Amyotrophic Lateral Sclerosis

Ko te amyotrophic lateral sclerosis (a-my-o-TROE-fik LAT-ur-ul skluh-ROE-sis), e kiia ana ko te ALS, he mate pūnaha io e pā ana ki ngā pūtau io o te roro me te tuaiwi. Ka pā te ALS ki te ngaro o te mana o ngā uaua. Ka kaha ake te mate i te wā. I te nuinga o te wā, e kiia ana te ALS ko te mate a Lou Gehrig, i muri i te kaitākaro pēwhiti i kitea te mate. E kore ano kia mohiotia te take pono o te mate. He tokoiti noa ngā keehi e tukuna ana. I te nuinga o te wā, ka tīmata te ALS me te wiri o ngā uaua me te ngoikore o te ringa, o te waewae rānei, te raruraru ki te horomi kai, te kōrero whakapohehe rānei. I te mutunga, ka pā te ALS ki te mana o ngā uaua e hiahiatia ana mō te neke, te kōrero, te kai, me te manawa. Kāhore he rongoā mō tēnei mate mate.

Ko ngā tohu o te ALS e rerekē ana i te tangata ki te tangata. Ko ngā tohu e whakawhirinaki ana ki tehea ngā pūtau io e pā ana. Ko te tikanga ka tīmata te ALS me te ngoikore o te uaua e horapa ana ka kino ake i te wā. Ka uru pea ngā tohu ki: Te raruraru ki te hikoi, ki te mahi rātou mahi o ia rā. Te tūtohu me te hinga. Te ngoikore o ngā waewae, o ngā waewae, o ngā rekereke. Te ngoikore o te ringa, te koretake rānei. Te kōrero whakapohehe, te raruraru rānei ki te horomi. Te ngoikore e hono ana ki te mamae o te uaua me te wiri i ngā ringa, ngā pakihiwi me te arero. Te tangi, te kata, te ngākau rānei i te wā e kore e tika. Ngā huringa whakaaro, ngā huringa whāinga rānei. Ko te tikanga ka tīmata te ALS i ngā ringa, ngā waewae, ngā ringa, ngā waewae rānei. Katahi ka horapa ki ētahi atu wāhanga o te tinana. Ka ngoikore haere ngā uaua i te mate haere o ngā pūtau io. Ka pā tenei ki te ngau, te horomi, te kōrero me te manawa. Kāore he mamae i te nuinga o ngā wā i ngā wā tīmata o te ALS. Kāore hoki te mamae e noa i ngā wā o muri. Kāore te ALS e pā kino ki te mana o te putea. Kāore hoki e pā kino ki ngā pūāhua, tae atu ki te kaha ki te reka, te hongi, te pā me te whakarongo.

Kaore he uauatanga

Ko te ALS te mate e pā ana ki ngā pūtau io e whakahaere ana i ngā nekehanga uaua ngākau, pēnei i te hikoi me te kōrero. Ko ēnei pūtau io te ingoa ko ngā pūtau motuka. E rua ngā rōpū o ngā pūtau motuka. Ko te rōpū tuatahi e tō te roro ki te tuaiwi o muri ki ngā uaua puta noa i te tinana. Ka kiia rātou ko ngā pūtau motuka o runga. Ko te rōpū tuarua e tō te tuaiwi o muri ki ngā uaua puta noa i te tinana. Ka kiia rātou ko ngā pūtau motuka o raro. Ko te ALS te take i ngā rōpū e rua o ngā pūtau motuka kia whakaiti haere, ka mate. Ka pakaru ngā pūtau motuka, ka mutu te tuku karere ki ngā uaua. Ko te hua, ka kore e mahi ngā uaua. Mō te 10% o te hunga e pangia ana e te ALS, ka taea te kimi i te take ira. Mō te toenga, kāore i te mōhiotia te take. Kei te haere tonu ngā kairangahau i te ako i ngā take pea o te ALS. Ko te nuinga o ngā whakaaro kei te pokapū i te hononga uaua i waenganui i ngā ira me ngā take i roto i te taiao.

Ko ngā take morearea kua whakatūria mō te ALS ko ēnei: Ngā ira tuku. Mō te 10% pea o te hunga he ALS, i tukuna mai tētahi ira morearea i tētahi mema o te whānau. Ko te ingoa o tēnei ko te ALS tuku iwi. I te nuinga o te hunga he ALS tuku iwi, he 50% te tūmanako o ā rātou tamariki ki te whiwhi i te ira. Te tau. Ka piki ake te morearea me te pakeke tae noa ki te 75 tau. Ko te ALS te mea tino noa i waenga i ngā tau 60 me ngā tau 80 o waenganui. Te ira tangata. I mua i te 65 tau, he tokomaha ake ngā tāne i ngā wāhine e whānau ana i te ALS. Ka ngaro tēnei rerekētanga ira tangata i muri i te 70 tau. Ngā take taiao, pēnei i ēnei e whai ake nei, kua honoa ki te piki ake o te morearea o te ALS. Te kai paipa. E tautoko ana ngā mōhiotanga kei te kai paipa tētahi take morearea taiao mō te ALS. Ka rite ki te mea kei te nui ake te morearea o ngā wāhine e kai paipa ana, inā koa i muri i te whakamutunga o te wā. Te whakaū o te pokanoa taiao. E whakaatu ana etahi mōhiotanga kei te hono pea te whakaū ki te arahi, ki ētahi atu rākau rānei i te wāhi mahi, i te kāinga rānei, ki te ALS. Kua nui ngā rangahau i mahia, engari kāore tētahi take, kāore rānei te matū i honoa tonu ki te ALS. Te mahi hōia. E whakaatu ana ngā rangahau kei te nui ake te morearea o te hunga kua mahi hōia ki te ALS. Kāore i te mārama he aha te mea o te mahi hōia ka taea te whakaoho i te ALS. Kei roto pea te whakaū ki ētahi konganuku, ki ētahi matū rānei, ngā whara nanakia, ngā mate huaketo, te kaha rānei.

I te whakawhānui o te mate, ka puta he raruraru mai i te ALS, pēnei i: I te roanga o te wā, ka pā te ngoikore o ngā uaua e whakamahia ana mō te manawa ki te ALS. Pea ka hiahia ngā tāngata e pangia ana e te ALS ki tētahi taputapu, pēnei i tētahi mīhini manawa kākahu, hei āwhina i a rātou ki te manawa i te pō. He rite te taputapu ki te mea ka whakamahia e tētahi e pangia ana e te apnea moe. Ka tautoko tēnei momo taputapu i te manawa o te tangata mā te kākahu e mau ana ki runga i te ihu, te waha, te rua rānei. Ko ētahi o ngā tāngata e pangia ana e te ALS whānui ka whiriwhiri kia whai tracheostomy. He rua tēnei i hangaia mā te pokanga i mua o te kaki e ārahi ana ki te ngākau. Pea ka pai ake te mahi a te mīhini manawa ki runga i te tracheostomy i te kākahu. Ko te take tino nui o te mate mō ngā tāngata e pangia ana e te ALS ko te kore manawa. Kotahi te haurua o ngā tāngata e pangia ana e te ALS ka mate i roto i ngā marama 14 ki te 18 i muri i te whakatau. Heoi, ko ētahi o ngā tāngata e pangia ana e te ALS ka ora i ngā tau 10 neke atu rānei. Ko te nuinga o ngā tāngata e pangia ana e te ALS ka whanake i te ngoikore o ngā uaua e whakamahia ana hei hanga kōrero. Ka tīmata tēnei i te nuinga o te wā mā te kōrero ngāwari me te kōrero wātea. Katahi ka kaha ake te kōrero mārama. Ka taea te whakawhānui ki te taumata kaore e taea e ētahi te mārama ki te kōrero a te tangata. Ka whakamahia ētahi atu momo whakawhitiwhiti kōrero me te hangarau hei whakawhitiwhiti kōrero. Ka taea e ngā tāngata e pangia ana e te ALS te whanake i te ngoikore o ngā uaua e pā ana ki te horomi. Ka taea tēnei te arahi ki te kore kai me te kore wai. Kei te nui ake hoki te tūpono o te whiwhi kai, wai, wai rānei ki roto i ngā ngāwari, ka taea te whakaeke i te mumura o ngā ngāwari. Ka taea e te tūpū kai te whakaiti i ēnei tūponotanga me te whakarite i te makuku me te kai tika. Ko ētahi o ngā tāngata e pangia ana e te ALS he raruraru kei a rātou mō te reo me te whakatau. Ko ētahi ka whakatauhia i te mutunga ki tētahi momo mate hinengaro e kiia nei ko te mate hinengaro frontotemporal.

Kaore he uauatanga

Te mate pūngāwerewere taha, e mohiotia ana ko te ALS, he uaua pea te whakatau i te tīmatanga na te mea he rite tonu ōna tohu ki ētahi atu mate. Ko ngā whakamātautau hei whakakore i ētahi atu āhuatanga, hei āwhina rānei i te whakatau i te ALS, ka uru pea ki: Te whakamātautau hiko-uaua (EMG). Ka werohia he ngira i roto i te kiri ki ngā uaua maha. Ka tuhia e te whakamātautau te mahi hiko o ngā uaua ina whakawhāititia, ā, ina ata noho. Ka taea e tēnei te whakatau mēnā he raruraru kei ngā uaua, kei ngā pūnaha rānei. Te rangahau arahi-pūnaha. Ka ine tenei rangahau te kaha o ō pūnaha ki te tuku i ngā whakaohooho ki ngā uaua i ngā wāhi rerekē o te tinana. Ka taea e tēnei whakamātautau te whakatau mēnā kei a koe te kino o ngā pūnaha. He tata tonu te mahi tahi o ngā whakamātautau EMG me ngā rangahau arahi-pūnaha. MRI. Ma te whakamahi i ngā ngaru reo me te mara hiko kaha, ka whakaputa te MRI i ngā whakaahua taipitopito o te roro me te iwi o te tuara. Ka taea e te MRI te whakakite i ngā mate pukupuku o te iwi o te tuara, ngā kōpae herniated i te kaki, i ētahi atu āhuatanga rānei e āhei ana te take o ō tohu. Ka taea pea e ngā kamera tino tika te kite i ngā huringa ALS anō. Ngā whakamātautau toto me te mimi. Ko te tātari i ngā tauira o tō toto me tō mimi i te taiwhanga ka āhei pea te whakakore i ētahi atu take pea o ō tohu. Ko ngā taumata mārama neurofilament serum, e inehia ana i ngā tauira toto, he teitei te nuinga i ngā tāngata e pangia ana e te ALS. Ka taea e te whakamātautau te āwhina i te whakatau i te tīmatanga o te mate. Te taonga tuara, e mohiotia ana ko te wero lumbar. Ka uru tenei ki te tango i te tauira o te wai o te tuara mō te whakamātautau taiwhanga. Ka tangohia te wai o te tuara mā te ngira iti e werohia ana i waenganui i ngā wheua e rua i raro o te tuara. He rite tonu te ahua o te wai o te tuara i ngā tāngata e pangia ana e te ALS, engari ka kitea pea tētahi atu take o ngā tohu. Te tātaritanga uaua. Mēnā e whakapono ana tō kaiwhakarato hauora kei a koe te mate uaua, ehara i te ALS, ka āhei pea koe ki te tātaritanga uaua. I a koe e noho ana i raro i te ngau rohe, ka tangohia he kōwae iti o te uaua ka tukuna ki te taiwhanga mō te tātari. Te tātaritanga pūnaha. Mēnā e whakapono ana tō kaiwhakarato hauora kei a koe te mate pūnaha, ehara i te ALS, ka āhei pea koe ki te tātaritanga pūnaha. I a koe e noho ana i raro i te ngau rohe, ka tangohia he kōwae iti o te pūnaha ka tukuna ki te taiwhanga mō te tātari. Te tiaki i te Kura Hauora o Mayo Ka taea e ta mātou rōpū manaaki o ngā tohunga o te Kura Hauora o Mayo te āwhina i a koe ki ō kaupapa hauora e pā ana ki te mate pūngāwerewere taha (ALS) Tīmata konei Ētahi atu mōhiohio Te tiaki mate pūngāwerewere taha (ALS) i te Kura Hauora o Mayo Te whakamātautau hiko-uaua (EMG) MRI Te whakamātautau mimi Whakaatu atu ētahi atu mōhiohio e pā ana

Kaore e taea e ngā rongoā te whakahoki i te āwangawanga o te ALS, engari ka taea e rātou te whakaheke i te whānuitanga o ngā tohu. Ka āwhina hoki rātou ki te aukati i ngā raruraru me te whakamarie i a koe me te whai mana motuhake. Akene ka hiahia koe ki tētahi rōpū o ngā kaiwhakarato hauora me ngā tākuta kua whakangungua ki ngā wāhi maha hei whakarato i tō tiaki. Ka mahi tahi te rōpū ki te whakaroa i tō ora me te whakapai ake i tō kounga ora. Ka mahi tahi tō rōpū ki te tīpako i ngā rongoā tika mōu. Kei a koe te mana ki te whiriwhiri, ki te whakakahore rānei i tetahi o ngā rongoā i whakaarohia. Rongoā Kua whakaaetia e te Food and Drug Administration ētahi rongoā e rua mō te whakaora i te ALS: Riluzole (Rilutek, Exservan, Tiglutik). Mena ka inuhia, ka taea e tēnei rongoā te whakapiki ake i te roa o te ora e pōtitia ana e te 25%. Ka taea e ia te whakaeke i ngā pānga penei i te māuiui, ngā āhuatanga o te pūnaha kai me ngā raruraru ate. Ka tirotirohia e tō kaiwhakarato hauora te mahi o tō ate mā te tango i te toto i ia wā i te wā e inu ana koe i te rongoā. Edaravone (Radicava). Ka taea e tēnei rongoā te whakaiti i te tere o te hekenga i te mahi o ia rā. Ka hoatuhia ma te uaua i roto i tō ringa, i te waha rānei hei wai. Kāore ano kia mōhiotia te pānga ki te roa o te ora. Ko ngā pānga ka taea te whākōkī, te mamae o te mahunga me te raruraru o te hikoi. Ka hoatuhia tēnei rongoā i ia rā mō ngā wiki e rua i ia marama. Akene ka tukuna e tō kaiwhakarato hauora ngā rongoā mō te whakaora i ētahi atu tohu, tae atu ki: Ngā kopikopiko me ngā wiri o ngā uaua. Te kōpū kōpū. Te ngenge. Te wāhine nui o te waipū me te whewhe. Te mamae. Te pouri. Ngā raruraru moe. Ngā pakū kaore e taea te whakahaere o te kata, o te tangi rānei. Te hiahia nui ki te mimi. Te pupuhi o ngā waewae. Ngā rongoā Ina pā te ALS ki tō kaha ki te manawa, ki te kōrero, ki te neke, ka taea e ngā rongoā me ētahi atu momo tautoko te āwhina. Te tiaki manawa. Ko te nuinga o te hunga e pangia ana e te ALS ka nui ake te raruraru o te manawa i te wā e ngoikore haere ana ngā uaua. Akene ka whakamātautauhia e tō kaiwhakarato hauora tō manawa i ia wā, ka whakarato i ngā taputapu e mohiotia ana ko te manawa mīhini hei āwhina i tō manawa i te pō. Akene ka whiriwhiri koe ki te whakamahi i tētahi pūmanawa me te kanohi ka taea te whakamahi me te tango ngāwari. E mohiotia ana tenei ko te manawa kore-whakauru. Ko ētahi atu ka whai pokanga ka hangaia he rua i mua o te kaki e arahina ana ki tō ngākau. E kiia ana tenei ko te tracheostomy. Ka hono te pūtau i whakauruhia ki te rua ki tētahi mīhini manawa hei āwhina i a rātou ki te manawa. I etahi wā, ko ngā tāngata e pangia ana e te ALS e whai tracheostomy ana ka whai momo pokanga e kiia nei ko te laryngectomy. Ka aukati tēnei pokanga i te kai ki te tomo ki ngā ngākau. Te rongoā tinana. Ka taea e te kaiwhakaora tinana te whakahaere i te mamae, te hikoi, te nekehanga, te whakakaupapa me ngā hiahia taputapu e āwhina ana i a koe ki te noho motuhake. Ka taea e te mahi i ngā whakakori iti te āwhina ki te pupuri i tō hauora ngākau, te kaha o ngā uaua me te whānuitanga o te nekehanga kia roa rawa. Ka taea hoki e te whakakori auau te whakapai ake i tō tūmanako. Ka taea e te whakatete auau te āwhina ki te aukati i te mamae me te āwhina i ō uaua ki te mahi pai. Ka taea hoki e te kaiwhakaora tinana te āwhina i a koe ki te wikitoria i te ngoikore mā te whakamahi i te whakakaupapa, te kaihaere, te kāreti rānei. Akene ka whakaaro te kaiwhakaora i ngā taputapu penei i ngā rāmi e ngāwari ai te haereere mōu. Te rongoā mahi. Ka taea e te kaiwhakaora mahi te āwhina i a koe ki te kimi huarahi hei noho motuhake ahakoa te ngoikore o ngā ringa me ngā ringa. Ka taea e ngā taputapu whakarite te āwhina i a koe ki te mahi i ngā mahi penei i te kakahu, te whakapaipai, te kai me te kaukau. Ka taea hoki e te kaiwhakaora mahi te āwhina i a koe ki te whakarereke i tō kāinga kia taea ai te uru atu ki te raruraru koe ki te haere haere haumaru. Te rongoā kōrero. Ka taea e te kaiwhakaora kōrero te whakaako i a koe i ngā tikanga whakarite hei whakapai ake i tō kōrero. Ka taea hoki e ngā kaiwhakaora kōrero te āwhina i a koe ki te kimi i ētahi atu huarahi hei whakawhitiwhiti kōrero. Ka taea e ēnei te whakamahi i tētahi taupānga waea atamai, te papa reta, te pene me te pepa rānei. Pātai atu ki tō kaiwhakaora mō te āhei o te tuhi i tō reo ake hei whakamahi mā tētahi tono kōrero-ki-tuhi. Te tautoko kai. Ka mahi tahi tonu tō rōpū me koe me ō whānau ki te whakarite kei te kai koe i ngā kai e ngāwari ake te horomia me te whakatutuki i ō hiahia kai. Akene ka whiriwhiri koe ki te whakauru i tētahi pūtau kai ina tino uaua te horomia. Te tautoko hinengaro me te whānau. Akene ka whai tohunga whānau tō rōpū hei āwhina i ngā take putea, te inihua, me te whiwhi taputapu me te utu mō ngā taputapu e hiahia ana koe. Ka taea e ngā tohunga hinengaro, ngā tohunga whānau me ētahi atu te whakarato tautoko hinengaro mōu me tō whānau. Ngā rongoā ka puta mai i te heke mai I runga i te mārama o nāianei o te ALS, kei te mahi ngā kairangahau i ngā rangahau hauora mō ngā rongoā me ngā rongoā whakamārama. Ētahi atu mōhiohio Te tiaki amyotrophic lateral sclerosis (ALS) i te Mayo Clinic Te kai whare whare Te ALS Stem Cell Trial Tono kia whakaritea he hui

Ko te ako kei a koe te ALS he mea whakamataku. Ka taea e nga tohutohu e whai ake nei te awhina i a koe me to whānau ki te whakahaere: Tangohia te wā ki te pouri. He uaua te rongonga ki te korero kei a koe te mate ka mate ka whakaiti i to kaha ki te neke haere me to mana motuhake. Ka pa pea ki a koe me to whānau te wa o te pouri me te pouri i muri i te whakatau. Kia tumanako. Ka taea e to kapa te awhina ia koe ki te aro ki o kaha me te ora hauora. E roa atu ana te ora o etahi tangata e pangia ana e te ALS i nga tau 3 ki te 5 e hono ana ki tenei mate. E toru tekau tau ranei neke atu. Ka taea e te pupuri i te tirohanga pai te whakapai ake i te kounga o te ora mo nga tangata e pangia ana e te ALS. Whakaarohia atu i nga huringa tinana. He maha nga tangata e pangia ana e te ALS e ora ana i te oranga whai hua ahakoa nga herenga tinana. Whakamātauria te whakaaro ki te ALS hei wahi kotahi noa iho o to oranga, ehara i to tuakiri katoa. Hono atu ki tetahi roopu tautoko. Ka kite pea koe i te whakamarie i roto i tetahi roopu tautoko me etahi atu e pangia ana e te ALS. Ko te hunga aroha e awhina ana ki to tiaki ka whai hua pea mai i tetahi roopu tautoko mo etahi atu kaiwhakahaere ALS. Rapua nga roopu tautoko kei to rohe ma te korero ki to taakuta, ma te whakapiri atu ranei ki te ALS Association. Whakatau inaianei mo to tiaki hauora a muri ake nei. Ma te whakamahere mo te heke mai ka taea e koe te whakahaere i nga whakatau mo to oranga me to tiaki. Ka iti ake hoki te kawenga mo o hoa aroha. Ma te awhina o to kaiwhakarato hauora, tetahi kaihoko hospice, tetahi kaimahi hapori ranei, ka taea e koe te whakatau mena kei te hiahia koe ki etahi tikanga whakawhāiti ora. Ka taea hoki e koe te whakatau kei hea koe e hiahia ana ki te noho i o ra o te mutunga. Ka taea e koe te whakaaro ki nga whiringa tiaki hospice. Ka taea e te whakamahere mo te heke mai te awhina ia koe me o hoa aroha ki te ata noho. Te whakaaro ki te uru atu ki te rangahau ALS. Kei te mahi te rangahau ALS ki te rapu i te rongoa mo te ALS. Whakaarohia te uru atu ki tetahi whakamatautau hauora, te whakarato i nga tauira mo te rangahau me te hono atu ki te National ALS Registry. Kei te tuwhera te rehitatanga ki nga tangata katoa e pangia ana e te ALS. He maha nga whare wananga e kohikohi ana i nga tauira mo te rangahau kia pai ake te mohio ki te mate.