Kei te ahua taumaha ō waewae i ētahi wā, me te mea he kōhatu? Kei te ahua rānei kei te ngaro tō taurite i a koe e hikoi ana, kei te memeha haere rānei te kaha o ō peka? Ki te kore ēnei tohu e puta ohorere mai, engari ka piki haere, ka piki haere, he mea nui pea kia mōhio koe ki tēnei āhuatanga e kiia nei ko te Primary Lateral Sclerosis (PLS). Kaua e manukanuka, ka kōrerohia e tātou ngā mea katoa i roto i ngā kupu māmā noa iho.
He aha te tikanga o te primary lateral sclerosis (PLS)?
Ko te Primary Lateral Sclerosis, arā, ko te PLS , he mate e pā ana ki ō tātou io me ō tātou uaua. Ka ngoikore haere, ka mārō haere rānei ō tātou uaua.
He maha ngā wā ka tīmata ēnei tohu i ō waewae. I roto i te wā, ka horapa pea tēnei ngoikore me te pakari ki ētahi atu uaua o tō tinana. He mate ahu whakamua tēnei, arā, ka kino haere ngā tohu i roto i te wā.
Kāore he rongoā motuhake mō tēnei mate (PLS), nō reira ko te whāinga matua o te maimoatanga ko te whakahaere i ngā tohu me te āwhina i a koe ki te mahi i ngā mahi o ia rā kia māmā ake. Hei tauira, mā te whakamahi i tētahi taputapu āwhina pērā i te tokotoko, i te taputapu hikoi rānei.
He tino onge tēnei mate, arā, kāore e kitea whānuitia ana i roto i te hapori.
He aha te rerekētanga i waenga i te PLS me te ALS?
Kua rongo pea koe i tētahi mate e kiia nei ko te Amyotrophic Lateral Sclerosis (ALS) . Ahakoa e pā ana ēnei mate ki ngā io me ngā uaua, he mārama ngā rerekētanga i waenganui i ngā mea e rua. Hei mārama ki tēnei, me titiro tuatahi tātou ki te whakahaere a ō tātou tinana i te nekehanga.
He momo pūtau io motuhake tēnei e kawe ana i ngā karere mai i tō tātou roro ki ō tātou uaua, e kiia ana ēnei he neuron motuka . E rua ngā momo o ēnei:
1. Ngā Neuron Motika o Runga (UMN): Koinei ngā 'waea matua' e kawe ana i ngā karere mai i te roro ki te taurakira.
2. Ngā Neuron Pūkaha o Raro (LMN): Koinei ngā 'neuron iti' e kawe ana i ngā karere tika mai i te taurakira ki ngā uaua.
He mea tino nui inaianei kia mārama ki tēnei rerekētanga.
I roto i te PLS , ko te UMN anake ka pāngia. Arā, ko ngā 'waea matua' anake e ahu mai ana i te roro ki te taurakira. I roto i te ALS , ka pāngia te UMN me te LMN .
He tino ōrite ngā tohu tōmua o te ALS ki ērā o te PLS. Nō reira, i ētahi wā ka tātaritatia koe e te tākuta ki te PLS, kātahi ka huri ki te ALS ina puta ngā tohu e pā ana ki te LMN. Mō tēnei take, hei whakaū i te PLS, me tirotiro ngā tohu mō te toru ki te whā tau pea te roa.
| Āhuatanga | Te Mate Pukupuku Taha Tuatahi (PLS) | Te Mate Pukupuku Āmiotrophic Lateral (ALS) |
|---|---|---|
| Ngā io e pāngia ana | Ngā Neuron Motika o Runga (UMN) anake . | Ngā Neuron Motika o Runga (UMN) me ngā Neuron Motika o Raro (LMN). |
| Te tere o te horapa o te mate | Tino pōturi (i roto i ngā tau maha, i ngā tekau tau rānei). | Tere tonu. |
| Pānga ki te roanga o te ora | I te nuinga o te wā, kāore he pānga tika ki te roanga o te ora. | Ka pāngia pea te roanga o te ora. |
He aha ngā tohu o te PLS?
Ka tino pōturi te puta mai o ngā tohu o te PLS. Anei ētahi o ngā tohu tuatahi ka kitea pea e koe:
- Te pakari o ngā uaua o ngā waewae.
- Te ngoikore o ngā uaua o ngā waewae.
- He uaua ki te hikoi , he uaua rānei ki te pupuri i te taurite.
- Te wiri o te uaua, te mamae rānei o ngā uaua, ngā kōroke rānei.
I te whanaketanga o te mate, ka puta pea ētahi atu tohu:
- Te pakari me te ngoikore o ngā uaua o ngā maihao, ngā ringa, me ngā ringaringa.
- Te uaua ki te whakahaere i te mimi(Te hiahia nui ki te mimi me te turuturu o te mimi).
- Te mamae o te tuara me te kaki.
I ētahi wā tino onge, ka pāngia hoki ngā uaua o te arero. I tēnei wā, ka kitea pea e koe ngā tohu pēnei i:
- Te kōrero pōturi (Dysarthria).
- Te uaua ki te horomi kai (Dysphagia).
He aha ngā take o te PLS?
Ina hoki, kāore anō kia mōhiotia te tino take o te PLS i roto i ngā pakeke. I te nuinga o te wā, ka puta noa mai, kāore he take e kitea ana.
Heoi anō, he momo PLS tino onge e pā ana ki ngā tamariki me ngā taiohi. Ka puta mai i te whakarerekētanga ira (te panoni o te DNA).
Ko te mea nui , ehara te PLS i te mate tuku iho. Ko te tikanga ka taea e koe te pāngia e tēnei mate ahakoa kāore anō kia pāngia e tētahi o tō whānau.
Ko wai te mea tino mōrearea?
Ka taea e te tangata katoa te pāngia e te PLS. Heoi, ko te tikanga ka kitea te mate i te hunga e 50 tau te pakeke. Heoi, ka taea hoki te pāngia e te hunga taitamariki, pakeke ake rānei. He nui ake te kitea o tēnei mate i roto i ngā tāne i ngā wāhine .
Me pēhea te tautuhi i tēnei mate?
I muri i te mōhio ki ō tohumate, ka whakahaerehia e tō tākuta he whakamātautau tinana me te whakamātautau io. Tērā pea ka whakahaerehia hoki e rātou he whakamātautau hei whakakore i ētahi atu mate e rite ana ngā tohumate ki te PLS, pērā i te ALS, te multiple sclerosis rānei. Ko ētahi o ēnei whakamātautau ko:
- Ngā whakamātautau toto: Tirohia mēnā he take kē atu.
- Ngā whakamātautau tātaritanga hiko: Ka ine tēnei i te pai o te mahi a ō io me ō uaua.
- Matawai MRI: Tangohia he whakaahua taipitopito o te roro me te taurakira hei tirotiro mēnā he raruraru kē atu.
- Wero i te tuaiwi (te pokanga tuaiwi): Ko te tikanga tēnei he tango i tētahi wai iti mai i tō tuaiwi, ka tirotirohia mēnā he rerekē.
He aha ngā maimoatanga?
E ai ki tā mātou i kōrero ai i mua, kāore he rongoā motuhake mō te PLS. Ko te whāinga o te maimoatanga he whakahaere i ngā tohu me te āwhina i a koe kia noho motuhake.
- Ngā Rongoā: Ka hoatu ngā rongoā hei whakaiti i te pakari o te uaua, te kopa, me te uaua ki te horomi (hei tauira, Baclofen, Tizanidine, Quinine, Diazepam).
- Whakaora tinana: E taunakihia ana te whakakori tinana hei whakaiti i te ngoikore o te uaua, hei whakanui ake i te ngāwari, me te pupuri i te nekenekehanga pai o ngā hononga.
- Ngā taputapu āwhina: Ka whakamahia ngā taputapu pēnei i te tokotoko, te kaiārahi hikoi , te tūru wīra rānei hei āwhina i a koe ki te neke takitahi.
- Whakaora kōrero: Mena he uaua ki a koe te kōrero, ka taea e ia te āwhina.
He mea nui: I mua i te tīmatanga o tētahi rongoā, kōrero ki tō tākuta mō ngā pānga taha ka pā mai.
Āhea koe me toro atu ki te tākuta?
Ki te mea kei te piki haere te pakari, te ngoikore rānei o ō uaua, me toro atu ki tō tākuta.
Waihoki, ki te mea kua tākutatia kētia koe kei te pāngia koe e te PLS, ā, kei te kino haere ngā tohumate, kei te pāngia rānei koe e ngā pānga taha o te rongoā e tangohia ana e koe, me kōrero anō hoki ki tō tākuta.
Ki te whara koe i te hinganga ohorere, i te aituā rānei, haere tonu ki te Wāhanga Maimoatanga Ohotata (ETU) o te hōhipera.
He mea noa te pouri i te mea ka heke haere te kaha o ō uaua, ā, kāore e taea e koe te mahi i ngā mea i mahia e koe i mua. Mena kei te pāngia koe e te ahotea mō ēnei huringa tinana, he pai te kōrero ki tētahi kaitohutohu hauora hinengaro .
Karere Tangohia ki te Kāinga
- He mate tino āta haere te PLS ka pā ki ngā io me ngā uaua.
- Ka pāngia anake ngā io e kawe ana i ngā karere mai i te roro ki te taurakira (UMN) e tēnei. Koinei te rerekētanga mai i te ALS.
- Ahakoa kāore he rongoā motuhake mō tēnei, kei reira ngā maimoatanga whai hua hei whakahaere i ngā tohumate me te whakamāmā ake i te oranga.
- Ko te mea nui , kāore te PLS e whakapoto i te roanga o te oranga o te tangata .
- Mena kei te piki haere te ngoikore, te pakari rānei o ō uaua, me toro atu ki te tākuta mō ētahi tohutohu.











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