Ua paʻa kou kino, akā ua noa kou manaʻo? E kamaʻilio kākou e pili ana i ka Locked-in Syndrome (LiS)

E noʻonoʻo i ka hiki ke hoʻomaopopo a lohe i nā mea āpau āu e makemake ai, akā ʻaʻole hiki ke ʻōlelo a hoʻoneʻe paha i kou kino ... me he mea lā ua paʻa ʻoe i loko o kou kino ponoʻī. ʻAʻole anei he mea kōkua ʻole ke noʻonoʻo e pili ana i kēia? ʻO ia ke ʻano o ka maʻi neurological pōʻino, akā kakaʻikahi loa a mākou e kamaʻilio ai i kēia lā. Ua kapa ʻia kēia ʻo Locked-in Syndrome, a i ʻole `(LiS)` no ka pōkole.

He aha ka Locked-in Syndrome?

I ka ʻōlelo maʻalahi, ʻo ka locked-in syndrome kahi maʻi neurological laha ʻole kahi e lilo ai kou mau ʻiʻo manawaleʻa āpau, koe wale nō nā ʻiʻo e kāohi ana i kou neʻe ʻana o ka maka. ʻO ia hoʻi, ʻaʻole hiki iā ʻoe ke hana i kekahi mea āu e makemake ai e hana, e like me ka neʻe ʻana i kou mau lima a i ʻole kou mau wāwae, kamaʻilio, a i ʻole e hōʻike i nā manaʻo me kou helehelena.

Akā, ʻo ka mea kupaianaha, ʻo ke kanaka ma kēia kūlana , ua loaʻa iā ia ko lākou mau manaʻo a pau, ka naʻauao, a me ka hoʻomanaʻo e like me ka mea maʻamau. Hiki iā lākou ke lohe a hoʻomaopopo i nā mea e hana nei a puni lākou. Akā, ʻaʻohe o lākou ala e pane aku ai. Ua like ia me kekahi kanaka i paʻa i loko o ko lākou kino ponoʻī, ʻaʻole hiki ke ʻōlelo a neʻe paha.

ʻO ka maʻamau, kamaʻilio kēia poʻe ma ka neʻe ʻana i ko lākou mau maka i luna a i lalo, a i ʻole ka ʻimo ʻana, hiki iā lākou ke hoʻomalu. I kekahi manawa hoʻohana lākou i nā ʻenehana kōkua kūikawā no kēia kumu.

ʻO ke kumu nui o kēia ʻano, ʻo ia ka hōʻino ʻia ʻana o kahi ʻāpana kikoʻī o ko kākou lolo i kapa ʻia ʻo nā pons. E kamaʻilio mākou e pili ana i kēia me nā kikoʻī hou aku ma hope.

He aha nā ʻano nui o ka locked-in syndrome (LiS)?

Ua ʻike ʻia ʻekolu mau ʻano nui o ka locked-in syndrome (LiS). E nānā kākou i ke ʻano o lākou.

1. ʻAno kuʻuna

ʻO kēia ke ʻano maʻamau. I kēia hihia, ʻaʻole hiki iā lākou ke neʻe iki. ʻO ia hoʻi, ʻaʻole hiki iā lākou ke hana i kekahi neʻe manawaleʻa. Eia naʻe, hiki iā lākou ke hoʻoneʻe i ko lākou mau maka i luna a i lalo a ʻālohilohi. Eia kekahi, noho maʻamau ko lākou ʻike a me ke akamai. Hiki iā lākou ke lohe maikaʻi i nā mea e hana nei a puni lākou.

2. Palapala piha ʻole

Ua like kēia me ke ʻano kuʻuna. ʻO ia hoʻi, inā paha he ola ʻole ke kino holoʻokoʻa, hiki i nā maka ke neʻe i luna a i lalo, e ʻālohilohi ana. Eia nō naʻe, i kēia hihia, i kekahi manawa aia paha kekahi neʻe ʻana a me ka manaʻo i koe ma kekahi mau ʻāpana o ke kino. ʻO ia ka ʻokoʻa liʻiliʻi ma ʻaneʻi.

3. ʻAno Hoʻoneʻe Holoʻokoʻa

ʻO kēia ke ʻano koʻikoʻi loa a kakaʻikahi. Ma kēia, lilo ke kino holoʻokoʻa i ka maʻi lolo, a nalowale ka hiki ke hoʻoneʻe i nā maka. Akā, he mea kupanaha, he noʻonoʻo maʻamau a me ka naʻauao ko kēia poʻe. Hōʻoia nā kauka i kēia ma ka hoʻāʻo ʻana i ka hana o ka cerebral cortex (hana cortical) me nā hoʻokolohua e like me ka "electroencephalogram - EEG)", e ana ana i nā nalu lolo.

ʻO wai ka mea hiki ke hoʻomohala i ka locked-in syndrome (LiS)?

ʻOiaʻiʻo, hiki ke loaʻa kēia ʻano i kapa ʻia ʻo locked-in syndrome (LiS) i kēlā me kēia makahiki. Eia nō naʻe, ua hōʻike ʻia e ka noiʻi he mea maʻamau ia i waena o ka poʻe ma waena o 30 a me 50 mau makahiki .

Pehea ka maʻamau o kēia ʻano?

He maʻi laha ʻole ka Locked-in syndrome (LiS). No ka mea, i kekahi manawa ua kuhihewa ʻia a manaʻo hewa ʻia paha he maʻi lapaʻau, he paʻakikī i nā kānaka noiʻi ke ʻōlelo pololei i ka nui o ka poʻe e loaʻa ana i kēlā me kēia makahiki. Eia nō naʻe, ua ʻae ʻia he mea laha ʻole ia.

He aha nā hōʻailona o ka locked-in syndrome (LiS)?

Hiki ke ʻokoʻa iki nā hopena ma ke kino ma muli o ke ʻano o ka locked-in syndrome (LiS) āu e loaʻa ai.

I ka manawa pinepine, ke ʻike mua ʻoe i kekahi me ka locked-in syndrome, manaʻo ʻoe ua nalowale lākou i ka ʻike, ʻo ia hoʻi, i loko o ka coma. ʻO kēia no ka mea ʻaʻole hiki iā lākou ke pane i kekahi ʻano. Ma hope wale nō ʻoe e ʻike ai ua maopopo lākou.

Nā mea hiki ʻole i nā poʻe he nui ke hana:

• Nau ʻana i ka meaʻai
• Ke ale ʻana
• Kamaʻilio ʻana
• Nā hiʻohiʻona helehelena (e like me ka minoʻaka, ke kaumaha)
• ʻAʻohe neʻe ʻana o ke kino ma lalo o nā maka

Nā mea hiki i nā kānaka he nui ke hana (ma nā ʻano kuʻuna a me nā ʻano hemahema):

• Hiki iā ʻoe ke hoʻoneʻe i kou mau maka i luna a i lalo (akā, ʻaʻole mai kēlā ʻaoʻao a i kēia ʻaoʻao, ʻo ia hoʻi, ma ke ʻano pālahalaha).
• Hiki iā ʻoe ke ʻimo.

Nā mea hiki i nā kānaka a pau (ma nā ʻano āpau) ke hana:

• Ke lohe nei au i nā mea e hana nei a puni iaʻu, nā kānaka e kamaʻilio ana.
• Hiki iā ʻoe ke hoʻomaopopo i ka wā e ʻōlelo ai a heluhelu paha kekahi i kekahi mea.
• Hiki iā ʻoe ke noʻonoʻo a kūkākūkā e like me kāu i hana ai ma mua o ka hiki ʻana mai o kēia kūlana.
• He mea maʻamau nā pōʻaiapuni hiamoe-ala.

Ke ʻeha nei ʻoe me ka locked-in syndrome (LiS)?

Pili nō hoʻi kēia i ke ʻano o ka Locked-In Syndrome (LiS) i loaʻa iā ʻoe.

• ʻO ke kanaka me ka neʻe ʻole loa, ʻaʻole ia e ʻeha kino no ka mea ua paʻa loa kona kino holoʻokoʻa.
• Hiki i ke kanaka me ke ʻano piha ʻole ke loaʻa i ka ʻeha a me nā manaʻo ʻē aʻe ma kekahi mau wahi o ke kino.

He aha ke kumu o ka locked-in syndrome (LiS)?

E like me kā mākou i ʻōlelo ai ma mua, ʻo ke kumu nui o ka locked-in syndrome (LiS) ka hōʻino ʻia i kahi ʻāpana kikoʻī o ko mākou lolo i kapa ʻia ʻo pons.

Ka hōʻino ʻana i ka ʻāpana pons o ka lolo

He ʻano lio like ka pons me nā olonā aʻalolo. Aia ia ma waena o ka medulla oblongata, ka ʻāpana haʻahaʻa loa o ke kumu lolo, a me ka cerebellum, ka mea e hoʻomalu ana i nā neʻe ʻana o ko mākou kino, ʻoiai ke kaulike.

ʻO ka pons kahi ʻāpana o ka lolo i kapa ʻia ʻo cerebrum, nona nā ala aʻalolo koʻikoʻi he nui e hoʻopili ai i ko kākou cerebrum, ke kaula spinal, a me ka cerebellum. I ka maʻi locked-in, i ka wā e hōʻino ʻia ai ka pons, ua ālai ʻia nā hōʻailona aʻalolo āpau mai ka lolo a i nā ʻiʻo o ke kino. ʻO ia ke kumu e lilo ai ke kino holoʻokoʻa i maʻi lolo. Hoʻopilikia pū kēia pōʻino i nā kikowaena o ke kumu lolo e kaohi ana i nā ʻano helehelena a me ka ʻōlelo. ʻO ia ke kumu ʻaʻole hiki iā mākou ke hōʻike i nā manaʻo me ko mākou mau helehelena, nau i ka meaʻai, ale, a ʻōlelo paha.

ʻO ke kumu nui a me ke kumu maʻamau o ka hōʻino ʻana i nā pons he hahau ischemic a i ʻole ka hahau hemorrhagic, kahi e hoʻopilikia ai i nā ala corticospinal, corticopontine, a me nā ala corticobulbar i loko o ka lolo.

• ʻO ka hahau ischemic ka wā e ālai ai kahi ʻaʻa koko i kahi kīʻaha koko e hoʻolako ana i ke koko i ka lolo, e ʻoki ana i ke kahe koko i ka lolo.
• ʻO ka hahau hemorrhagic ka wā e hoʻomaka koke ai ke kahe ʻana o ke koko i loko o ka lolo mai kahi aʻa koko i loko o ka lolo.

Nā kumu ʻē aʻe o ka hōʻino ʻana i nā pons

Ma waho aʻe o ka hahau ʻana, hiki i kekahi mau kumu kakaikahi ke hōʻino i nā pons, e hopena ai i ka maʻi locked-in (LiS).

• Ka maʻi o kekahi mau ʻāpana o ka lolo.
• Nā puʻupuʻu a i ʻole nā ​​​​pūʻulu i loko o nā pons a i ʻole ke kumu o ka lolo.
• ʻO ka demyelination ka nalowale ʻana o ka uhi pale (myelin) a puni nā hunaola nerve.
• ʻO kekahi mau maʻi, no ka laʻana , amyotrophic lateral sclerosis (ALS) a me Guillain-Barre syndrome .
• Ka ʻeha i nā pons.
• Ka hoʻohana pono ʻole ʻana i nā mea ʻona .

Pehea e ʻike ʻia ai ka locked-in syndrome (LiS)?

No ka mea, ʻaʻole pane ka poʻe me ka locked-in syndrome (LiS) i nā mea hoʻonāukiuki ʻeha (ʻo ia hoʻi, ʻaʻohe pane hoʻoikaika kino) a nā kauka e hoʻohana ai e nānā i ka pane ʻana, hiki i nā kauka ke manaʻo hewa i ka wā mua ua ʻike ʻole lākou. No laila, hiki i ka ʻike ʻana (LiS) ke paʻakikī a hoʻopau manawa.

ʻO ka mea nui loa i ka ʻike ʻana i ka locked-in syndrome (LiS) ʻo ia ke kāpae ʻana i nā kūlana ʻē aʻe e hiki ke hoʻoulu i kēia mau hōʻailona. Eia kekahi, ma ke ʻano he ʻāpana o ka hoʻolālā hōʻoia a me ka mālama ʻana, he mea nui e ʻike i ke kumu o ka locked-in syndrome.

Nā hoʻokolohua diagnostics

Hoʻohana nā kauka i kekahi mau hoʻokolohua e ʻike i ka maʻi i hoʻopaʻa ʻia (LiS), e ʻimi i ke kumu, a hoʻoponopono i nā kūlana ʻē aʻe.

• ʻO ke kiʻi MRI (Magnetic Resonance Imaging - MRI) a i ʻole ke kiʻi CT (Computed Tomography - CT): Hiki i kēia mau hoʻokolohua ke ʻike inā he pōʻino i kāu mau pons a i ʻole nā ​​​​​​ʻāpana ʻē aʻe o kou lolo.
• ʻO ka angiography Cerebral: Hiki i kēia hoʻāʻo ke ʻike inā he koko koko i loko o nā aʻa o ke kumu o ka lolo a i ʻole ma kahi ʻē aʻe o ka lolo.
• Electroencephalogram (EEG): Ke ana kēia i ka hana uila o ka lolo. Hiki i nā kauka ke ʻike inā he maʻamau ka hana o kou lolo a me nā pōʻaiapuni hiamoe-ala. Hiki iā ia ke kōkua i ka hoʻokaʻawale ʻana i ka LiS mai nā kūlana ʻē aʻe.
• Nā hiki ke hoʻāla ʻia: Ke ana kēia i ka hana uila ma nā ʻāpana o ka lolo a me ke kaula kuamoʻo i ka pane ʻana i nā mea e like me ka ʻeha, ka lohe ʻana, a i ʻole nā ​​​​​​mea hoʻonāukiuki ʻike maka. Hoʻohana nā kauka iā lākou e loiloi i nā pane o ka lolo i hōʻino ʻia a me nā pane lolo olakino.
• Electromyography: Ke ana kēia i ka maikaʻi o ka hana ʻana o kou mau ʻiʻo a me nā aʻalolo. Hiki ke hoʻohana ʻia kēia hoʻāʻo e kāpae i ka hōʻino ʻia ʻana o nā ʻiʻo a me nā aʻalolo.
• Nā hoʻāʻo koko: ʻO kahi panel metabolic, ʻoiai ma ka nānā ʻana i ka pae sodium i loko o ke koko, hiki ke kōkua i ka hoʻoholo ʻana inā he kumu i kapa ʻia ʻo pontine myelinolysis ke kumu.
• Hoʻāʻo wai Cerebrospinal (CSF): Hiki i kēia ke kōkua i ka hoʻoholo ʻana inā he maʻi a maʻi autoimmune paha ke kumu o nā hōʻailona.

Pehea e mālama ʻia ai ka locked-in syndrome (LiS)?

ʻO kaʻoiaʻiʻo, ʻaʻohe lāʻau lapaʻau kūikawā no ka locked-in syndrome (LiS). ʻO ka mea wale nō e hana ai, inā hiki, ʻo ia ke mālama i ke kumu o ka maʻi a pale i nā pilikia hou aʻe.

ʻO ka mālama ʻana i ka locked-in syndrome e komo pū me ka lāʻau lapaʻau kākoʻo a me ke aʻo kamaʻilio .

Hoʻōla kākoʻo

He mea nui ka mālama kākoʻo no ka hanu ʻana a me ka hānai ʻana, ʻoiai i nā pae mua. Pono pinepine ka poʻe me LiS i ​​ke kākoʻo hanu hana. Loaʻa iā lākou kahi tracheotomy (kahi paipu i hoʻokomo ʻia ma kahi lua liʻiliʻi ma ka ʻāʻī i loko o ka windpipe).

No ka mea, ʻaʻole palekana ke ʻai a inu paha ma ka waha me LiS, loaʻa i kēia poʻe kahi ʻōmole liʻiliʻi i kapa ʻia he ʻōmole gastrostomy (G-tube) i hoʻokomo pololei ʻia i loko o ko lākou ʻōpū. ʻO kēia kahi e hāʻawi ʻia ai ka meaʻai a me ka wai.

ʻO nā lāʻau lapaʻau ʻē aʻe e komo pū ana:

• Ke pale ʻana i nā pilikia e hiki mai ana mai ka neʻe ʻole ʻana. Eia kekahi laʻana:Nā mea e like me ka maʻi pneumonia, nā maʻi ʻaʻai urinary tract (UTIs), a me nā ʻōpū koko (thrombosis).
• Ke pale ʻana i nā ʻeha kaomi/nā ʻeha moe .
• E hāʻawi i ka lāʻau lapaʻau kino e pale aku i nā ʻūmiʻi o nā lālā, ʻo ia hoʻi ka emi ʻana o ka laulā o ka neʻe ʻana i hana ʻia e ka ʻoʻoleʻa o nā hono, nā ʻiʻo, a i ʻole nā ​​​​ʻiʻo palupalu o nā lālā.
• E hāʻawi i ka lāʻau lapaʻau kino e hoʻoponopono hou i kekahi mau neʻe manawaleʻa liʻiliʻi i koe a i ʻole e hoʻōla hou ana (inā he).

Hoʻomaʻamaʻa kamaʻilio

Hiki i nā mea hoʻōla ʻōlelo ke kōkua i ka poʻe me ka locked-in syndrome (LiS) e kamaʻilio maopopo ma o ka neʻe ʻana o nā maka a me ka ʻimo ʻana. He ʻokoʻa kēia ʻano kamaʻilio i kēlā me kēia kanaka. No ka laʻana, ʻo ka nānā ʻana i luna ke ʻano he "ʻae" a ʻo ka nānā ʻana i lalo ke ʻano he "ʻaʻole" (a i ʻole ka ʻaoʻao ʻē aʻe). Eia kekahi, ke heluhelu kekahi i kahi leka, hiki iā lākou ke kuhikuhi i ka leka a lākou e makemake ai e hoʻohana e hana i nā huaʻōlelo a me nā ʻōlelo.

Ma waho aʻe o nā hōʻailona neʻe maka, ʻo nā mea kamaʻilio uila , e like me nā mea ʻike neʻe maka infrared a me nā prosthetics leo kamepiula, ua ʻae i nā poʻe me LiS e kamaʻilio manuahi a komo i ka Pūnaewele.

Hiki ke ho'ōla piha ʻia mai ka locked-in syndrome (LiS)?

Ma muli o ke kumu o ka locked-in syndrome (LiS), hiki ke hoʻi hou kekahi mau hiki ke neʻe. Eia nō naʻe, he mea kākaʻikahi ka hoʻōla piha ʻana. Hiki i kekahi poʻe me LiS ke loaʻa i kekahi neʻe ʻana a me ka manaʻo ma kekahi mau ʻāpana o ko lākou kino.

ʻAʻole loaʻa hou i ka nui o ka poʻe ka hana aʻalolo i nalowale, akā hiki iā lākou ke aʻo e kamaʻilio ma o ka neʻe ʻana o nā maka.

Hiki ke pale ʻia ka locked-in syndrome (LiS)?

ʻO ka mea pōʻino, ʻaʻole hiki ke pale ʻia ka hapa nui o nā hihia o ka locked-in syndrome (LiS). Eia nō naʻe, inā ʻoe i ka pilikia kiʻekiʻe o ka loaʻa ʻana o ka hahau ʻana, hiki ke piʻi aʻe kou pilikia o ka loaʻa ʻana o LiS.

E kamaʻilio me kāu kauka e pili ana i kou pilikia o ka hahau ʻana a me nā ala e hōʻemi ai i kēlā pilikia.

He aha ka manaʻo no kekahi me ka locked-in syndrome (LiS)?

ʻO ka wānana no ka poʻe me ka locked-in syndrome (LiS) e pili ana i ke kumu o ka maʻi, ke ʻano o ka maʻi, a me ke kiʻekiʻe o ke kākoʻo a me ka mālama a lākou e loaʻa ai.

Ua ʻike ʻia i loko o kahi noiʻi hou nei ua hōʻike ka poʻe me LiS i ​​nā ola hauʻoli a ʻoi aku ka manaʻo, ʻoiai i ka wā i loaʻa ai iā lākou nā lawelawe kaiāulu maikaʻi a me nā ʻenehana adaptive i kōkua iā lākou e pāʻani i kahi kūlana maʻamau ma ka home a ma ke kaiāulu.

Hiki i nā poʻe he nui me LiS ke hoʻohana i kahi noho huila me ka mīkini a me kahi kamepiula me ka ʻenehana adaptive.

Pehea ka lōʻihi e hiki ai iā ʻoe ke ola me ka locked-in syndrome (LiS)?

ʻAʻole ola kekahi poʻe me ka locked-in syndrome (LiS) ma mua o nā pae mua o ka maʻi, ma muli o nā pilikia olakino. Eia nō naʻe, ola kekahi no 10 a 20 mau makahiki a hōʻike i kahi ola maikaʻi.

Pehea wau e mālama ai iaʻu iho, a i ʻole kekahi me LiS?

Inā loaʻa iā ʻoe ka maʻi locked-in (LiS), he mea nui e hōʻoia i ka loaʻa ʻana o ka mālama olakino maikaʻi e pale aku i nā pilikia e like me ka pneumonia a me nā ʻeha moe i hoʻokumu ʻia e ka paʻa ʻole.

He mea nui hoʻi e ʻimi i nā ala e kamaʻilio ai - inā paha ma o ka neʻe ʻana o nā maka a i ʻole nā ​​ʻenehana kōkua e like me ka ʻenehana nānā maka. E noʻonoʻo e hui pū me kahi hui kākoʻo e hālāwai me nā poʻe ʻē aʻe i loaʻa nā ʻike like.

Inā ʻoe e mālama ana i kekahi me `(LiS)` , he mea nui e kākoʻo ʻoe iā lākou e hōʻoia i ka loaʻa ʻana o ka mālama olakino maikaʻi loa a loaʻa iā lākou nā ʻenehana e kōkua iā lākou e kamaʻilio a lilo i kūʻokoʻa.

ʻO ka mea hope loa, ʻo ka mea nui loa (Leka Lawe-Home)

He maʻi laha ʻole a koʻikoʻi ka Locked-in Syndrome (LiS). Hiki ke hoʻoluhi ʻia ka loaʻa ʻana o kahi hōʻailona e like me kēia. Akā e hoʻomanaʻo, aia kāu hui lapaʻau ma laila e kākoʻo iā ʻoe a me kāu poʻe aloha. He mea nui e hoʻomau i ka loaʻa ʻana o ka mālama olakino maikaʻi a aʻo i nā ala hou e kamaʻilio ai i ka wā e noho pū ana me LiS.

Me ka mālama kākoʻo holomua a me nā holomua ʻenehana o kēia wā, nui ka poʻe me ka Locked-In Syndrome (LiS) e ola nei i nā ola piha a me ke ʻano nui. No laila, mai haʻalele i ka manaʻolana. Aia kahi hopena i kēlā me kēia pilikia, kahi ala e kū ai i kēlā me kēia pilikia.

ʻO ka maʻi paʻa, Pons, Maʻi lolo, Neurology, Paralysis, Kamaʻilio