Kei te pāngia koe e ngā kare ā-tinana rerekē? He mea nui pea kia mōhio koe ki te Multiple System Atrophy (MSA)!

Kua rongo koe i tētahi wā kei te huri haere ngā mea o tō tinana i ngā huarahi kāore e taea e koe te whakahaere? I ētahi wā ka rite ki te ngaro o tō taurite ina hikoi koe, ka pōuri rānei koe ina tū ohorere koe. He mea ēnei kāore tātou e aro nui ana ki ētahi wā, engari he tohu anō hoki ēnei o ētahi mate io onge. I tēnei rā ka kōrero tātou mō tētahi āhuatanga pēnei he uaua, engari he mea tino nui kia mōhio koe. Koia te Multiple System Atrophy (MSA) .

He aha rawa te Atrophy Pūnaha Maha (MSA)?

Ki te kī ngāwari, ko te Multiple System Atrophy (MSA) he mate pūnaha io onge e ngoikore haere ana ētahi wāhanga o tō tātou roro, arā, ka heke te kounga. I roto i te wā, ka tīmata te heke o ngā mahi me ngā āheinga o tō tātou tinana e whakahaerehia ana e ēnei wāhanga o te roro. He mate kino rawa tēnei, nā te mea he uaua ki te ora katoa mai i tēnei mate.

I ngā wā o mua, he maha ngā ingoa i huaina ai te MSA. Tērā pea kua rongo koe i ngā ingoa pēnei i te `Shy-Drager syndrome`, `Sporadic olivopontocerebellar atrophy`, `Striatonigral degeneration`. Nō muri mai ka mōhio ngā tākuta he āhuatanga noa iho ēnei āhuatanga katoa. Nā reira i whakakotahihia ai rātou katoa, ā, i tapaina he ingoa hou, `Multiple System Atrophy` (MSA). He rerekē ngā tohu i runga i te wāhanga o te roro kua pakaru. Nā reira he rerekē te huinga o ngā tohu ka pā ki ia tangata.

E rua ngā momo MSA, tika? He aha ēnei?

Āe, kia mārama ake ai te tautuhi i te āhua o te MSA, kua wehea e ngā tākuta kia rua ngā momo matua, i runga i ngā tohu e puta mai ana:

1. MSA-C : Ko te 'C' i konei e tohu ana i te 'cerebellar'. Ko tēnei momo ka pā ki tō kaha ki te whakarite i ō nekehanga. Arā, ka ngaro tō taurite , e kiia ana e ngā tākuta ko te 'ataxia'. Koinei te tohu matua o tēnei momo. I taua wā anō, ka kite pea koe i ngā raruraru ki ngā pūnaha whakahaere aunoa o te tinana ('autonomic dysfunction') me ngā hinganga maha.

2. MSA-P : Ko te 'P' i konei e tohu ana i te 'parkinsonism'. I roto i tēnei momo, ka kitea ngā tohu e rite ana ki te mate a Parkinson. Ahakoa he nui ake te kitea o ēnei tohu a Parkinson i ngā wāhanga tōmua, i roto i te wā, ka puta pea ngā raruraru ki te pūnaha io motuhake me ngā tohu o te 'ataxia'.

Ko wai te hunga e tino pāngia ana e tēnei mate MSA? He pēhea te noa o tōna pānga?

Ko te MSA te tikanga ka pā ki ngā pakeke neke atu i te 30 tau te pakeke. Ko te nuinga o ngā tohumate ka puta i waenga i te 50 me te 59 tau te pakeke. Ka pā ki te tangata katoa, ahakoa te ira tangata.

Engari he tino onge te MSA. E ai ki ngā tohunga, he 0.6, he 0.7 rānei ngā kēhi hou mō ia 100,000 tāngata ia tau. Ko te tapeke o ngā kēhi e kiia ana kei waenga i te 3.4 me te 4.9 mō ia 100,000. Nō reira, ka kite koe i te onge o tēnei.

He aha ngā mea ka pā ki te tinana me te MSA? Ko ēhea ngā wāhanga o te roro ka pāngia?

He mate ahu whakamua te MSA e pā ana ki ngā wāhanga rerekē o te roro. Ka whakawhirinaki ngā tohu ki te wāhanga o te roro e pāngia ana. Ko ngā wāhanga matua o te roro e pāngia ana e te MSA ko:

• Ngā ganglia turanga : Kei waenganui tonu o te roro ēnei. Ka hono i ngā wāhanga rerekē o te roro, ā, ka āwhina i a rātou ki te mahi tahi. He rite ki te rūma whakahaere matua o te roro .
• Roro : Koinei te mea e whakahaere ana i ngā tukanga aunoa maha i roto i tō tātou tinana. Arā, ko ngā mea ka puta aunoa me te kore e whakaarohia e tātou, hei tauira, te manawa, te tere o te ngakau, me te toto toto. He mea nui ēnei mō te oranga.
• Te Roro o te Iwi : Kei muri o te upoko tēnei, kei te pūtake. Ko te kawenga matua ko te whakahaere i te nekehanga me te pupuri i te taurite. Ka mahi tahi hoki me ētahi atu wāhanga o te roro. Kei te ako tonu ngā kairangahau mō tana mahi katoa, engari e kī ana ētahi taunakitanga kei roto hoki i ō tātou kare ā-roto me te whakatau kaupapa.

Nō reira, ina pakaru ēnei wāhanga o te roro, kāore e taea te mahi tika i ngā mahi e whakahaerehia ana e aua wāhanga. Hei tauira, ki te pakaru te 'Roro', ka puta pea ngā raruraru ki ngā mea aunoa pēnei i te toto toto tiketike.

He aha ngā tohu o te MSA? Me pēhea tātou e mōhio ai ki a rātou?

He rite tonu ētahi tohu o te MSA ki ngā momo e rua, ā, he motuhake ētahi ki ia momo. Engari kotahi te mea e rite ana ki ngā momo e rua ko te ngoikore o te pūnaha autonomic. Ki te kī ngāwari, ka pōrearea ngā pūnaha whakahaere aunoa o tō tinana .

Ngā tohu e pā ana ki ngā raruraru o te pūnaha io autonomic:

• Te ngoikore o te toto : Koinei te wā ka heke ohorere tō toto, ka pōuri ai , ina huri tō tūnga, hei tauira, ina tū ohorere koe i te noho.
• Te kore e taea te whakahaere i te mimi (‘urinary incontinence`) me te kore e taea te whakahaere i te paru (‘fecal incontinence`).
• Ko te ngoikore o te moepuku, inā koa i roto i ngā tāne, he uaua ki te whakatū i te ure (he ngoikore o te ure).
• Te mate moe tere kanohi (REM) : He rite ki te mate a Parkinson, ina moemoeā koe, ka mahi koe i ngā mea i mahia e koe i roto i ō moemoeā. Tērā pea ka hamama koe, ka rūrū rānei i ō ringa.
• Te heke o te werawera (anhidrosis).
• Ngā raruraru tirohanga.
• Waha maroke.
• Te mate moe.
• Te puhoi o te nakunaku me te mate kōroke.

Whakaarohia he maha o ēnei tohumate ā-tinana ka puta i roto i ngā marama, tae atu ki ngā tau, i mua i te putanga mai o ngā tohumate nekehanga. Ka puta tēnei i waenga i te 20% me te 75% o ngā tūroro MSA.

Ngā āhuatanga hinengaro me ngā āhuatanga kare ā-roto

Tata ki te hautoru o te hunga whai MSA ka pāngia e ngā raruraru ki tō rātou kaha ki te whakaaro me te arotahi. He uaua hoki ki a rātou te whakahaere i ō rātou kare ā-roto. Ka arahi pea tēnei ki ngā raruraru hauora hinengaro pēnei i:

• Te manukanuka.
• Te pouri.
• Te kore pumau o ngā kare ā-roto: Arā, te tangi me te kata kāore i te tika.
• Ngā whakaekenga mataku.
• Ngā whakaaro ki te whara i a koe anō, ki te whakamate rānei i a koe anō.

Ngā āhuatanga e pā ana ki te nekehanga

Ngā āhuatanga o te MSA-C (momo roro iti):

Ko te nuinga o tēnei momo ko te 'ataxia' (te ngaronga o te taurite). Ko te 'cerebellum' he wāhanga o te roro e whai wāhi nui ana ki te whakahaere i ngā nekehanga uaua. Nō reira, ina ngaro taua mahi tahi, ka puta pea ēnei āhuatanga:

• Ngā nekehanga pōrearea, kore whakahaere o ngā peka.
• Te wiri o ngā mahi : Ko te tikanga tēnei, ina ngana koe ki te mahi i tētahi mea, ka piki ake te wiri o ō waewae me ō waewae.
• Te hikoi me ngā waewae whānui rawa atu .
• Te kimokimo o ngā kanohi kāore e taea te whakahaere (nystagmus).

Ngā āhuatanga o te MSA-P (momo Parkinsonism):

Ka tīmata tēnei momo tohu i te taha kotahi o te tinana, kātahi ka horapa ki ngā taha e rua. Ko te āhua o ēnei tohu he penei:

• Ngā nekehanga puhoi (bradykinesia), te āhua me te mea kua mate te tinana .
• Te ahua o te pakari me te mārō o te tinana, ka hua ake he tū e ahua piko whakamua ana.
• Te tūtuki pinepine i te wā e hikoi ana.
• Te kīkī i te wā e kōrero ana, te kōrero kāore i te mārama .

He aha i puta ai tēnei MSA? He aha te take?

Kāore anō kia mōhiotia te tino pūtake o te MSA , engari e whakapae ana ngā tohunga he hononga ki tētahi pūmua e kiia nei ko te 'alpha-synuclein', ka taea te kohikohi i roto i ngā wāhanga rerekē o tō tātou roro. E whakapaetia ana hoki ko tēnei pūmua anō tētahi o ngā tino pūtake o te mate a Parkinson.

He matū nui ngā pūmua hei mahi mā ō tātou tinana. He maha ngā mea e āwhina ana i a rātou, pērā i te whakawhitiwhiti kōrero i waenga i ngā pūnaha rerekē o te tinana me te kawe i ngā matū huri noa. Heoi, ki te kohikohi ēnei pūmua ki ngā wāhi hē, ka taea e rātou te whakararu. E whakapono ana ngā tohunga ko tēnei kino te take e mate haere ai te kiko o te roro i roto i te MSA.

Kei te rangahau tonu ngā kaipūtaiao he aha i kohia ai tēnei pūmua 'alpha-synuclein' ki ētahi wāhanga o te roro. E whakapae ana hoki rātou ka rerekē pea ētahi whakarerekētanga ira i te whakamahinga a ētahi pūtau i tēnei 'alpha-synuclein'. He taunakitanga anō hoki kei roto i ngā whānau te momo MSA-C. Heoi, kāore anō kia kitea he hononga ira pēnei mō te momo MSA-P.

Ko te mea nui , ehara te MSA i te mate hopuhopu . Kāore e taea te hopu mai i tētahi atu, kāore hoki e taea te hora atu ki tētahi atu.

Me pēhea koe e tino mōhio ai mēnā kei a koe te MSA? He aha ngā whakamātautau e mahia ana?

Kei reira te MSAKo te huarahi anake kia tino mōhio ai ko te tirotiro i te kiko o te roro i muri i te matenga o te tangata, nā te mea kāore he huarahi hei kite tika mēnā kua kohia te 'alpha-synuclein' ki ngā wāhi o te roro i te wā e ora ana te tangata.

I a te tangata e ora ana, ka whakapae ngā tākuta kei te pāngia ia e te MSA i runga i ngā tohu, te hītori hauora, te hītori whānau, me te aro rānei ki ētahi maimoatanga. He maha ngā wā, ko te mate a Parkinson te mate tuatahi, ko tētahi atu mate nekehanga rite rānei, ā, ka hurihia te mate ki te MSA i muri mai ina puta mai ngā tohu hou, ina mutu rānei te mahi a ētahi rongoā.

He maha ngā āhuatanga matua hei wehewehe i te MSA mai i te mate a Parkinson:

• Ka tere te whanake o te MSA : Ka roa te wā ka pāngia te tangata e te mate a Parkinson e ngā raruraru ki te pūnaha io ā-motuhake. Engari i roto i te MSA, ka tīmata pea ēnei raruraru i roto i te tau kotahi.
• He rerekē te puta o ētahi tohu : He kaha ake ngā tohu o te pūnaha io ā-roto i roto i te MSA. Heoi, ko ngā mea pēnei i te wiriwiri, he iti ake te kaha, kāore rānei i te tino kaha. Tērā pea ka rerekē te horapa o ngā tohu puta noa i te tinana.
• Kāore e whai hua ngā maimoatanga : Ko te Levodopa te rongoā matua mō te mate a Parkinson. Heoi, kāore i te tino whai hua te levodopa mō te MSA. Koinei te take matua e whakaaro ai ngā tākuta he MSA pea, ehara i te mate a Parkinson.

He aha ngā whakamātautau e mahia ana mō tēnei?

He iti noa ngā whakamātautau e āwhina tika ana ki te tautuhi i te MSA. Ko te nuinga o ngā whakamātautau ka mahia hei whakakore i ētahi atu mate, hei kohikohi hoki i ētahi atu taunakitanga hei tautoko i te whakapae he MSA pea. Ko ētahi o ēnei ko:

• Matawai Whakaahua Aukume (MRI) : Ka taea e tēnei te whakaatu i ētahi wāhi o te roro kua pakaru. Ka āwhina tēnei ki te whakatau tika ake i te mate. He mea whai hua anō hoki mō te tautuhi i te MSA-C, nā te mea ka taea e ia te whakaatu i tētahi tauira whiti-whiri i roto i tētahi wāhanga o te roro (te tohu "hot cross bun"). Heoi, ka kitea anō hoki tēnei tohu i roto i ētahi atu mate, nō reira kāore e ranea te tautuhi i te MSA anake.
• Whakamātautau ira : Ka taea e tēnei te tirotiro mō tētahi whakarerekētanga ira e pā ana ki te tukanga a te tinana o te tangata i te alpha-synuclein. He nui ake te tūponotanga o ēnei whakamātautau ki te tautuhi i ngā whakarerekētanga ira e pā ana ki te MSA-C i waenga i te iwi Hapanihi.
• Kohikohi kiri : Ka taea e ētahi momo kohikohi kiri te kite i ngā tohu o te kohikohinga alpha-synuclein i roto i te kiko io. Heoi, me nui ake ngā rangahau hei whakatau mena he whai hua tēnei hei wāhanga paerewa o te tukanga tātaritanga.

Mā tō tākuta koe e kōrero mō ētahi atu whakamātautau e tika ana, me pēhea hoki e taea ai e rātou te āwhina i a koe. Ka whakaarohia e rātou tō hītori hauora, tō hītori whānau, me ētahi atu āhuatanga hei whakatau i te whakatau pai mōu.

He rongoā kei te wātea mō te MSA? Ka taea te whakaora?

Kāore anō kia kitea he rongoā tuturu mō te MSA.Nō reira, ko te whāinga matua o te maimoatanga ko te whakahaere i ngā tohu mō te roa e taea ai. Ko te maimoatanga mō ngā tohu MSA e whakawhirinaki ana ki ngā āhuatanga maha, tae atu ki te kaha o ngā tohu o te tūroro.

He aha ngā rongoā, ngā maimoatanga rānei e whakamahia ana?

He maha ngā momo rongoā hei āwhina i te whakahaere i ngā tohu o te MSA. Ko te momo rongoā ka riro i a koe ka whakawhirinaki ki ō tohu me ētahi atu āhuatanga. Ko tō tākuta te tangata pai rawa atu hei taunaki i te rongoā pai rawa atu māu, nā te mea ko rātou te hunga tino mōhio ki tō āhua. Mā rātou anō hoki e whakamārama ki a koe ngā pānga taha pea o ngā maimoatanga.

He mea nui: He mate te MSA ka taea anake te tautuhi i te mate e te tākuta whakangungu, tohunga hoki. Nō reira, kaua e ngana ki te tautuhi, ki te rongoā rānei i ngā tohumate māu ake me te kore e kōrero ki te tākuta.

He ara anō hei ārai i te whanaketanga o te MSA?

Kāore anō kia mōhiotia e ngā tohunga he aha ngā take o te MSA, he aha rānei ngā āhuatanga e whai wāhi ana ki tēnei. Nō reira, kāore anō kia kitea he huarahi hei ārai, hei whakaiti rānei i te mōrearea i tēnei wā .

He aha te momo āmua ka taea e te tangata whai MSA te tumanako?

Ko te hunga whai MSA ka puta tuatahi ngā tohu e pā ana ki te nekehanga. Ka piki haere te kino o tēnei āhua i roto i te wā. Tata ki te haurua o ngā tūroro me āwhina ki te hikoi i tēnei wā. Ko te tikanga o tēnei ko te whakamahi i te tokotoko, i te taputapu hikoi rānei. Tata ki te rima tau i muri i te tīmatanga o te MSA, tata ki te 60% o ngā tūroro me whakamahi i te tūru wīra. I roto i ngā tau e ono ki te waru, ko te iti rawa o te haurua o ngā tūroro ka takoto ki te moenga.

I te whanaketanga haere o te mate, me whai atu pea ētahi atu tikanga, ētahi atu wawaotanga rānei hei pupuri i ngā mahi a te tinana, hei ārai hoki i ngā raruraru kino. Ko ētahi o ēnei ko:

• Tracheostomy hei pupuri i te manawa.
• Te whāngai mā roto i te ngongo ('Tube feeding' / `enteral nutrition`).
• Ngā katitere noho, te urostomy rānei mō te kore e taea te pupuri i te mimi.
• Colostomy mō ngā uauatanga o te nekenekehanga o te puku.

Kia pēhea te roa o te MSA?

He mate pumau, he mate mō te wā katoa te MSA. Ko te roanga o te oranga mō te mate nei he ono ki te tekau tau . I ngā wā kāore i te tino kino, ka roa pea ki te 15 tau. Heoi, i ngā wā tino kino, ka poto ake te roanga o te oranga. Ko ēnei wā tino kino ka uru atu ki ēnei tohu e whai ake nei:

• Ka kaha haere ngā tohu o te pūnaha io motuhake i mua i te tīmatanga o ngā tohu e pā ana ki te nekehanga.
• Te pakeketanga i te wā i kitea ai te mate.
• Te whai tohu nekehanga e hua ai te hinganga pinepine.

He aha te tirohanga mō tēnei āhuatanga?

Kāore i te tino pai te tirohanga mō te MSA. Ka piki haere te kino o ngā tohu o tēnei mate, ka whakararuraru i ngā mahi a te tinana, ā, ka arahi atu ki ngā raruraru whakamate. Ko ngā raruraru ka arahi atu ki te mate ko:

• Pūngāwerewere.
• Ka taea e ngā mate urutā mimi (UTI) te whakaputa i te sepsis (paitini toto).
• Te matenga ohorere (he maha ngā wā i te pō, nā te raruraru o te ara e whakahaere ai te roro i te manawa i te wā e moe ana).

Me pēhea taku tiaki i ahau anō/i taku e aroha nei? He aha ngā mea me āwangawanga ahau?

Ka pāngia te hunga whai MSA e ngā tohumate e ahu whakamua ana. Ko te tikanga, ina tae ngā tohumate ki tētahi taumata, kāore e taea e rātou te noho motuhake. Ka pāngia hoki tō kaha ki te whakaaro, ki te kōrero, me te whakatau i ngā whakatau māu ake anō hoki e tēnei mate. Nā ēnei āhuatanga katoa, he mea nui kia kōrero koe ki ō whanaunga mō ō hiahia mō te heke mai, me te whakarite hoki i tētahi mahere mō tō tiaki hauora mēnā kāore e taea e koe te whakatau .

Āhea koe me toro atu ki te tākuta?

He maha ngā tohu tōmua o te MSA he mea me kōrero koe ki te tākuta. Kei roto i ēnei ko:

• Te moepuku.
• Te hypotension orthostatic (te whanoke tonu, te hemo rānei, kāore he take e kitea ana).
• Ngā raruraru moe me te apnea moe (te whakamomori i te wā e moe ana).

Mena ka tāpaetia koe e te tākuta he mate nekehanga pēnei i te mate a Parkinson, he mea nui kia kōrero koe ki a rātou mō ngā huringa katoa o ō tohu. Ka whakaritea e tō tākuta he haerenga whai muri hei aroturuki i tō āhua me te whakarerekē i ō rongoā. Ka taea e koe te kōrero mō ngā huringa katoa ka kitea e koe i roto i ēnei haerenga. He mea noa mō te hunga kua tāpaetia he mate a Parkinson te whakarerekē i tā rātou tātaritanga i muri mai, ina puta mai he tohu hou, ina mutu rānei te mahi tika a te levodopa.

He maha ngā wā ka pāngia te hunga whai MSA e ētahi atu tohu, inā koa ngā raruraru hauora hinengaro. He mea nui kia rapu maimoatanga mō ngā raruraru hauora hinengaro e pā ana ki te MSA, tae atu ki ngā tohu tinana. Ka taea e tō tākuta te tūtohu maimoatanga, te tuku rānei i a koe ki tētahi tohunga hauora hinengaro.

Hei whakarāpopototanga (Karere hei tango ki te kāinga)

He mate kino te Multiple System Atrophy (MSA) , ā, ka mate pea. Engari, kāore anō kia kitea he rongoā tika, he rongoā rānei mō tēnei mate.

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Heoi, he maha ngā tohumate ka taea te rongoā , ā, he huarahi hei whakaiti i ngā pānga me ngā tohumate. Mā te rongoā, ka taea e te tini o te tangata te pupuri i te kounga o tō rātou oranga mō ngā tau, te noho tahi me te hunga e arohaina ana, me te whakamahi pai i tō rātou wā. Nō reira, he mea nui kia whakahaerea ngā tohumate me ngā tohutohu hauora tika, me te kore e whakapouri.

`Te Atrophy o te Pūnaha Maha, MSA, Mate Pūnaha Io, Mate Roro, Ngā Tohumate a Parkinson, Ngā Mate Nekehanga, Ngā Raru o te Pūnaha Io Aunoa