Umgangatho wobomi kwisifo sikaParkinson

Namhlanje, siza kuthetha ngenqaku lakhe lakutshanje kwijenali yeMovement Disorders Clinical Practice enesihloko esithi "Ukuchaza Umgangatho Wobomi: Imbono Yabantu Abaphila Nesifo SikaParkinson." Enkosi kakhulu ngokujoyina nathi namhlanje.

UDkt. Connie Marras: Ndiyayonwabela. Enkosi ngokuba nam.

UGqr. Sara Schaefer: Kulungile. Uyazi, into eyandichukumisayo kuqala ngale phepha kukuba ichaza into esithetha ngayo rhoqo. Sithetha ngayo ngokusebenza, kwindlela yokusebenza yeklinikhi. Sithetha ngayo kwindawo yophando. Umsebenzi wakho ujolise ekuchazeni ukuba umgangatho [00:01:00] wobomi uthetha ukuthini kubantu abanesifo sikaParkinson, kwaye njengoko benditshilo, sele kukho umgangatho wobomi osetyenziswa kuphando nakwindawo yokusebenza yeklinikhi. Kutheni iqela lakho licinga ukuba kubalulekile ukubuza lo mbuzo ngoku?

UDkt. Connie Marras: Ewe. Ngoko ke izimvo zakho zibonisa inyani yokuba, nangona sisebenzisa eli gama ngalo lonke ixesha kwaye sicinga ukuba siyazi ukuba lithetha ukuthini xa uqala ukujonga indlela izikali ezifuna ngayo ukulinganisa umgangatho wobomi, kunye nendlela eli gama elisetyenziswa ngayo kwiincwadi. Lisetyenziselwa ukuchaza ingcamango yobubanzi obahlukeneyo ngokuxhomekeke kumxholo.

Kwaye izikali esizisebenzisayo zihlala zigxile kwizinto ezibonisa umgangatho wobomi, kungekhona ngokwenene intsingiselo okanye isiseko sento ngokwayo. Kwaye ngoko ke yayilulo olo lwazi [00:02:00] olwandenza ndanomdla wokuqonda ngcono ukuba yintoni umgangatho wobomi.

Kwaye xa ndijonga iinkcazo zomgangatho wobomi kwiincwadi, ndaqonda ukuba besingazange-- bendingazange ndifumane, ubuncinane, umsebenzi obubuze abantu abanamava ukuba bacinga ntoni ngale nto. Ngoko ke zezo zinto ezakhuthaza olu phando.

UGqr. Sara Schaefer: Xa uthi izinto ezibonisa umgangatho wobomi zisesikalini, ungandinika imizekelo ethile?

UDkt. Connie Marras: Izikali zomgangatho wobomi kwisifo sikaParkinson, sidla ngokuzibiza ngokuba ngumgangatho wobomi onxulumene nempilo, zihlala zahlulwe zibe ziinkalo ezifana nokunyakaza komzimba, okungekuko ukuhamba komzimba, kunye neemvakalelo. Umzekelo, kunokubakho umbuzo wokuba umntu angahamba kakuhle kangakanani okanye ukuba kungakanani na, ukuba umntu ungcangcazela kangakanani, umzekelo.

Ngoko ke ezo zingaba yimizekelo yezinto ezinokubangela umgangatho wobomi bomntu kwinxalenye encinci [00:03:00] kodwa zingabonisi umgangatho wobomi ngokwazo.

UGqr. Sara Schaefer: Kulungile. Ngoko ke, ujonge njani ukuyifumana le nto? Sixelele ngeendlela zophando lwakho kwaye ndingathanda ukuva ukuba kutheni iqela lakho likhethe indlela esemgangathweni yokuqokelela olu lwazi.

UDkt. Connie Marras: Ewe. Mhlawumbi ndiza kuqala ngenqaku lokugqibela kuqala, kutheni indlela yokwenza izinto ngendlela echanekileyo? Ngoko ke, akukho mpendulo ichanekileyo okanye engalunganga koku, malunga nokuba yintoni umgangatho wobomi? Isekelwe kakhulu kwiimbono zethu. Injongo yethu yayikukuqonda okunengqiqo. Kwaye ezo ndlela zivumela uphando olunengqiqo.

Kwaye ngenene, besiqala kwinqanaba lokuswela ulwazi lwangaphambili. Ngoko ke besifuna ukufumana izimvo zabantu abanamava okuphila ukuze sikwazise mhlawumbi uphando oluneenkcukacha kamva ngale nto, injongo iyonke yeprojekthi enkulu yokuchonga iimpawu ezibalulekileyo zezikali ezenzelwe ukulinganisa umgangatho wobomi. [00:04:00] Kodwa ngokwembono yabantu abanamava okuphila.

Ukuze senze oku, saqala ngokubuza aba bantu, ukuze iqela labantu abanesifo sikaParkinson, ukuba baza kuwuchaza njani umgangatho wobomi? Saza sababuza, sabaxelela ukuba siza kubabuza oku kumxholo wodliwanondlebe saza sabanika iintsuku ezimbalwa zokucinga ngako. Emva koko bazisa ezo ngcinga kudliwanondlebe.

Saza sazibhala phantsi zonke iimpendulo zabo saza sasebenzisa indlela echanekileyo yolu hlalutyo, saqala sabhala iindidi zolwazi ababesinika zona, saza salandela olo hlalutyo ngomxholo othe kratya. Oko sakwenza saya kuluhlu olusasazwa kwiqela elisebenzayo, elaliquka abantu abaphila nesifo sikaParkinson kunye noogqirha, iingcali zeengxaki zokunyakaza, kunye neengcali zempilo ezidibeneyo.

Kwaye ngamnye kwabo bantu [00:05:00] wasinika ingxelo ngokwahlukeneyo malunga nesakhelo, esathi sayifaka ngokuphindaphindiweyo saza sabanika impendulo ukuze baphucule ngakumbi. Ngoko ke yayiyinkqubo ephindaphindayo ebandakanya abantu abanesifo sikaParkinson nabangenaso.

UGqr. Sara Schaefer: Le yindlela enomdla kakhulu, ukuthatha idatha oyiqokeleleyo uze uye kwiqela kungekuphela nje lezo zigulana kodwa noogqirha ukuze bazame ukuyisebenza, kancinci kancinci.

UDkt. Connie Marras: Ewe, kwaye ndiyathemba ukuba siza kuyenza-- siyibeke kulwimi oluthetha namaqela omabini, akunjalo? Kuba ndicinga ukuba kukho abachaphazelekayo kumacala omabini koku abaya kunceda ekunikeni ulwazi ngophando kunye nokhathalelo lwezonyango.

UGqr. Sara Schaefer: Kwaye ufumene ntoni? Kwaye ngaba kukho naziphi na izinto ezimangalisayo ozifumeneyo, kuwe?

UDkt. Connie Marras: Ewe. Ngoko ke sifumene ukuba, ulwazi olunemigangatho emithathu yindlela endiyicinge ngayo, olukhokelela kwisiseko, imbewu yoko kukuko ngokwenene [00:06:00] ubomi. Kwaye uza kubona ukuba kukho umfanekiso ephepheni apho umxholo wangaphandle ubonisa iindlela zokudala iimvakalelo ezakhayo, ezikhokelela kwiimvakalelo ezakhayo zokwenyani ezinegalelo kumgangatho olungileyo wobomi.

Kwaye ke ngaphakathi kwintliziyo kukho umgangatho wobomi, okwimeko yengqondo equka iimvakalelo ezakhayo. Ngoko ke ndicinga ukuba igxininise ukuba umgangatho wobomi awunakubonwa. Imeko ephenjelelwa zizinto ezininzi ezibonakalayo, kodwa ezo azingomgangatho wobomi ngokwazo.

Kodwa enye yezinto ezimangalisayo kum, mhlawumbi ebekungafanele ukuba ibe njalo, ngenxa yolwazi lwam lweencwadi kunye nezikali esizisebenzisayo, kukuba uninzi lwabathathi-nxaxheba bethu bathethe ngezinto ezibangela umgangatho wobomi kunokuba bathethe ngomgangatho wobomi ngokwabo. Kwaye ke oko kubonisa ukuba le yinto enzima ukuyichaza [00:07:00] ngokwayo.

Bangaphantsi kwesiqingatha sabathathi-nxaxheba bethu abathetha ngokuthe ngqo ngeenkcazo zempilo, nto leyo eyayibalulekile, nangona babengabantu abanemeko engapheliyo yokuwohloka kwemithambo-luvo. Kodwa babethetha kakhulu ngezakhono kunye nokwenza izinto ezibanika uvuyo. Kwaye okwesithathu, kwakunomdla kakhulu kum ukuba iqela labantu ababenesifo sikaParkinson esiphucukileyo kwinto onokuthiwa yiindidi eziphakathi ukuya kwezinzima, kwaye yayingabantu kuphela abathetha ngeengcinga ezinje ngokuzimela okanye ukwamkela imeko yabo.

Nangona abantu abachaphazeleka kancinci, abazange baphakamise ezo ngcinga. Yayililo kuphela iqela elalithetha ngokufuna ukungabikho kokugxekwa, isidima, intlonipho, kwaye bathetha kakhulu ngokukwazi ukwenza izinto nokufuna ukuzigcina. Kodwa oku kungangqinelani [00:08:00] kusenze sacinga ngento yokuba indlela umntu acinga ngayo umgangatho wobomi kunye nezo zinto zibalulekileyo zinokutshintsha ngokuhamba kwexesha.

Nangona eyethu yayiluphando olunqamlezileyo, kungekhona uphando olude, ngoko ke oko kusafuneka kuvavanywe. Kodwa ndicinga ukuba mhlawumbi inefuthe ekulinganiseni kuba ayipheleli nje ekubeni izinto ezibangela ubomi zitshintshatshintsha kubantu ngabanye, ngoko ke abantu abakwisifundo sethu babesixelela izinto ezahlukeneyo kwiimeko ezininzi malunga nokuba ubomi bunjani kubo.

Kodwa kusenokwenzeka ukuba isenokutshintsha ngaphakathi komntu ngexesha lesi sifo, kwaye oko kusenokuba nefuthe ekulinganisweni.

UGqr. Sara Schaefer: Ewe, xa ndifunda iimpendulo, bendicinga ngendlela yokuba ukuba bendijonga le datha isemgangathweni, hayi ukuba ndinazo zonke iinkcukacha, kodwa bendiya kuzichaza njani izinto, akunjalo? Kwaye ndicinga ngemeko yezinto, akunjalo? Impilo xa ithelekiswa nempilo, iParkinson's [00:09:00] xa ithelekiswa ne-non-Parkinson's, okanye i-pre vs post-Parkinson's.

Emva koko oko unako ukukwenza okanye ongenakukwenza ngenxa yemeko yezinto. Ezo zinto zibalulekileyo kubo, uzimele kangakanani, uzijonga njengomntu oqhelekileyo kangakanani? Loo "meko iqhelekileyo" ivele izihlandlo ezimbalwa. Kuze kubekho impendulo kwimeko yezinto kunye noko unako ukukwenza okanye ongenakukwenza. Ngaba usafumana uvuyo?

Ingaba usafumana ulwaneliseko? Kwaye ke kwakukho uhlobo oluthile lwento yangaphandle, ukugxekwa, ukugweba, ukuba ngumthwalo okanye ukungabi ngumthwalo kwabanye, loo nto. Kwaye ndicinga ukuba, ngoko ukuthethileyo ekuqaleni, kubonakala ngathi uninzi lwezikali zethu lufikelela kuphela kwindawo yokuqala okanye mhlawumbi kwindawo yokuqala neyesibini yezo zinto, kwaye kungekuphela nje kwiindawo zokugqibela.

Kodwa kundishiye ndiziva ndingavumelani nayo yonke le nto. Ungayidibanisa njani yonke le nto ibe yingcamango enye? Kwaye kufuneka sizame? Ucinga ukuba oko kunokwenzeka na [00:10:00]?

UDkt. Connie Marras: Ndicinga ukuba umgangatho wobomi unokuncitshiswa ube yingcamango enye, kwaye lonke ulwazi esilunikwe ngabathathi-nxaxheba bethu lwalumalunga nezinto ezibangela le ngcamango enye. Babesixelela ngokucacileyo, nangona besithi, umgangatho wobomi kukukwazi kwam ukwenza izinto endizithandayo ngokwenene. Kukho intsingiselo yokuba banento abayenzayo ekhokelela kuvuyo, nto leyo egqiba umgangatho wobomi babo, akunjalo? Kwaye omnye umntu angakubeka ngendlela eyahlukileyo, efumana ulwaneliseko ngezinto abazithandayo. Kodwa kwakhona, kukhokelela kuloo meko yengqondo eyimvakalelo entle eyimigangatho yobomi, yayingumyalezo esawuthatha kubathathi-nxaxheba bethu.

Kwaye ndicinga ukuba iyahambelana naloo meko yokugqibela yengqondo, kodwa into eyahlukileyo yileyo imisela loo nto kubantu ngabanye. Kwaye [00:11:00] ngoko ke ndicinga ukuba umngeni ekulinganiseni kwethu umgangatho kuzama ukuwulinganisa ngokuthe ngqo ngokubuza abantu malunga nokuba baziva njani kakuhle, akunjalo?

Okanye ungakubeka njengomgangatho wobomi, ukuba uyathanda, kumbuzo omnye. Kodwa ukuba uzama ukwenza oko kuphando lwezonyango, kuxhomekeke kwinto ozama ukuyifikelela, masithi sithetha ngovavanyo lwezonyango apho sifuna ukusebenzisa umgangatho wobomi njengomlinganiselo wesiphumo sesibini, ngoko ke siza kudibana nengxaki yokuba zininzi izinto ezibangela loo meko yeemvakalelo ezintle kangangokuba siza kufumana umlinganiselo osabelayo ngokusekelwe kungenelelo lwethu?

Oko kusenokungenzeki. Ngoko ke kufuneka sikhethe izinto ezimbalwa ezichaza umgangatho wobomi esiza kugxila kuzo, kuxhomekeke kumxholo wokusetyenziswa. Kwaye ke ndicinga ukuba kukho umngeni woku, ukuba yingcamango enye yokugqibela [00:12:00], kodwa inenani elikhulu lezinto ezichazayo ezahluka kubantu ngabanye, kwaye kufuneka sifumane isisombululo sokulinganisa esibangela loo nto.

UGqr. Sara Schaefer: Ngoko ke ucinga ukuba umsebenzi wakho ufanele uchaze njani izikali esizisebenzisayo kuphando? Ndiyazi ukuba lo ngumbuzo oza kulandelwa ngamanyathelo alandelayo, umbuzo wezifundo zexesha elizayo, kodwa ngaba unazo naziphi na iingcinga zokuqala?

UDkt. Connie Marras: Ndiqinisekile. Ndicinga ukuba kufuneka sicacelwe ukuba silinganisa ntoni, ukuba asilinganisi umgangatho wobomi ngokwaso, kodwa silinganisa izinto ezibangela ukuba ubomi bube semgangathweni mhlawumbi kwiindlela ezininzi. Kufuneka, njengoko benditshilo, sizame ukuchaza olu hlobo lobuntu oluchaza umgangatho wobomi.

Kwaye sivile kwezinye iindawo zeprojekthi yethu yophando kubantu abaphila nesifo sikaParkinson malunga nendlela esinokukwenza ngayo oko ngokuzama ukugxila kungekuphela nje kubukho okanye ukungabikho, okanye ubuninzi okanye [00:13:00] beempawu kunye namava, kodwa nokuba yintoni impembelelo kumntu ngamnye.

Kwaye loo mibuzo yahlukile kwaye ifuna iimpendulo ezahlukeneyo kodwa inokubandakanywa. Sikwavile kubo ukuba ezi zinto ziphucula umgangatho wobomi, ezazilawula iimpendulo zabathathi-nxaxheba bethu azifane zibe sesikalini kwaye nazo kufuneka zifakwe. Njengokuba nentlonipho, ukufumana inkxaso kusapho nakubanakekeli.

UGqr. Sara Schaefer: Ucinga ukuba umsebenzi wakho ufanele ube nefuthe njani kunyango lwabantu abanesifo sikaParkinson?

UDkt. Connie Marras: Ndicinga ukuba njengabagqirha sihlala sigxila kakhulu kwiimpawu zomzimba. Ngokwesiqhelo ukhathalelo lwethu lulawulwa kukuzama ukujongana neengxaki zomzimba, akunjalo? Ukuba sinokuchaphazela amayeza kunye nokungenelela okungekuko okwezonyango esinakho. Kodwa ndicinga ukuba [00:14:00] into esingayenzi kakuhle kukuzama ukuxhasa abantu abanesifo sikaParkinson kubuchule babo bokwenza izinto ezibanika uvuyo. Kwaye ukuze senze oko, ndicinga ukuba ukuchitha ixesha kwangethuba kubudlelwane bakho nezigulana ukuze ufumane ukuba yintoni ebanika uvuyo ibalulekile kwaye inokufundisa iincoko zakho kamva. Mhlawumbi kuya kunceda kakhulu ekwakheni ubudlelwane bakho nesigulana sakho, kwaye kusincede sigxile kwizinto eziya kubaluleka ngokwenene kubo.

Ngoko ke ukuba ndibona ukuba isigulane sam sinokuphazamiseka okukhulu kokuphumla, ndingaziva ndinyanzelekile ukuba nditshintshe amayeza aso ukuze ndizame ukulungisa loo nto, kodwa ukuqonda ukuba yintoni impembelelo yoko kuso kwaye nokuba ingaba kubaluleke na okanye akunjalo, kwaye mhlawumbi ayisiyiyo eyona nto ibalulekileyo kuso, ndicinga ukuba ibaluleke kakhulu.

Kwaye, imisebenzi abanokuyifuna ukuze bayenze ukuze bonwabe ngokwenene ngosuku lwabo inokuba yinto ephambili [00:15:00] kwiinjongo zakho zonyango kumntu lowo. Ezo zizinto endicinga ukuba zingatshintsha indlela esithetha ngayo nezigulana zethu.

UGqr. Sara Schaefer: Ndiyavuma ngokupheleleyo. Ndizama ukuzifaka zonke ezo zinto kutyelelo lwam lokuqala nesigulana esineParkinson's ndize ndizifake kwimbali yoluntu ukuze zihlale zikho ngonaphakade kum, uyazi, uthando lwabo lwe-pickleball okanye nantoni na enokuba yiyo.

UDkt. Connie Marras: Kunene.

UGqr. Sara Schaefer: Ucinga ukuba kukho umyalezo apha oya kwizigulana zethu, ngaba kukho izigulana ezinokuba zimamele le podcast ofuna ukuba ziyisuse?

UDkt. Connie Marras: Ewe. Ndicinga ukuba ukuba bafuna ukufumana okuninzi kutyelelo lwabo kugqirha wabo wezempilo, banokugxila kwizinto ezibaphazamisa kakhulu umgangatho wobomi babo, kwaye bangavumeli ugqirha wezempilo ukuba aphazamiseke xa ethetha kakhulu ngezinto ezingabalulekanga.

Ngoko ke ekugqibeleni kukunyamekela kwabo okubalulekileyo. Kwaye ungavumeli iingcali zezempilo [00:16:00] ziqhube ibhasi ngokungathi kunjalo. Ukubeka iinjongo eziya kuba negalelo ekwanelisekeni kwabo ebomini kuya kuba luncedo. Kwaye, wabelane ngezi njongo neengcali zezempilo ukuze zikuncede ukufezekisa oko.

Ndicinga ukuba oko kuya kunceda lonke unxibelelwano lusebenze njengeqela kwaye lufumane iziphumo ezilungileyo.

UGqr. Sara Schaefer: Ingcebiso entle kakhulu. Enkosi ngokujoyina nathi. Ngaba unayo enye into ofuna ukuyongeza ngaphambi kokuba sivale?

UDkt. Connie Marras: Hayi, ndiyabulela nje ngomdla wakho kweli phepha kwaye ndiyathemba ukuba lo msebenzi ungasinceda silinganise ngcono umgangatho wobomi ngendlela enentsingiselo ngokwenene kwizigulane zethu kwaye siphucule uphando esilwenzayo kwaye silwenze lube lolufanelekileyo ngakumbi.

UGqr. Sara Schaefer: Ewe, ndiyayithanda indlela obuyela ngayo kubantu esibenzela konke oku. Siyavuyisana nawe ngephepha lakho.

UDkt. Connie Marras: Enkosi kakhulu. [00:17:00]