{"id":21124,"date":"2015-05-01T07:55:54","date_gmt":"2015-05-01T05:55:54","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=21124"},"modified":"2015-05-01T07:55:54","modified_gmt":"2015-05-01T05:55:54","slug":"mluvi-jen-ocima-uz-15-let-zije-s-grossovou-nemoci","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=21124","title":{"rendered":"Mluv\u00ed jen o\u010dima. U\u017e 15 let \u017eije s Grossovou nemoc\u00ed"},"content":{"rendered":"

Z cel\u00e9ho t\u011bla dok\u00e1\u017ee h\u00fdbat pouze o\u010dima a n\u011bkter\u00fdmi mimick\u00fdmi svaly. Kn\u011bz Filip Stajner (foto) vid\u00ed, sly\u0161\u00ed a mysl\u00ed, funk\u010dn\u00ed jsou i vnit\u0159n\u00ed org\u00e1ny, ale to je v\u0161echno.<\/strong><\/p>\n

Kn\u011bz Filip Stajner onemocn\u011bl vz\u00e1cnou chorobou ALS, na kterou ned\u00e1vno zem\u0159el Stanislav Gross. P\u0159esto\u017ee l\u00e9ka\u0159i n\u011bkolikr\u00e1t Stajnerovi p\u0159edpov\u011bd\u011bli brzkou smrt, \u017eije s nemoc\u00ed u\u017e 15 let.
\nV nevelk\u00e9 m\u00edstnosti jsou sly\u0161et tich\u00e9 periodick\u00e9 zvuky d\u00fdchac\u00edho p\u0159\u00edstroje. Z nehybn\u00e9ho t\u011bla hled\u00ed pronikav\u00e9 hn\u011bd\u00e9 o\u010di. Nahrazuj\u00ed mu hlasivky. Otec Stajner se s\u00e1m nenadechne ani nedok\u00e1\u017ee polykat. Trp\u00ed bolestmi. J\u00eddlo p\u0159ij\u00edm\u00e1 sondou do \u017ealudku a d\u00fdch\u00e1 pomoc\u00ed plicn\u00edho ventil\u00e1toru. „Kdybych si myslel, \u017ee jsem tady n\u00e1hodou, \u017ee poch\u00e1z\u00edm z opice a m\u016fj \u017eivot nem\u00e1 vy\u0161\u0161\u00ed ur\u010den\u00ed, d\u00e1vno bych sp\u00e1chal sebevra\u017edu. \u010clov\u011bk \u017eij\u00edc\u00ed t\u011blesn\u00fdmi po\u017eitky by takovou situaci asi nezvl\u00e1dl,“ \u0159\u00edk\u00e1 pades\u00e1tilet\u00fd mu\u017e.<\/p>\n

Velkou oporu na\u0161el v pe\u010dovatelce Jarom\u00ed\u0159e Machovcov\u00e9, kter\u00e1 si ho vzala dom\u016f do Pod\u011bbrad. Domlouvaj\u00ed se spolu „o\u010dn\u00ed \u0159e\u010d\u00ed“. P\u00e1ter ji vymyslel, jakmile se dozv\u011bd\u011bl, \u017ee mu nemoc \u010dasem znemo\u017en\u00ed mluvit. Tohle mu vad\u00ed nejv\u00edc, p\u0159esto si poradil. Abecedu rozd\u011blil do \u010dty\u0159 \u0159\u00e1dk\u016f. Z nich mu d\u00e1 pe\u010dovatelka nejprve na v\u00fdb\u011br, pot\u00e9 postupn\u011b proberou jednotliv\u00e1 p\u00edsmenka a otec Stajner mrknut\u00edm oka vybere to prav\u00e9. \u017dena postupn\u011b z p\u00edsmenek skl\u00e1d\u00e1 slova a v\u011bty. Jde to neskute\u010dn\u011b pomalu, ale jde to.<\/p>\n

„Pro zdravotn\u00ed p\u00e9\u010di pou\u017e\u00edv\u00e1me zase \u010d\u00edselnou \u0159adu, kter\u00e1 obsahuje 54 polo\u017eek. Tak t\u0159eba p\u011btka znamen\u00e1 vym\u011bnit pol\u0161t\u00e1\u0159 pod hlavou, jin\u00fdmi \u010d\u00edsly \u017e\u00e1d\u00e1 pacient ut\u0159en\u00ed slin, nata\u017een\u00ed pa\u017ee anebo p\u0159e\u010dten\u00ed poh\u00e1dky. Vid\u00edte, tohle je m\u016fj tah\u00e1k, otec Filip zn\u00e1 \u010d\u00edseln\u00e9 pokyny zpam\u011bti,“ ukazuje Jarom\u00edra Machovcov\u00e1 popsan\u00fd pap\u00edr.
\nPoprv\u00e9 se spolu setkali v Bosn\u011b v roce 1996 na mari\u00e1nsk\u00e9m poutn\u00edm m\u00edst\u011b. To byl je\u0161t\u011b zdrav\u00fd jako \u0159\u00edpa.<\/p>\n

O t\u0159i roky pozd\u011bji \u017eenu zas\u00e1hla p\u0159edtucha, \u017ee p\u00e1ter bude hodn\u011b trp\u011bt. Nejprve za\u010dal ztr\u00e1cet rovnov\u00e1hu. Kdy\u017e ho nav\u0161t\u00edvila v roce 2002, l\u00e9ka\u0159i p\u0159edpokl\u00e1dali, \u017ee do t\u0159\u00ed m\u011bs\u00edc\u016f zem\u0159e. Myslel si to i on. „Uspo\u0159\u00e1dal jsem proto svoji poz\u016fstalost. Co jsem nepot\u0159eboval, to jsem rozdal. P\u00edsemnosti a korespondenci jsem sp\u00e1lil. M\u011bl jsem ohled na ty, kte\u0159\u00ed by po mn\u011b m\u011bli ukl\u00edzet.“ Sp\u00e1nek mu vylep\u0161ilo pivo Jarom\u00edra Machovcov\u00e1 pro n\u011bj s v\u011b\u0159\u00edc\u00edmi nejd\u0159\u00edve hledala m\u00edsto, kde by mohl v pokoji um\u0159\u00edt. Jen\u017ee on se m\u011bl k \u017eivotu. Kdy\u017e v roce 2005 pro\u0161el klinickou smrt\u00ed, museli ho napojit na plicn\u00ed ventil\u00e1tor, a tak \u00fapln\u011b p\u0159estal mluvit. Na odd\u011blen\u00ed chronick\u00e9 resuscita\u010dn\u00ed a intenzivn\u00ed p\u00e9\u010de, kter\u00e9 pacienti opou\u0161t\u011bj\u00ed t\u00e9m\u011b\u0159 v\u00fdlu\u010dn\u011b p\u0159es m\u00e1rnici, udivil l\u00e9ka\u0159e p\u0159\u00e1n\u00edm, \u017ee chce dom\u016f.<\/p>\n

„Tehdy jsem se ho zeptala: Chcete pokra\u010dovat v \u017eivot\u011b i za t\u011bchto podm\u00edtek? Trvale napojen\u00fd na ventil\u00e1tor? O\u010dima mi dal na srozum\u011bnou, \u017ee ano. \u017de se chce vr\u00e1tit do dom\u00e1c\u00ed p\u00e9\u010de. To pro m\u011b bylo z\u00e1sadn\u00ed, a tak jsme ho vzali z nemocnice zase k n\u00e1m do Pod\u011bbrad,“ popisuje Jarom\u00edra Machovcov\u00e1.
\nZ p\u0159\u00edsp\u011bvk\u016f dobrovoln\u00edk\u016f opat\u0159ili d\u00fdchac\u00ed p\u0159\u00edstroj, v nemocnici ji nau\u010dili v\u0161e pot\u0159ebn\u00e9. Pacient se neobejde bez sondy do \u017ealudku, ods\u00e1va\u010dky hlen\u016f, kanyl a dal\u0161\u00edho zdravotnick\u00e9ho materi\u00e1lu. V nemocnici by tato p\u00e9\u010de p\u0159i\u0161la m\u011bs\u00ed\u010dn\u011b na 400 tis\u00edc korun.<\/p>\n

Jarom\u00edra Machovcov\u00e1 se star\u00e1 na pln\u00fd \u00favazek, prakticky 24 hodin denn\u011b. Pom\u00e1haj\u00ed dal\u0161\u00ed v\u011b\u0159\u00edc\u00ed i nev\u011b\u0159\u00edc\u00ed dobrovoln\u00edci. Dvan\u00e1ctitis\u00edcov\u00fd p\u0159\u00edsp\u011bvek na p\u00e9\u010di o bezmocn\u00e9ho a pacient\u016fv invalidn\u00ed d\u016fchod pokryj\u00ed b\u011b\u017en\u00e9 n\u00e1klady dom\u00e1cnosti. Filipa Stajnera nav\u0161t\u011bvuj\u00ed rodi\u010de i sourozenci s rodinami a mnoho p\u0159\u00e1tel.
\nD\u0159\u00edve spal otec Stajner v noci maxim\u00e1ln\u011b dv\u011b hodiny a pak pot\u0159eboval obsluhu. D\u00edky \u010dtvrtince piva te\u010f vydr\u017e\u00ed a\u017e \u010dty\u0159i p\u011bt hodin. S pe\u010dovatelkou maj\u00ed program v\u011bt\u0161inou do p\u016flnoci. P\u0159es den pracuje pro sdru\u017een\u00ed, kter\u00e9 zalo\u017eil. V\u011bnuje se n\u00e1v\u0161t\u011bv\u00e1m. O\u010dima diktuje texty. Jindy mu pe\u010dovatelka p\u0159ed\u010d\u00edt\u00e1 dopisy a on „namrk\u00e1“ odpov\u011bdi. Vn\u011bj\u0161\u00ed sv\u011bt se mu sice zhroutil, o to v\u00edce se v\u0161ak upnul k tomu vnit\u0159n\u00edmu. Koncipuje k\u00e1z\u00e1n\u00ed. D\u00edky znalosti \u0159ady jazyk\u016f p\u0159ekl\u00e1d\u00e1 duchovn\u00ed literaturu. Nadiktoval i jednu knihu. „P\u00e1ter je pro mne strhuj\u00edc\u00ed svou opravdovost\u00ed. Takov\u00fd \u017eivot stoj\u00ed za to \u017e\u00edt,“ vysv\u011btluje \u017eena. Grossova smrt ho p\u0159ekvapila Jeho den za\u010d\u00edn\u00e1 v\u011bt\u0161inou kolem p\u00e1t\u00e9, rann\u00ed hygienou a sn\u00eddan\u00ed. O tom, \u017ee si na j\u00eddle nepochutn\u00e1, dok\u00e1\u017ee i za\u017eertovat. Nap\u0159\u00edklad pozn\u00e1mkou, jak\u00e1 je v\u00fdhoda, \u017ee mu pe\u010den\u00ed holubi l\u00e9taj\u00ed rovnou do \u017ealudku. Pe\u010dovatelka mu mixuje j\u00eddlo, kter\u00e9 sama uva\u0159\u00ed. P\u0159es den se kn\u011bz modl\u00ed, ve chv\u00edl\u00edch volna poslouch\u00e1 Nov\u00fd z\u00e1kon, nahran\u00e9 m\u00e1 i \u017eivotopisy svat\u00fdch.<\/p>\n

Dala by se takov\u00e1 nemoc vydr\u017eet i bez v\u00edry v Boha? Na tuto ot\u00e1zku m\u00e1 p\u00e1ter pohotovou odpov\u011b\u010f: „Takov\u00e9mu \u010dlov\u011bku pom\u016f\u017ee, kdy\u017e ho m\u00e1 n\u011bkdo opravdu r\u00e1d a v\u011bnuje mu sv\u016fj \u010das. Nejstra\u0161n\u011bj\u0161\u00ed formou utrpen\u00ed je osamocenost,“ odpov\u00edd\u00e1 prost\u0159ednictv\u00edm pe\u010dovatelky.<\/p>\n

Smrt Stanislava Grosse ho p\u0159ekvapila. Hlavn\u011b t\u00edm, jak brzy p\u0159i\u0161la. „Myslel jsem, \u017ee bude m\u00edt podobn\u00fd osud jako j\u00e1. Upokojilo m\u011b ale, \u017ee p\u0159ed smrt\u00ed p\u0159ijal Krista.“
\nJe lep\u0161\u00ed vl\u00e1dnout mozkem v tot\u00e1ln\u011b nemohouc\u00edm t\u011ble, anebo naopak? Filip Stajner si racion\u00e1ln\u011b rozv\u00e1\u017eil, co mu nemoc vezme a co mu z\u016fstane. A toho druh\u00e9ho dok\u00e1zal vrchovat\u011b vyu\u017e\u00edt. V\u00ed tak\u00e9 hodn\u011b o lidsk\u00e9m t\u011ble. „Mimo jin\u00e9 mi v prvn\u00edch letech do detailu popsal sv\u00e9 stavy du\u0161en\u00ed, kter\u00e9 m\u011bl i Stanislav Gross. Z\u00e1rove\u0148 mi \u0159ekl, co s n\u00edm m\u00e1m v takov\u00e9 chv\u00edli ud\u011blat. Vlastn\u011b si m\u011b jako pe\u010dovatelku za ta l\u00e9ta s\u00e1m vychoval,“ vypr\u00e1v\u00ed Jarom\u00edra Machovcov\u00e1.<\/p>\n

Za Filipem Stajnerem jezd\u00ed lid\u00e9 z cel\u00e9ho sv\u011bta. Hl\u00e1s\u00ed se mu s pomoc\u00ed nebo si p\u0159ich\u00e1zej\u00ed pro duchovn\u00ed radu a \u00fat\u011bchu. On m\u00e1 dostatek \u010dasu probrat s nimi jejich probl\u00e9my do hloubky. Tv\u00e1\u0159\u00ed v tv\u00e1\u0159 jeho utrpen\u00ed jejich bolesti sl\u00e1bnou. Nap\u0159\u00edklad jeden mu\u017e mu sklesle l\u00ed\u010dil, \u017ee se rychle unav\u00ed. Pe\u010dovatelka vzpom\u00edn\u00e1, jak se p\u00e1ter usm\u00edval a pak jenom \u0159ekl: „V\u00ed\u0161, j\u00e1 bych tu tvoji boreli\u00f3zu bral.“<\/p>\n

Ivana Kar\u00e1skov\u00e1, report\u00e9rka MF DNES<\/p>\n","protected":false},"excerpt":{"rendered":"

Z cel\u00e9ho t\u011bla dok\u00e1\u017ee h\u00fdbat pouze o\u010dima a n\u011bkter\u00fdmi mimick\u00fdmi svaly. Kn\u011bz Filip Stajner (foto) vid\u00ed, sly\u0161\u00ed a mysl\u00ed, funk\u010dn\u00ed jsou i vnit\u0159n\u00ed org\u00e1ny, ale […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":21139,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-21124","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zdravi"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/21124","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=21124"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/21124\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/21139"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=21124"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=21124"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=21124"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}