Inā he mea aloha kāu me Down Syndrome i loko o kou ʻohana, he mea maʻamau ka loaʻa ʻana o nā nīnau like ʻole, a malia paha he makaʻu iki, e pili ana i ko lākou olakino i ko lākou wā ʻelemakule. ʻOi aku hoʻi, ua lohe pinepine paha ʻoe i ka inoa "Alzheimer's Disease". Ua noʻonoʻo nui paha ʻoe inā he pilina maoli ma waena o kēia mau maʻi ʻelua. ʻOiaʻiʻo, aia nō. Akā ma mua o kou makaʻu ʻana, e kamaʻilio kākou e pili ana i ia mea me ka maopopo, maʻalahi, a me ka maʻalahi.
No ke aha i ʻōlelo ʻia ai he ʻoi aku ka nui o ka pilikia o ka poʻe me Down syndrome i ka maʻi Alzheimer?
I mea e hoʻomaopopo ai i kēia, pono kākou e hoʻi i ka ʻāpana kumu loa o ko kākou kino. ʻO ia ko kākou mau chromosome . I ka ʻōlelo maʻalahi, ua like kēia mau chromosome me nā 'kuhikuhi' i loko o kēlā me kēia cell i loko o ko kākou kino. ʻO nā mea āpau mai ke kala o ko kākou lauoho a hiki i ko kākou kiʻekiʻe e hoʻoholo ʻia e nā genes i loko o kēia mau chromosome. ʻO ka maʻamau, loaʻa i ke kanaka ʻelua kope o kēlā me kēia ʻano chromosome.
Eia nō naʻe, he kope keu ko ke kanaka me Down syndrome o ka chromosome 21, ʻo ia hoʻi, ʻekolu kope . Penei kona pili ʻana me ka maʻi Alzheimer: ʻO ka gene e kuhikuhi ana i ka hana ʻana o kahi protein ʻino (beta-amyloid) i waiho ʻia i loko o ka lolo i ka wā e ulu ai ka maʻi Alzheimer aia ma kēia chromosome 21 like.
No laila, no ka mea aia kekahi kope keu o ka chromosome 21, hoʻopuka ke kanaka me Down syndrome i nā mea hou aʻe o kēia protein ʻino i loko o ko lākou lolo. I ka hala ʻana o ka manawa, hōʻiliʻili kēia mau protein a waiho a puni nā cell o ka lolo, e hōʻino ana i kēlā mau cell a hoʻomaka e luku iā lākou. ʻO kēia ka mea e hana ʻia ma ka maʻi Alzheimer.
Eia kekahi, ʻoi aku ka wikiwiki o ke kino a me ka lolo o ka poʻe me Down syndrome ma mua o ke kanaka maʻamau (ʻelemakule mua) . ʻO ia hoʻi, ʻo ke kino o kahi kanaka 45 makahiki me Down syndrome e like paha me ke kino o kahi kanaka 65 a 70 paha makahiki i ka heluna kanaka. ʻO kēia ʻelemakule wikiwiki kekahi kumu nui o ka hoʻomaka mua ʻana o ka maʻi Alzheimer.
Pehea ke ʻano o nā hōʻailona? He ʻokoʻa anei lākou mai nā hōʻailona maʻamau o Alzheimer?
ʻAe, he mea nui loa kēia. ʻOkoʻa iki paha nā hōʻailona o ka maʻi Alzheimer i kekahi me Down syndrome mai nā hōʻailona o ke kanaka maʻamau. ʻO ia ke kumu e paʻakikī ai ke ʻike i kēia maʻi i kekahi manawa.
Ke noʻonoʻo mākou i ka maʻi Alzheimer, manaʻo pinepine mākou i ka nalowale o ka hoʻomanaʻo. Akā no kekahi me Down syndrome, ʻaʻole paha ka nalowale o ka hoʻomanaʻo ke hōʻailona mua . Hiki ke ʻike mua ʻia nā loli ʻē aʻe.
E nānā kākou i kēlā mau hoʻololi ma ka papa ma lalo.
| Hōʻailona | Pehea ke ʻano o ke kanaka me Down syndrome |
|---|---|
| Hana i kēlā me kēia lā | ʻO nā mea āu i hiki ai ke hana iā ʻoe iho, e like me ke komo ʻana i ke kapa, ka ʻai ʻana, ka ʻauʻau ʻana, a me ka hana ʻana i ke kī, pono ke kōkua. Ke emi mālie nei ka hoihoi a me ka hiki ke hana i kēlā mau mea. |
| Nā loli ʻano | I ka manawa koke, lilo lākou i mea paʻakikī, hana i ke ʻano kūpono ʻole, huhū, a hoʻomaka paha e kū mālie ma kahi ʻē, me ka hoihoi ʻole i kekahi ʻaoʻao o ia mea, me ka ʻole o ke kamaʻilio ʻana. |
| Nā Haʻalulu Hou | He hōʻailona koʻikoʻi loa kēia. Inā hoʻomaka kekahi mea i loaʻa ʻole i nā hopu ʻana i ko lākou ola e loaʻa hou i nā hopu ʻana ma hope o 40 mau makahiki, he hōʻailona paha ia o ka maʻi Alzheimer. |
| Ka hiki ke hoʻomanaʻo a me ka noʻonoʻo | ʻOiai ʻaʻole paha e ʻike ʻia ka nalowale o ka hoʻomanaʻo i ka wā mua, hiki ke hana ʻia i ka hala ʻana o ka manawa. Lilo ia i mea paʻakikī ke hoʻomanaʻo i nā mea hou. Hoʻemi ʻia ka hiki ke koho i ka pono mai ka hewa a me ka hoʻoholo ʻana. |
| Paʻakikī i ka ʻōlelo ʻana | E hoʻomaka paha ʻoe e ʻōlelo iki, paʻakikī i ka loaʻa ʻana o nā huaʻōlelo, a i ʻole e hōʻole i kāu mau huaʻōlelo. |
ʻO ka mea nui loa, ʻo ia ka ʻike ʻana i kahi loli mai ke ʻano maʻamau o kāu keiki a i ʻole ka ʻohana (baseline) . No ka mea, he mau pilikia aʻo ko lākou mai ka hānau ʻana mai, hiki ke paʻakikī ke ʻike i nā loli i ka hoʻomanaʻo. Akā inā manaʻo ʻoe, "ʻAʻole like kēia kanaka me kēia ma mua, a i kēia manawa ua ʻokoʻa lākou," ʻo ia ka mea nui loa.
I ka makahiki hea e piʻi ai ka pilikia?
ʻO ka maʻamau, ulu ka maʻi Alzheimer i ka heluna kanaka ma hope o 65 mau makahiki. Eia nō naʻe, no kekahi me Down syndrome, hiki mua kēia pilikia.
- 35 makahikiI kēia mau lā iho nei, ua ʻike ʻia nā noiʻi e hiki i kahi 25% (hoʻokahi i loko o ʻehā) o ka poʻe me Down syndrome ke hōʻike i nā hōʻailona o Alzheimer's.
- No nā kānaka he nui, hoʻomaka nā hōʻailona e ʻike ʻia i ko lākou mau makahiki 40 a i ʻole 50 mua.
- Ma keʻano holoʻokoʻa, ʻo ka likelika o kekahi me Down syndrome e hoʻomohala i ka maʻi Alzheimer he ʻekolu a ʻelima mau manawa ke kiʻekiʻe aʻe ma mua o ka heluna kanaka maʻamau.
He aha kaʻu e hana ai ma ke ʻano he kahu mālama?
E hoʻoweliweli paha kēia ʻike iā ʻoe. Akā, mai hopohopo. ʻO ka ʻike ka mea kaua maikaʻi loa. Aia kekahi mau mea nui loa hiki iā ʻoe ke hana.
1. Nā nānā lapaʻau maʻamau: He mea nui e lawe pinepine i kāu keiki a i ʻole kekahi lālā o ka ʻohana i ke kauka. ʻOi loa ma hope o 30 mau makahiki, e kamaʻilio ākea me kāu kauka e pili ana i ka pilikia o ka maʻi Alzheimer.
2. Loiloi Kumu: I kou mau makahiki 30, e hana pū me kāu kauka e loiloi i ka hoʻomanaʻo o kāu keiki, ka hana o kēlā me kēia lā, a me ke ʻano. E kōkua kēia iā ʻoe e ʻike i nā loli i ka wā e hiki mai ana.
3. E makaʻala i nā loli: ʻO ʻoe ka mea ʻike maikaʻi loa iā ia. No laila, ʻoiai nā loli liʻiliʻi loa āu e ʻike ai, e kākau iā lākou i loko o kahi puke me ka lā a me ka manawa. E kākau i nā memo e like me, "ʻAʻole hiki iā ia ke kau i kona mau kāmaʻa iā ia iho i kēia lā," "Ua kaumaha loa ʻo ia mai ka pule i hala." He mea kōkua nui kēia i ke kauka.
4. E ʻimi koke i ke kōkua lapaʻau: Inā ʻike ʻoe i hoʻokahi a ʻoi aku paha o nā hōʻailona i helu ʻia ma luna, mai kali a hiki i ka wā ma hope e ʻike ai i kāu kauka . ʻOiai ʻaʻole hiki ke ho'ōla loa ʻia ka maʻi Alzheimer, aia nā ʻano lapaʻau a me nā hoʻolālā like ʻole e hiki ke kōkua i ka hoʻokele ʻana i nā hōʻailona, hoʻomaikaʻi i ke ʻano o ke ola, a hāʻawi i ka hōʻoluʻolu no ʻoe a me ka mea maʻi.
Leka Lawe-Home
- ʻOi aku ka nui o ka pilikia o ka poʻe me Down syndrome i ka hoʻomohala ʻana i ka maʻi Alzheimer ma mua o ka heluna kanaka maʻamau.
- Hoʻomaka pinepine nā hōʻailona i nā makahiki 40 a i ʻole nā makahiki 50 mua, ʻoi aku ka mua ma mua o ka heluna kanaka maʻamau.
- Ma mua o ka nalowale o ka hoʻomanaʻo, hiki i nā hōʻailona mua ke komo i nā loli o ke ʻano, ka hiki ʻole ke hana i nā hana o kēlā me kēia lā, a i ʻole nā hopu hou.
- Inā ʻike ʻoe i kekahi mau loli maopopo i ke ʻano o kāu mea aloha, nā hiki, a i ʻole nā hana maʻamau i kēlā me kēia lā, e kamaʻilio pono me kāu kauka e pili ana i ia mea.
- Hiki i ka ʻike mua ʻana a me ka mālama pono ʻana i ke olakino ke hoʻomaikaʻi i ke ʻano o ke ola o ka mea maʻi a hāʻawi i ka hōʻoluʻolu iā ʻoe ma ke ʻano he mea mālama.
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