{"id":35147,"date":"2020-10-21T16:38:49","date_gmt":"2020-10-21T14:38:49","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=35147"},"modified":"2020-10-21T16:38:51","modified_gmt":"2020-10-21T14:38:51","slug":"dve-tretiny-lidi-s-parkinsonovou-nemoci-nemaji-dost-informaci-o-lecbe-proti-informacni-blokade-pomuze-portal-jaknaparkinsona-cz","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=35147","title":{"rendered":"Dv\u011b t\u0159etiny lid\u00ed s Parkinsonovou nemoc\u00ed nemaj\u00ed dost informac\u00ed o l\u00e9\u010db\u011b. Proti \u201einforma\u010dn\u00ed blok\u00e1d\u011b\u201c pom\u016f\u017ee port\u00e1l jaknaparkinsona.cz"},"content":{"rendered":"\n

Praha, 21.\u0159\u00edjna 2020 \u2013 T\u00e9m\u011b\u0159 70 % dot\u00e1zan\u00fdch pacient\u016f s Parkinsonovou chorobou nedost\u00e1v\u00e1 od sv\u00fdch l\u00e9ka\u0159\u016f \u00fapln\u00e9 informace o v\u0161ech mo\u017enostech l\u00e9\u010dby. Vypl\u00fdv\u00e1 to z dotazn\u00edku, kter\u00fd mezi sv\u00e9 \u010dleny rozeslalo pacientsk\u00e9 sdru\u017een\u00ed Parkinson-Helpz.s. V souvislosti s malou informovanost\u00ed upozor\u0148uje na to, \u017ee lid\u00e9 ztr\u00e1c\u00ed \u0161anci se rozhodnout, zda by cht\u011bli vyu\u017e\u00edt n\u011bkterou z mo\u017enost\u00ed, je\u017e jim modern\u00ed medic\u00edna nab\u00edz\u00ed. \u010casto se dozv\u00ed o l\u00e9\u010db\u011b pozd\u011b, kdy u\u017e ji nemohou \u2013 kv\u016fli sv\u00e9mu zhor\u0161uj\u00edc\u00edmu se stavu \u2013 vyu\u017e\u00edt. Tomu se sna\u017e\u00ed sdru\u017een\u00ed p\u0159edej\u00edt a spustilo str\u00e1nky https:\/\/jaknaparkinsona.cz<\/a>, kter\u00e9 jsou ur\u010deny p\u0159edev\u0161\u00edm pacient\u016fm ve st\u0159edn\u00ed f\u00e1zi onemocn\u011bn\u00ed \u2013 tedy obvykle po v\u00edce ne\u017e t\u0159ech letech od rozvoje komplikac\u00ed spojen\u00fdch s l\u00e9\u010dbou.<\/p>\n\n\n\n

\u201eL\u00e9ka\u0159 nem\u00e1 pr\u00e1vo sv\u00fdm ml\u010den\u00edm rozhodnout za pacienta, zda se podrobit z\u00e1kroku, \u010di nikoli. Tato zodpov\u011bdnost n\u00e1le\u017e\u00ed pacientovi samotn\u00e9mu a k tomu mus\u00ed m\u00edt dost informac\u00ed. To se bohu\u017eel ned\u011bje, a proto jsme jako odpov\u011b\u010f na tuto \u201einforma\u010dn\u00ed blok\u00e1du\u201c vyvinuli port\u00e1l https:\/\/jaknaparkinsona.cz<\/a>, kter\u00fd m\u00e1 informovat pacienty ve st\u0159edn\u011b pokro\u010dil\u00e9 f\u00e1zi nemoci o v\u0161ech metod\u00e1ch pokro\u010dil\u00e9 l\u00e9\u010dby. Tedy nap\u0159\u00edklad o hlubok\u00e9 mozkov\u00e9 stimulaci (DBS) a pumpov\u00fdch syst\u00e9mech, kter\u00fdmi se l\u00e9k zav\u00e1d\u00ed p\u0159\u00edmo do tenk\u00e9ho st\u0159eva nebo pod k\u016f\u017ei,\u201c popisuje Romana Sk\u00e1la-Rosenbaum, p\u0159edsedkyn\u011b pacientsk\u00e9 organizace Parkinson-Helpz.s, kter\u00e1 s pomoc\u00ed dotazn\u00edku sesb\u00edrala 105 odpov\u011bd\u00ed.<\/p>\n\n\n\n

N\u00e1v\u0161t\u011bvn\u00edci port\u00e1lu https:\/\/jaknaparkinsona.cz<\/a>mohou vyplnit dotazn\u00edk, kter\u00fd je \u2013 pokud spln\u00ed zdravotn\u00ed p\u0159edpoklady \u2013 propoj\u00ed p\u0159\u00edmo s neurologem ve specializovan\u00e9m, tzv. extrapyramidov\u00e9m centru nap\u0159\u00edklad v Praze nebo v Brn\u011b, kter\u00e9 se opera\u010dn\u00edmi mo\u017enostmi l\u00e9\u010dby Parkinsona zab\u00fdvaj\u00ed. Odpov\u011bdi by se pacient m\u011bl do\u010dkat do maxim\u00e1ln\u011b 14 dn\u00ed. <\/em>L\u00e9ka\u0159 d\u00edky vhodn\u011b volen\u00fdm ot\u00e1zk\u00e1m ve formul\u00e1\u0159i zhodnot\u00ed stav pacienta a p\u0159\u00edpadn\u011b jej pozve na vy\u0161et\u0159en\u00ed. <\/p>\n\n\n\n

Parkinsonovou nemoc\u00ed v \u010cesku odhadem trp\u00ed 30 000\u201350 000 lid\u00ed. Pr\u016fm\u011brn\u00fd v\u011bk lid\u00ed p\u0159i prvn\u00edch projevech onemocn\u011bn\u00ed se pohybuje kolem 60 let, 10 % pacient\u016f v\u0161ak onemocn\u00ed p\u0159ed 40. rokem a 10 % po 75. roce. Pro tuto neurodegenerativn\u00ed nemoc je typick\u00e9 zpomalen\u00ed pohyb\u016f, t\u0159es, ztuhlost sval\u016f \u010di poruchy rovnov\u00e1hy a pozd\u011bji v\u016fl\u00ed neovlivniteln\u00fd pohybov\u00fd neklid. <\/p>\n\n\n\n

\u201eNemoc zp\u016fsobuje odum\u00edr\u00e1n\u00ed mozkov\u00fdch bun\u011bk, kter\u00e9 produkuj\u00ed p\u0159edev\u0161\u00edm dopamin. \u010clov\u011bk tak postupn\u011b ztr\u00e1c\u00ed kontrolu nad sv\u00fdmi pohyby. Sou\u010dasn\u00e1 medic\u00edna neum\u00ed Parkinsonovu nemoc vyl\u00e9\u010dit, ale z\u00e1sadn\u011b m\u00edrn\u00ed p\u0159\u00edznaky,\u201c popisujeprof. MUDr. Robert Jech, Ph.D., vedouc\u00ed l\u00e9ka\u0159 centra pro interven\u010dn\u00ed l\u00e9\u010dbu motorick\u00fdch poruch Neurologick\u00e9 kliniky 1. l\u00e9ka\u0159sk\u00e9 fakulty UK a VFN v Praze. <\/p>\n\n\n\n

Podle prof. Jecha by jenom DBS mohlo podstoupit p\u0159ibli\u017en\u011b 15\u201320 % pacient\u016f s Parkinsonovou nemoc\u00ed, podobn\u011b jako zaveden\u00ed pump, re\u00e1ln\u011b se tak d\u011bje u pouh\u00e9ho zlomku z nich \u2013 do 5 %. \u201eNe v\u0161ichni kolegov\u00e9 jsou pln\u011b obezn\u00e1meni se v\u0161emi mo\u017enostmi l\u00e9\u010dby a mnohdy se myln\u011b domn\u00edvaj\u00ed, \u017ee jde v\u00fdhradn\u011b o l\u00e9\u010dbu pozdn\u00edho stadia, tak\u017ee do centra doraz\u00ed p\u0159\u00edli\u0161 pozd\u011b. U \u0159ady z nich pak ji\u017e z\u00e1krok nelze prov\u00e9st,\u201c uv\u00e1d\u00ed prof. Jech. Tomu odpov\u00eddaj\u00ed i data z dotazn\u00edku, podle nich\u017e t\u0159etinu pacient\u016f poslal l\u00e9ka\u0159 do extrapyramidov\u00e9ho centra a\u017e na jejich v\u00fdslovnou \u017e\u00e1dost.<\/p>\n\n\n\n

\u201eVzhledem k nedostate\u010dn\u00e9 informovanosti a n\u011bkdy i omezen\u00fdm kapacit\u00e1m podstoup\u00ed operace ro\u010dn\u011b jednotky procent. Ide\u00e1ln\u00ed pro na\u010dasov\u00e1n\u00ed takov\u00e9ho z\u00e1kroku je 3\u20137 let od rozvoje motorick\u00fdch komplikac\u00ed. Toto \u201eokno\u201c se pozd\u011bji uzav\u00edr\u00e1 a operace nen\u00ed mo\u017en\u00e1. Kv\u016fli n\u00edzk\u00e9 informovanosti tak vhodn\u00fd \u010das na l\u00e9\u010dbu prop\u00e1snou mnoz\u00ed z t\u011bch, kter\u00fdm by v\u00fdrazn\u011b zkvalitnila \u017eivot,\u201c dod\u00e1v\u00e1 Romana Sk\u00e1la-Rosenbaum.<\/p>\n\n\n\n

Celou situaci komplikuje i koronavirus, kter\u00fd v\u00fdrazn\u011b omezil \u010dinnost pracovi\u0161\u0165 a l\u00e9ka\u0159\u016f. \u201eStejn\u011b jako na ja\u0159e odkl\u00e1d\u00e1me v\u0161echny neakutn\u00ed operace a z\u00e1kroky a bohu\u017eel jsou mezi nimi i ty, na kter\u00e9 pacienti s Parkinsonovou nemoc\u00ed \u010dekaj\u00ed mnohdy p\u0159es rok,\u201c potvrzuje prof. Jech. Podle n\u011bj je t\u0159eba person\u00e1ln\u011b pos\u00edlit specializovan\u00e1 pracovi\u0161t\u011b. <\/p>\n\n\n\n

Loni se uskute\u010dnilo 65 nov\u00fdch implantac\u00ed DBS a 75 v\u00fdm\u011bn vybit\u00fdch neurostimul\u00e1tor\u016f a 143 zaveden\u00ed pumpov\u00fdch syst\u00e9m\u016f \u2013 letos dle odhadu odborn\u00edk\u016f budou \u010d\u00edsla je\u0161t\u011b ni\u017e\u0161\u00ed \u2013 pr\u00e1v\u011b kv\u016fli pandemii. <\/p>\n\n\n\n

O Parkinson-Helpz.s. (P-H)<\/strong> <\/p>\n\n\n\n

Seznamuje \u0161irokou ve\u0159ejnost s obt\u00ed\u017eemi Parkinsonovy nemoci, p\u0159isp\u00edv\u00e1 ke zkvalitn\u011bn\u00ed \u017eivota lid\u00ed s touto chorobou a podporuje komunitn\u00ed \u017eivot nemocn\u00fdch v regionech. P-H rozv\u00edj\u00ed aktivity pro nemocn\u00e9 a jejich bl\u00edzk\u00e9, po\u0159\u00e1d\u00e1 osv\u011btov\u00e9 akce, kampan\u011b, vzd\u011bl\u00e1vac\u00ed webin\u00e1\u0159e, spolupracuje s odborn\u00edky z l\u00e9ka\u0159sk\u00fdch i nel\u00e9ka\u0159sk\u00fdch profes\u00ed, v neposledn\u00ed \u0159ad\u011b publikuje. Extrapyramidov\u00e1 sekce \u010cesk\u00e9 neurologick\u00e9 spole\u010dnosti p\u0159i \u010cesk\u00e9 l\u00e9ka\u0159sk\u00e9 komo\u0159e Jana Evangelisty Purkyn\u011b vyj\u00e1d\u0159ila \u010dinnosti Parkinson-Help podporu. Organizace je \u010dlenem EuropanParkinson\u00b4sDiseaseAssociation. V\u00edce informac\u00ed na www.parkinson-help.cz<\/em><\/a> a na https:\/\/jaknaparkinsona.cz<\/em><\/a>.\u00a0<\/em><\/p>\n\n\n\n

Tiskov\u00e1 zpr\u00e1va<\/p>\n","protected":false},"excerpt":{"rendered":"

Praha, 21.\u0159\u00edjna 2020 \u2013 T\u00e9m\u011b\u0159 70 % dot\u00e1zan\u00fdch pacient\u016f s Parkinsonovou chorobou nedost\u00e1v\u00e1 od sv\u00fdch l\u00e9ka\u0159\u016f \u00fapln\u00e9 informace o v\u0161ech mo\u017enostech l\u00e9\u010dby. Vypl\u00fdv\u00e1 to z […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":3721,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-35147","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/35147","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=35147"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/35147\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/3721"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=35147"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=35147"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=35147"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}