He uaua ki a koe te hikoi i ētahi wā, he ngoikore, he mākūkū rānei ō waewae, he ngenge tonu rānei? Kua kite koe i ēnei tohu e tīmata haere ana, ā, e kino haere ana i te roanga o te wā, kaua e puta ohorere mai? Mena koinā, he mea nui kia ako koe i a koe anō mō tētahi mate e kīia nei e mātou ko te PPMS . Ahakoa he kaupapa uaua tēnei, i Nirogi Lanka, e hiahia ana mātou ki te whakamārama i tēnei i roto i tētahi huarahi māmā, ngāwari hoki ki te mārama māu.
He aha tonu te PPMS?
Me tīmata tātou ki ngā kaupapa matua. Ko te PPMS he whakarāpopototanga mō te 'Primary Progressive Multiple Sclerosis '. He momo motuhake tēnei o te Multiple Sclerosis ( MS ).
Ki te whakarapopototanga, ka puta te Multiple Sclerosis (MS) ina whakaekea hētia e tō pūnaha ārai mate — arā, ko te tiaki i a koe mai i te mate — tō ake pūnaha io. Ka whakararuraru tēnei i te rere o te whakawhitiwhiti kōrero i waenga i tō roro, tō taurakira, me te toenga o tō tinana.
E rua ngā momo matua o te MS:
1. MS Whakahoki-Whakahoki (RRMS): I roto i tēnei momo, ka pāngia koe e te putanga ohorere o ngā tohu (e mōhiotia ana ko te 'whakahoki'), ā, muri iho ka pai ake ngā tohu, ka ngaro katoa rānei ('whakamārama'). Whakaarohia he rite ki te tupuhi; ka ua nui, kātahi ka mārama, ā, ka ua anō.
2. MS Whakamua Ake (PPMS): He rerekē te momo e kōrerohia ana e tātou i tēnei rā. Ki te PPMS, kāore ngā tohu e puta ake, kātahi ka ngaro. Engari, ka tīmata ō tohu i te tīmatanga, ā, ka piki haere, ka piki haere i te roanga o te wā. He rite tonu ki te ua tonu; he pumau, ā, i te roanga o te wā, ka kitea ake ngā pānga. Ahakoa i ētahi wā ka piki ake ngā tohu, he iti ake te kitea.
Tata ki te 10% o te hunga e noho tahi ana me te MS kei a rātou tēnei momo mate, e mōhiotia ana ko te PPMS.
He aha ngā tohu matua o te PPMS?
I te tīmatanga, he ngawari noa iho ngā tohu o te PPMS. Heoi, ka piki haere te kaha o te mate i te roanga o te wā. He rerekē ēnei tohu i ia tangata, i ia tangata. Me titiro tātou ki ngā tohu tino kitea pea e koe.
| Tohu | Whakamārama Māmā |
|---|---|
| Ngā Uauatanga Hīkoi | Koinei te tohu tino kitea o te PPMS. Mā te ngoikore o ngā waewae, te pakari, te ngaro rānei o te taurite ka uaua te hikoi. |
| Te ngenge mau tonu | He tino ngenge tonu, ahakoa i muri i te moe roa i te pō, i te iti rānei o te mahi tinana. He nui atu tēnei i te ngenge noa. |
| Te ngenge, te wiri rānei | Tērā pea ka rongo koe i ngā kare ā-roto pērā i te 'ngoikore me te māuiui', te ngoikore rānei, te ngaronga rānei o te kare ā-roto i ngā wāhanga rerekē o tō tinana, inā koa i ō ringaringa me ō waewae. |
| Ngā Huringa Tirohanga | Ko ētahi o ngā tohu ko te tirohanga pōuri, te tirohanga takirua, te mamae rānei o ngā kanohi. |
| Te Pakari o te Uaua, te Ngoikore rānei | Ka pakari ngā uaua (karekau he nekehanga), ka uaua ai te piko, te totoro rānei. Hei tāpiri, ka kite pea koe i te ngaronga o te kaha o ngā uaua. |
| Ngā raruraru o te pūkahukahu me te whēkau | Tērā pea ka pāngia koe e te hiahia ohorere ki te mimi, te ngaronga o te mana whakahaere i te pūkahukahu, te uaua rānei ki te whakawātea i te pūkahukahu. |
| Ngā Wero Hinengaro (Kohu Roro) | Ka uru atu pea tēnei ki te uaua ki te arotahi, ki te ngaro o te mahara, ki te uaua rānei ki te kimi i ngā kupu tika i te wā kōrero. |
Ko te mea nui, kaua e whakaaro kei a koe te PPMS nā te mea ka pāngia koe e tētahi, e rua rānei o ēnei tohu. He maha atu anō ngā āhuatanga hauora e rite ana ki ēnei tohu. Mō te tautuhi tika, me toro atu koe ki tētahi tohunga hauora.
He aha te take e puta ai te PPMS? He aha te take?
He pono, kāore anō kia mōhiotia te tino pūtake o te MS, te PPMS rānei. Heoi, e whakapono ana ngā kairangahau he maha ngā āhuatanga e puta mai ana i tēnei:
- Te āhua ira: Mena he mate MS tō tētahi o tō whānau, tera pea he nui ake tō tūponotanga, ahakoa he iti noa iho tēnei tūponotanga. Ehara i te mea ka tino heke iho ki a koe.
- Ngā āhuatanga taiao: E whakaponohia ana ko te pānga o ētahi huaketo, huakita rānei te mea pea ka whai wāhi ki te whanaketanga o te MS.
- Te ngoikore o te pūnaha ārai mate: E ai ki te kōrero, ka pakaru hē tō pūnaha ārai mate i te paparanga tiaki e karapoti ana i ō pūtau io (te 'pūkahu myelin'). Ka whakaroa, ka whakararu hoki tēnei kino i te tuku tohu io.
Me pēhea te tautuhi i te PPMS?
Kāore he whakamātautau kotahi hei whakaū i te PPMS. Mā te tohunga e whakatau te mate mā te arotake i ō tohu, tō hītori hauora, me ngā hua o ngā whakamātautau maha. He tukanga tātaritanga taipitopito, taahiraa i te taahiraa.
Anei ētahi o ngā whakamātautau matua ka taea te whakahaere:
| Whakamātautau | He aha tāna e rapu ana |
|---|---|
| Matawai MRI | Mā tēnei ka āwhina i te tautuhi i ngā pakaru o te io (ngā whara) i roto i tō roro me tō taurakira. He whakamātautau nui tēnei hei tātaritanga i te PPMS. |
| Werohanga o te Lumbar | Mā te whakamahi i tētahi ngira iti rawa, ka kohia e tō tākuta tētahi tauira o te wai cerebrospinal. Ka whakamātauhia tēnei e mātou mō ngā pūmua motuhake, e mōhiotia ana ko ngā 'oligoclonal bands', e kitea pinepine ana i roto i te MS. |
| Ngā Whakamātautau Toto | Ka āwhina ēnei ki te whakakore i ētahi atu āhuatanga—pērā i te korenga o ngā huaora, i ētahi atu mate pūnaha ārai mate rānei—ka rite pea ki ō tohumate. |
| Tomography Taurite Whatu (OCT) | He matawai kore mamae tēnei e whakamahia ana hei ine i te kino o te io whatu kei muri o tō kanohi, ka pāngia pea e te MS. |
Ahakoa e kitea ana te PPMS i waenga i te 40 me te 50 tau te pakeke, ka taea te puta i ngā tau katoa.
He aha ngā maimoatanga mō te PPMS?
I tēnei wā, kāore he rongoā mō te PPMS. Heoi anō, he huarahi whai hua hei whakaroa i te haere whakamua o te mate, hei whakahaere hoki i ō tohumate hei whakapai ake i te kounga o tō oranga.
E rua ngā wāhanga matua o ngā maimoatanga:
1. Ngā Maimoatanga Whakarerekē Mate (DMT)
Ka āwhina ēnei rongoā ki te whakaiti i te kino o ngā io, me te whakaroa i te kino haere o te mate. Ko te ocrelizumab (Ocrevus®) tētahi DMT matua kua whakaaetia mō te PPMS, ka taea te āwhina ki te whakahaere i te haere whakamua o ō tohumate.
2. Te Whakahaere i ngā Tohu
He mea nui tēnei mō tō whakamarie me tō tū motuhake i ia rā:
- Whakaora Tinana : Ka āwhina i te whakahaere i te pakari o te uaua, te ngoikore, me ngā raruraru taurite mā roto i ngā mahi whakakori tinana kua tohua.
- Whakaora Mahi: Ka ako i a koe i ngā rautaki whai hua, ka whakauru hoki i ngā taputapu hei whakahaere i ngā mahi o ia rā (pēnei i te whakakakahu, te tunu kai rānei).
- Ngā Rongoā: Ka tohua pea e tō tākuta he rongoā hei whakahaere i ngā take motuhake pēnei i te whakahaere i te pūkahukahu, te mamae, te ngenge, me te pouri .
Mā tō tākuta e whakarite he mahere maimoatanga māu anake. I mua i te tīmatanga o tētahi maimoatanga, me kōrero noa atu mō ngā pānga taha ka pā mai.
Ngā mea hei tumanako atu māu i a koe e noho tahi ana me te PPMS
He āhuatanga nui te PPMS e pā ana ki tō oranga o ia rā. I te whanaketanga o ō tohumate, me whakarerekē pea koe hei pupuri i tō haumaru me te ārai i ngā aituā.
Hei tauira, tērā pea ka hiahia koe ki tētahi taputapu hikoi, ki tētahi tūru wīra rānei i te mutunga. Kia maumahara: ehara te whakamahi i ēnei taputapu i te hinganga; he taputapu ēnei hei pupuri i tō mana motuhake me te pupuri i a koe kia ora tonu.
Ka pā te noho me te mate pūmau ki tō oranga ngākau. He mea noa te pōuri, te manukanuka rānei. He tino whakaora te kōrero ki tētahi kaiwhakatakoto whakaaro hauora hinengaro , te whakapuaki rānei i ō kare ā-roto ki tētahi tangata pono.
Kāore te PPMS e pā tika ki tō roanga oranga, engari ko te whakahaere i ngā raruraru te mea nui ki te pupuri i te kounga pai o te oranga.
Āhea koe me toro atu ki tō tākuta?
Mena kei a koe te PPMS, he mea nui kia mau tonu te whanaungatanga kaha ki tō tīma hauora. Tena koa whakapā atu ki tō tākuta mēnā:
- Ka kino haere ngā tohu, ā, ka pā ki tō mahi o ia rā.
- Ka pāngia koe e te pararutiki ohorere, te mamae tonu, te ngoikore rānei.
- Ki te hinga koe, ki te whara rānei nā te raruraru o te taurite; me haere tonu ki te Tari Whawhati Tata (ED) .
- Ka pāngia koe e ngā pānga kino o ō rongoā.
Ngā pātai hei pātai atu ki tō tākuta:
- Kua whakaūtia taku mate he PPMS, he momo MS rānei?
- He aha te huarahi pai hei whakahaere i aku tohumate motuhake?
- Ka whai hua ahau i te whakaora tinana, i te whakaora mahi rānei?
- He aha ngā mōrearea me ngā pānga taha o aku rongoā kua tohua?
- Me whakaaro rānei ahau ki ngā taputapu āwhina nekeneke pēnei i te tūru wīra i tēnei wā?
Karere Tangohia ki te Kāinga
- Ko te PPMS he momo MS e tohuhia ana e te haere haere mārire, pumau o ngā tohu, kaua ki ngā whakaeke ohorere.
- Ahakoa kāore anō kia mōhiotia he pūtake, he rongoā rānei, kei reira ngā maimoatanga tino whai hua hei aukati i te whanaketanga me te whakahaere i ō tohumate.
- Ko te tautuhi i te mate ka uru ki ngā whakamātautau motuhake pēnei i te MRI me ngā pokanga lumbar.
- Mā te maimoatanga tika me ngā whakarerekētanga o te momo noho, ka taea e koe te ora tonu i te oranga whai tikanga, whai kiko hoki.
- Mena ka kite koe i ētahi huringa nui, he āwangawanga rānei, whakapā atu ki tō tākuta i te wā tonu.
👩🏽⚕️ Ngā Pātai Auau (FAQs)
💬 He aha te Mate Pukupuku Matawhānui Tuatahi (PPMS)?
He momo uaua te PPMS o te Multiple Sclerosis, ina whakaekea hētia e tō ake pūnaha ārai mate te paninga tiaki (myelin) o ngā io i roto i tō roro me tō taurakira. He rerekē ki ētahi atu momo MS, ka piki haere tonu te PPMS i roto i te wā, ka pā kino ki tō nekehanga me tō kaha ki te mahi i ngā mahi o ia rā.
💬 He aha ngā tohu tōmua o te PPMS?
I ngā wāhanga tōmua, ka kite pea koe i te taumaha tonu o ō waewae, te ngoikore, te ngenge rerekē rānei. He maha ngā wā, ka kitea pea e koe te pānga o tō taurite, ka tūtuki, ka uaua rānei te hikoi. He mea nui, ka kino haere ēnei tohu i roto i te wā, kaua e huri haere, e ngaro rānei.
💬 Ka taea te whakaora katoa i te PPMS?
Ahakoa kāore anō kia kitea he rongoā mō te PPMS i tēnei wā, e hiahia ana mātou ki Nirogi Lanka kia mōhio koe he tumanako te hua o ngā whanaketanga hauora. Mā ngā maimoatanga hou pēnei i a Ocrelizumab me te whakaora tinana motuhake, ka taea e mātou te whakahaere pai i te haere whakamua o te mate me te whakapai ake i te kounga o tō oranga.
