Ke manaʻo nei ʻoe i kekahi manawa e hāʻule koke ana kekahi mea e like me ke kīʻaha a i ʻole ka peni i ka honua me ke kumu ʻole? A i ʻole ke manaʻo nei ʻoe e kuʻia ana kou mau wāwae i kou hele ʻana, a i ʻole ua paʻakikī kāu mau ʻōlelo i kāu ʻōlelo ʻana? ʻOiai he mau mea wale nō kēia e hiki mai ana iā mākou, i kekahi manawa hiki iā lākou ke lilo i mau hōʻailona mua o kahi mea koʻikoʻi e hana nei i loko o ko mākou kino. Pēlā mākou e kamaʻilio ai e pili ana i kahi maʻi e pili ana i kā mākou ʻōnaehana nerve i kēia lā. ʻO ia ka ALS.
I ka ʻōlelo maʻalahi, he aha ka ALS?
ʻO ALS kahi pōkole no Amyotrophic Lateral Sclerosis . Ua kapa pū kekahi poʻe iā ia ʻo 'Lou Gehrig's disease', ma hope o Lou Gehrig, he mea pāʻani kinipōpō kaulana i nā makahiki 1930. I ka ʻōlelo maʻalahi, he maʻi ia e hoʻopilikia i kā mākou ʻōnaehana nerve, ʻoi aku hoʻi nā cell nerve i kapa ʻia ʻo motor neurons .
I kēia manawa, ke noʻonoʻo nei paha ʻoe i ke ʻano o kēia mau neurons motor. E noʻonoʻo, hāpai ʻoe i kahi lima, hoʻoneʻe i kahi wāwae, kamaʻilio, nau i ka meaʻai ... Hana ʻoe i kēia mau mea a pau me ka manawaleʻa, ʻeā? ʻĀ, ke kāohi nei kēia mau neurons motor i nā ʻiʻo manawaleʻa a mākou e noʻonoʻo ai a kāohi. Lawe kēia mau hunaola i ka leka mai ka lolo i nā ʻiʻo, me ka ʻōlelo ʻana, "E hana i kēia." Ke ulu ka ALS, nāwaliwali mālie kēia mau neurons motor a lilo i mea hana ʻole. A laila, ʻaʻole hiki i nā leka mai ka lolo ke hōʻea pono i nā ʻiʻo. ʻO ka hopena, nāwaliwali mālie a emi nā ʻiʻo.
ʻO ka mea kaumaha loa, ʻo ia ka hoʻonāwaliwali ʻana o kēia maʻi i ka diaphragm, ke ʻiʻo e kōkua iā mākou e hanu. Nui nā maʻi e make ana i ka hāʻule ʻana o ka hanu . ʻAʻohe lāʻau lapaʻau paʻa no kēia maʻi.
He aha nā kumu pilikia no ka hoʻomohala ʻana i ka ALS?
ʻAʻole i ʻike ʻia ke kumu maoli o ka ALS, akā ua ʻike ʻia kekahi mau mea pilikia.
- ʻIke Hoʻoilina: No kahi pakeneka liʻiliʻi o ka poʻe me ALS, ma kahi o 10%, he hoʻoilina ia. ʻO ke ʻano kēia, inā loaʻa i kekahi o ka ʻohana ka maʻi, aia he 50% ka manawa e hoʻoili ʻia ai ka gene i kā lākou mau keiki. Ua kapa ʻia kēia he familial ALS .
- Makahiki: Piʻi ka pilikia o ka loaʻa ʻana o kēia maʻi me ka makahiki a hiki i ka 75 makahiki. ʻIke pinepine ʻia ka maʻi i nā poʻe ma waena o 60 a me 80 mau makahiki.
- Kāne: Ma waena o ka poʻe ma lalo o 65 mau makahiki, ʻoi aku ka nui o ka loaʻa ʻana o ka maʻi i nā kāne ma mua o nā wahine. Eia nō naʻe, ma hope o 70 mau makahiki, nalowale kēlā ʻokoʻa.
- Puhi paka:Ua hōʻike kekahi mau noiʻi he nui ka pilikia o ka poʻe puhi paka i ka ALS, ʻoiai i nā wahine ma hope o ka menopause.
- Nā mea ʻawahia : Manaʻo nā kānaka noiʻi he mea pilikia paha ka ʻike ʻana i kekahi mau kemika, e like me ke kēpau. Ke noiʻi ʻia nei kēia.
- ʻOihana koa: ʻO ka mea kupanaha, ua hōʻike kekahi mau noiʻi he ʻoi aku ka nui o ka pilikia o ka poʻe i lawelawe ma ka pūʻali koa i ka loaʻa ʻana o ka ALS. ʻAʻole ʻike ʻia ke kumu pololei, akā ua manaʻo ʻia e pili ana i nā mea e like me ka ʻike ʻana i nā mea ʻawahia a me ke kaumaha nui.
- Ke kuʻia nei i ka hele ʻana, ke hihia nei nā wāwae.
- Ka paʻakikī i ka paʻa ʻana i kahi mea ma ka lima (e like me ka hāʻule ʻana o nā kīʻaha a me nā pā).
- ʻŌlelo ʻūlū .
- Ka paʻakikī i ka ale ʻana i ka meaʻai a i ʻole nā wai.
- ʻEha a ʻūlū paha nā ʻiʻo.
- ʻŪmiʻi ʻana o nā ʻiʻo - i kapa ʻia hoʻi he fasciculations .
- Paʻakikī i ka mālama ʻana i ke kūlana o ke kino, hiki ʻole ke mālama pololei i ka ʻāʻī.
- EMG (Electromyography):Ana kēia i ka hana uila i loko o nā ʻiʻo. I ka ALS, ʻaʻole loaʻa pono nā ʻiʻo i nā leka mai nā aʻalolo, no laila hōʻike ka hoʻāʻo EMG i kahi ʻano maʻamau ʻole.
- Haʻawina Hoʻoili Aʻalolo: Ke ana kēia i ka wikiwiki o ka hele ʻana o nā hōʻailona uila ma nā aʻalolo. Hiki i kēia ke hāʻawi i kahi manaʻo o ka nui o ka hōʻino ʻia i nā aʻalolo.
- Hoʻōla kino: Kōkua i nā hana ʻiʻo nui e like me ka hele wāwae a me ke kū ʻana.
- Hoʻōla hana: Kōkua me nā mākau kaʻa maikaʻi e like me ke pihi ʻana i kahi pālule a me ka ʻai ʻana me ka puna.
- Hoʻōla ʻōlelo: Kōkua i ka hoʻomālamalama ʻana i ka ʻōlelo a me ka hoʻokele ʻana i nā pilikia o ka moni ʻana.
- He maʻi ka ALS e hoʻopilikia ana i nā hunaola aʻalolo i kapa ʻia ʻo nā neurons motor e kaohi ana i ko kākou mau ʻiʻo manawaleʻa.
- Hiki ke maalea loa nā hōʻailona mua, e like me ka nāwaliwali o nā lālā, ka paʻakikī i ka hele ʻana, a me ka ʻōlelo ʻole.
- ʻAʻohe hoʻāʻo kikoʻī e ʻike ai i ka maʻi, a ua hōʻoia ʻia ka ʻike ma ka kāpae ʻana i nā maʻi ʻē aʻe.
- ʻOiai ʻaʻohe lāʻau lapaʻau piha no ka maʻi, hiki i ka hoʻōla kino, ka hoʻōla ʻōlelo, a me nā mea kōkua like ʻole ke mālama i ke ʻano o ke ola o ka mea maʻi ma kahi pae maikaʻi.
- Inā loaʻa iā ʻoe kēia mau hōʻailona no ka manawa lōʻihi, e ʻimi pono i ke kōkua lapaʻau.
Mea nui: Inā kānalua ʻoe ua ale ʻoe i kahi kemika ʻawahia, mai hopohopo a kāhea aku i ke Kikowaena ʻIke ʻAihue Lahui ma ka Halemai Lahui ʻo Colombo no ka ʻōlelo aʻoaʻo lapaʻau kūpono.
He aha nā hōʻailona mua o ka ALS?
ʻAʻole hiki koke mai nā hōʻailona ALS, akā lohi loa. I ka wā mua, ʻike paha ʻoe i kahi loli liʻiliʻi loa. Malia paha e mae kou lima ke paʻa ʻoe i ka huila hoʻokele o ke kaʻa. A i ʻole e paʻakikī paha ʻoe e ʻōlelo ma mua o ka ʻike ʻia ʻana o nā hōʻailona ʻē aʻe. ʻOkoʻa nā hōʻailona mua mai kēlā kanaka a kēia kanaka.
Akā aia kekahi mau hōʻailona mua i maʻamau:
Hiki ke hoʻokaʻawale ʻia kēia maʻi i ʻelua ʻano nui ma muli o ke ʻano o kona hoʻomaka ʻana: ka hoʻomaka ʻana o ka limb (hoʻomaka ma nā lālā) a me ka Bulbar onset (hoʻomaka me ka paʻakikī o ka ʻōlelo ʻana a me ke ale ʻana) .
| Pehea e hoʻomaka ai ka maʻi | Nā hōʻailona maʻamau |
|---|---|
| Hoʻomaka ka lālā (Spinal) | No nā kānaka he nui, hoʻomaka ka maʻi ma kēia ʻano. ʻIke mua ʻia nā hōʻailona ma nā lima a i ʻole nā wāwae.
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| Hoʻomaka ka ʻōlelo ʻana (Bulbar Onset) (hoʻomaka me ka ʻōlelo ʻana/moni ʻana) | ʻAʻole kēia i maʻamau loa. Hoʻomaka mua nā hōʻailona ma nā ʻiʻo o ka maka, ka ʻāʻī, a me ka puʻu.
|
| Hoʻonui kēia maʻi i ka hala ʻana o ka manawa. | |
| Ke ʻoi aku ka ʻino o ka maʻi | Ka nāwaliwali o nā ʻiʻo, ka nalowale ʻana o ka nui o nā ʻiʻo (atrophy), ka paʻakikī ke nau a me ke moni ʻana, ka hiki ʻole ke hoʻomaopopo i ka ʻōlelo, a me ka paʻakikī o ka hanu ʻana. |
Pehea e ʻike ʻia ai ka ALS?
He hana paʻakikī ka ʻike ʻana i ka ALS no ka mea ʻaʻohe hoʻokolohua hoʻokahi e ʻike pono ai. Hoʻopau nā kauka i nā kūlana ʻē aʻe a pau e hiki ke hoʻoulu i kāu mau hōʻailona ma mua o ka hana ʻana i kahi ʻike o ALS.
E hana kāu kauka, ʻoiai he neurologist, i kēia mau hoʻokolohua:
1. Hoʻokolokolo olakino piha: E kūkākūkā mākou i kāu mau hōʻailona a me ka mōʻaukala olakino ʻohana no ka lōʻihi, a e nānā no ka nāwaliwali o nā ʻiʻo, nā ʻūmiʻi ʻiʻo, a me nā pilikia ʻōlelo.
2. Nā hoʻāʻo koko a me ka mimi: Kōkua kēia i ka hoʻopau ʻana i nā kūlana ʻē aʻe e hōʻike paha i nā hōʻailona like me ALS, e like me ka maʻi thyroid, ka hemahema o ka vitamin B12, a me nā maʻi ʻē aʻe.
3. MRI scan: ʻAʻole hōʻike pololei ka MRI i ka ALS, akā he mea nui e nānā i nā kumu ʻē aʻe, e like me ka puʻupuʻu o ka lolo a i ʻole ke kaula kuamoʻo a i ʻole kahi disc paheʻe.
4. Nā hoʻokolohua electrophysiological: He mea nui loa kēia i ka ʻike ʻana.
No ka mea he mea nui ka ʻike ʻana i ka ALS, nui ka poʻe i hoʻowalewale ʻia e kiʻi i kahi manaʻo ʻelua. He mea maikaʻi kēlā. Eia kekahi, no ka mea e holomua ana ka maʻi i ka hala ʻana o ka manawa, he mea kōkua ke hoʻāʻo hou ʻia ma hope o 6 mau mahina e ʻike inā ua hoʻomaikaʻi ʻia nā hōʻailona.
Pehea e mālama ai i nā hōʻailona?
ʻOiai ʻaʻohe lāʻau lapaʻau piha no ka ALS, nui nā ala e hoʻokele ai i nā hōʻailona a hoʻomaikaʻi i ke ʻano o ke ola o ka mea maʻi.
Eia kekahi, aia nā mea hana e like me nā noho huila, nā mīkini CPAP e kōkua i ka hanu ʻana, a me nā ʻenehana kamepiula kūikawā (polokalamu ʻike maka) e kōkua i ka poʻe paʻakikī i ka ʻōlelo e kamaʻilio.
Inā ʻoe a i ʻole kekahi āu i ʻike ai e hoʻomau nei i ka ʻike ʻana i nā hōʻailona i ʻōlelo ʻia ma ʻaneʻi, mai hoʻonele i ka manawa a e ʻike i ke kauka kūpono . ʻO ka ʻike mua ʻana i ka maʻi he kōkua nui ia i ka mālama ʻana iā ia.
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