Ke nāwaliwali mālie nei kou mau ʻiʻo? ʻAʻole paha ʻoe i ʻike he Primary Lateral Sclerosis (PLS) ia! E kamaʻilio kākou e pili ana i kēia!

Ke manaʻo nei ʻoe i kekahi manawa e mae mālie ana kou mau wāwae a me kou mau lima, a i ʻole e emi ana kou ikaika? Ke manaʻo nei ʻoe ʻaʻole ʻoe i ikaika e like me ma mua ke hele ʻoe, a malia paha e nalowale ana kou kaulike? ʻOiai he mau hōʻailona kēia āu e nānā ʻole ai, i kekahi manawa aia paha kekahi kumu koʻikoʻi ma hope o lākou. ʻO ia ka Primary Lateral Sclerosis, a i ʻole PLS no ka pōkole.

E nānā wale kākou i ke ʻano o kēia PLS?

I ka ʻōlelo maʻalahi, he maʻi neuromuscular holomua ka PLS. Hoʻonāwaliwali mālie ia i kou mau ʻiʻo a/a i ʻole e paʻakikī. Hoʻomaka pinepine nā hōʻailona ma kou mau wāwae. I ka hala ʻana o ka manawa, hiki i kēia nāwaliwali a me ka paʻakikī ke laha i nā ʻiʻo ʻē aʻe o kou kino.

E noʻonoʻo i kēia ʻano: hana ko kākou mau ʻiʻo e like me kahi mea uila. Pono lākou e loaʻa i ke 'aupuni', ka leka mai ka lolo, e like me ka mea e pono ai. I loko o PLS, ua hōʻino ʻia nā hunaola nerve i kapa ʻia ʻo Upper Motor Neurons (UMN), e like me nā 'uea' e lawe ana i kēia mau leka.

ʻO ka mea pōʻino, ʻaʻohe lāʻau lapaʻau no PLS i kēia manawa. No laila, ʻo ka mālama ʻana ke kau nui ʻia ma ka kaohi ʻana i kāu mau hōʻailona a me ke kōkua ʻana iā ʻoe e hana i nā hana o kēlā me kēia lā me ka maʻalahi. Eia kekahi laʻana, ke kōkua ʻana iā ʻoe e hoʻohana i ke koʻokoʻo a i ʻole ka mea hele wāwae.

Pehea ka maʻamau o ka PLS?

He maʻi laha ʻole ka PLS. ʻAʻohe helu i kēia manawa e pili ana i ka nui o ka poʻe e loaʻa ana.

He aha ka ʻokoʻa ma waena o PLS a me ALS? Hiki iā PLS ke lilo i ALS?

Ua lohe paha ʻoe i ka ALS, a i ʻole Amyotrophic Lateral Sclerosis. ʻO PLS a me ALS nā maʻi o nā aʻalolo a me nā ʻiʻo. Akā, aia nā ʻokoʻa koʻikoʻi ma waena o nā mea ʻelua.

ʻO ka ʻokoʻa nui, ʻo ka PLS wale nō ka hopena o kāu mau neuron motor luna (UMN) . ʻO kēia nā aʻalolo e lawe i nā leka mai ka lolo a i ke kaula spinal. I ka ALS, ua hoʻopilikia ʻia kēia mau UMN, e like me nā neuron motor lalo (LMN) , e lawe ana i nā leka mai ke kaula spinal a i nā ʻiʻo.

I kēia manawa, ke noʻonoʻo nei paha ʻoe, 'No laila, hiki i kekahi me PLS ke hoʻomohala i ka ALS ma hope?' ʻAe, aia kahi manawa e hiki ai. I kekahi manawa hiki ke like nā hōʻailona mua o ALS me PLS. Inā loaʻa iā ʻoe nā hōʻailona e hoʻopilikia wale i ka UMN, hiki ke ʻike mua ʻia ʻoe me PLS. Akā inā loaʻa iā ʻoe ma hope nā hōʻailona ALS e hoʻopilikia i ka UMN a me LMN, hiki i kāu kauka ke hoʻololi i kāu hōʻailona i ALS.

ʻO kaʻoiaʻiʻo, he nui nā hihia e like me PLS hiki ke lilo i mau hōʻailona mua o ALS e hoʻopilikia ana i ka UMN (`UMN-predominant ALS`). ʻO ia ke kumu e ʻōlelo ai nā kauka i mea e ʻike pono ʻia ai me PLS, pono ʻoe e loaʻa nā hōʻailona no ka liʻiliʻi o ʻekolu a ʻehā mau makahiki .

He aha nā hōʻailona o ka PLS?

Hōʻike mālie loa nā hōʻailona o PLS.ʻAʻole ʻoe e ʻike koke i kahi ʻokoʻa nui.

Nā hōʻailona hiki ke ʻike ʻia i nā pae mua:

I ka wā mua, hiki iā ʻoe ke manaʻo i nā mea penei:

• ʻOʻoleʻa ma nā wāwae. Manaʻo paha ia ua paʻa kou mau wāwae.
• Lilo nā ʻiʻo o kou mau wāwae i nāwaliwali. Manaʻo paha ʻoe ʻaʻole ʻoe i ikaika e like me ka wā ma mua.
• Lilo i mea paʻakikī ke hele wāwae, a i ʻole e mālama i kou kaulike. Hiki iā ʻoe ke kuʻia a hāʻule paha.
• Hana ʻia nā ʻūmiʻi ʻiʻo a i ʻole nā ​​ʻeha ʻeha.

Nā hōʻailona e hiki ke ʻike ʻia i ka wā e holomua ai ka maʻi:

I ka holomua ʻana o ka maʻi, hiki ke ʻike ʻia nā hōʻailona ʻē aʻe e like me kēia:

• Lilo hoʻi nā ʻiʻo o nā manamana lima, nā lima, a me nā lima i ʻoʻoleʻa a nāwaliwali. Hiki ke paʻakikī ke hopu i nā mea liʻiliʻi a i ʻole ke kākau.
• Paʻakikī ke kāohi ʻana i ka mimi. Hiki i kēia ke alakaʻi i ka wikiwiki o ka mimi a me ka hoʻōki ʻole o ka mimi.
• Loaʻa ka ʻeha ma ke kua haʻahaʻa a me ka ʻāʻī.

Nā hōʻailona kakaikahi e hoʻopilikia ana i nā ʻiʻo o ke alelo:

He mea kākaʻikahi loa kēia, akā hiki i kekahi poʻe ke loaʻa nā ʻiʻo alelo. Inā hana ʻia kēia:

• Hiki mai ka ʻōlelo ʻana me ka ʻole o ka leo (dysarthria). Lilo ia i mea paʻakikī ke haʻi maopopo i nā huaʻōlelo.
• Paʻakikī ke ale ʻana (dysphagia). Manaʻo paha ʻoe e like me ʻoe e ʻū ana i ka wā e ale ai ʻoe i ka meaʻai a mea inu paha.

He aha ke kumu o ka PLS?

I ka hapanui o nā hihia, ʻaʻole mākou i ʻike i ke kumu kikoʻī o PLS. ʻO ia ka ʻoiaʻiʻo.

Eia nō naʻe, he mea kākaʻikahi loa, aia kekahi ʻano PLS ​​e hoʻopilikia i nā keiki ʻōpio a me nā mākua ʻōpio ('juvenile primary lateral sclerosis'). Hoʻokumu ʻia kēia e kahi loli i kā lākou DNA i ka manawa o ka hāpai ʻana.

He aha ka mea e hana ʻia i ko mākou kino mai PLS?

He maʻi neuromuscular ka PLS. Hoʻopilikia nui ia i nā neurons motor i loko o kou lolo a me nā olonā nerve e hoʻonui ana mai kēlā mau neurons a i ke kaula spinal. Ua kapa ʻia kēia mau mea ʻo nā neurons motor luna ( UMN).

E noʻonoʻo, ke makemake ʻoe e hoʻoneʻe i kou wāwae, hoʻouna kou lolo i kahi leka. Hele kēia leka ma nā olonā nerve i nā neurons ma ke kaula spinal, a mai laila aku i nā ʻiʻo manawaleʻa ma kou wāwae. Ke loaʻa i nā ʻiʻo kēia leka, neʻe lākou.

I loko o PLS, make mālie kēia mau hunaola aʻalolo UMN (degeneration). A laila, ʻaʻole loaʻa pono i nā ʻiʻo nā leka e pono ai, no laila ʻaʻole hana nā ʻiʻo e like me ka mea i manaʻo ʻia.

He maʻi hoʻoilina anei kēia?

ʻAʻole maʻamau ka PLS i hoʻoilina. ʻO ke ʻano kēia hiki iā ʻoe ke loaʻa iā ia inā ʻaʻohe mea o kou ʻohana i loaʻa iā ia. ʻO ka hapa nui o ka manawa, hiki wale mai ia me ka ʻole o ka mōʻaukala ʻohana o ka maʻi.

ʻO wai ka mea i ʻoi aku ka nui o ka pilikia o ka hoʻomohala ʻana i ka PLS?

Hiki i ka PLS ke hoʻopilikia i kekahi. ʻIke pinepine ʻia ia ma kahi o 50 mau makahiki. Eia nō naʻe, hiki iā ia ke hoʻopilikia i ka poʻe ma lalo o 50 mau makahiki, ka poʻe ʻelemakule, a me nā keiki. He mea maʻamau iki ia i nā kāne.

He aha nā pilikia e hiki ke hana ma muli o ka PLS?

I ka holomua ʻana o ka PLS, paʻakikī paha iā ʻoe ke hele me ke kōkua ʻole. Pono paha ʻoe e hoʻohana i ke koʻokoʻo, ka mea hele wāwae, a i ʻole ka noho huila. Eia kekahi, i ka nāwaliwali o kou mau ʻiʻo, hiki iā ʻoe ke nalowale i kou kaulike a hāʻule maʻalahi. Inā hana ʻoe pēlā, hiki iā ʻoe ke ʻeha.

Pehea e ʻike ʻia ai ka PLS?

E nānā ke kauka i ka PLS ma hope o ka hoʻokolokolo kino, kahi hoʻokolokolo neurological, a me kekahi mau hoʻāʻo kūikawā ʻē aʻe. E nānā lākou i kāu mau hōʻailona a hoʻāʻo e kāpae i nā kūlana ʻē aʻe i loaʻa nā hōʻailona like, e like me ALS a i ʻole ka sclerosis maha. Hiki ke hoʻohana ʻia nā hoʻokolohua aʻe e hana i kahi hōʻailona:

• Nā hoʻāʻo koko.
• Nā hoʻokolohua electrodiagnostic - Nānā kēia i ka maikaʻi o ka hana ʻana o kou mau aʻalolo a me nā ʻiʻo. ʻO nā hiʻohiʻona e komo pū me nā haʻawina hoʻoili aʻalolo a me nā haʻawina electrode nila.
• ʻO kahi hoʻokolohua MRI (Magnetic Resonance Imaging) o ka lolo a me ke kaula spinal.
• Ka nānā ʻana i ka wai Cerebrospinal (CSF). Hana ʻia kēia ma ka lawe ʻana i kahi wai liʻiliʻi mai kou iwi kuamoʻo (kahi lumbar puncture a i ʻole spinal tap) e nānā i nā mea ʻē aʻe e pili ana i nā maʻi neuromuscular.

He aha nā lāʻau lapaʻau no PLS?

ʻO ke kumu o ka mālama ʻana no PLS ke kōkua iā ʻoe e hoʻokele i kāu mau hōʻailona. Hiki ke komo pū me kēia:

• Nā lāʻau lapaʻau e hōʻemi i ka ʻoʻoleʻa o nā ʻiʻo, ka ʻōʻopa, a me ka paʻakikī i ke ale ʻana.
• Hoʻoikaika kino e hōʻemi i ka nāwaliwali o nā mākala, hoʻomaikaʻi i ka palupalu o nā mākala, a hoʻomaikaʻi i ka laulā o ka neʻe ʻana o nā hono.
• Nā mea hana e kōkua ai i nā hana o kēlā me kēia lā a me ka neʻe ʻana. Eia kekahi laʻana, he koʻokoʻo, he mea hele wāwae, a he noho huila paha.
• Hoʻōla ʻōlelo a i ʻole nā ​​​​​​mea hana e kōkua ai i nā pilikia ʻōlelo.

Nā lāʻau lapaʻau i hāʻawi ʻia no nā hōʻailona PLS:

ʻO kekahi o nā lāʻau lapaʻau i kuhikuhi pinepine ʻia no nā hōʻailona PLS:

• No ka ʻoʻoleʻa o nā ʻiʻo: `(Baclofen)` a me `(Tizanidine)`
• ʻEhaʻeha ʻiʻo: `(Quinine)`
• No ka hoʻomaha ʻana i nā ʻiʻo: `(Diazepam)`

Aia kekahi mau hopena ʻaoʻao o ka lāʻau lapaʻau?

ʻAe, e like me nā lāʻau lapaʻau āpau, hiki i kēia ke loaʻa nā hopena ʻaoʻao. ʻOkoʻa nā hopena ʻaoʻao ma muli o ka lāʻau lapaʻau. No laila, he mea nui loa e kamaʻilio me kāu kauka e pili ana i nā hopena ʻaoʻao ma mua o ka hoʻomaka ʻana i kekahi lāʻau lapaʻau.

Hiki ke pale ʻia a hoʻōla ʻia paha ka PLS?

ʻOiai ʻaʻole ʻike ʻia ke kumu pololei o PLS, ʻaʻohe ala e pale aku ai i kona ulu ʻana.

Eia kekahi, me ke kaumaha, ʻaʻohe lāʻau lapaʻau i kēia manawa e hiki ke ho'ōla loa i ka PLS.

He aha ke ola o kekahi me PLS? He aha kā lākou e manaʻo ai?

ʻAʻole pili pololei ka PLS i kou manaʻolana ola. Hiki i ke kanaka me PLS ke loaʻa i kahi ola maʻamau, e like me kekahi me ka ʻole o ka maʻi.

ʻOkoʻa ka wikiwiki o ka ʻike ʻia ʻana o kāu mau hōʻailona a me ka wikiwiki o ko lākou ʻino ʻana mai kēlā kanaka a i kēia kanaka. Ma keʻano laulā, lohi loa ka holomua ʻana o ka sclerosis ʻaoʻao mua, i nā makahiki, i kekahi manawa he mau makahiki. Akā inā manaʻo koke ʻoe e ʻino ana kāu mau hōʻailona, ​​e ʻike koke i kāu kauka.

Hiki i nā lāʻau lapaʻau ke kōkua i ka hōʻemi ʻana i kāu mau hōʻailona a kōkua iā ʻoe e hoʻokō i kāu mau hana o kēlā me kēia lā me ke keakea ʻole. Makemake paha ʻoe e noʻonoʻo e hoʻohana i ke koʻokoʻo, ka mea hele wāwae, a i ʻole ka noho huila e kōkua iā ʻoe e ʻoi aku ka palekana a me ka hilinaʻi i ka wā e hele ai.

Āhea ʻoe e ʻike ai i ke kauka?

Inā ʻike ʻoe i kekahi mau loli mālie i kou mau ʻiʻo, e like me ka ʻoʻoleʻa a nāwaliwali paha, e kamaʻilio me kāu kauka. Inā ua ʻike ʻia ʻoe me PLS, inā he lāʻau lapaʻau āu e lawe nei e hoʻonui ana i kou mau hōʻailona, ​​a inā paha ʻoe e ʻike nei i nā hopena ʻaoʻao, e haʻi pū i kāu kauka e pili ana i kēlā.

ʻO ka mea nui loa: Inā hāʻule ʻoe a ʻeha paha i kahi ulia pōpilikia, e hele koke i ka lumi pilikia.

Nā nīnau e nīnau aku ai i kāu kauka

Inā loaʻa iā ʻoe ka PLS, he nui kāu mau nīnau e nīnau aku ai i kāu kauka. Eia kekahi laʻana:

• He aha nā lāʻau lapaʻau e hiki ke kōkua i ka kaohi ʻana i kaʻu mau hōʻailona?
• He aha nā hopena ʻaoʻao o ka lāʻau lapaʻau?
• Pehea e ʻike ai au inā e ʻoi aku ka ʻino o koʻu kūlana i ka hala ʻana o ka manawa?
• He aha nā hoʻomaʻamaʻa e hiki iaʻu ke hana e mālama i koʻu hana ʻiʻo?
• Pono anei iaʻu e hoʻohana i ke koʻokoʻo a i ʻole ka mea hele wāwae?

ʻO ka hope loa, he leka lawe-i-ka-home

ʻO ka hoʻololi ʻana i kahi kūlana holomua e hoʻopilikia ai i kou hiki ke hoʻoneʻe i kou kino hiki ke paʻakikī loa. Hiki i kekahi o nā mea āu i hauʻoli ai ke hana i mea paʻakikī. ʻOiai ke holomua mālie nei ka primary lateral sclerosis (PLS), hiki iā ia ke hoʻopilikia i kou ola o kēlā me kēia lā.

Inā hoʻopilikia kēia mau loli kino i kou ʻano, hiki iā ʻoe ke loaʻa ka hōʻoluʻolu ma ke kamaʻilio ʻana me kahi loea olakino noʻonoʻo .ʻAʻohe mea e hilahila ai, nui ka poʻe e pono ke kōkua i nā manawa e like me kēia.

Inā ʻike ʻoe i kahi loli i kou ikaika ʻiʻo, e ʻike koke i ke kauka. Hiki iā lākou ke kuhikuhi i nā lāʻau lapaʻau a i ʻole nā ​​​​mea hana neʻe e kōkua iā ʻoe e lilo i kūʻokoʻa a ʻoluʻolu hoʻi. E hoʻomanaʻo, ʻaʻole ʻoe ma kēia huakaʻi hoʻokahi.

ʻO ka sclerosis ʻaoʻao mua, PLS, nāwaliwali o nā ʻiʻo, neuropathy, nā neurons motor, ALS, nā hōʻailona