Nyaya Inonyanya Kukosha: Kubatanidza rubatsiro rwevanorwara nekurwadziwa kwepfungwa (palliative care) murubatsiro rwenguva dzose rwevarwere vane matambudziko ekufamba-famba

Iye ndiye maneja weHealth Clinical and Community Services kuFight Parkinson's muMelbourne, Australia. VaMcConvey, tinotenda zvikuru nekubatana nesu nhasi. Mungatiudzawo here nhoroondo yenyu uye kuti makasvika sei muchirongwa chekurapa varwere vane matambudziko ekufamba, [00:01:00] pamwe nebasa renyu kuFight Parkinson's?

VaVictor McConvey: Ndatenda zvikuru Sarah, nekundipa mukana wekutora chikamu munhevedzano yemapodcasts. Zvishoma nezvangu, ndiri mukoti nekuda kwenhoroondo yangu uye ndanga ndiri mukoti kwemakore makumi matatu nemashanu apfuura. Pamwe ndakapedza nguva yakawanda yebasa rangu ndichishanda mu progressive neurology, zvese muALS pakutanga uye ndakazochinja kuita basa remukoti weParkinson's disease pandaishanda kuUK.

Parizvino ndinoshanda kuFight Parkinson's semaneja wehutano nemabasa ekurapa munyika yese, uye ndine chido chikuru chekutarisira varwere vane Parkinson's, ndichiziva kuti, zvechokwadi, kuti kutarisira vanhu vane Parkinson's nezvirwere zvese zvetsinga zvinofambira mberi. Kazhinji hazvitarisirwi zvakanaka muhurongwa hwedu hwehutano.

Uye ndizvo zvandave ndichida chaizvo kugadzirisa.

Dr. Sarah Camargos: Munoona sei kutarisirwa kwevarwere vane matambudziko ekufamba kwemazuva ano? Tiri kufambira mberi here tichifunga kuti makomiti ezvehutano akati wandei nemasangano ava kuona musiyano wakakosha munharaunda iyi [00:02:00]?

VaVictor McConvey: Tarisai, ndinofunga kuti mubvunzo uyu wakanaka kwazvo uye zvinokurudzira, ndinofunga, tiri kufambira mberi nekumhanya kwakasiyana munzvimbo dzakasiyana dzepasi rose, asi zvechokwadi tiri kufambira mberi. Iye zvino tava kubvuma kuti kutarisirwa kwevarwere vane zvirwere zvetsinga zvinofambira mberi seParkinson's kunofanirwa kuva nazvo.

Takaona nzira dzakanaka dzekurapa varwere vanorwara nepfungwa dzakadzikama dzichibuda. Uye zvakaonekwa muchidimbu cheWorld Health Organization pamusoro pechirwere cheParkinson, kuti mabasa ekurapa varwere vanorwara nepfungwa dzakadzikama haana kukwana uye kuti tinofanira kugadzira mhinduro iri nani kune nzira dzakaoma dzekurapa varwere vanorwara nepfungwa dzakadzikama.

Takaona mamwe mamodheru akanaka achibuda uye tichifunga kuti chirwere cheParkinson chirwere chatinongogona kudzora zviratidzo chete, ndicho chinhu chikuru chekurapa kwevarwere. Saka zvechokwadi kutarisirwa kwatinoita kubva pakuongororwa kwechirwere kunobatsira varwere. Tinofanira kushinga kutaura kuti, izvi ndizvo zvatinofanira kuita.

Kutarisirwa kwakabatana kunoitwa nemurwere, [00:03:00] kunotarisa murwere, kwakatarisana nekutarisira zviratidzo zvakanaka, inova ndiyo musimboti wekurapa kunorwadza, uye ndizvo zvatinoedza kuita chero zvakadaro mumatambudziko ekufamba. 

Dr. Sarah Camargos: Kare, chirongwa chenyu chakaratidza kuburikidza neongororo yepasi rose zvipingamupinyi zvakawanda uye maonero pamusoro pekuchengetedzwa kwevarwere vane matambudziko ekufamba. Imwe nyaya yakakosha yaive kushaya chivimbo pakati pevanachiremba mukutumira varwere vavo kukuchengetedzwa kwevarwere vane matambudziko ekufamba. Tiri sei nhasi?

VaVictor McConvey: Ndinofunga kuti munzvimbo dzakasiyana dzepasi rose tine ruzivo rwakasiyana mukurapa kwevanorwara nepfungwa uye mukana wekuwana rubatsiro rwevanorwara nepfungwa. Ongororo yekuona vanhu nemaitiro avo pamwe nenyaya yakagadzirwa neboka revashandi yakaratidza zvimwe zvipingamupinyi zvinosiyana pasi rose, asi zvakare yakaratidza kuti pakati pevanhu vemunharaunda yedu yezveuropi paive nechido, kunyanya pakati pevanachiremba vedu vechidiki vezveuropi.

Kuti udzidze zvakawanda nezvekuchengetedzwa kwevarwere, nzwisisa [00:04:00] kuti hunyanzvi hwekurapa varwere hwakaita sei, kuitira kuti vagone kutevera varwere vavo sezvo chirwere chavo chichienderera mberi, pane kusvika padanho rekuti, "hapana zvimwe zvandinogona kukuitira", izvo hazvichaonekwi zvakanyanya mu neurology, izvo zvinokurudzira kuona. Takaona mamwe mamodheru akanaka ekuchengetedzwa kwevanhu vane dambudziko rekurwadziwa, akadai sebasa rakatangwa naJanice Masaki muAlberta iro rinoshamisa rekuchengetedzwa kwevanhu vane dambudziko rekurwadziwa. Izvi zvinopa ruzivo rwakakwana, zvine chekuita nedzidzo dzakasiyana-siyana uye zvinotsigira munhu nenzira kwayo muhupenyu. Tinoona zvimwe zvipingamupinyi mune dzimwe nyika kuti vawane izvozvo. Uko kurapwa kwevanhu vane dambudziko rekurwadziwa kwemwoyo kungave kusina zviwanikwa zvakawanda uye kazhinji kunongogumira kuvanhu vane chirwere chekenza.

Asi ndinoonawo munyika dzakawanda dzakadai seGreat Britain nemuAustralia neSouth Africa, izvozvo zviri kuchinja uye kune kugamuchirwa kukuru kwevanhu vane zvirwere zvetsinga mubazi redu rekurapa varwere vanorwara uye vanamukoti nevamwe vanachiremba vanoda kuziva zvakawanda nezve [00:05:00] kuti vangagadzirisa sei matambudziko aya akaomarara ehupenyu.

Dr. Sarah Camargos: Ehe, uye kutarisirwa kwevanorwara nepfungwa hakusi kuguma kwehupenyu chete uye ziva nezvazvo, sezvamakataura. Kushandira pamwe pakati penyanzvi dzakasiyana-siyana kwakakosha zvechokwadi. Ndivanaani vane ruzivo rwehutano vanobatanidzwa mukuchengetedzwa kwevanorwara nepfungwa kune vanhu vane matambudziko ekufamba?

VaVictor McConvey: Ndinofunga kuti tinogona kuona kuti kazhinji kune nyanzvi dzehutano, dzingangotarisa vanachiremba vetsinga, vanachiremba vekurapa vanonyaradza, vanamukoti, vanachiremba vemuviri, vanachiremba vemazuva ose, vanachiremba vekutaura nevemutauro. Asi timu iyoyo inofanira kuwedzera murwere. Saka tinofanira kusanganisira basa rekubatsira vanhu, zvepfungwa, kurapa mimhanzi, rubatsiro rwemweya, kungave kuri rubatsiro rwevafundisi kuburikidza nemunhu ane kutenda kana chero chinhu chinodiwa nemunhu iyeye kuti tive nechokwadi chekuti sezvatinosvika panguva iyoyo yehupenyu apo munhu ane chirwere cheParkinson kana chirwere cheParkinson chisingawanzoitiki ane hurema hwakanyanya. Pamwe pane kusagona kutaurirana [00:06:00] uko tese tiri kushanda pamwe chete kuti tive nechokwadi chekuti munhu wacho anokwanisa kuona mufaro muhupenyu hwake, kuti anzwe akasununguka kubva pamaonero emuviri, maonero epfungwa, uye maonero emweya.

Kuti tinonyatsopa rubatsiro rwakazara sezvatingada kuti tizvigamuchire isu pachedu uye sevanachiremba vanoshanda munzvimbo iyi, tinofanira kuva vakashinga uye kufambira mberi uye kusimbisa kuti izvi zvakakosha chaizvo. Kuti kana mumwe munhu achida kuti imbwa yake iuye kuzogara pamubhedha wake uye chipatara chikati, kwete, tinofanira kutsvaga nzira yekuzviita.

Nekuti izvo zvakakosha chaizvo kumunhu iyeye. 

Saka tinofanira kuchinjika uye kutarisisa munhu.

Dr. Sarah Camargos: Ehe. Une chirongwa chekutamba, kutamba neParkinson's uye box with Parkinson's. Saka ndinotenda kuti kune nyanzvi dzakawanda mubasa iri.

VaVictor McConvey: Zvechokwadi, tine mapurogiramu anoshamisa anowanzo shandiswa nevanhu vanorarama neParkinson's. Uye kazhinji tichiunza vamwe vanachiremba nevaongorori vemakiriniki. Tine kupenda neParkinson's, boxing, pickleball, ping pong neParkinson's. Saka tine mapurogiramu akasiyana-siyana anokurumidza ayo vanhu vanogona kutora chikamu maari uye kuramba vachitora chikamu maari sezvo paine kufambira mberi, sezvo paine shanduko dzakaitwa kuti zvive nyore sezvo kuremara kuchiwedzera.

Uye izvozvo zviri kuunza chimwe chinhu, icho chingave chisiri chekurapa chinopa mufaro nemufaro kuvanhu vane chirwere cheParkinson uye kunzwa sekuti zvinhu zvagara zvakanaka. Kana zvimwe zvese zvachinja, unogona kutamba ping pong, unogona kubuda kunze uko wotamba pickleball nepo pamwe usingakwanise kufamba mumugwagwa zvakanaka kudaro, asi unogona kutamba pickleball.

Zvakanaka izvozvo. Tinofanira kunyatsotarisa sevanachiremba uye kufunga zvakadzama nezvezvinodiwa nevarwere vedu.

Dr. Sarah Camargos: Uye vafadze uye varatidze kuti kune nzvimbo yezvinhu zvakawanda zvekuita. 

VaVictor McConvey: Hongu.

Dr. Sarah Camargos: Sei, [00:08:00] kusiyana-siyana, tsika, uye maitiro ekutenda zvinosangana nekurapa kwechirwere cheParkinson nezvimwe zvirwere zvekufamba.

VaVictor McConvey: Izvozvo zvakakosha zvikuru muzvirwere zvatinogona kurapa zviratidzo chete, saka mamiriro edu eParkinson asina kujairika uye mamiriro edu eParkinson. Kunzwisisa munhu iyeye wese kwakakosha chaizvo. Kunzwisisa kuti tsika dzinogona sei kuumba kutarisirwa kuri kuitwa kana kurongwa. Kunzwisisa kuti pangave nedzimwe tsika apo kuudza mumwe munhu kuti ane hupenyu hwakaganhurirwa hachisi chinhu chinoda kunzwiwa nemurwere, asi mhuri ingangoda kunzwa izvozvo. Kunzwisisa kuti kana murwere wedu achibva munharaunda yevanhu vanoita zveungochani, ngochani, kana trans, tinofanira kugamuchira nekunzwisisa kuti vanogona kunge vaine chimiro chemhuri chakasiyana uye chimiro chehukama chakasiyana, uye kuitira kuti munhu iyeye asadzoke mukamuri pavanenge vachitaurirana nezvekurapa kwatinotsigira [00:09:00]. Kunzwisisa kuti zvitendero zvechitendero zvinogona kuchinja zvinhu zvese zvatingapa. Panogona kunge paine vamwe vanhu vane zvitendero zvakasimba zvechitendero zvine chekuita nekuchengetedza hutsvene hwehupenyu pavanenge vachivapa kana kuvazivisa kuti kune chirongwa chekubatsira kufa chekuzvipira chingave chimwe chinhu chavasingafarire. Saka tinofanira kunyatsonzwisisa zvese zviri muzvitendero zvedu uye kazhinji tozvibatanidza mukutarisira kwedu uye kunzwisisa kuti dzimwe nguva maitiro edu etsika angave achifunga kuti, iyi ingave ndiyo nzira yakanakisisa yekuenderera mberi, asi izvo zvakasiyana chaizvo nemaonero emurwere ehupenyu, uye tinofanira kuremekedza.

Dr. Sarah Camargos: Ehe, uye sezvandakanzwa, munofunga nezvemhuri nemuchengeti wevarwere vari muchirongwa chekurapa varwere vadiki, saka vanotora chikamu muchirongwa chekurapa varwere vadiki.

VaVictor McConvey: Ehe. Nzira yedu yekutarisira ndeye [00:10:00] inosanganisira mhuri, saka inotarisa kumurwere, asi ine hushamwari kumhuri uye chimiro chemhuri ichocho chakashanduka zvichienderana nemunhu iyeye. Kune vamwe vedu vasina mhuri dzakawanda, kana kuti vanogona kunge vachigara kure. Uye mhuri dzedu dzave shamwari dzakatikomberedza uye tinofanira kunzwisisa nekuremekedzana kuti munhu wese ane chimiro chakasiyana uye chimiro chemhuri chakasiyana netsika.

Dr. Sarah Camargos: Ehe. VaMcConvey, ndapota tiudzei zvishoma nezvechirongwa chePD Pal. Kwakatangira, zvinangwa, uye zvakaitwa.

VaVictor McConvey: Saka chirongwa chePD Pal chaive chirongwa chinoshamisa chemuEurope yese chakavakirwa zvikuru mudzidzo nekugadzira chishandiso chekudzidzisa online asi zvakare chinotarisa kugadzira mitemo mitsva yekutarisira varwere vanorwara. Tine mitemo mishoma kwazvo inowanikwa kwatiri ine hunyanzvi hwakasiyana, yakatarisana uye inotungamirwa na [00:11:00] Angelo Antonini nechikwata chake paYunivhesiti yePadua.

Zvakaita zvinhu zvinoshamisa chaizvo patakwanisa kutarisa nzira dzatingabatanidza nadzo rubatsiro rwevanhu vanorwara nepfungwa (palliative care) muhutano hwevanhu vakawanda, saka mumabasa ekubatsira vanhu vakaremara nevanorwara nepfungwa (rehabilitation services) uye mumuenzaniso wekubatsira vanhu vane neurology, rehabilitation nepalliative medicine kana intersecting kuti titsigire tekinoroji yakanakisa yatinoda kuti titore zvikamu zvemhando dzakasiyana siyana kuti titsigire munhu wacho.

Kuti zvingasava kurapwa kwakarongeka kwatingaona mu oncology. Kurapa kwekunyaradza kweuropi kunonetsa zvikuru. Pachava nevamwe vanhu vanotanga kugamuchira kurapwa kwekunyaradza vanogona kunge vari mumatambudziko munharaunda, kamwe kamwe vanowana rubatsiro rwakanaka uye mamiriro acho ezvinhu anovandudzika.

Vachiri kushandisa nzira dzekurapa dzinonyaradza marwadzo, asi vari kurarama zviri nani. Uye chirongwa chePD Pal chakanyatsoongorora zvinhu zvose izvozvo ndokuzvibatanidza mumuenzaniso wakanaka kwazvo. [00:12:00] Uye zvinotsigirwa nedzidzo inoshamisa yepamhepo, yekuti chero munhu anogona kuwana hunyanzvi uye kuwedzera ruzivo rwavo rwenzira dzakanakisisa dzekurapa, nezvekurapa kunoderedza marwadzo kune vanhu vane Parkinson's. 

Dr. Sarah Camargos: Chirongwa chako chakanaka uye chinoshamisa. Unofunga kuti chii chinonyanya kukosha pakubatanidza rubatsiro rwevanorwara nepfungwa mukutarisira matambudziko ekufamba kwenguva dzose?

VaVictor McConvey: Ndinofunga kuti tine matambudziko akati wandei ari pamberi pedu. Mamwe acho ari kuve nechokwadi chekuti tine vashandi vehutano vakashongedzerwa kuti vanzwisise kuchinja kubva pakutarisirwa kwenguva dzose kuenda kuhutano hwakawanda hunoda nzira yekuderedza kushushikana uye kukwanisa kupindura kune izvo zviratidzo. Tine mamwe matambudziko mukati mehurongwa hwedu hwehutano hwekuona kuti rubatsiro runodiwa nemunhu ane Parkinson's kusvika kumagumo ehupenyu rwave nemidziyo chaiyo. Tinoziva kuti imhando yakasiyana ye [00:13:00] yekurapa kunorwadza kupfuura ingave iripo kune oncology. Iyi inzira yekudyidzana kwezvikoro zvakasiyana-siyana ine rubatsiro rwekuderedza kushushikana uye inogona kugara kwenguva yakareba. Saka ndinofunga kwatiri sevarapi, patinenge tichiona munhu ane Parkinson's uye tichifunga kuti kana ukafa mugore rinotevera kana zvakadaro, handingashamisike. Izvi zvinowanzova chiratidzo chekuti murwere uyu tinofanira kufunga nezvenzira yekuderedza kushushikana pakutarisira kwake kuti tive nechokwadi chekuti zvinodiwa zvake zvemweya, zvemuviri, uye zvepfungwa zviri kugadziriswa. Kuti tine kurapa kwakanaka kwekutaura mukati kuti tive nechokwadi chekuti kubudiswa kweropa nekutaurirana zvakanaka.

Kurapa muviri kuti munhu anyaradzwe, OT yekutarisira kuneta, kuchengetedza vana kuti vave nechivimbo uye kuchengetedza ganda. Kuti tiri kusanganisirawo rubatsiro rwemweya nepfungwa kuti titsigire izvozvo. Saka tinofanira kuwana nzira idzodzo, dzinonetsa nekuti dzinodhura. Saka chimwe chezvinetso zvedu chingave chekuti tinoda [00:14:00] kugadzira maturusi ekubatsira vanhu kuti vanzwe vakasununguka atinogona kudzokera kuhurumende kana kumakambani einishuwarenzi toti, izvi ndizvo zvatinoda kuti tipe rubatsiro rwakanakisisa.

Dr. Sarah Camargos: Zvakakwana. Uye basa renyu rekupa rubatsiro rwevanhu vane hunyanzvi hwakasiyana-siyana, makaburitsa, ndinofunga muna 2023 uye kugadziriswa kwemuviri kwakanaka kwazvo. Ndinofunga kuti raive muna Chikumi weParkinson's Disease. Ndine chokwadi here? 

VaVictor McConvey: Ehe. Ehe, ndizvozvo. Ehe. 

Dr. Sarah Camargos: Zvinoshamisa. Ndinokukurudzirai kuti muongorore bepa iri nekuti rakanaka kwazvo. VaVictor McConvey. Tinotenda zvakare nekushanda pamwe chete kwenyu kwakanaka nhasi. Uye kune vateereri vedu, rambai makagadzirira chikamu chinotevera chenyaya yedu yeHot Topic.

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