He aha te Mate Pūtake o te taha o te taha? Ngā Tohutohu, Ngā Take, me te Maimoatanga

Ko te mate pūtake o te taha o te taha (PLS) tētahi mate pūtau neurological onge e pā ana ki ngā pūtau io e kawea ana te nekehanga o ngā uaua. Kāore i rite ki ētahi atu mate pūtau io, ko te PLS anake te whakaeke i ngā pūtau io o runga i roto i tō roro me tō tuaiwi, e pā ana ki te uaua o ngā uaua me te ngoikore i te wa roa.

Ka tino hāere te mate nei, he maha tonu ngā tau e hiahiatia ana kia tino whanake. Ahakoa he uaua pea te noho tahi me te PLS, ko te mārama ki te mea kei te tupu i roto i tō tinana ka taea e koe te mahi tahi me tō rōpū hauora kia whakahaerehia ngā tohutohu me te pupuri i tō kounga ora.

He aha te Mate Pūtake o te taha o te taha?

Ko te mate pūtake o te taha o te taha tētahi mate pūtau io e pā ana ki ō pūtau io o runga. Ko ēnei ngā pūtau io i roto i tō roro e tuku ana i ngā tohu ki raro i tō tuaiwi hei whakahaere i ngā nekehanga uaua ngākau rite ki te hikoi, te kōrero, me te horomi.

Ina pakaru ēnei pūtau, kāore e taea e rātou te whakawhiti korero pai ki ō uaua. Ka arahina tenei ki te uaua o ngā uaua, te ngoikore, me te uaua ki ngā nekehanga whakahaere. Ko te kupu “pūtake” te tikanga ko te mate matua ia, kāore i puta mai i tētahi atu mate.

E kiia ana ko te PLS tētahi āhuatanga onge, e pā ana ki te iti iho i te 2 tangata ia 100,000. Ka tino whanake i roto i ngā pakeke i waenga i ngā tau 40 me te 60, ahakoa ka puta i tetahi tau. Ka tino hāere te mate nei i te whakataurite ki ētahi atu mate pūtau io, e tuku ana i ngā tangata he wa roa ake hei whakarite me te whakatakoto mahere.

He aha ngā Tohutohu o te Mate Pūtake o te taha o te taha?

Ka tino whanake ngā tohutohu o te PLS, a ka rerekē mai i te tangata ki te tangata. Ko te nuinga o ngā tangata ka kite tuatahi i te uaua o ngā waewae, ahakoa ka tīmata ngā tohutohu i ētahi atu wāhi o te tinana.

Ko ēnei ngā tohutohu tino noa ka pā ki a koe:

• Te uaua o ngā uaua me te spasticity, inā te nuinga i ngā waewae
• Te ngoikore e tīmata ana i ngā waewae, ā, ka horapa pea ki runga
• Te uaua ki te hikoi, ki te pupuri rānei i te taurite
• Ngā nekehanga puhoi, kaha
• Ngā mamae uaua, ngā uaua rānei
• Ngā huringa i te kōrero, tae atu ki te kōrero ngākau, puhoi rānei
• Te uaua ki te horomi (dysphagia)
• Ngā whakaata nui ina whakamātauhia e te taote

Ka pā pea ki ētahi atu tangata ngā tohutohu onge. Ka uru pea ēnei ki ngā huringa ngākau rite ki te kata, ki te tangi rānei (e kiia ana ko te pānga pseudobulbar), te ngenge, ā, i etahi wā ngā huringa hinengaro iti. Ko te haere tonu te puhoi, me ngā tohutohu e kino ake ana i ngā marama, i ngā tau rānei, kāore i ngā wiki.

He mea nui kia mahara ko te PLS e pā ana ki te tangata katoa. Ka pā pea ki ētahi tangata ngā tohutohu waewae nui mō ngā tau, ā, ka pā pea ki ētahi atu ngā uaua kōrero, horomi rānei i te tīmatanga o te mate.

He aha ngā Take o te Mate Pūtake o te taha o te taha?

Ko te take tika o te mate pūtake o te taha o te taha kāore i te mohiotia i te nuinga o ngā take. E whakapono ana ngā kairangahau ko te hua mai i te whakakotahitanga o ngā take ira me ngā taiao e arahina ana ki te pakaru haere o ngā pūtau io o runga.

I te nuinga o ngā take, ka puta mai te PLS i te koretake, te tikanga ka whanake mai kāore he hītori whānau mārama. Heoi, kua kitea e ngā kāre e pā ana ki ētahi take āwhina:

• Ngā rerekētanga ira i roto i ngā ira motuhake rite ki te ALS2, ahakoa he onge ēnei
• Te kohikohi pūtau koretake i roto i ngā pūtau io
• Ngā raruraru ki te whakaputa pūtau kaha
• Te mumura i roto i te pūnaha io
• Te ahotea oxidative e pakaru ana i ngā pūtau i te wa roa

I roto i ngā take onge rawa, ka taea te whakawhiwhi i te PLS, inā tetahi momo taitamariki e pā ana ki ngā tamariki me ngā tāne taitamariki. Ko tenei momo whakawhiwhi e hono ana ki ngā rerekētanga i roto i te ira ALS2, ā, ka tino hāere te puhoi i te ahua pakeke.

Ka pā pea ngā take taiao, ahakoa kāore he whakaohooho motuhake i te whakatau. Ka haere tonu te rangahau ki ngā hononga pea ki ngā mate, ngā poizon, ki ētahi atu take o waho, engari he nui ake te rangahau e hiahiatia ana kia mārama ki ēnei hononga.

Nōhea te Tiro atu ki te Taote mō te Mate Pūtake o te taha o te taha?

Me tiro atu koe ki te taote ki te kite koe i te uaua o ngā uaua, te ngoikore, ngā huringa rānei i roto i tō nekehanga kāore e pai ake me te okioki. He mea nui te aromatawai wawe, na te mea he maha ngā āhuatanga ka puta mai ngā tohutohu rite, ā, ka roa te wā kia tika te whakatau.

Whakatau rānei he hui ki te pā atu koe ki ētahi o ēnei tohu āwangawanga:

• Te ngoikore e haere tonu ana i ō waewae, i ō ringa rānei
• Te uaua o ngā uaua e āwangawanga ana ki ngā mahi o ia rā
• Te uaua ki te hikoi, ki te tū rānei
• Ngā huringa i tō kōrero, i tō reo rānei
• Ngā raruraru ki te horomi kai, wai rānei
• Ngā mamae uaua e tino nui ake ana, e kino ake rānei

Kaua e tatari ki te whanake mai ngā uaua horomi, na te mea ka pā pea tenei ki tō kai me tō haumaru. Pēnei, ko ngā raruraru taurite nui he mea nui kia tere te tiaki hauora kia kaua e tū, kia whara rānei.

Ka taea e tō taote matua te mahi i te aromatawai tuatahi, ā, ka tuku atu koe ki te neurologist ki te hiahiatia. Ko ngā neurologists te hunga tohunga i ngā āhuatanga e pā ana ki te pūnaha io, ā, he tohungatanga ki te whakatau, ki te whakahaere rānei i te PLS tika.

He aha ngā Take Pānga mō te Mate Pūtake o te taha o te taha?

He maha ngā take ka nui ake tō tūponotanga ki te whanake i te mate pūtake o te taha o te taha, ahakoa ko te whai i ngā take pānga kāore te tikanga ka whanake koe i te āhuatanga. Ko te mārama ki ēnei take ka taea e koe te pupuri i te mataara ki ngā tohutohu pea.

Ko ngā take pānga matua ko ēnei:

• Te tau, inā te nuinga i waenga i ngā tau 40 me te 60
• Te hītori whānau o ngā mate pūtau io (ahakoa he onge tenei)
• Te ira tane, na te mea he iti te tūponotanga o ngā tāne ki te whanake i te PLS
• Ētahi rerekētanga ira, inā te nuinga i roto i ngā whānau he āhua whakawhiwhi

Kāore i rite ki ētahi atu āhuatanga neurological, ko ngā take oranga rite ki te whakakī, te kai, te whakakori rānei kāore e kitea he pānga nui ki te pānga PLS. Heoi, ko te pupuri i te hauora pai katoa he pai tonu, ā, ka taea e koe te awhina i a koe ki te whakahaere pai i ngā tohutohu ki te whanake mai.

He mea tika kia mōhio ko te PLS he onge rawa, na te mea ahakoa he take pānga koe, kāore te tikanga ka whanake koe i te āhuatanga. Ko te nuinga o ngā tangata he take pānga kāore e whanake i te PLS, ā, he maha ngā tangata e whanake ana kāore he take pānga mārama.

He aha ngā Hua pea o te Mate Pūtake o te taha o te taha?

Ahakoa ka tino hāere te PLS, ka taea e ia te arahi ki ngā hua maha i te wa roa. Ko te mataara ki ēnei āhuatanga ka awhina i a koe me tō rōpū hauora ki te whakatakoto mahere i te tiaki me ngā whakauru tika.

Ko ngā hua tino noa ko ēnei:

• Ngā raruraru nekehanga e hiahia ana pea ki ngā taputapu awhina i te mutunga
• Te nui ake o te tūponotanga o te tū na te uaua ki te taurite me te hikoi
• Ngā raruraru horomi e taea ai te whakakī, te manawa rānei
• Ngā uaua kōrero e hiahia ana pea ki ngā awhina whakawhitiwhiti korero
• Ngā uaua contractures mai i te uaua roa
• Te motu hapori na te uaua ki te nekehanga me te whakawhitiwhiti korero

Ka whanake pea ētahi tangata i ngā hua nui ake, inā te nuinga i ngā wāhanga matatau. Ka uru pea ēnei ki ngā uaua horomi nui e hiahia ana ki ngā tūpū kai, ngā raruraru manawa ki te pānga ngā uaua manawa, me te nui ake o te tūponotanga ki ngā mate na te iti o te nekehanga.

Ko te rongo pai ko te maha o ngā hua ka taea te aukati, te whakahaere rānei me te tiaki tika. Ka taea e te whakakori tinana te awhina i te pupuri i te nekehanga, ka taea e te whakakori kōrero te whakautu i ngā take whakawhitiwhiti korero, ā, ka taea e te whakakori mahi te awhina i te whakarite i ō mahi o ia rā me tō taiao kia pupuri ai i tō mana motuhake.

Me pēhea te aukati i te Mate Pūtake o te taha o te taha?

I tēnei wā, kāore he huarahi e mohiotia ana hei aukati i te mate pūtake o te taha o te taha, na te mea kāore i te mārama te take tika. Heoi, ko te pupuri i te hauora neurological katoa ka pai pea, ahakoa kāore e whakamana i te aukati.

Ko ngā mahi hauora roro me te pūnaha io whānui ko te noho mahi tinana, te kai i te kai tino pai i ngā antioxidants, te moe pai, me te whakahaere pai i te ahotea. Ko ēnei tikanga e tautoko ana i te oranga pai katoa, ā, ka awhina pea i tō pūnaha io kia mahi pai.

Mō ngā whānau he hītori PLS whakawhiwhi, ka taea e te tohutohu ira te tuku i ngā korero nui mō ngā tūponotanga me ngā whakaaro whakatakoto whānau. Heoi, koinei te pānga ki ngā take iti rawa, na te mea ko te nuinga o te PLS ka puta mai i te koretake kāore he hītori whānau.

Ka haere tonu te rangahau ki ngā rautaki aukati, engari i tēnei wā ka āta whakaaro nui atu ki te mārama ki ngā tikanga mate i ngā mahi aukati motuhake. Ko te mea nui rawa atu ka taea e koe ko te noho mohio ki ngā tohutohu me te rapu awhina hauora tere ki te whanake mai ngā tohu āwangawanga.

Me pēhea te Whakatau i te Mate Pūtake o te taha o te taha?

Ko te whakatau i te mate pūtake o te taha o te taha e hiahia ana ki te aromatawai atawhai e te neurologist, na te mea kāore he whakamātautau kotahi e taea ai te whakamana i te āhuatanga. Ko te whakatau e tino mahia ana mā te whakakore i ētahi atu āhuatanga e puta mai ana ngā tohutohu rite.

Ka tīmata tō taote me te hītori hauora me te whakamātautau tinana, e āta aro ana ki ō whakaata, te kaha o ngā uaua, me te whakahaere. Ka titiro rātou ki ngā tohu o te mahi kore o ngā pūtau io o runga, pēnei i ngā whakaata nui me te uaua o ngā uaua.

Ka taea te whakamahi i ētahi whakamātautau hei tautoko i te whakatau:

• Te Electromyography (EMG) hei tirotiro i te mahi o ngā io me ngā uaua
• Ngā whakaahua MRI o tō roro me tō tuaiwi
• Ngā whakamātautau toto hei whakakore i ētahi atu āhuatanga
• Te whakamātautau ira i ētahi wā
• Te whakawhāiti lumbar (spinal tap) i etahi wā

Ka roa pea te tukanga whakatau, na te mea me āta tirotiro e ngā taote te haere tonu o ō tohutohu. Ko te PLS e wehewehea ana mai i te ALS mā te kore o ngā tohu pūtau io iti me tōna haere tonu puhoi. Ka hiahia pea tō neurologist ki te tirotiro i a koe mō ngā marama maha, i ngā tau rānei kia tika te whakatau.

He mea nui te whiwhi i te whakatau tika, na te mea ka pā tenei ki ngā whakatau maimoatanga, ā, ka awhina i a koe ki te mārama ki te mea e tatari ana koe. Kaua e whakaroa ki te ui i ngā pātai mō te tukanga whakatau, ā, rapua he whakaaro tuarua ki te kore koe e tino mohio ki ngā hua.

He aha te Maimoatanga mō te Mate Pūtake o te taha o te taha?

Ahakoa kāore he rongoā i tēnei wā mō te mate pūtake o te taha o te taha, he maha ngā maimoatanga ka taea te awhina i te whakahaere i ngā tohutohu me te whakapai ake i tō kounga ora. Ko te whāinga ko te pupuri i te mahi, te aukati i ngā hua, me te awhina i a koe ki te whakarite ki ngā huringa i te wa e puta mai ana.

Ko ngā whiringa rongoā e āta whakaaro ana ki te whakahaere i te uaua o ngā uaua me te spasticity:

• Baclofen hei whakaiti i te uaua o ngā uaua me ngā uaua
• Tizanidine hei whakakapi i te uaua whakahaere
• Ngā whakaurunga botulinum toxin mō te spasticity rohe
• Gabapentin mō ngā mamae uaua me te mamae
• Ngā rongoā pouri ki te puta mai ngā huringa ngākau

He mahi nui te whakakori tinana i te whakahaere PLS. Ka taea e te kaiwhakakori tinana te whakaako i a koe i ngā whakakori hei pupuri i te ngawari, te whakapakari i ngā uaua kāore i pāngia, me te whakapai ake i te taurite. Ka awhina rātou i a koe ki te ako ki te whakamahi i ngā taputapu awhina haumaru i te wa e huri haere ana ō hiahia.

Ka nui te mahi a te whakakori kōrero ki te whanake mai ngā uaua whakawhitiwhiti korero, horomi rānei. Ka taea e ngā kaiwhakakori kōrero te whakaako i ngā tikanga hei whakapai ake i te mārama kōrero me te awhina i a koe ki te ako i ngā rautaki horomi haumaru. Ka whakauru pea rātou i ētahi atu tikanga whakawhitiwhiti korero ki te hiahiatia.

Ka awhina te whakakori mahi i a koe ki te whakarite i ō mahi o ia rā me tō taiao kia pupuri ai i tō mana motuhake. Ka uru pea tenei ki te tūtohutia ngā taputapu whakarite, te whakarereke i tō kāinga, te whakaako rānei i ngā tikanga tiaki kaha.

Me pēhea te tango i te maimoatanga kāinga i te wa o te Mate Pūtake o te taha o te taha?

Ko te whakahaere i te PLS i te kāinga e uru ana ki te hanga i te taiao tautoko me te pupuri i ngā mahi e awhina ana i te pupuri i tō mahi me tō oranga pai. Ko ngā whakarerekētanga iti o ia rā ka taea te whakarereke nui i tō mārire me tō mana motuhake.

Mō te uaua o ngā uaua me te spasticity, ko ngā whakakori ngawari ka tino awhina. Ka taea hoki e ngā kaukau mahana, i ngā papa whakamahana te tuku whakaora, i te karo i te makariri nui e taea ai te kino ake te uaua. Ko te nekehanga ngawari, ia rā, e aukati ana i ngā uaua kia kaua e tino pakari.

Ko ngā whakarerekētanga haumaru kāinga e tino nui haere ana i te wa e haere tonu ana te āhuatanga:

• Whakauruhia ngā ringa i roto i ngā korowhiti me ngā ruma kaukau
• Tangohia ngā tūponotanga tū, pēnei i ngā moenga ngākau
• Whakaritehia te mārama pai puta noa i tō kāinga
• Whakaarohia he pūnaha whakatūpato hauora
• Pupurihia ngā taonga e whakamahia pinepine ana i roto i te ringa

Ko te pupuri i te kai pai e tautoko ana i te hauora katoa me ngā taumata kaha. Ki te uaua te horomi, mahi tahi me te kaiwhakarite kai hei whakarereke i ngā āhua kai i te wa e whakarite ana i te kai pai. Noho pai te wai, engari korerohia ngā take horomi ki tō rōpū hauora.

Kaua e wareware ki tō oranga ngākau. Ko te hono atu ki ngā whānau me ngā hoa, te whai i ngā mahi whakangahau whakarite, me te whakaaro ki te tohutohu, ki ngā rōpū tautoko rānei ka taea te awhina i a koe ki te whakahaere i ngā wero o te noho tahi me te PLS.

Me pēhea te Whakarite mō tō Hui Taote?

Ko te whakarite mō ō hui taote ka taea te awhina i a koe ki te whakamahi pai i tō wā me te whakarite kia kaua e warewarehia ngā korero nui. Ko te whakarite pai ka arahina ki ngā kōrero hua ake mō tō tiaki.

I mua i tō hui, tuhia katoa ō tohutohu, tae atu ki te wā i tīmata ai rātou me te āhua o te huringa i te wa roa. Kia mōhio ki te mea e pai ake ana, e kino ake rānei, me te āhua o te pānga ki ō mahi o ia rā. Kia tino mōhio ki ngā huringa mahi, pēnei i te uaua ki te piki i ngā kaupae, i ngā huringa rānei i tō tuhituhi.

Kawe mai he rārangi katoa o ō rongoā, tae atu ki ngā rongoā-ā-kāinga me ngā taapiri. Whakaritea hoki he rārangi o ngā pātai e hiahia ana koe ki te ui:

• He aha ngā whakamātautau e hiahia ana ahau, ā, he aha ngā mea ka whakaatu mai?
• Kia tere te haere tonu o taku āhuatanga?
• He aha ngā maimoatanga kei te wātea mō ōku tohutohu?
• Nōhea ka whakaaro ahau ki ngā taputapu awhina?
• He whakamātautau hauora e hiahia ana ahau ki te mohio?
• He aha ngā tohu whakatūpato e hiahia ana kia karanga ahau ki a koe?

Whakaarohia te kawe mai i tētahi mema whānau, hoa rānei hei awhina i a koe ki te mahara ki ngā korero nui me te tuku i ngā tirohanga atu mō ō tohutohu. Ka kite pea rātou i ngā huringa kāore koe i kite.

Kaua e wareware ki te kawe mai i ō korero inihua me ētahi tuhinga tohutoro ki te kite i te tohunga. Ko te whai i ngā tuhinga katoa e hiahiatia ana e te whakarite i te haere pai o tō hui.

He aha te tango matua mō te Mate Pūtake o te taha o te taha?

Ko te mate pūtake o te taha o te taha tētahi āhuatanga onge engari ka taea te whakahaere e pā ana ki ō pūtau io o runga, e puta mai ana te uaua o ngā uaua me te ngoikore e tino hāere ana i te wa roa. Ahakoa kāore he rongoā kei te wātea i tēnei wā, he maha ngā maimoatanga whai hua ka taea te awhina i a koe ki te pupuri i te mahi me te kounga ora.

Ko te mea nui rawa atu kia mahara ko te PLS e pā ana ki te tangata katoa, ā, ko tōna haere tonu puhoi e tuku ana i te wa ki te whakarite me te whakatakoto mahere. Ko te mahi tata atu ki tētahi rōpū hauora e uru ana ki ngā neurologists, ngā kaiwhakakori, me ētahi atu tohunga e tuku ana i te tupono pai rawa atu ki te whakahaere i ngā tohutohu tika.

Ko te whakatau wawe me te maimoatanga proactive ka taea te whakarereke nui i tō wheako me te PLS. Kaua e whakaroa ki te rapu awhina mō ngā tohutohu hou, ā, kia mahara ko te pupuri i tō hauora katoa me te hono atu ki ētahi atu he mea nui puta noa i tō haerenga me tenei āhuatanga.

Ka haere tonu te rangahau ki te PLS, e tuku ana i te tumanako mō ngā maimoatanga pai ake i te heke mai. I tenei wā, aro ki te mea ka taea e koe te whakahaere: te noho mahi tinana, te pupuri i te kai pai, me te hanga i tētahi whatunga tautoko kaha hei awhina i a koe ki te whakahaere i ngā wero kei mua.

Ngā Pātai Nui e ui ana mō te Mate Pūtake o te taha o te taha

He rite te mate pūtake o te taha o te taha ki te ALS?

Kāo, ko te mate pūtake o te taha o te taha me te ALS he āhuatanga rerekē, ahakoa he mate pūtau io rāua. Ko te PLS anake te pānga ki ngā pūtau io o runga i roto i tō roro me tō tuaiwi, i te wa e pā ana te ALS ki ngā pūtau io o runga me ngā pūtau io iti. Ko te PLS hoki te tino hāere puhoi i te ALS, ā, he pai ake te tirohanga roa. Ko ētahi taote e whakaaro ana ko te PLS tētahi momo ALS, engari he mea nui te wehewehenga mō te mārama ki tō whakatau me ō whiringa maimoatanga.

Kia pehea te roa ka taea e te tangata te ora me te mate pūtake o te taha o te taha?

Ko te nuinga o ngā tangata he PLS he oranga roa noa, tata noa rānei, inā te nuinga i te whakataurite ki ētahi atu mate pūtau io. Ko te āhuatanga e tino hāere ana i ngā tau maha, ā, ahakoa ka taea te pānga nui ki te kounga ora, kāore i te tino mate kino. Heoi, ko ngā hua i ngā wāhanga matatau, pēnei i ngā uaua horomi nui, ka taea te whakatūpono i ngā tūponotanga e hiahia ana ki te whakahaere atawhai me tō rōpū hauora.

Ka mutu ahau i roto i te wīra me te PLS?

Kāore te katoa he PLS e hiahia ana ki te wīra, ā, he rerekē te raupapa i waenga i ngā tangata. Ko ētahi tangata e pupuri ana i te kaha hikoi mō ngā tau maha me ngā taputapu awhina pēnei i ngā tokotoko, i ngā kaikōrero rānei. Ka taea e ētahi atu te whai hua i ngā wīra mō ngā tawhiti roa i te wa e haere tonu ana i ngā tawhiti poto i te kāinga. Ko te haere tonu puhoi o te PLS e tuku ana i te wa ki te whakarite haere ki ngā huringa nekehanga me te tirotiro i ngā whiringa awhina rerekē.

Ka taea te awhina i ngā tohutohu o te mate pūtake o te taha o te taha?

Ae, ko te whakakori tika ka tino awhina mō ngā tangata he PLS. Ko te ngawari ngawari e awhina ana i te pupuri i te ngawari me te whakaiti i te uaua, i te wa e taea ai e ngā whakakori whakapakari mō ngā uaua kāore i pāngia te utu mō te ngoikore. Ko ngā whakakori wai te nuinga o te wā he tino awhina, na te mea ko te kaupapa e whakaiti ana i te ahotea ki ngā hononga i te wa e tuku ana i te nekehanga. Mahi tonu me te kaiwhakakori tinana hei whakawhanake i te kaupapa whakakori haumaru e whakaritea ana ki ō hiahia me ō kaha motuhake.

He maimoatanga hou kei te rangahautia mō te PLS?

Ko te rangahau ki ngā maimoatanga PLS kei te haere tonu, ahakoa he puhoi te haere i te whakataurite ki ngā āhuatanga tino noa na tōna onge. Ko te rangahau o nāianei e āta whakaaro nui ana ki te mārama ki ngā tikanga mate, te whakawhanake i ngā maimoatanga tohutohu pai ake, me te tirotiro i ngā rongoā neuroprotective pea. Ko ētahi whakamātautau hauora mō ngā maimoatanga ALS ka uru pea ki ngā turoro PLS. Ui atu ki tō neurologist mō ngā wā rangahau o nāianei me te mea pea koe e tika ana mō ētahi whakamātautau hauora.