Kua pā mai te ahua ngoikore o ō waewae i a koe e piki ana i ngā arawhata, kua pōturi ō kupu i a koe e kōrero ana, kua taka whakarere rānei tetahi mea i tō ringa? Tērā pea he mea noa ēnei, engari ki te mau tonu ēnei tohu, he mea pai kia āwangawanga koe. Nā te mea he tohu tōmua pea ēnei o tētahi mate e kiia nei ko te Mate Pūnaha Motuka (MND) . Nō reira, me kōrero tātou mō tēnei i tēnei rā.
He aha te mate neurone motuka (MND)?
He whakarāpopototanga noa iho, ko te mate io o ngā pūtau nekeneke (MND) he rōpū mate e pā ana ki tō tātou pūnaha io. Ka mate haere ā tātou io nekeneke . Tērā pea kei te whakaaro koe he aha ēnei io nekeneke. Koinei ngā pūtau io e whakahaere ana i ō tātou uaua. He mea nui ēnei io nekeneke mō ā tātou mahi katoa, mai i te manawa, te kōrero, te horomi, me te hikoi.
Whakaarohia, mai i tō tātou roro (e kiia nei e tātou ko ngā io roro o runga ) ka tae mai ngā karere ki tō tātou taurakira. Mai i reira, ka haere aua karere mā roto i ngā io roro o raro ki ngā uaua o tō tātou tinana. Ko ēnei io roro o runga te mea e kī ana ki ngā io roro o raro, "Āe, nekehia tēnei uaua pēnei."
Nā, he aha te mea ka tupu ina kore e taea e ēnei io nekeneke o raro te tuku karere ki ngā uaua? Ka tīmata te ngoikore haere o ngā uaua, ka mimiti haere (te ngoikore o te uaua) . Waihoki, ina kore e taea e ngā io nekeneke o runga te tuku tohu ki ngā io nekeneke o raro, ka pakari ngā uaua, ka nui rawa te tauhohenga ( te hyperreflexia ). Nā tēnei ka uaua ai tā tātou mahi i ngā nekehanga tūao, ā, ka tino puhoi te puta. I roto i te wā, ka ngaro pea te kaha ki te hikoi me te whakahaere i ētahi atu nekehanga.
Ko te mea nui, kāore anō kia kitea he rongoā mō te mate iorine nekeneke i tēnei wā. He mate haere tonu ēnei, ā, ka kino haere i te roanga o te wā. Heoi anō, kei reira ngā maimoatanga hei āwhina i te whakaiti i te pānga o te mate.
He aha ngā momo MND kei reira?
Ka whakarōpūhia e ngā tākuta te MND i runga i te pānga ki ngā io nekeneke o runga, ki ngā io nekeneke o raro, ki ngā mea e rua rānei. He maha ngā momo matua o te MND:
Te mate urutā taha amyotrophic (ALS)
Koinei te momo MND tino noa. Ka karangatia hoki e ētahi ko te mate a Lou Gehrig . Ka pāngia ngā io nekeneke o runga me o raro e te ALS. Ka taea e tēnei te tere o te ngaronga o te mana whakahaere uaua, ā, ka mutu ka pāngia e te pararutiki . He maha ngā tākuta e whakamahi ana i ngā kupu ALS me te mate io nekeneke hei whakawhitiwhiti.
`Pararutiki bulbar ahu whakamua (PBP)`
Koinei te mea e whakaeke mai ana ki a tātou.Ko ngā io nekeneke o raro e hono ana ki te take roro (rohe bulbar). Ko tō tātou take roro te kaiwhakahaere i ngā uaua e hiahiatia ana mō ngā mea pēnei i te kōrero, te ngaungau, me te horomi. Ko tētahi atu ingoa mō te PBP ko te "progressive bulbar atrophy".
'Te mate kiriuhi taha tuatahi (PLS)'
Ka pāngia ngā io nekeneke o runga anake e tēnei mate. I te nuinga o te wā, ka pāngia ngā waewae e tēnei mate tuatahi. Kātahi ka pā ki ngā ringa, ngā ringaringa, me te tinana. Hei whakamutunga, ka pā ki ngā uaua e whakamahia ana mō te kōrero, te horomi, me te ngaungau kai.
`Te ngoikore haere o te uaua (PMA)`
Ka pāngia anake ngā io nekeneke o raro. He nui ake te kitea o tēnei mate i roto i ngā tāne, ā, ka whanake i te wā taitamariki ake i ētahi atu mate pāwera o te pakeke. Ko ngā tohu tuatahi ko te ngoikore o ngā ringa, kātahi ka horapa ki te tinana o raro. Ka pā anō hoki ki te tinana me te manawa.
Te ngoikore o te uaua o te tuaiwi (SMA)
He mate tuku iho tēnei e pā ana ki ngā io nekeneke o raro. E kiia ana hoki ko tētahi o ngā tino take ira o te mate o ngā pēpi . Ko ngā whakarerekētanga ira i roto i te ira `SMN1` ka hua ake te ngaronga o te pūmua `SMN` . Ka whakangaro haere tēnei i ngā io nekeneke o raro, ka ngoikore te uaua, ā, ka mate.
Te mate a Kennedy
He hononga tēnei ki tētahi ira kei runga i te ira X i roto i ngā tāne. Nā ngā whakarerekētanga ira i roto i te ira kaiwhakawhiwhi androgen i puta ai. I roto i te wā, ka puta te ngoikore i roto i ngā ringa me ngā waewae, ka tīmata i ngā wāhi o te hope, o te pakihiwi rānei. Tērā pea ka puta te mamae me te ngoikore o ngā ringa me ngā waewae.
Te mate muri-polio (PPS)
Ka pā tēnei ki te hunga kua ora mai i te mate polio. Ka pā pea ki te hunga e whā tekau tau te pakeke i muri i tō rātou mate tuatahi. Ka taea e te mate polio te whakararu nui i ngā io nekeneke. Ko ngā tohu o te PPS ko te ngoikore o te uaua me ngā hononga, te ngenge, te mamae e piki haere ana i te wā, te wiri me te ngenge o te uaua, me te kore e taea te aro atu ki te makariri.
He aha ngā tohu o te MND?
Kāore ngā tohu o te MND e puta ohorere mai, engari ka āta haere. I ngā wāhanga tōmua, kāore pea i te tino kitea.
Ngā tohu tōmua
- Te uaua ki te piki arawhata, te tūtuki pinepine rānei nā te ngoikore o ngā waewae, o ngā pona rānei.
- Te kōrero pōturi (dysarthria) .
- Te uaua ki te horomi i te kai .
- Te ngoikore o te pupuri i tētahi mea e puritia ana e koe. Hei tauira, he uaua pea ki te pātene i tētahi hāte, ki te whakatuwhera i tētahi pounamu, ki te taka tonu rānei ngā mea kei roto i tō ringa ki te papa.
- Te wiri me te māuiui o ngā uaua.
- Te ngaronga o te taumaha nā te kikokore o ngā ringa me ngā waewae.
- Kāore e taea te mutu te kata, te tangi rānei i ngā wā kāore i te tika (te pānga pseudobulbar) . He rite tēnei ki te kata ina pouri koe, ki te pouri rānei ina harikoa koe.
Ētahi atu tohu
Haunga ēnei tohu tuatahi, ka puta pea ētahi atu tohu:
- Te uaua ki te manawa (te kore e taea te manawa) .
- Te uaua ki te manawa i a koe e takoto ana i te moenga.
- Ngā mate urutā pinepine o te uma .
- Ngā mate moe (te moe pōrearea) .
- Ngā ngoikoretanga o te aro me te mahara .
- Pōhēhētanga .
- Te mamae o te upoko i te ata .
- Te ngenge .
He aha ngā take o te MND?
E ai ki tā tātou i kōrero ai i mua, ko te MND ka puta mai i ngā raruraru o ō tātou neuron motuka. Ka mutu haere te mahi tika a ēnei pūtau i roto i te wā. Heoi, kāore anō kia tino mōhiotia e ngā kairangahau he aha i puta ai tēnei .
He taonga tuku iho te MND
He tuku iho ētahi o ngā mate MND, arā, ka tukuna iho i roto i ngā mema o te whānau mā roto i ngā ira. I ēnei wā, ka puta te mate i te huringa o tētahi ira kotahi. Ka taea te tuku iho i ēnei i roto i ētahi huarahi matua:
- ``Autosomal dominant``: I tēnei āhuatanga, ahakoa ka riro mai i a koe tētahi tārua o te ira kua whakarerekētia mai i tētahi o ngā mātua kua pāngia, kei te tūpono tonu te whakawhanake i te mate.
- ``Autosomal recessive``: I tēnei āhuatanga, kia pāngia ai koe e te mate, me whiwhi koe i ngā tārua e rua o te ira kua whakarerekētia mai i ngā mātua e rua.
- 'Te tukunga iho e hono ana ki te X': I roto i tēnei, ka mau te whaea i tēnei ira i runga i te ira-X, ā, ka tukuna te mate ki āna tamariki tāne.
Ētahi atu take
Ka taea te whakaputa i ngā mate MND ehara i te tuku iho e ngā momo āhuatanga maha. Kei roto i ēnei ko ngā huaketo, ngā paitini, ngā ira, me ngā āhuatanga taiao .
Ko wai kei te nui ake te mōrearea ki te whakawhanake i te MND?
Ko te MND te mea tino pāngia e te hunga i waenga i te 60 me te 70 tau te pakeke. Heoi, ka pāngia pea ngā tamariki me ngā pakeke o ngā tau katoa. Mena he MND tō tētahi o ō whanaunga tata, he mate rite rānei e kiia nei ko te mate wareware frontotemporal , ka nui ake tō tūponotanga ki te pāngia e te MND.
Me pēhea te tautuhi a ngā tākuta i te MND?
He uaua te tautuhi wawe i te MND, nā te mea kāore he whakamātautau motuhake mōna. Mena ka ngoikore haere ō uaua, kāore he mamae, he ngaro rānei te rongo, ka whakapae pea tō tākuta kei a koe te MND.
Ngā pātai i pātaihia e te tākuta
Ka taea e koe te pātai ki a koe anō i ngā pātai pēnei:
- He aha ngā wāhanga o te tinana e pāngia ana ?
- Nōnahea i tīmata ai ngā tohu?
- Ngā tohu tuatahiHe aha?
- Kua rerekē ngā tohu i roto i te wā?
Ngā whakamātautau i mahia
He maha ngā whakamātautau ka taea te mahi hei āwhina i te tautuhi i te mate:
- Te Electromyography (EMG): Mā tēnei ka tuhia ngā mahi hiko o ō uaua. Ka āwhina tēnei ki te whakatau mēnā kei roto i ngā uaua, i ngā io, i te hononga io-uaua rānei te raruraru.
- Ngā rangahau kawe io: Ka ine tēnei i te tere o te tuku a ngā io i ngā kare ā-roto.
- Matawai whakaahua aukume (MRI): Ka mahia he MRI o te roro, me ētahi atu MRI o te taurakira, hei rapu i ētahi atu āhuatanga rerekē e puta ai ngā tohu ōrite.
Hei whakakore i ētahi atu mate hauora, ka tono pea te tākuta i ētahi atu whakamātautau:
- Ngā whakamātautau toto
- Ngā whakamātautau mimi
- Te pokanga tuaiwi (te weronga o te hope)
- Ngā whakamātautau ira
Ka haere te wā, ka tino kitea ngā tohu o te MND, ā, i ētahi wā ka taea te tautuhi i te mate me te kore he whakamātautau.
He aha ngā maimoatanga mō te MND?
Kāore he rongoā motuhake, he rongoā rānei mō te mate neurone nekeneke. Heoi anō, kei te rangahau tonu ngā kairangahau i ngā huarahi haumaru, whai hua hoki hei rongoā i te mate.
Me mahi tahi koe me tētahi tīma tākuta hei āwhina i a koe ki te whakahaere i ō tohumate. Ko ngā maimoatanga MND pea ko:
- Whakaora tinana: Ka āwhina tēnei ki te pupuri i te kaha o ō uaua me te pupuri i te ngāwari o ō hononga.
- Mena he uaua ki a koe te horomi , ka hoatu pea he kai māu mā te ngongo (ngoi gastrostomy) ka whakaurua mā te pakitara o te puku ki roto i te puku.
Ngā rongoā
Ka āwhina ētahi rongoā i te tini o te hunga whai MND ki te whakaora i ō rātou tohumate:
- Baclofen: Whakaiti i te pakari o te uaua me te whakaiti i te mamae o te uaua.
- Phenytoin, quinine rānei: Whakaiti i te mamae o te uaua.
- Glycopyrrolate: Whakaiti i te huware.
- Ngā rongoā ārai pouri: He āwhina ki te pouri.
- Benzodiazepines: Mō te mamae e puta ana i te haere whakamua o te mate.
Mō te hunga whai ALS, e rua ngā rongoā ka taea te whakaroa i te oranga me te whakahaere i te hekenga mahi: riluzole me te edaravone .
He tokomaha hoki ngā tāngata e whai wāhi ana ki ngā whakamātautau haumanu .
Āhea ahau me toro atu ki te tākuta?
Mena kei a koe tētahi āhuatanga pēnei i te ngoikore o te uaua, he tohu tōmua pea tēnei o te MND, me toro atu koe ki te tākuta. Kāore pea koe i te MND, engari he mea nui te kimi i te tātaritanga tika i te wā e taea ai kia whiwhi ai koe i te tiaki me te tautoko e hiahiatia ana e koe.
Waihoki, ki te mea he whanaunga tata tōu e pāngia ana e te MND, e te mate wareware frontotemporal rānei, ā, kei te āwangawanga koe kei pāngia koe e te mate, he mea pai kia kite i te tākuta. Tērā pea ka tukuna koe e tō tākuta ki tētahi kaitohutohu ira hei matapaki i tō mōrearea.
He aha tāu e tumanako ai ina noho tahi koe me tēnei mate?
He mate haere tonu te mate neurone motuka, nō reira he mea nui kia kimihia he tākuta e mārama ana ki tō āhua, ā, ka taea e ia te āwhina i a koe ki te kimi i te maimoatanga tika hei whakahaere i tō āhua.
He mea nui anō hoki kia whai pūnaha tautoko . I a koe e haere tonu ana te mate, me nui ake pea te āwhina a ētahi atu ki te mahi i ngā mea uaua ki a koe. Kōrero ki ō hoa me tō whānau, pātai atu rānei ki tō tākuta mō ngā huarahi hei tiki tautoko mai i tō hapori. Kia maumahara, kāore koe i te mokemoke.
He aha te roanga o te oranga o te tangata whai MND?
Engari, ka taea e te mate neurone nekeneke te whakapoto i tō roanga oranga . He mate ēnei ka whanake haere i roto i te wā, ā, ka mutu, ka mate. Heoi, he rerekē te roa o te wā e hiahiatia ana kia tae atu ki taua taumata i ia tangata, i ia tangata. Ka ora ētahi tāngata mō ngā tau, i ētahi wā tae noa ki ngā tekau tau, i mua i te matenga i ngā pānga o ēnei mate. Ka taea e tō tākuta te whakamārama ake i te matapae/tirohanga o tō mate.
Ko te mea tino nui - ko tāu e kī ai
He wheako whakamataku, he wheako taumaha hoki te kitenga kei a koe te mate neurone motuka (MND). Kia maumahara, ehara i te mea nāu te he . Kāore koe i mahi i tetahi mea hē. Ā, kāore e whakarerekē i a koe – engari ka taea e ia te whakarerekē i te ao. Ahakoa ka pāngia koe e ngā wero i te whanaketanga o te mate, kei reira ngā maimoatanga hei āwhina i a koe ki te whakahaere i ngā pānga. Whakawhirinaki ki ō hoa me tō whānau mō te tautoko. Mena kei te raru koe ki te aro atu ki tēnei mate, ki te hiahia rānei koe ki ētahi atu tautoko, kōrero ki tō tākuta. Ka taea e rātou te āwhina i a koe ki te kimi i ngā rauemi e hiahiatia ana e koe, ā, kia whakarite kia whiwhi koe i te āwhina e hiahiatia ana e koe i roto i te wā.
` Mate neurone motuka, MND, mate pūnaha io, ngoikore uaua, ALS, pūtau io, ngoikore uaua
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