui ia no kou ʻohana a me kou mau hoaaloha e kōkua nei iā ʻoe ma kēia huakaʻi. E kōkua iā lākou e hoʻomaha a mālama i ko lākou olakino noʻonoʻo.
Leka Lawe-Home
- He maʻi ka ALS e hoʻopau mālie i nā neurons motor, ka mea e lawe i nā leka mai ka lolo a i nā ʻiʻo.
- Inā loaʻa iā ʻoe nā hōʻailona e like me ka ʻūlū ʻana o nā ʻiʻo, ka nāwaliwali o nā ʻiʻo, a i ʻole ka paʻakikī o ka ʻōlelo ʻana, mai hoʻowahāwahā iā ia a e ʻike koke i ke kauka.
- ʻOiai ʻaʻole hiki ke ho'ōla loa ʻia kēia maʻi, aia nā lāʻau lapaʻau kūpono e kāohi ai i ke ala o ka maʻi a hoʻomaʻalahi i ke ola.
- Hiki i nā lāʻau lapaʻau e like me ka physical therapy, ka occupational therapy, a me ka speech therapy ke hoʻomaikaʻi i ka maikaʻi o ke ola.
- ʻAʻole ʻoe hoʻokahi i kēia huakaʻi. He mea nui loa ke kākoʻo o kou ʻohana, nā hoaaloha, ka hui lapaʻau, a me nā hui kākoʻo.
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