Ukhetho lokuphela kobomi lwabantu abanesifo sikaParkinson

Enkosi kakhulu ngokuthatha ixesha lokudibana nathi namhlanje. Ndiyayixabisa kakhulu loo nto.

UDkt. Marjan Meinders: Enkosi ngesimemo. Lilungelo elikhulu ukwabelana nawe ngamava am kule podcast

Nksz. Nicole Duff: Ngoko ke namhlanje siza kuthetha ngenqaku elinomdla kakhulu ebenisebenzisana nalo, elinesihloko esithi Iimfuno Ezibhaliweyo Zokuphela Kobomi Zabantu Abanesifo SikaParkinson okanye Ukugula Kwengqondo Kuyo Yonke IYurophu. [00:01:00] Kwaye ndicinga ukuba lisitsalele ingqalelo kuba alizange libe nomdla kangako kwixesha elidlulileyo, kodwa ngoku kwiminyaka embalwa edlulileyo lifumene umdla wokujonga ukuphela kobomi kunye nonyango lokudambisa iintlungu, ingakumbi kwicandelo likaParkinson.

Ngoko ke ndicinga ukuba eli nqaku ngokwalo belinomdla kuba liqala, njengoko ubutshilo, uphando olunezigaba ezininzi ezinokuvela emva kwalo. Ngoko ke yinto endicinga ukuba inokuba nophando oluqhubekayo kuyo ixesha elide elizayo.

Ngoko ke ndicinga ukuba into yokuqala endandifuna ukuyibuza kukuba amazwe awayebandakanyeka yayiyi-Austria, i-Estonia, iJamani, iGrisi, i-Itali, neSweden. Kwaye ndandinomdla kakhulu kwindlela loo mazwe athile akhethwe ngayo ukuba abe yinxalenye yolu phando.

UDkt. Marjan Meinders: Enyanisweni, olu luphando lwaseYurophu oluxhaswe yinkqubo yeHorizon 2020, [00:02:00] kwaye amazwe akhethwe zii-PI kuphela. La ngamalungu e-MDS adibana kwiingqungquthela kwaye enza izicwangciso zophando olufanelekileyo. Ngoko ke le yindlela ezenzeka ngayo izinto. Kwaye ukongeza kumazwe owakhankanyileyo, ne-UK ithathe inxaxheba, nangona indima yabo kweli nqaku yayincinci.

Kodwa kulungile ukukhankanya ukuba nabo babandakanyiwe kule projekthi inkulu yaseYurophu.

Nksz. Nicole Duff: Enkosi. Ndicinga ukuba nangona oku kwenzeke ngengozi, kuyathakazelisa kuba iindlela ezininzi zokuqokelela idatha okanye ukujonga apho idatha iqokelelwa khona bezingaqhelekanga, kwaye kwanika uphando ubunzulu bokwenyani, ukuba uqokelele ngandlela thile okanye ukuba ziirekhodi zempilo ze-elektroniki, emva koko wongeze okuninzi kwidatha yakho yokufunda, kwaye oko-- kwakumnandi kakhulu ukukwazi ukujonga loo nto.

Ngoko ke ngenxa yokuba usebenzise imithombo emininzi kangaka [00:03:00] ngaba ufumanise ukuba umthombo omnye kulula ukuwuqokelela?

UDkt. Marjan Meinders: Eneneni leyo yayiyeyona ngxaki iphambili kule projekthi. Ukubhalwa kwamaxwebhu okhathalelo lokuphela kobomi kwirekhodi yezonyango kusondele kakhulu kukhathalelo lwezonyango, ngoko ke kuyavakala ukujonga iinkalo apho. Nangona kunjalo, kwimeko yethu yophando, besingenalo ukufikelela kwiirekhodi zezonyango ngalo lonke ixesha, ngoko ke loo nto yayilucelomngeni.

Kwaye ukuba besinokufikelela kwiirekhodi zonyango zakhiwe ngendlela entsonkothileyo kakhulu, ngoko ke ukuba akukho ndawo ithile kwirekhodi yezonyango apho olu hlobo lweminqweno lubhalwe khona, kunzima nokufumana indawo apho iminqweno kunye nezinto ozikhethayo zibhalwe khona. Ngoko ke oko bekukwicala lerekhodi yezonyango.

Njengenye indlela, sisebenzisa iingxelo zethu kwaye kwavela ukuba ingakumbi eJamani nase-Austria, abantu babebhale imiyalelo ephucukileyo egcinwe emakhaya [00:04:00]. Babeyigcina le miyalelo emakhaya, ngoko ke le yayikwangumthombo omkhulu wolwazi lwezinto ezibhaliweyo ezikhethwayo zokhathalelo lokugqibela lobomi.

Nangona kunjalo, sifumanise ukuba abantu babonise ukuba abanazo iirekhodi zokhathalelo lokugqibela lobomi ezibhaliweyo kwirekhodi yezonyango, kodwa xa sijonga ingxelo yezonyango, kukho into ethile apho. Ngoko ke ukuphucula ukufaneleka kwedatha yethu kube nzima, kwaye senze indlela ecwangcisiweyo ngokwenene.

Ekugqibeleni, ndicinga ukuba ngomnye okanye babini kuphela abathathi-nxaxheba ekwakufuneka benze isigqibo kunye ne-PI sokuba bangayitolika njani idatha. Ngoko ke andinakutsho ukuba omnye ungcono kunomnye. Kukwaxhomekeke kakhulu kwilizwe, indlela ehlelwe ngayo inkqubo. Umzekelo, ukugcina imiyalelo ephucukileyo ekhaya kuxhaphake kakhulu eJamani.

Oko bekuyinyani kum -- nakum njengomphandi waseNetherlands, bekumangalisa. Kodwa kuhlanganiswe kakhulu kuluntu xa kuthelekiswa nakweliphi na elinye ilizwe.

Nksz. Nicole Duff: Kwaye sithetha ngeJamani kuba kweli nqaku uthetha ngalo yaziwa kakhulu ngokwembono yezempilo yoluntu, ngoko ke ukuba namaxwebhu ekhaya, ungacinga ukuba amalungu osapho kunye nabanakekeli bayazi ukuba la maxwebhu asekhaya. Nangona kwamanye amazwe apho angaziwa kangako kwicandelo lezempilo yoluntu, ubungayi kulindela ukuba amaxwebhu abe sekhaya kuba akukho mntu unokwazi ukugcina olu lwazi.

Ngoko ke igcinwa phi ngokwenene, ukuba awuyifumani kwiirekhodi zempilo, kwiirekhodi zempilo ze-elektroniki, ngoko ke, uza kuyifumana phi ngokwenene le ngcaciso? Ngoko ke, ngokujonga imithombo eyahlukeneyo apho ufumene khona ulwazi, ngaba ufumanise ukuba enye ichanekile kunenye?

UDkt. Marjan Meinders: Enyanisweni akunjalo. Le yayingeyonjongo yokwenyani yolu phononongo. Sasifuna amaxwebhu kunye nomxholo othile, kodwa asizange singene nzulu kwi-[00:06:00] yokuba semthethweni kwalo lonke ulwazi. Enyanisweni, yayingaphaya komxholo wolu phando. Khumbula ukuba oku kwakuyinxalenye yovavanyo olukhulu olulawulwa ngokungacwangciswanga, ngoko ke kukho okuninzi okuza kuvela kuphando lwe-PD PAL.

Kwaye ukubhalwa kweenkcukacha zokhathalelo oluza kugqitywa bubomi yayilithuba elihle lokuqala nokufunda ngeendlela zokunyanga kumazwe ahlukeneyo kuba kukho ukwahlukahlukana okukhulu kulo lonke elaseYurophu kuloo nto.

Nksz. Nicole Duff: Ewe, ndingayicinga. Ngaba ufumanise ukuba kwiirekhodi zempilo ze-elektroniki, ukuba ufumene imiyalelo ephucukileyo yesigulana ukuba iimbono zomntu ngamnye zeengcali zezempilo okanye iimbono zabo malunga nomyalelo zabhalwa phantsi?

UDkt. Marjan Meinders: Hayi, andikwazi. Andizange ndikhuphe idatha mna. Kwaye, uyazi, oku kuyinyani malunga nolwalamano phakathi kwesigulana, amalungu osapho kunye nogqirha onyangayo. Kwisifundo sethu, yayingekho kwi [00:07:00] loo ngqiqo ibalulekileyo, kwaye asikhange siyijonge loo nto.

Nksz. Nicole Duff: Ngoko ke ufumanise ukuba malunga nama-20% abathathi-nxaxheba babenezinketho zokhathalelo lokuphela kobomi, nto leyo ngokubanzi ebonakala iphantsi kakhulu. Ngoko ke kwilizwe ngalinye, nithethe ngezinye zezizathu enicinga ukuba zinokuba ngunobangela woku. Ngaba ningasichazela ngezinye zezi zizathu nizifumeneyo nina bafana?

UDkt. Marjan Meinders: Ewe, ndicinga ukuba singazichonga izigaba ezintathu. Ngoko ke okokuqala yinto yoluntu. Ngoko ke kuluntu lwaseNtshona, ukhetho lokhathalelo lobomi olupheleleyo kunye neengxoxo malunga nokuba, kunjalo, lunxulumene nokufa, kwaye ukufa kunentsingiselo engalunganga kakhulu.

Kuphantse kube yinto engavumelekanga ukuthetha ngayo, nangona iyinxalenye yobomi. Sibhiyozela ukuzalwa, kodwa ukufa kukwayinxalenye yobomi. Ngoko ke le yinto yoluntu, kwaye abantu babengakhululekanga ukuthetha ngezinto abazithandayo xa bephelelwa bubomi, ingasathethwa ke [00:08:00] xa bebhala phantsi. Ngoko ke le yinqanaba lesibini, abantu ngokwabo.

Kwisifo sikaParkinson kufuneka ujongane nezinto ezininzi sele ujamelene nesifo sakho. Abantu abaninzi bayakuphepha izinto ezimbi ebomini. Bakhetha ukugxila kwizinto ezintle zobomi. Ngoko ke ukucinga ngokuphela kobomi kunxulunyaniswa nenxalenye embi yesifo sikaParkinson. Nangona ndibazi abantu abaqale ukwenza umyalelo kwangoko emva kokuba bexilongiwe kuba bengafuni ukubeka umthwalo kumalungu osapho ukuba enze izigqibo ezinzima.

Kodwa ngokubanzi ukhetho kunye neengxoxo malunga noku ziyathintelwa ngokwenene. Ngoko ke oko kukwinqanaba lesigulana. Kwamanye amazwe, ngakumbi e-, ndicinga ukuba e-- kwakuse-Itali nase-Austria abantu babevakalelwa kukuba ukuxoxa ngemiba yokhathalelo [00:09:00] yinto ekufuneka yenziwe kwinkqubo yosapho kwaye kungekhona kakhulu neengcali zakho zezempilo.

Ngoko ke eso sisizathu sokuba ingabhalwanga kwiirekhodi zonyango. Kwaye kwinqanaba lesithathu, yinkqubo yezempilo ngokwayo. Ngoko ke, ukhathalelo lwentlungu alufakwanga kwinkqubo yethu yezonyango. Iingxoxo ezilungileyo malunga nokhathalelo lokuphela kobomi zifuna indlela eyahlukeneyo. Yinkqubo ethatha iincoko ezininzi.

Akukho kungxama. Kusoloko kukho indawo yokucamngca, kwaye ngokwesiqhelo le yi-- le gumbi, le ndawo ayifumaneki kwiingcebiso zeklinikhi. Ngoko ke nenkqubo yezempilo ngokwayo ayixhasi amaxwebhu okhetho lokhathalelo lokugqibela. Ngoko ke iyonke ichaza i-20%. Andizange ndimangaliswe [00:10:00] linani.

Nksz. Nicole Duff: Ewe emva kokuva loo ngcaciso inee-layers ezininzi, ndiyaqonda ukuba aphi na amanqanaba ahlukeneyo kwaye abekwe ngokucacileyo, ngoko ke enkosi ngaloo nto. Kwaye ndicinga ngendlela ekufuneka ijoliswe ngayo kumanqanaba amaninzi ukuze ndizame nokucinga ngokuphucula oku. Into enye endiyifumene inomdla kakhulu kukuba xa ubeka iindawo ezintathu ezahlukeneyo ojonge kuzo izinto ezinokugutyungelwa kwimiyalelo yokugqibela yobomi.

Into endiyifumene inomdla kukuba uninzi lwemibuzo ephendulweyo okanye eyayinolwazi malunga nokuba banayo na igqwetha. Ngoko ke kum oko kwakunomdla kukuba babengaphenduli yonke imibuzo emalunga nokuba bafuna unyango phi okanye ukuba bafuna ukungenelela kwezonyango ngaluphi na uhlobo, kodwa babeqinisekile ukuba babenegqwetha kuxwebhu lwabo.

Ucinga ukuba oko kwakhona [00:11:00] kukuswela ulwazi nje eluntwini?

UDkt. Marjan Meinders: Ewe, ndicinga ukuba le yindawo entle yokuqala. Ukumisela ummeli wezomthetho yinto yokuba kukho umntu onokwenza isigqibo egameni lesigulana, kuba kungenjalo izigqibo zenziwa ziingcali zonyango kwaye zisebenzisa imigangatho yazo yobungcali endaweni yemilinganiselo yomntu ngamnye.

Ndicinga ukuba le yindawo entle kakhulu yokuqala kunye nokungabikho kolwazi kuluntu lokuba nezinye izigqibo zinokubhalwa phantsi. Ndicinga ukuba unenqaku elihle apho. Ubuncinane, ngokuqinisekileyo kukungabikho kolwazi, kodwa nobunzima besigqibo esinjalo, awunakuthelekisa nokwabela nje ummeli wezomthetho.

Ukucinga ngonyango, ukuyeka unyango kunzima kakhulu

Nksz. Nicole Duff: Ewe, njengoko benditshilo ngaphambili, ndicinga ukuba olu phononongo lufumene ulwazi oluninzi [00:12:00] ekufuneka siluqokelele size sikwazi ukuzama ukulusebenzisa oluya kunceda izigulane ngeendlela ezininzi. Ngoko ke xa ubuthetha ngeqela lonke lezifundo ezahlukeneyo, kolu phononongo lwePD Pal olusaqhubeka, ndiqaphele ukuba ubujonge ukusebenza kakuhle okukhokelwa ngabahlengikazi, ngoko ke ndinomdla wokuba kutheni uqale ngokusebenzisa abahlengikazi kungekhona, umzekelo, abasebenzi bezentlalo okanye iingcali zonyango ezihlangeneyo.

Ngoko ke ndiyazi ukuba luphononongo olwahlukileyo kwaye aluyonxalenye yenqaku, kodwa loo nxalenye inditsale umdla ukuba mhlawumbi ufuna ukucacisa loo nto.

UDkt. Marjan Meinders: Ewe, ngumbuzo olungileyo kakhulu lowo. Abahlengikazi, ubuncinane eNetherlands nakwamanye amazwe aseYurophu banesikhundla esiphambili ekunikezeleni unyango kubantu abaneParkinson's. Ngokwesiqhelo, ngabona bantu bokuqala abadibana nabo kulo lonke ixesha lesifo, ngoko ke kukho ubudlelwane bokuthembana ngokwenene, kwaye leyo yindawo entle kakhulu yokuqala [00:13:00] ukuba neencoko kunye neencoko eziphindaphindwayo.

Ngoko ke, umongikazi ngumntu olungileyo ukuthatha indima yokukhokela kule nto. Kodwa ndiyavuma ukuba nabanye oochwephesha bezempilo banokuba nendima kwaye mhlawumbi nokuba yindima yokukhokela. Ukuba umntu unobudlelwane obuhle kakhulu nogqirha wezonyango, kutheni kungenjalo? Kodwa kubalulekile ukuba amanye amalungu eqela leengcali ezahlukeneyo azi ukuba ezi ngxoxo ziyenzeka kwaye nokuba zeziphi izigqibo ezenziwayo.

Ngoko ke umceli mngeni uza kuba njani ukwabelana ngolwazi olunjalo kuba akukho nyango oluhlanganyelwayo neengcali ezisebenza kuluntu kungekhona esibhedlele. Kodwa ndiyavuma ngokupheleleyo. Ngokwenkcazo, asingomongikazi ofanele ukwenza oku. Ndicinga ukuba kuxhomekeke kakhulu kulwalamano lomntu nomntu oqeqeshiweyo.

Nksz. Nicole Duff: Njengoko usitsho, abantu abaninzi bacinga ukuba kufuneka kuhlale kusapho, kodwa njengoko benokuqokelela olo lwalamano, [00:14:00] lowo usenokuba ngumntu onokuqhagamshelana naye. Ndicinga ukuba inxalenye yoko ukukhankanyileyo, endicinga ukuba kuya kuba luncedo kakhulu kwixesha elizayo, yingcinga yokuba netemplate yemiyalelo yokhathalelo oluphezulu esemgangathweni, kwaye ke, njengoko usitsho, kwiqela lezifundo ezahlukeneyo, wonke umntu unokuba nelungelo malunga nokuba iingcinga zezigulane zingaya phi okanye indlela esifanele sizame ngayo ukwenza izigulane ziqale ukucinga.

Ngoko ke ngaphakathi kweqela elinamacandelo amaninzi, ngaba ukholelwa ukuba le template isuka kwelinye ilizwe iye kwelinye, okanye ucinga ukuba singaba neyomgangatho ofanayo kulo lonke elaseYurophu mhlawumbi, okanye ucinga ukuba yinto ekufuneka yenziwe ngabanye kwiqela ngalinye?

UDkt. Marjan Meinders: Ndicinga ukuba kunokubakho umgangatho njengesiqalo kwaye i-MDS inokuba nendima ephambili kuloo nto yokudala imigangatho enjalo, kuba ukuyenza ibe yi-Parkinson's specific nayo ibalulekile, ndicinga, ukugubungela zonke iinkalo ezifanelekileyo zokhathalelo. Ngoko ke ewe itemplate esemgangathweni enokwamkelwa kwaye idityaniswe kwiinkqubo ze-elektroniki ezisetyenziselwa ukuxhasa unyango olunezifundo ezininzi.

Ewe, kwaye oko kuhlelwe ngokwahlukileyo kuwo onke amazwe. Kodwa oko sikubonayo eJamani abanamaxwebhu asemgangathweni kunye neefomathi zocwangciso lokhathalelo oluphezulu, kunceda ngokwenene ukukubhala phantsi. Kwaye la maxwebhu ngamaxwebhu aphilayo, akunjalo?

Ingatshintsha ngalo lonke ixesha xa nidibana nize nibe neengxoxo eziqhubekayo. Ngoko ke oko kubalulekile nakwizigulane ukuba oko ukubhalileyo namhlanje kungatshintshwa kwaye luxwebhu oluphilayo.

Kwaye, kwaye abantu bayoyika ukuba olu hlobo lwemiyalelo lutolikwa, um-- lutolikwa gwenxa ziingcali zezempilo.

Ngoko ke loo nto ayilolunye umba endifuna ukuwugxininisa, nokuba nakwizigulana kufuneka kucace ukuba yintoni indima kunye nendawo yemiyalelo ephucukileyo.

Nksz. Nicole Duff: Akufanele ukuba ivela kwindawo yoloyiko, kodwa endaweni yoko ibe semgangathweni wobomi kwaye [00:16:00] ibanike indawo yokulawula.

UDkt. Marjan Meinders: Ndiyayithanda loo mazwi akho. Ewe.

Nksz. Nicole Duff: Ngoko ke umbuzo wokugqibela, endiwufumene umhle kakhulu kwicandelo elinye apho nixoxe khona ngokuba nibe nabathathi-nxaxheba abasixhenxe apho i-MoCA yabo yayingaphantsi kwe-10, kwaye bekukho imibuzo ethile malunga nokuba bekufanele ukuba babandakanyeke na kolu phando okanye akunjalo. Kodwa uthe abavavanyi basekuhlaleni bathi bekufanele ukuba babe kolu phando, kwaye ngenene lubaluleke kakhulu kuba ngoko lwasivumela ukuba siluchaze ngokubanzi kubantu abasenokuba baqhubele phambili, kwaye sisazi ukuba nangona sinezigulane zeParkinson eziqhubele phambili, sisenokwenza umyalelo ophambili, endicinga ukuba kuyathuthuzela kakhulu ukuwazi.

Ngaba ucinga ukuba kwelinye icala, oko kungenza kwaye kufanele ukuba kusenokwenza umyalelo ophambili kubantu abaneHoehn kunye neYahr ezingaphantsi kwezintathu?

UDkt. Marjan Meinders: Ewe. Ukuqalisa incoko ngemiyalelo ephucukileyo kufuneka kulungiselelwe iimfuno [00:17:00] kunye nenqanaba umntu akulo. Ngoko ke oko kufuna indlela yokunxibelelana ebukhali ngokwenene, kwaye kum ayixhomekekanga kwinqanaba likaHoehn nelikaYahr. Kodwa into ekufuneka siyiphephe kukuba ugqibela unomntu ongakwaziyo ukwenza naziphi na izigqibo, kwaye amalungu osapho kufuneka enze njalo.

Ngoko ke kuphononongo lwethu, ngokwenene besinabanye abathathi-nxaxheba abanamanqaku aphantsi e-MoCA, kodwa kwezi meko, amalungu osapho ayebaluleke kakhulu. Leyo yayiyenye yeendlela zokubandakanywa. Kufuneka kubekho ilungu losapho elikhoyo. Ngoko ke eneneni, kwezi meko, ndicinga ukuba uphuze kakhulu, kodwa sibavumele ukuba bathathe inxaxheba, kwaye eneneni sibonise ngeemeko ezimbalwa ukuba kusenokwenzeka, kodwa eneneni kufuneka uziphephe ezi meko. Kodwa kwakhona, oku kuxhomekeke kwindlela umntu asebenza ngayo kwaye xa umntu ekulungele olu hlobo lwencoko. [00:18:00] Kwaye ukuqala kwangethuba kubantu abaninzi kusesekutsha kakhulu, nangona kwityala likaBenzi Kluger, nabantu abanesigaba sesibini sikaHoehn noYahr bafakiwe.

Ngoko ke ukungenelela kwabo kokhathalelo lokudambisa iintlungu kwamkelwe kakuhle ngabantu abakwinqanaba eliphantsi leHoehn neYahr.

Nksz. Nicole Duff: Yiyo loo nto ilungeleleneyo apho izigulane zisabela nje ekukwazini ukuva iindaba. Kwaye njengoko usitsho, oko kunokulungiswa ngokwahlukeneyo. Ndinemibuzo emininzi endifuna ukukubuza yona, kodwa ndigqibezele phi ukusuka apha? Ngaba kukho enye into ecetywayo? Ngokucacileyo unesifundo sePD Pal, kodwa ngaba kukho enye into esendleleni?

UDkt. Marjan Meinders: Kaloku, sigqibezela lonke uhlalutyo lwethu kunye neempapasho malunga novavanyo lweklinikhi. Ngoko ke isiphumo esiphambili, uvavanyo oluphambili luphantse lwamkelwe kwisifo sikaParkinson sikaNPJ. Kwaye sinomsebenzi omninzi owenziweyo kuba besifuna ukuqonda [00:19:00] impembelelo yokungenelela kwiincoko ezikhokelwa ngabahlengikazi, oko kwakuthetha ukuba abantu abaneParkinson babe neencoko ezinjalo.

Kukho umsebenzi omninzi oza kwenziwa. Kwaye ndicinga ukuba loo msebenzi ubaluleke kakhulu kuphando kwicandelo lokhathalelo lwentlungu.

Nksz. Nicole Duff: Oko kuvakala kumnandi kakhulu, kwaye ndikulindele ngabomvu. Ewe, enkosi kwakhona ngokuba nathi nokuthetha nathi kwaye siyayixabisa kakhulu loo nto.