Kei te pāngia koe e ēnei huringa e te mate a Pick? Me ako tātou mō te mate a Pick

He maha ngā wā ka miharo tātou ina kite tātou i ngā huringa ohorere o te whanonga me te kōrero a ētahi o ō tātou whanaunga, kāore? I tēnei rā ka kōrero tātou mō tētahi mate hauora pea kei muri i ēnei huringa. Ahakoa he kaupapa uaua tēnei, me ngana tātou ki te mārama ngāwari.

He aha te mate a Pick? He aha te rerekētanga mai i te mate Niemann-Pick?

He kupu ngāwari noa iho, ko te Mate a Pick he mate e pā ana ki te roro, e whakamate haere ana i ngā pūtau. He momo mate wareware e kiia nei ko te mate wareware o mua o te wā (FTD) . Ka kitea pinepinetia i roto i te hunga kei raro iho i te 65 tau te pakeke. I mua, i huaina anō te mate wareware o mua o te wā ko te mate a Pick. Engari i nāianei, ka whakamahia noa tēnei ingoa e ngā tākuta i ngā wā e tutuki ana ētahi paearu.

Inaianei pea kei te whakaaro koe, "Āe... he rite tonu te mate a Pick ki te mate a Niemann-Pick?" Kāore, he rerekē rawa ngā mate e rua. Ahakoa he rite tonu te wāhanga "Pick" o te ingoa, kāore he hononga i waenganui i ngā mate e rua.

• Te Mate a Pick: I tapaina i muri i a Arnold Pick, he tohunga roro me te tohunga hinengaro Czech nāna i tautuhi tuatahi te mate i te tau 1892. He momo mate wareware frontotemporal (FTD), ko te tikanga ka pā ki tō roro anake.
• Mate Niemann-Pick: I tapaina i muri i ngā tākuta Tiamana e rua, a Albert Niemann rāua ko Ludwig Pick, ko te āhuatanga o tēnei mate ko te kohikohinga o ngā ngako i roto i te tinana me te mate i roto i te huarahi e whakahaeretia ai. Ina kohikohi ngā ngako, ka pā ki ngā whekau maha, tae atu ki te roro, te ate, te whēkau, te hinu wheua, me ngā pukahukahu.

Kei te mārama koe ki te rerekētanga? Ko tētahi he mea e pā ana ki te roro, ko tētahi he mea e pā ana ki ngā wāhanga rerekē o te tinana.

Ko wai ka pāngia e tēnei mate? He pēhea te noa o tōna pānga?

Ko te mate a Pick ka kitea i te wā taitamariki ake i ērā atu mate pēnei i te mate wareware. Ko te nuinga o te wā ka kitea i roto i te hunga kei roto i ō rātou tau 50 me te 60. Heoi, i ētahi wā ka pā ki te hunga 20 tau te pakeke, tae atu rānei ki te 80 tau te pakeke.

He taunakitanga kei reira e whakaatu ana ka taea te horapa o te mate i roto i ngā whānau. Kua kitea e ngā kairangahau kia toru ngā whakarerekētanga ira e pā ana ki tēnei mate. Heoi, i te nuinga o te wā, he mate tūpono noa iho tēnei. Ko te tikanga ka taea e te tangata te pāngia e tēnei mate me te kore he hītori whānau.

He uaua ki te kī tika i te whānui o tēnei mate. E ai ki ngā tohunga, kei waenganui i te 15 me te 22 ngā mate mō ia 100,000 tāngata. Heoi, kei te ruarua te tika o ēnei tatauranga, nā te mea he tino uaua ki te tautuhi i te mate i te wā e ora ana, ā, i ētahi wā ahakoa i muri i te matenga, he uaua ki te tautuhi. Nō reira, tera pea ka nui ake te maha tuturu o ngā tūroro.

He pēhea te pānga o te mate a Pick ki te tinana?

He mate neurodegenerative te mate a Pick, he momo dementia e kiia nei ko te dementia frontotemporal (FTD). Ki te kī ngāwari, ka mutu haere te mahi a ngā pūtau io (ngā neuron) i roto i te roro. Ka tīmata te mimiti o ngā wāhanga o te roro kua pāngia (atrophy). Kātahi ka ngaro ngā āheinga i whakamahia e aua wāhanga hei whakahaere. Ahakoa he rite ētahi ki te mate a Alzheimer, ka tīmata te mate a Pick i te wā taitamariki, ā, he maha ngā rerekētanga nui.

Nā te mea ka pāngia e te Mate a Pick ētahi wāhanga anake o te roro, ko ngā tohu matua ko ngā huringa whanonga, ngā pūkenga reo rānei . He maha ngā wā, kāore e taea e te hunga whai Mate a Pick te mōhio kei a rātou tētahi raruraru, tētahi āhuatanga rānei. Nā te mea kāore e taea e ō rātou roro te tukatuka i ngā mōhiohio e pā ana ki tō rātou āhuatanga. Ka kiia tēnei ko te "kore māramatanga".

He aha ngā tohu o te mate a Pick?

E rua ngā momo matua o te mate a Pick: ko tētahi ko te mate wareware frontotemporal rerekē te whanonga (bvFTD) , ā, ko tētahi ko te aphasia ahu whakamua tuatahi (PPA), e pā ana ki ngā wāhanga o te roro e pā ana ki te reo.

Te mate wareware frontotemporal rerekētanga whanonga (bvFTD)

Ka taea te wehewehe i ngā tohu o tēnei āhuatanga bvFTD ki ngā wāhanga matua e ono:

• Te ngaronga o ngā aukati: Ko te "aukati" te wāhanga o te roro e kī mai ana "kaua e mahi i tēnei." Ina pakaru ēnei wāhanga, kāore e taea e tātou te aukati i a tātou anō ki te kōrero, ki te mahi rānei i ngā mea kāore e tika.
• Te korenga o tētahi "tātari" mō ngā mea e kōrerotia ana: Ko te kōrero i ngā mea kei roto i tō hinengaro, i ētahi wā i roto i te huarahi e mamae ai ētahi atu, he mea whanoke, he mea kore tika rānei. Hei tauira, te whakakino ohorere i tētahi i tētahi huihuinga whānau.
• Te kore whakaute i ētahi atu: Kāore pea rātou e whakaute i te tūmataitinga o ētahi atu, ka pā atu pea ki a rātou me te kore e pai, ka ngana pea ki te whanonga i roto i te āhua e kore e tika mō te moepuku, ā, ka riri ohorere, ka pōrearea rānei.
• Ngā mahi me ngā whanonga wairangi: Kei roto i tēnei ko te whakapau moni koretake, tae atu pea ki te tahae i ngā toa hokohoko.

• Te kore aro: He rite pea tēnei ki te pouri, engari he rerekē.
• Te ngaronga o te hiahia ki tetahi mea: Te ngaronga o te hiahia ki ngā mea i pai ai koe ki mua (ngā mahi whakangahau, te noho tahi me ngā hoa).
• Te wehe atu i te hapori: Te karo i te noho tahi me ngā hoa me te whānau.
• Te hekenga o te tiaki i a koe anō: Te ngaronga o te hiahia ki te kaukau, ki te whakawhiti kākahu, me te noho mā.

• Te ngaronga o te aroha:Ka kiia hoki tēnei ko te "whakaiti i te kare ā-roto." Ka uaua te mārama ki ngā kare ā-roto o ētahi atu. Kāore rātou e whakaatu i te tautoko i roto i ngā pouri, i ngā harikoa rānei o ētahi atu tāngata pērā i mua.

• Ngā whanonga ātete: He rerekē ngā whanonga o te hunga whai mate nei i ētahi atu.
• Ngā nekehanga auau: Te mahi i ngā nekehanga iti auau, pērā i te papaki ringa, te takahi waewae, me te hikoi whakamuri, whakamuri.
• Ngā whanonga uaua, ngā whanonga kawa rānei: te mātakitaki i ngā kiriata ōrite tonu, te pānui i ngā pukapuka ōrite, te kohikohi i ngā momo taonga ōrite. Kei roto i tēnei ko te kohikohi taonga.
• Te Whakahoki: Te whakahoki i ngā oro, ngā kupu, me ngā rerenga kōrero ōrite anō me anō.

• Ngā huringa o te kai, ngā whanonga rānei e aro ana ki te waha: Tērā pea ka pāngia te hunga whai mate nei e te mate e kiia nei ko te "hyperorality," he hiahia rerekē ki ngā mea e pā ana ki te waha.
• Ngā panonitanga ki ngā tikanga kai: Ka nui rawa te kai a te tangata i ā rātou kai tino pai, inā koa ko ngā kai mātotoru, ngā mea reka, me te waipiro. Ka piki ake pea te taumaha.
• Ngā whanonga ā-waha akiaki: Te momi hikareti akiaki, te kai nui, me ētahi atu. Me te tūhuratanga ā-waha hoki. Ahakoa he mea noa tēnei mā ngā tamariki nohinohi i a rātou e tūhura ana i te ao, he mea onge mā ngā pakeke te mahi i tēnei.
• Pica: Ko te kai ā-taumaha tēnei i ngā mea kāore e taea te kai, kāore hoki e whai kiko (ngā moni, te paru, ngā kirikiri).

• Te ngaronga o te mahi whakahaere engari kei te mau tonu ētahi atu pūkenga: Ko te "mahi whakahaere" e pā ana ki te āheinga ki te whakamahere i te rā, ki te whakaoti rapanga, me te whakaoti i ngā mahi. Ahakoa he ngoikore ēnei pūkenga i roto i te hunga whai mate nei, kāore ētahi atu pūkenga, pērā i te mahara me te tukatuka tirohanga, e pāngia nuitia ana i ngā wāhanga tōmua. He āhuatanga matua tēnei e wehewehe ana i te mate wareware frontotemporal mai i te mate a Alzheimer.

Te Āpāhia Whakamua Tuatahi (PPA)

Ka taea hoki te pā mai o te PPA i te mate a Pick. Ka puta te ngaronga haere o ngā pūkenga reo, pērā i te kaha ki te kōrero me te mārama ki ngā kōrero a ētahi atu. Ahakoa e toru ngā momo matua o te PPA, e rua ngā momo matua ka hono atu ki te mate a Pick:

• PPA rerekē kore-rere (nfvPPA): I tēnei momo, he uaua ki te whakataurite i ngā kupu me te whakamahi i te wetereo tika. Ahakoa ka taea te mārama ki ngā kupu takitahi me ngā rerenga kōrero māmā, he uaua ki te mārama ki ngā rerenga kōrero uaua.
• PPA rerekētanga tikanga (svPPA):He uaua ki tēnei momo tangata te whiriwhiri i te kupu tika, te mārama rānei ki te tikanga o ngā kupu. Tērā pea ētahi mea kāore e mārama, ā, he uaua hoki ki te mārama ki ngā kōrero a ētahi atu. Tērā pea he raruraru ki te pānui me te tuhituhi, engari ka taea e rātou te whakahoki i ngā kōrero a ētahi atu i te ara kotahi.

Whakaarohia, ka rerekē whakarere tōu pāpā i tōna āhua o mua, ka riria te katoa, ka whakapau moni koretake, ka waiatatia rānei te waiata kotahi i te rā katoa. Mēnā rānei, ina kōrero koe ki a ia, ka pōhēhē ana kupu, ā, ka whakaaro ia kāore ia e mārama ki tāu e kōrero nei. Koinei ngā tauira o ngā mea kua kōrerohia e tātou.

He aha te take o tēnei mate? He mate hopuhopu?

Ko te Mate a Pick he momo mate wareware o mua o te roro (frontotemporal dementia - FTD) he tino take motuhake tōna. Kei roto i ō tātou roro me ngā pūtau io he pūmua motuhake e kiia nei ko te tau . Me whai āhua motuhake ēnei pūmua, ki te kore, kāore e mahi tika.

Ina kore e mahi tika ngā pūmua tau, ina whiriwhiri, ina kohikohi hoki i roto i ngā neuron, ka pakaru, ka whakangaromia aua pūtau. Ko ngā neuron kua pakaru ka kiia ko ngā "Pūtau Piki." Ka pupuhi, ka āhua poihau. Ko ngā puranga pūmua tau e whiriwhiri ana i roto i ngā pūtau ka kiia ko ngā "Tino Piki." Ka kitea ēnei i raro i te karu hiko. He mea nui, kāore ēnei pūtau Piki me ngā tinana Piki e kitea i roto i tētahi atu mate.

He mea ngaro tonu te take e kore ai e pai te mahi a ēnei pūmua tau. Ahakoa kua honoa e ngā kairangahau ētahi whakarerekētanga ira ki tēnei, i te nuinga o te wā ehara te mate i te mate tuku iho.

Kāore tēnei mate e horapa. Kāore e horapa mai i tētahi tangata ki tētahi atu. Ahakoa he tūponotanga ka tukuna iho i roto i ngā whakatipuranga, kāore i te nuinga o te wā.

Me pēhea te tautuhi i te mate a Pick? He aha ngā whakamātautau e mahia ana?

Ka taea e ngā tākuta te tautuhi i te mate wareware frontotemporal (FTD) mā roto i ngā whakamātautau tinana me te neurological, ngā whakamātautau tātaritanga me te whakaahua, ā, ka taea e ngā hua te whakatau mēnā he FTD whanonga, he momo PPA rānei.

Heoi, ko te huarahi anake hei mōhio mārika mēnā ko te mate a Pick te take o te mate wareware frontotemporal (FTD) o tētahi ko te rapu i ngā tinana Pick me ngā pūtau Pick i roto i te kiko o te roro. Ka kitea noa tēnei mā te tirotiro i tētahi tauira o te kiko roro i raro i te karuārai. Ko te tikanga o tēnei, ka taea anake te tautuhi i te mate a Pick i muri i te matenga o tētahi, i te tātaritanga tupapaku.

Ka taea te mahi i ēnei whakamātautau hei tautuhi i te FTD:

• Ngā whakamātautau toto: Ka rapua e ēnei ngā tohu matū e kiia nei ko ngā "tohu koiora" hei āwhina i te tautuhi i ētahi mate.
• Ngā whakamātautau wai cerebrospinal:Ka mahia tēnei mā te tango wai mai i te tuaiwi (spinal tap / lumbar wetewete).
• Matawai CT (tomography rorohiko - matawai CT)
• EEG (Electroencephalogram)
• Whakamātautau ira
• Matawai MRI (Whakaahua aukume - MRI)
• Matawai PET (Positron emission tomography - matawai PET)

He rongoā kei te wātea mō te mate a Pick? Ka taea te whakaora?

Engari, kāore he rongoā, he maimoatanga, he ārai rānei mō te mate a Pick. Ka taea e ngā tākuta te tohu rongoā hei āwhina i te whakahaere i ngā tohu pēnei i te pouri, te kore aro, me te whanonga pukuriri. Heoi, nā te mea he rerekē ēnei maimoatanga i ia tangata, i ia tangata, ko tō tākuta te tangata pai hei kōrero atu.

Ka taea te whakaiti i te mōrearea o te whanaketanga o tēnei mate?

Ka puta te mate a Pick i roto i ngā huarahi kāore e taea te matapae, kāore hoki i te mōhiotia. Nō reira, kāore he huarahi i tēnei wā hei ārai, hei whakaiti rānei i te tūponotanga o te whanaketanga.

He aha te momo heke mai ka taea e te tangata e pangia ana e tēnei mate te tumanako?

I roto i ngā momo FTD katoa, tae atu ki te Mate a Pick, ka heke haere te roro. I a ia e pērā ana, ka ngaro te kaha o ngā wāhanga o te roro e pāngia ana ki te mahi. I roto i te Mate a Pick, ka pā tēnei ki ngā wāhanga o te roro e whakahaere ana i ngā whanonga, ki ngā wāhanga rānei o te roro e whakarite ana i te kōrero me te kaha ki te mārama ki ngā kōrero a ētahi atu.

Tērā pea ka ngaro i a koe te māramatanga ki tō āhua. Arā, tērā pea ka ngaro i a koe te kaha ki te mārama ki ngā tohu me ngā mea e pā ana ki a koe nā tēnei mate.

Ka āta ngaro haere te kaha o te hunga e pāngia ana e te mate wareware frontotemporal (FTD) ki te noho motuhake. I te whanaketanga haere o te mate, me tiaki pea rātou e te hunga e arohaina ana, e ngā tohunga ngaio rānei mō ngā haora 24. Tērā pea ka hiahiatia he tiaki mō te wā roa.

Tērā pea ka uaua te horomi (dysphagia) ki te hunga whai FTD, ā, ka uaua pea te kai, te inu, me te kōrero. Ka piki ake te tūponotanga o te whakawhanake i ngā mate pēnei i te niumōnia, te ngoikore rānei o te manawa.

He mate mō te wā roa ngā momo FTD katoa, tae atu ki te mate a Pick. He kino te mate, ka whakangaro haere i ngā wāhanga nui o te roro. Ka kino pea ngā raruraru, ā, ka mate pea. Nā te mea he rerekē te roanga o te oranga o te tangata, he uaua ki te kī tika me pēhea te pānga o te mate ki a koe me te roa o tōna roa. Ka taea e tō tākuta (te tākuta rānei e rongoā ana i tō hoa aroha) te kōrero atu ki a koe mō tēnei.

Me pēhea e taea ai e koe te whakamahi i tōu hiahia ki te kore e taea e koe te whakatau i a koe anō?

Mena ka kitea koe he mate wareware frontotemporal (FTD) i ngā wāhanga tōmua, he mea nui kia kōrero koe ki tō tākuta, ki tō whānau, ki ō whanaunga rānei, me te hunga e whakawhirinaki ana koe ki a rātou hei whakatau i ngā whakataunga nui māu i te wā e taea ai. He uaua pea tēnei kōrero, engari mā te kōrero wawe mō ēnei mea, kaua i muri mai, ka āwhina i ō whanaunga kia mōhio ki ō hiahia mena kāore e taea e koe te kōrero mō ō mahi, te whakatau rānei i ngā whakataunga.

Haunga taua kōrero, he mea nui anō hoki kia tuhia ō hiahia me ō whakatau. Mēnā kāore e taea e koe te tiaki i a koe anō, mēnā rānei kāore e taea e koe te whakatau mō tō tiaki, mō tō oranga rānei, whakaarohia te whakarite i ngā tuhinga ture. Ka taea e koe te tiki āwhina mai i tētahi rōia hei whakarite i ēnei tuhinga, engari ka taea hoki e koe te whakarite i ētahi o aua tuhinga e koe anō (i runga i te ture o tō rohe, me whakaae pea koe ki tētahi notari, ki tētahi atu āpiha rānei).

Me aha koe mēnā ka kitea ēnei tohu e tētahi e tata ana ki a koe?

He maha ngā wā kāore i te mārama te hunga whai FTD ki ō rātou tohumate, ki tō rātou āhua rānei. Nā te mea kāore rātou e kite he raruraru tō rātou, kāore rātou e whakapono me rapu āwhina hauora rātou. Ka taea e tēnei kore māramatanga te whakararuraru me te whakamataku mō te tangata whai tohumate me te hunga e tata ana ki a rātou.

Mena kei te whakaatu tetahi e tata ana ki a koe i ngā tohu o te FTD, i tētahi atu āhuatanga rite rānei, ka taea e koe te āwhina mā ēnei huarahi:

• Pātai atu me pēhea e taea ai e koe te āwhina: Ahakoa kei te whakaatuhia ngā tohu e te hunga whai FTD, kāore pea rātou e mōhio he tohu ēnei o tētahi raruraru roro nui. Mā te whakarongo ki a rātou, mā te tuku i tō tautoko, ka taea e rātou te hono atu ki te hunga e whakawhirinaki ana rātou, ā, ka taea hoki e rātou te whakatenatena i a rātou kia kite i tētahi tākuta.
• Whakatenatenahia rātou kia rapu āwhina: Ahakoa he mate kāore he rongoā, he rongoā rānei mō te mate wareware o te pito o mua o te tinana (FTD), he huarahi hei rongoā me te whakahaere i ētahi o ngā tohu. Ka taea e ēnei mahi te whakapai ake i te kounga o te oranga mō te tangata whai mate pēnei. Mā te toro atu ki te tākuta ka āwhina i te tangata whai FTD kia kitea he mate. Ka taea e te tiaki motuhake te whakaora i ētahi o ngā tohu kāore e pai mō te hunga whai mate pēnei me ō rātou whānau.
• Kia marino, kaua e tango i ngā mea whaiaro: Ko te hunga whai FTD kāore e taea te whakahaere i ā rātou kōrero, i ā rātou mahi rānei. Tērā pea te āhua nei kei te ngana rātou ki te whakapataritari, ki te whakama, ki te whara rānei i ētahi atu, engari he raruraru hauora tonu.
• Kaua e wehi ki te tono āwhina: He tino uaua te tiaki i tētahi tangata whai FTD, ina koa ka kino haere te āhua i roto i te wā. Kaua e wehi ki te tono āwhina, rauemi rānei. He maha ngā tari tūmatanui me ngā tari tūmataiti e whakarato ana i ngā pūnaha tautoko me ngā ratonga, pērā i te tiaki tamariki mō ngā pakeke, te tiaki wā okiokinga, me te tiaki nēhi kāinga.
• Ko te tiaki mō te wā roa pea te kōwhiringa pai rawa atu: Ki te tini, ko te tiaki i tētahi e arohaina ana e te FTD ka rite ki te mahi wā-katoa. Kāore e taea e te katoa te whakapau i taua nui o te wā, te kaha rānei ki te tiaki i tētahi e arohaina ana. Nō reira, he mea nui kia whakaarohia mēnā me tiaki tō hoa aroha i roto i tētahi whare tiaki mō te wā roa me ngā whare tiaki kaumātua mohio. Ahakoa he whakatau uaua tēnei ki te whakatau, ko taua tiaki pea te huarahi pai rawa atu hei whakarite kei te haumaru, kei te whakamarie, ā, kei reira ngā kaitiaki whai tohu, kua whakangungua.

Hei whakamutunga, he karere hei kawe ki te kāinga

Ko te Mate a Pick he āhuatanga e kiia nei ko te mate wareware o mua o te wā (frontotemporal dementia - FTD), he momo mate wareware e kino haere ana te roro i te wā taitamariki ake i ērā atu mate roro e pā ana ki te kaumātuatanga. Ka pāngia hoki te roro e te FTD e āwhina ana i te tangata ki te mārama ki te tika me te kore tika o ā rātou whanonga. Ka taea e tēnei te whakapouri, te mārama kore, me ētahi atu whakararuraru nui ki te oranga o te hunga katoa e whai wāhi ana. Ahakoa ka taea te rongoā i ētahi tohu, kāore he rongoā hei whakakore i te mate tonu, ā, he maha ngā wā ka hiahiatia he tiaki tonu, 24-hāora te hunga e pāngia ana e te mate.

Mena kei te pāngia koe, tetahi rānei e tata ana ki a koe, ko te mea pai ko te rapu tohutohu hauora. Kia maumahara, ehara i te mea ko koe anake, ā, he wāhi anō hei rapu āwhina.

Te Mate a Pick, Te Mate wareware o te taha mua o te wā, Te Mate wareware, Te Mate roro, Te Mate pirau o te roro, Te Pūmua Tau, Ngā Huringa Whanoke