He aha te PPMS (Primary Progressive Multiple Sclerosis)? Me kōrero māmā noa iho!

Kua rongo pea koe i tētahi mate e kiia nei ko te ` Multiple Sclerosis (MS)`. Ko te PPMS (Primary Progressive Multiple Sclerosis) he momo motuhake o te MS. I tēnei wā, kāore ō tohu e puta ohorere mai, ka memeha haere i muri i ētahi rā, kātahi ka hoki mai anō , ka hoki mai anō. Engari, ka piki haere ō tohu i te roanga o te wā . Pērā i te piki i tētahi arawhata, ka kino haere ēnei tohu. Kaua e manukanuka, tera pea he ahua uaua tēnei. Me kōrero mārama, me te ngāwari hoki mō ngā mea katoa, āe?

He aha tonu te PPMS?

Ki te whakarapopototanga, ko te 'Multiple Sclerosis (MS)' he āhuatanga e whakaeke hē ai tō tātou ake pūnaha ārai mate, te pūnaha e tiaki ana i a tātou i te mate, i tō tātou ake pūnaha io matua ('central nervous system') – te roro me te taurakira (ngā taura io i roto i te tuaiwi). Ka pakaru tēnei i te hipoki tiaki (myelin) e karapoti ana i ngā muka io.

Ināianei, he maha ngā momo matua o te MS.

• MS Hoki-Hoki-Mai (RRMS): He maha ngā tāngata e pāngia ana e tēnei momo. I roto i tēnei momo, ka kino haere ngā tohu (e kiia ana tēnei he 'hokinga-mai'), ā, i muri i tētahi wā, ka memeha katoa ngā tohu, ka ngaro katoa rānei.
• MS Whakamua Ahunga Whakamua (PPMS): I roto i te PPMS, te momo e kōrerohia nei e tātou i tēnei rā, he iti ake ngā 'hokinga' mārama pērā i te RRMS. Engari, ka kino haere ngā tohu mai i te tīmatanga. I ētahi wā ka iti pea ngā 'rerekētanga', arā, ka pai haere, ka kino haere ngā tohu. Engari i te nuinga o te wā, ka kino haere te āhua.
• MS Tuarua Whakamua (SPMS): Ka taea e ētahi tāngata whai RRMS te whakawhanake i te mate hei SPMS i muri i ētahi tau. Kātahi ka kino haere ō rātou tohu, ā, ka iti haere te hokinga mai.

I ētahi wā ka kiia ngātahitia te PPMS me te SPMS ko te 'Progressive MS' nā te mea he āhua ahu whakamua tō rāua. I roto i te PPMS, he taumata mumura kei roto i te pūnaha io, ā, ka pakaru ngā pūtau io, ka ngaro haere ā rātou mahi. Koinei te mea e kiia nei e tātou ko te 'neurodegeneration'.

He pēhea te noa o te PPMS?

E miriona ngā tāngata e pāngia ana e te MS puta noa i te ao. E kiia ana kei te tata ki te miriona ngā tāngata e pāngia ana e te MS i te United States anake. Tata ki te 10% o rātou, tata ki te kotahi i roto i te tekau tāngata, he momo MS tēnei e kiia nei ko te PPMS. Nō reira, he iti ake te kitea o te PPMS i ērā atu momo MS.

He aha ngā tohu o te PPMS? He aha ngā āhua o aua tohu?

Ko te āhuatanga matua o te PPMS ko te kino haere o ngā tohu o te MS.Ka rerekē pea ēnei tohu i ia tangata, i ia tangata. Waihoki, ka rerekē te tīmatanga me te tere o te whanaketanga o ngā tohu i ia tangata, i ia tangata.

Anei ētahi o ngā tohu tino kitea:

• Te uaua ki te hikoi: Koinei te tohu tuatahi e pā ana ki te nuinga o ngā tūroro PPMS. Tērā pea ka pāngia rātou e te pakari o ō rātou waewae, te ngoikore, me te ngaro o te taurite. Tērā pea ka tere te ngenge i a rātou e hikoi ana.
• Te wiriwiri, te māuiui rānei i ngā wāhanga rerekē o te tinana: Ka pā tēnei ki ngā ringaringa, ki ngā waewae, ki te mata, ki tētahi atu wāhi rānei o te tinana.
• Ngā Huringa Tirohanga: Tērā pea ka pōuri te tirohanga o te kanohi kotahi, ka rua te tirohanga, ka mamae rānei i te nekehanga o ngā kanohi. Heoi, he iti ake te kitea o ēnei raruraru tirohanga i roto i te PPMS i ērā i roto i te RRMS.
• Te ngenge tonu (`fatigue`): Ehara tēnei i te ngenge noa. Tērā pea ka whakaaro koe kāore koe e pai ake ahakoa te nui o tō okiokinga. He arai nui tēnei ki ō mahi o ia rā.
• Te uaua ki te mimi me te tūtae: Kei roto i tēnei ko te hiahia ohorere ki te mimi (`urgency`), te uaua ki te whakahaere i te mimi (`incontinence`), me te uaua ki te whakakore katoa i te pūkahukahu . He mea noa hoki te mate kōroke.
• Te āhua kei te pupuri pūmautia tō uma, tō puku rānei e tetahi: E kīia ana tēnei e ētahi ko te 'awhi a MS'.
• He kare o te ru hiko e rere ana i te tuara, i ngā ringa, i ngā waewae rānei ina piko te kaki ki mua: Ka kiia tēnei ko te 'tohu a Lhermitte'.
• Te pakari o te uaua (te koretake o te manawa) te ngoikore rānei: Ka uaua pea te whakahaere me te neke i ō peka.
• Ngā raruraru kōrero: Tērā pea ka rongo koe kei te pōturi ō kupu, kei te rerekē rānei te tere o tō kōrero.
• Ngā raruraru horomi.
• Ngā raruraru whakaaro me te mahara: Te āhua nei he kohu tō roro ('kohu roro'), arā, he uaua ki te maumahara ki ngā mea, ki te arotahi, me te whakatau kaupapa.
• Ngā raruraru hinengaro: Tērā pea ka pā mai te pouri , te manukanuka , me te riri .

Ko te mea nui, kāore pea ēnei tohu e tino kitea i te tīmatanga. Tērā pea ka whakaaro koe, "Āe, he ngenge noa iho." Engari ki te haere tonu te kino haere i roto i te wā, me āwangawanga koe.

He aha te take e puta ai te PPMS? He aha te take?

Kāore anō kia mōhiotia e ngā kaipūtaiao te tino take o te MS (tae atu ki te PPMS), engari e whakaarohia ana he maha ngā āhuatanga e whai wāhi ana ki tēnei:

1. Te Āhuatanga Ira: E whakaarohia ana ko ētahi huringa o ō tātou ira (DNA) ka nui ake te tūponotanga ka pāngia tātou e ngā āhuatanga ārai mate pēnei i te MS (he mate e whakaekea ai te tinana e te pūnaha ārai mate). Heoi, ehara i te mea mena kei a koe te MS, ka pāngia hoki ō tamariki e te MS. Kāore te awe o ngā ira ki te MS i te nui e whakaarohia ana e koe. Nō reira, he iti noa te tūponotanga ka horahia te mate e ngā tamariki.

2. Ngā Take Taiao: E kī ana ētahi rangahau he mea pea kei roto i te taiao e noho nei tātou ka whai wāhi ki te whanaketanga o te MS. Hei tauira:

• Ngā mate huaketo : Kei te tirotirohia hoki ētahi mate huaketo, pērā i te Epstein- Barr Virus (EBV), mō te hononga i waenga i te MS me ētahi momo mate.
• Te korenga o te huaora D : E whakaponohia ana hoki ko te hunga he iti te taumata o te huaora D mai i te rā ka nui ake te mōrearea ki te whakawhanake i te MS.
• Te kai hikareti: He nui ake te mōrearea o te hunga kai hikareti ki te whakawhanake i te MS, ā, ka tere ake pea te horapa o te mate.

3. Te mahi a te pūnaha ārai mate: I tētahi ara, ka honoa ēnei āhuatanga ira me te taiao hei hanga i tētahi mea hē ki te pūnaha ārai mate. Koia te take ka tīmata ai te whakaeke i tō tātou ake pūnaha io.

Ki te kī māmā noa, ehara te PPMS i te mate e puta mai ana i te take kotahi. He maha ngā āhuatanga e puta mai ana.

He aha atu ngā raruraru ka puta mai i te PPMS?

I te haere whakamua o ngā tohu o te PPMS, ka ara ake pea ētahi atu raruraru me ngā uauatanga. Ko ētahi tauira ko:

• Te pakari haere o te uaua (spasticity): Ka piki ake te mamae me te uaua ki te neke.
• Te tūponotanga o te ngaronga katoa o te tirohanga (he onge).
• Te kino haere o ngā uauatanga o te whakahaere i te mimi: Ka hua ake pea tēnei i ngā mate urutā maha o te ara mimi.
• Te pikinga ake o te koretake o te moepuku.
• Te hekenga atu o te mahara me te kaha ki te whakaaro.
• Ngā raruraru hauora hinengaro: Tērā pea ka kino haere ngā āhuatanga pēnei i te pouri me te manukanuka.
• Ngā hinganga maha me ngā whara e puta mai ana pērā i te whati o te waewae.
• Ngā mate pēhanga i puta mai i te roa rawa o te wā e noho ana i te moenga.
• Te mōrearea o ngā mate manawa: Ina koa ka kino rawa te mate.

Me pēhea te tautuhi i te PPMS? (Tautuhinga)

Kāore he whakamātautau kotahi e taea ai te tautuhi i te PPMS. Ka whakaarohia e tō tākuta ō tohumate, tō hītori hauora, he whakamātautau tinana, me ētahi atu whakamātautau motuhake, kātahi ka whakatau "tērā pea he PPMS tēnei."

Anei ētahi o ngā whakamātautau e whakamahia whānuitia ana mō tēnei:

1. MRI (Atahanga Āhua Aukume): Koinei te whakamātautau matua e whakamahia ana hei tautuhi i te MS. Ka taea e ia te rapu i ngā kino (ngā whara) i roto i te roro me te taurakira i puta mai i te MS. I roto i te PPMS, he mea nui te tauira o ēnei whara me te āhua o te hurihanga i roto i te wā.

2. Te Werohanga o te Lumbar (e mōhiotia ana ko te Spinal Tap): Ko te tikanga o tēnei ko te tango i tētahi tauira iti o te wai cerebrospinal (CSF) mai i tō tuara o raro. Ka tirotirohia tēnei wai kia kitea ai mēnā he huringa motuhake ki te MS, pērā i ngā pūmua e kiia nei ko ngā roopu oligoclonal. Kāore ēnei e motuhake ki te MS, engari he tohu pea ēnei mō te mumura i roto i te roro, i te taurakira rānei.

3. Ngā whakamātautau toto: Mā ēnei ka mōhio koe kāore he mate kē atu e puta ai ngā tohu rite ki te MS.

4. Ngā Rangahau Pūmanawa Whakaoho: Ka inehia e ēnei te tere o te haere o ngā tohu hiko mā te pūnaha io. Ina pakaru ngā io i te MS, ka taea te whakaroa i te tere o te haere o ēnei tohu.

5. Tomography Whārite Ātaahua (OCT): He matawai kanohi kore mamae tēnei ka taea te tirotiro mēnā he kino ki te io whatu me te retina i muri o te kanohi nā te MS.

Hei tātaritanga i te PPMS, ka whakaarohia e ngā tākuta te kino haere o ngā tohumate i roto i te wā o te iti rawa i te tau me te kitea o ētahi āhuatanga motuhake i runga i te matawai MRI .

I tehea tau ka puta te PPMS?

Ko te nuinga o te tangata ka kitea he PPMS i roto i ō rātou tau 40, 50 rānei. He pakeke ake tēnei i te RRMS. Heoi, ka taea te pā ki ngā tau katoa, i roto i te hunga taitamariki me te hunga kaumātua.

He aha ngā maimoatanga mō te PPMS?

E rua ngā whāinga matua mō te rongoā i te PPMS:

1. Ngā Maimoatanga Whakarerekē Mate (DMT): E ngana ana ēnei ki te whakaroa i te tere o te kino haere o te mate.

2. Te Whakahaere i ngā Tohumate: Ka āwhina tēnei ki te whakaiti i tō mamae me te whakapai ake i te kounga o tō oranga.

Ngā Maimoatanga Whakarerekē-Mate (DMT)

He maha ngā momo DMT e wātea ana mō te RRMS, engari he iti noa ngā DMT kua whakaaetia mō te PPMS.

• Ocrelizumab (Ocrevus®):Koinei te DMT matua kua whakaaetia mō te PPMS i tēnei wā. He rongoā tēnei e hoatu ana mā te uaua. Kua whakaatuhia e ngā rangahau ka taea e tēnei rongoā te āwhina ki te whakahaere i te kino haere o ngā tohu i roto i ngā tūroro PPMS.

E whakapono ana ngā tākuta he iti ake te tūponotanga ka pāngia te PPMS e te mumura o te pūnaha ārai mate i te RRMS, koia te take he iti ake te whai huatanga o ngā DMT e aro ana ki tēnei. Heoi, he nui ngā rangahau e haere ana mō te MS, nō reira tera pea he maha atu ngā maimoatanga mō te PPMS ā muri ake nei.

Te whakahaere i ngā tohu

He wāhanga tino nui tēnei o te whakahaere i te PPMS. Ka whakatauhia tēnei maimoatanga i runga i ō tohumate.

• Whakaora Tinana: He tino āwhina tēnei mō ngā āhuatanga pēnei i te uaua ki te hikoi, te pakari o te uaua, me te ngoikore. Ka taea e ngā mahi whakakori tinana me te totoro te āwhina ki te whakapai ake i te kaha, te taurite, me te nekenekehanga.
• Whakaora Mahi: Ka whakauru i ngā tikanga me ngā taputapu hei āwhina i te tangata ki te mahi i ngā mahi o ia rā (hei tauira, te whakakakahu, te kai, te tuhituhi) me te ako takitahi.
• Rongoā:
• Ngā rongoā mō te pakari o te uaua (spasticity).
• Rongoā mō te ngenge.
• Rongoā mō ngā raruraru o te pūkahukahu.
• Rongoā mamae.
• Rongoā mō te pouri, te manukanuka rānei.
• Whakaora Kōrero: Mena he uaua ki te kōrero, ki te horomi rānei.
• Āwhina Nekeneke: Tērā pea ka hiahia koe ki ētahi mea pēnei i te tokotoko, te taputapu hikoi, te tūru wīra rānei.

Mā tō tākuta e whakamārama ngā pānga taha pea o tētahi rongoā, maimoatanga rānei i mua i tō tīmatanga, nō reira kaua e wehi ki te pātai i ō pātai.

He ara hei ārai i te PPMS?

Engari, kāore he huarahi hei ārai i te MS (tae atu ki te PPMS) nā te mea kāore anō kia mōhiotia te tino take.

Heoi, ki te mea kei a koe te MS, kei reira ētahi mea ka taea e koe te mahi hei whakaiti i te maha o ngā putanga mai o te mate ('relapses' - ahakoa he onge ēnei i roto i te PPMS) me te whakahaere i te tere o te kino haere o te mate:

• Te tango i ngā maimoatanga kua whakaritea (ina koa ko ngā DMT) kia rite ki te mea i whakaritea e te tākuta.
• Te whai i tētahi momo noho hauora (kai pai, moe pai, whakakori tinana).
• Kaua rawa e kai paipa.
• E ngana ana ki te whakaiti i te ahotea i te mea e taea ana.

He aha ngā momo wheako ka pā ki te tangata whai PPMS?

He mate mau tonu te PPMS ka pā nui ki tō oranga o ia rā. I te kaha haere o ngā tohu, me huri pea tō āhua noho hei tiaki i a koe anō me te karo i ngā aituā.

Whakaarohia, ki te mea he uaua ki a koe te haereere ko koe anake, me kōrero koe ki tō tākuta mō tētahi taputapu nekeneke pēnei i te tūru wīra. He uaua pea te whakaae ki ēnei mea i te tīmatanga. Engari,Mā ēnei taputapu koe e āwhina ki te mahi takitahi ake, me te pupuri hoki i tō oranga kia ora tonu.

Haunga ngā pānga tinana o te PPMS, ka pā nui anō hoki te noho me tēnei mate mau tonu ki tō hauora hinengaro. He mea noa te pāngia e ngā kare ā-roto o te pouri, te riri, te kore tumanako me te mokemoke. Ka kitea e ētahi he tino whakamarie i te kōrero ki tētahi tohunga hauora hinengaro , pērā i tētahi kaiwhakatakoto whakaaro, i tētahi tohunga hinengaro rānei. Nō reira, ki te hiahia koe, kaua e mangere ki te tono āwhina.

Kia maumahara, kāore anō kia kitea he rongoā mō te PPMS. Heoi, kei te haere tonu ngā rangahau hei ako atu mōna, hei kimi hoki i ngā maimoatanga hou hei whakaora i a koe. Nō reira kaua e mutu te tumanako.

Kia pēhea te tere o te kino haere o ngā tohumate PPMS?

He pātai tēnei e pātaihia ana e te tini tāngata. Heoi, he rerekē te wheako o te katoa e pāngia ana e te PPMS. Mō ētahi tāngata, ka pōturi te kino haere o ngā tohu, i roto i ngā tau. Mō ētahi atu, ka tere ake te kino haere o ngā tohu.

He uaua ki te matapae tika i tēnei. Ki te kite koe i ētahi huringa mārama o ō tohumate, ki te tere rānei te kino haere, me kōrero tonu ki tō tākuta.

He aha te roanga o te oranga o te tangata whai PPMS?

He mea anō tēnei e wehingia ana e te tini tāngata. Heoi, kāore te PPMS e pā tika ki tō roanga o te ora. Ara, ko te whai PPMS ehara i te mea he poto ake te roanga o te ora o te tangata i ērā o ētahi atu.

Heoi, ko ngā raruraru nui o te mate (hei tauira, ngā mate kino, ngā raruraru i puta mai i te takoto roa i runga i te moenga) ka pā kino ki te ora mēnā kāore e tika te whakahaere. Nō reira, he mea tino nui kia whai i ngā tohutohu a te taote me te tiaki i tō hauora.

Āhea ahau me toro atu ki te tākuta?

Mena kei a koe te PPMS, he mea nui kia tirotirohia e koe te hauora i ia wā. Hei tāpiri, tirohia he tākuta mēnā:

• Mena kei te kino haere ngā tohumate o te PPMS, ā, kei te pā ki tō oranga o ia rā.
• Mena he mea hou, ka puta he raruraru nui pēnei i te pararutiki.
• Mena kei te mamae tonu koe, kei te ngoikore rānei ō waewae, kei te piki haere rānei.
• Nā te mea ka pā te PPMS ki tō taurite me tō nekehanga, ki te hinga koe, ka whara koe, me toro atu ki te tākuta tonu, me waea atu rānei ki ngā ratonga ohorere.
• Mena ka pā mai ngā pānga taha o te rongoā e tangohia ana e koe .
• Mena kei te pāngia koe e te mate hinengaro (pēnei i te pouri, te manukanuka).

He aha ngā pātai me pātai atu e au ki te tākuta?

Ina haere koe ki te tākuta, he mea pai kia tuhia ō pātai. Anei ētahi tauira:

• Kei a au te PPMS, tētahi atu momo MS rānei? Me pēhea taku mōhio?
• Me pēhea taku whakahaere i aku tohumate? He aha ngā mea motuhake ka taea e au te mahi?
• Ka tūtohu mai koe i te whakaora tinana, i te whakaora mahi rānei māku? Kei hea ahau e whiwhi ai i aua ratonga?
• He aha ngā rongoā e taunaki ana koe māku? He aha ō rātou pānga taha? Kia pēhea te roa me tango e au?
• Me whakamahi ahau i tētahi tūru wīra, i tētahi atu taputapu nekeneke rānei? Mēnā koinā, kia pēhea te roa?
• Me whakarerekē taku kai?
• Me aha ahau hei tiaki i tōku hauora hinengaro?

Karere Whakamutunga mō te Tango ki te Kāinga

He mate te PPMS, pērā i ētahi atu momo o te Multiple Sclerosis, ka pā kino pea ki tō oranga. He pono tēnā. Kaua e manukanuka, ehara i te mea ko koe anake.

Kia maumahara, he maha ngā maimoatanga me ngā tikanga hei āwhina i te whakaroa i te haere whakamua o ō tohu me te whakapai ake i te kounga o tō oranga.

I te tīmatanga, kāore pea koe e kite i ngā tohu maha, engari i roto i te wā, ka piki haere pea. Me whakamahi pea koe i ngā taputapu pēnei i te tūru wīra hei āwhina i a koe ki te haereere ko koe anake. Ehara i te mutunga o te ao. Ka taea e tō tākuta, e te kaiwhakaora tinana, me ētahi atu kaiwhakarato hauora te āwhina i a koe i te huarahi. Ka taea e rātou te āwhina i a koe ki te whakahaere i ō tohu me te ārahi i a koe ki te noho hauora me te ora kaha.

Nō reira, kia noho pai. Kia mōhio. Pātai atu. Tikina te āwhina e hiahiatia ana e koe. Kōrero ki tō whānau me ō hoa mō tēnei. He kaha nui hoki tā rātou tautoko mōu.