Kei te ngaro tō taurite i a koe e hikoi ana, ā, he uaua ki te neke i ō kanohi? Tērā pea he PSP (Progressive Supranuclear Palsy)!

Kei te ngaro tō taurite, kei te hinga koe i ia wā e hikoi ana koe? He uaua rānei ki a koe te whakahaere i ō kanohi ina titiro koe ki raro? Kua kite pea koe i tētahi e mōhio ana koe kua pāngia e tēnei raruraru. Koinei pea ētahi o ngā tohu tōmua o tētahi mate onge e kiia nei ko te PSP, ko te Progressive Supranuclear Palsy rānei, ka kōrerohia e tātou i tēnei rā. Kaua e manukanuka, ka kōrerohia e tātou tēnei i roto i ngā taipitopito.

He aha te PSP (Progressive Supranuclear Palsy)? Kia mārama tātou!

Āe, kia tirohia tātou he aha tēnei mate he roa nei te ingoa, ko te PSP (Progressive Supranuclear Palsy). He māmā noa iho, he mate pūnaha io e kino ana ki ngā wāhanga o tō tātou roro. Ka pā pea ki ngā mea pēnei i te huarahi e hikoi ai koe, te huarahi e whakaaro ai koe, te huarahi e horomi ai koe, me te huarahi e neke ai ō kanohi. He ingoa anō hoki ōna, tae atu ki te mate Steele-Richardson-Olszewski.

Titiro mai, he māmā noa iho mēnā ka mārama koe ki ētahi o ngā kupu o te ingoa.

• Ko te tikanga o te "whakamua" , e ai ki taku kōrero i mua ake nei, ka kino haere ēnei tohu i te roanga o te wā. Ko te take o tēnei ko te ngoikore haere o ngā pūtau roro (he mate neurodegenerative).
• Ko ngā kupu "Supranuclear" me "Palsy" kua honoa hei whakaahua i tētahi āhuatanga e pā ana ki te nekehanga o ngā kanohi. Ko te tikanga o te "Supranuclear" ko te kino kei runga ake i ngā karihi o te roro e whakahaere ana i te nekehanga o ngā kanohi. Ko te tikanga o te "Palsy" ko te ngoikore o ngā uaua, he uaua rānei ki te whakamahi.

Kia maumahara, ka taea te whakapoauau i te PSP me te mate a Parkinson, inā koa i ngā wāhanga tōmua o te mate. Ka karangahia tēnei e ngā tākuta ko te "atypical parkinsonian syndrome" ko te "Parkinson-plus disorder" rānei. Ko te tikanga ahakoa he rite ngā tohu ki te mate a Parkinson, he rerekē, he uaua ake te āhua. Engari kia maumahara, ka tere ake te whanaketanga o te PSP i te mate a Parkinson.

Ko te nuinga o te wā ka kitea tēnei mate i roto i te hunga neke atu i te 60 tau te pakeke. He tino onge te pāngia o te hunga kei raro iho i te 40 tau te pakeke.

He aha ngā momo matua o te PSP (Progressive Supranuclear Palsy)?

E whā ngā momo matua, arā, ngā momo āhua, o te PSP. Ahakoa he rite tonu ngā tohu o ēnei momo katoa, he rerekētanga iti tonu. Ko ngā momo e rua e tino kitea ana ko:

1. Te mate Richardson

2. Te momo rite ki te mate a Parkinson (momo rite ki te PD - PSP-P)

E 75% pea o ngā tūroro PSP e pā ana ki ēnei momo e rua.

Tērā pea ka pāngia te tangata whai mate Richardson e te maha o ngā tohu e whai ake nei:

• Ngā raruraru ki te hikoi me te taurite.
• Ngā rerekētanga o te kōrero (te kōrero pōturi, te panoni o te reo).
• Ngā raruraru ki te mahara me te kaha ki te whakaaro.
• He uaua ki te whakahaere i ngā nekehanga o ngā kanohi (ina koa ina titiro ki raro).
• He āhua o te kanohi me te mea e titiro tika ana ki mua me ngā kanohi whānui.

He rite ngā tohu o te hunga whai mate a Parkinson (PSP-P) ki ērā o te mate a Richardson, engari he rite ake ki te mate a Parkinson. Ko te tohu matua ko te wiri (te wiri i puta mai i ngā uaua e kōpiripiri ana). He nui ake te kitea o ngā wiri i ngā raruraru taurite me ngā huringa whanonga. He nui ake te aro o te PSP-P ki ngā rongoā antiparkinsonian i ērā atu momo PSP.

Ko ētahi atu momo onge e rua ko:

• Te mate corticobasal.
• Te akinesia tino parakore me te tio haere (te uaua ki te neke me te tio i a koe e hikoi ana).

He mate noa te PSP (Progressive Supranuclear Palsy)?

Kāo, he tino onge te mate PSP. E kiia ana e rima noa iho i roto i te rau mano tāngata he mate pēnei. Kotahi noa iho i roto i te rau mano ka kitea houtia he mate pēnei i ia tau. Nō reira, ka kite koe i te onge o tēnei mate.

He aha ngā tohu o te PSP (Progressive Supranuclear Palsy)?

Ka rerekē ngā tohu o te PSP i ia tangata, i ia tangata. I te nuinga o te wā ka tīmata mārire, ā, ka kino haere i roto i ngā tau.

Ko ngā tohu tuatahi tino kitea pea ko:

• Te ngaronga o te taurite i te hikoi, i te piki arawhata rānei. Ka taea e tēnei te arahi ki te hinganga pinepine, inā koa ki muri.
• Te uaua ki te titiro ki raro me ngā kanohi.
• He āhua o te kanohi me te mea e titiro tika ana ki mua me ngā kanohi whānui.

Ko ētahi atu tohu ka kitea pea ko:

• Te uaua ki te horomi i te kai me te inu.
• Ka uaua te nekeneke i te tinana nā te pakari o te uaua.
• Te uaua ki te kōrero. Tērā pea ka puhoi, ka pōturi te reo. Tērā pea ka uaua hoki ki te whakapuaki kupu.
• Ngā huringa o te wairua: te pouri, te kore aro, te riri.
• Ngā panonitanga o te tuakiri.
• Ngā huringa whanonga: te mahi wairangi, te kore e taea te whiriwhiri i te tika me te hē.
• Te ngoikore o te mahara me te hinengaro (te hekenga āta haere o te mahara me te mātauranga).
• Te kore moe.
• Te mate whanonga moe REM (RBD) (te hamama me te wiri o ngā waewae i te wā e moemoeā ana).
• Te aro nui ki te mārama kanapa (photophobia).

He aha te take o te PSP (Progressive Supranuclear Palsy)?

Kāore anō kia tino mōhiotia e ngā kaipūtaiao te take o te PSP. Heoi anō,Kua kitea he pūmua e kiia nei ko te "tau" kei roto i tēnei. He pūmua tino nui te Tau mō te hauora o tō tātou roro. Koinei te pūmua e tiaki ana i te hanganga noa o ngā pūtau roro (ngā neuron).

Mena kei a koe te PSP, ka huihui ēnei pūmua tau i roto i tō roro, ka hanga he kohinga. Kātahi ka pakaru ngā pūtau roro i ēnei puranga pūmua tau. E kī ana ngā kairangahau he maha ngā take pea mō tēnei:

• Ngā whakarerekētanga ira matapōkere.
• Ngā mate urutā kāore i te mōhiotia.
• He matū kāore i te mōhiotia i kitea i roto i tō tātou taiao (hau, wai, kai) e āta kino ana i ētahi wāhanga tairongo o te roro.

Kāore te PSP e pā ki te katoa i te huarahi kotahi. Ka pā ki ngā wāhanga rerekē o te roro i ngā wāhanga rerekē o te mate, ki ngā taumata rerekē. Ā tōna wā, ka horapa te PSP ki te nuinga o te roro. I ngā wāhanga tōmua, ko te nuinga o te wā ka pā ki te basal ganglia me te take roro.

Ko tō roro te kawenga mō ngā mahi nui maha, pērā i te horomi me te tū. Ka āwhina hoki ngā ganglia basal i a koe ki te pupuri i te tū, te neke i ō kanohi, te whakaaro, me te whakahaere i ō kare ā-roto.

He mate tuku iho te PSP (Progressive Supranuclear Palsy)?

Kāo, he tino onge te PSP. Mena kei a koe te PSP, he iti rawa te tūponotanga ka pāngia ētahi atu mema o tō whānau, tae atu ki ō tuākana, tuākana me ngā tamariki. Nō reira, kāore he mea hei manukanuka.

He aha ngā āhuatanga mōrearea e pāngia ai te whakawhanaketanga o te PSP (Progressive Supranuclear Palsy)?

Ko te tau te take matua mō te whakawhanaketanga o te PSP. Ka piki ake tō tuponotanga ki te whakawhanake i te PSP ina eke koe ki te 60 tau te pakeke, neke atu rānei. He paku noa ake te kitea o tēnei mate i roto i ngā tāne i ngā wāhine.

He aha ngā raruraru o te PSP (Progressive Supranuclear Palsy)?

I te haere whakamua o te PSP, ka ngaro i ngā tūroro te mana whakahaere i ngā uaua o ō rātou waha, korokoro, me te arero.

Ka uaua pea te horomi i te kai me te inu i te korenga o te mana whakahaere o te uaua korokoro. Ka hiahiatia pea he ngongo whāngai hei ārai i te piri o te kai me te mate o te uma.

He maha ngā tāngata whai PSP e raru ana hoki ki te mahi a te puku me te pūkahukahu. Hei tauira:

• Te mate kōroke.
• Te uaua ki te mimi.
• Te mimi pinepine i te pō.
• Te nekenekehanga puku koretake (te kore e taea te pupuri i te puku).
• Te kore e taea te pupuri i te mimi.

Me pēhea te tātaritanga o te PSP (Progressive Supranuclear Palsy)?

He uaua pea te tautuhi tika i te PSP mā ngā tākuta. E ai ki taku kōrero i mua ake nei, ka taea te whakapoauau ki te mate a Parkinson, inā koa i ngā wāhanga tōmua.Kāore he whakamātautau motuhake e taea ai te tautuhi i te PSP i tēnei wā. Ko te tikanga, ka tautuhia e ngā tākuta te mate i runga i ō tohu me ngā whakamātautau whakaahua e tango whakaahua ana i tō roro.

Ki te whakapae tō tākuta kei a koe te PSP, tera pea ka tonoa e ia he matawai MRI (whakaahua irahiko aukume) o tō roro . Mā tēnei ka taea te whakakore i ētahi atu āhuatanga e puta ai ō tohu, pērā i te mate a Parkinson, te whiu rānei. Waihoki, ki te whakaatu te MRI i te mimiti i te roro waenga, ka nui ake te tūponotanga kei a koe te PSP.

Hei tātaritanga tika i tēnei mate, me toro atu pea koe ki tētahi tākuta roro e tohunga ana ki te mate a Parkinson me ngā mate nekehanga.

Ahakoa he maha ngā tohu o te PSP, ko te tohu matua e whakaū ana i te mate ko te uaua ki te neke i ngā kanohi ki runga, ki raro hoki. Ko ētahi atu tohu noa ko te hinganga pinepine me te uaua ki te horomi.

He aha ngā maimoatanga mō te PSP (Progressive Supranuclear Palsy)?

Engari, kāore anō kia kitea he rongoā, he rongoā rānei mō te PSP i tēnei wā. Heoi, he maha ngā maimoatanga hei āwhina i te whakahaere i ō tohumate me te whakapai ake i te kounga o tō oranga.

Ko ngā kōwhiringa maimoatanga ko:

• Ngā rongoā ā-waha.
• Ngā mahi whakaora nekehanga.
• Ngā maimoatanga kanohi.
• Te gastrostomy endoscopic percutaneous (PEG) - te whāngai mā roto i tētahi ngongo kua whakaurua ki roto i te puku.
• Te tiaki mamae.

Tērā pea he whakamātautau haumanu mō PSP ka taea e koe te whai wāhi atu. Pātai atu ki tō tīma hauora mō ēnei.

Ngā rongoā ā-waha

Ka taea e ngā rongoā ārai-parkinsonian te āwhina i te whakahaere i ngā tohu o te PSP. Ka taea e rātou te whakaora i ngā tohu pēnei i te raruraru taurite, te pakari o te uaua, te puhoi o te nekehanga, me te wiri. Heoi, kāore e rite te mahi mō te katoa. Ko ngā rongoā tino noa mō te PSP ko:

• Levodopa (hei tauira, Atamet®, Rytary®, Sinemet®).
• Ko te Levodopa me ngā rongoā anticholinergic.
• Amantadine (hei tauira, Symmetrel®).

Ka whakamahia ngā rongoā ārai pouri hei rongoā i te pouri haumanu. Tērā pea ka tohua ēnei e ngā tākuta hei āwhina i a koe ki te whakatau i ngā raruraru hauora hinengaro e puta mai ana i te PSP. Ko ngā rongoā ārai pouri e tohua whānuitia ana ko:

• Fluoxetine (hei tauira, Prozac®).
• Amitriptyline (hei tauira, Elavil®).
• Imipramine (hei tauira, Tofranil®).

He huarahi pai anō hoki te hinengaro whakaora (kōrero whakaora) hei āwhina i ngā raruraru hauora hinengaro me te noho tahi me te mate.

Ngā whakaora nekehanga

Ka taea e ēnei maimoatanga te āwhina i te whakamamae i ētahi o ngā tohu o te PSP:

• Whakaora tinana: Ka āwhina te whakaora tinana ki te whakahaere i ngā āhuatanga pēnei i te mamae, te pakari, me te uaua ki te neke haere.
• Whakaora mahi: He kaiwhakaora mahi te tangata e āwhina ana i a koe ki te whakapai ake i tō kaha ki te mahi i ngā mahi o ia rā. Ka taea e rātou te whakaako i a koe ki te tū, ki te noho, ki te neke haere, ki te whakamahi rānei i ngā taputapu maha hei mahi haumaru i tāu mahi.
• Whakaora kōrero: Ka āwhina ngā kaiwhakaora kōrero i te tangata ki te wikitoria i ngā uauatanga o te kōrero me te horomi.

Ngā maimoatanga kanohi

Ka taea e ēnei maimoatanga te āwhina i ngā raruraru kanohi maha:

• Ngā werohanga Botox® (paitini botulinum): Mena he uaua ki a koe te whakahaere i ō kamo, ka taea e ngā werohanga Botox te whakangāwari i ngā uaua o te kamo mō te wā poto.
• Ngā pata kanohi me ngā roimata hangai: Ka āwhina ēnei ki te whakamakuku i ō kanohi mēnā he maroke ō kanohi nā te iti o te hinu whakahinuhinu kanohi.
• Mōhiti motuhake: Mā ngā mōhiti motuhake me ngā karaihe porohita ka āwhina i a koe ki te kite i ngā mea kei raro iho i tō rārangi tirohanga.
• Mōhiti porowhita: Ki te pāngia koe e te mārama kanapa, mā te mau i ngā mōhiti pouri e takai ana i ō kanohi, pērā i ngā mōhiti rā, ka taea te whakaora.

Te Gastrostomy Endoscopic Percutaneous (PEG)

Ina kaha rawa te PSP, tērā pea ka tae koe ki tētahi wāhi kāore e taea e koe te horomi i tētahi kai, i tētahi inu rānei. Ko te tikanga tēnei kāore koe e taea te kai, te inu rānei. I mua i tō taenga ki tēnā wāhi, ka tūtohu pea tō tākuta i tētahi gastrostomy endoscopic percutaneous (PEG) .

He māmā noa iho, he tikanga te PEG e whakaurua ai he ngongo e te taote pokanga mā roto i tō puku ki roto i tō puku. Ka uru ō kai, ō rongoā, me ō wai ki roto i tō tinana mā roto i tēnei ngongo.

Te tiaki mamae

He momo tiaki motuhake te tiaki mamae e whakarato ana i te whakaora i ngā tohumate, te whakamarie, me te tautoko i te hunga e ora ana me ngā mate kino pēnei i te PSP. Ehara i te mea ko te tūroro anake e tautoko ana, engari ko ō rātou kaitiaki me te whānau hoki.

Hei tāpiritanga tēnei tiaki ki te maimoatanga e whiwhi ana koe mai i ō tākuta hei āwhina i a koe ki te whakahaere i tō PSP. Mā te tiaki mamae ka whakaratohia te tautoko hauora, pāpori, me te hinengaro e hiahiatia ana e koe kia pai ake ai te noho me te aro atu ki tētahi mate kino.

He aha te āhua o te PSP (Progressive Supranuclear Palsy)? (Te āhua o te mate)

He kino te āhua o te PSP. Ka kino haere ngā tohu i te roanga o te wā, ā, kāore he rongoā hei whakakore, hei whakamutu rānei i te PSP i tēnei wā. Heoi, ko te wawe o te tātaritanga me te tīmatanga o tētahi mahere maimoatanga, ka pai ake te kounga o tō oranga.

He tokomaha te hunga whai PSP ka hiahia ki tētahi tūru wīra i te mutunga. Tērā pea ka hiahia rātou ki te tiaki wā-wāhanga, wā-katoa rānei i roto i ngā tau e toru ki te whā o te mate. Heoi, he rerekē tēnei i ia tangata, i ia tangata. I roto i te wā, ka noho hei mea mōrearea ngā raruraru o te PSP ki te ora.

He aha te roanga o te oranga o te tangata e pāngia ana e te PSP (Progressive Supranuclear Palsy)?

Ko te tikanga ka ora te hunga whai PSP mō te ono ki te iwa tau i muri i te tautuhi i te mate, engari ka rerekē pea tēnei.

Ka piki ake te mōrearea o te pāngia e te niumōnia ka mate pea ngā tohu o te PSP. Ko te tino take o te mate i waenga i te hunga whai PSP ko te niumōnia manawa. Koinei te wā ka uru pōrearea te kai me te inu ki roto i ngā pukahukahu mā te pūkahukahu nā te mea he ngoikore ngā uaua o te korokoro, ā, kāore i te tika te taunga.

He nui ake te tūponotanga o te hunga whai PSP ki te hinga. Ka taea e te hinganga te arahi ki te whati o ngā wheua me ngā whara o te mahunga. Ko ngā hinganga e puta ai ngā whara kino he tino take o te mate i waenga i te hunga whai PSP.

Ka taea te ārai i te PSP (Progressive Supranuclear Palsy)?

Nā te mea kāore anō kia mōhiotia e ngā kairangahau te pūtake o te PSP, kāore anō kia kitea he huarahi hei ārai i tēnei wā.

Āhea ahau me toro atu ki te tākuta?

Me toro atu koe ki tō tīma hauora i ia wā, i ia wā, hei aroturuki i te ahunga whakamua o ō tohumate, hei whakarite hoki kei te tika te haere o tō mahere maimoatanga.

Ki te puta mai ētahi tohu e āwangawanga ana koe, waea atu ki tō tākuta tonu atu.

He uaua ki te whakatau mēnā kei a koe te PSP (Progressive Supranuclear Palsy). Mā tō rōpū hauora koe e āwhina ki te whakawhanake i tētahi mahere whakahaere tohumate whaiaro. Ko te mea nui ko te whakarite kia whiwhi koe i te tautoko e hiahiatia ana e koe, me te aro tonu ki tō hauora. Kia maumahara, kei reira tonu tō rōpū hauora hei tautoko i a koe me tō whānau.

Hei whakamutunga, ko ngā mea tino nui hei maumahara

He mate uaua, he onge hoki te PSP. Heoi, he mea nui kia mōhio ki tēnei mate, kia mōhio wawe ki ngā tohu, ā, kia rapu tohutohu hauora me te maimoatanga tika.

• Kia mōhio ki ngā tohu tōmua: Kia mataara ki ngā āhuatanga pēnei i te uaua ki te hikoi, te ngaro o te taurite, me te uaua ki te titiro ki raro.
• Rapua he tohutohu hauora: Ki te ruarua koe, me toro atu ki tētahi tākuta roro mō tētahi whakamātautau.
• Haere tonu te maimoatanga: Ahakoa kāore e taea te whakaora i te mate, he maimoatanga kei reira hei whakahaere i ngā tohu me te whakapai ake i te kounga o te oranga.
• Whakaarohia tō hauora hinengaro: He mea nui kia kaha tonu tō hinengaro ina noho koe me tēnei āhua. Rapua he tohutohu mēnā e tika ana.
• Kia tūpato ki ngā ratonga tautoko: Ka taea hoki e te whakaora tinana, te whakaora mahi, te whakaora kōrero, me te tiaki mamae te āwhina i a koe.

Ko tāku tumanako he whai hua ēnei mōhiohio ki a koe. Mena kei te pāngia koe, kei pāngia rānei koe e tēnei raruraru, kaua e mamae ko koe anake. Mā te tautoko hauora tika me te manaaki i ō hoa aroha, ka taea e koe te aro atu ki tēnei wero.

` PSP, Te Mate Pūkahukahu Ā-Ao, Te Mate Roro, Te Mate Pūkahukahu, Te Mate a Parkinson, Ngā Mate Nekehanga, Te Taurite