{"id":36247,"date":"2021-06-21T15:08:38","date_gmt":"2021-06-21T13:08:38","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=36247"},"modified":"2021-06-21T15:08:40","modified_gmt":"2021-06-21T13:08:40","slug":"dnes-si-preji-aby-se-muj-zdravotni-stav-nezhorsoval-rika-muz-s-diagnozou-als","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=36247","title":{"rendered":"Dnes si p\u0159eji, aby se m\u016fj zdravotn\u00ed stav nezhor\u0161oval, \u0159\u00edk\u00e1 mu\u017e s diagn\u00f3zou ALS"},"content":{"rendered":"\n

ilustra\u010dn\u00ed foto<\/em><\/p>\n\n\n\n

Lubom\u00edr Kulhav\u00fd z \u010cesk\u00fdch Libchav byl je\u0161t\u011b p\u0159ed \u010dty\u0159mi roky aktivn\u00ed mu\u017e v nejlep\u0161\u00edch letech. S man\u017eelkou cestovali, s\u00e1m se zaj\u00edmal o motorky, se synem organizoval klubov\u00e9 srazy automobil\u016f Alfa Romeo a pracoval ve firm\u011b, kter\u00e1 vyr\u00e1b\u00ed autobusy. \u017divot se Lubom\u00edrovi i cel\u00e9 jeho rodin\u011b zm\u011bnil v roce 2017.<\/p>\n\n\n\n

V\u0161e za\u010dalo brn\u011bn\u00edm mal\u00ed\u010dku a prsten\u00ed\u010dku u lev\u00e9 ruky, pozd\u011bji\nse za\u010dal objevovat t\u0159es v ruce. \u201eNa podzim roku 2017 se man\u017eel nechal\nhospitalizovat v Nemocnici U Svat\u00e9 Anny v Brn\u011b. Po t\u00fddnu mu byla sd\u011blena\ndiagn\u00f3za – amyotrofick\u00e1 later\u00e1ln\u00ed skler\u00f3za. Nemoc, kv\u016fli kter\u00e9 degraduje\nsvalstvo,\u201c vypr\u00e1v\u00ed man\u017eelka Lubom\u00edra Alena Kulhav\u00e1.<\/p>\n\n\n\n

Nyn\u00ed je Lubom\u00edr z\u00e1visl\u00fd na celodenn\u00ed pomoci druh\u00fdch. Man\u017eelka\nmu pom\u00e1h\u00e1 se vst\u00e1v\u00e1n\u00edm z postele, obl\u00e9k\u00e1n\u00edm, j\u00eddlem i s pit\u00edm. \u201eNejv\u00edce ho\ntr\u00e1p\u00ed, \u017ee nem\u016f\u017ee chodit do pr\u00e1ce, sportovat, v\u011bnovat se naplno rodin\u011b, hlavn\u011b\nvnu\u010dce. Nem\u016f\u017ee se zapojit do \u017e\u00e1dn\u00e9 pr\u00e1ce, mus\u00ed pouze p\u0159ihl\u00ed\u017eet,\u201c dod\u00e1v\u00e1.<\/p>\n\n\n\n

Pot\u00e9, co l\u00e9ka\u0159i Lubom\u00edrovi sd\u011blili diagn\u00f3zu, neztr\u00e1cel\nnad\u011bje a st\u00e1le pracoval v obchodn\u00edm odd\u011blen\u00ed spole\u010dnosti, kter\u00e1 vyr\u00e1b\u00ed\nautobusy. Dod\u00e1val vozy koncov\u00fdm z\u00e1kazn\u00edk\u016fm, \u0161kolil obsluhu a \u00fadr\u017ebu. Od l\u00e9ta\n2018 se v\u0161ak jeho stav za\u010dal rapidn\u011b zhor\u0161ovat. Nejv\u00edce trp\u011bla jemn\u00e1 motorika u\nprst\u016f na lev\u00e9 ruce a zanedlouho se p\u0159idala tak\u00e9 lev\u00e1 noha, na kter\u00e9 za\u010dalo\nub\u00fdvat svalstvo. Lubom\u00edr se v\u0161ak ani se zhor\u0161uj\u00edc\u00edm se zdravotn\u00edm stavem\nnevzd\u00e1val, d\u00e1l pracoval, doch\u00e1zel na rehabilitace a b\u011bhem roku 2018 odjel tak\u00e9\nna m\u011bs\u00ed\u010dn\u00ed pobyt do l\u00e1zn\u00ed.<\/p>\n\n\n\n

Na za\u010d\u00e1tku roku 2019 v\u0161ak p\u0159i\u0161el pracovn\u00ed \u00faraz, kdy\u017e\nne\u0161\u0165astn\u011b uklouzl po uje\u017ed\u011bn\u00e9m sn\u011bhu a zp\u016fsobil si \u00faraz hlavy. \u201eMusel\npodstoupit operaci, ale mimo jizvy na hlav\u011b na\u0161t\u011bst\u00ed \u00faraz nezanechal \u017e\u00e1dn\u00e9\nn\u00e1sledky,\u201c \u0159\u00edk\u00e1 man\u017eelka s t\u00edm, \u017ee na p\u016fvodn\u00ed pracovn\u00ed m\u00edsto se v\u0161ak jej\u00ed\nman\u017eel u\u017e nevr\u00e1til.<\/p>\n\n\n\n

Za\u010dal tvo\u0159it specifikace autobus\u016f podle po\u017eadavk\u016f z\u00e1kazn\u00edka\na d\u00edky podpo\u0159e spolupracovn\u00edk\u016f tak mohl d\u00e1le pracovat.. \u201eKolegov\u00e9 a kolegyn\u011b v\npr\u00e1ci vych\u00e1zeli man\u017eelovi vst\u0159\u00edc a pom\u00e1hali s obl\u00e9k\u00e1n\u00edm, s p\u0159\u00edpravou n\u00e1poj\u016f i\nj\u00eddla. Zdravotn\u00ed stav se ale zhor\u0161oval, man\u017eel chodil s h\u016flkou, n\u011bkolikr\u00e1t i\nupadl, \u0161patn\u011b zvl\u00e1dal pr\u00e1ci s po\u010d\u00edta\u010dem v d\u016fsledku zhor\u0161uj\u00edc\u00ed se hybnosti\ncel\u00e9ho t\u011bla,\u201c popisuje Kulhav\u00e1 rychlost, s jakou nemoc postupovala.<\/p>\n\n\n\n

Kdybyste byl pokr\u00fdva\u010d, m\u00e1te n\u00e1rok na vy\u0161\u0161\u00ed stupe\u0148 invalidity<\/p>\n\n\n\n

A proto\u017ee zdravotn\u00ed stav u\u017e Lubom\u00edra v pr\u00e1ci p\u0159\u00edli\u0161\nomezoval, po\u017e\u00e1dal o pracovn\u00ed neschopnost. Zde v\u0161ak pro rodinu p\u0159i\u0161lo jedno z\nmnoha nemil\u00fdch p\u0159ekvapen\u00ed. Posudkov\u00fd l\u00e9ka\u0159 p\u0159iznal Lubom\u00edrovi pouze I. stupe\u0148\ninvalidity. \u201eKdybyste byl pokr\u00fdva\u010d, tak m\u00e1te III. stupe\u0148, ale jako referent\ndostanete I. stupe\u0148, vysv\u011btlila posudkov\u00e1 l\u00e9ka\u0159ka sv\u00e9 rozhodnut\u00ed. V sou\u010dasn\u00e9\ndob\u011b je ale man\u017eel u\u017e v invalidn\u00edm d\u016fchodu III. stupn\u011b,\u201c dod\u00e1v\u00e1 Lubom\u00edrova\n\u017eena.<\/p>\n\n\n\n

Lubom\u00edr a Alena vychovali dva syny. Star\u0161\u00ed z nich Tom\u00e1\u0161 \u017eije\nse svou rodinou v p\u0159\u00edzem\u00ed dvougenera\u010dn\u00edho domku a se svou man\u017eelkou pom\u00e1haj\u00ed\ntat\u00ednkovi s b\u011b\u017enou denn\u00ed obsluhou. \u201eP\u00e9\u010di o man\u017eela ale zvl\u00e1d\u00e1me dob\u0159e. Lubom\u00edr\nje komunikativn\u00ed a um\u00ed ud\u011blat legraci,\u201c vysv\u011btluje Alena s t\u00edm, \u017ee cel\u00e9 situaci\ntak nejv\u00edce pom\u00e1h\u00e1 smysl pro humor, kter\u00fd je rodin\u011b vlastn\u00ed.<\/p>\n\n\n\n

Lubom\u00edr se sna\u017e\u00ed s nemoc\u00ed bojovat, pravideln\u011b cvi\u010d\u00ed,\nrehabilituje a cel\u00e9 rodina nav\u00edc \u00fazce spolupracuje se spolkem Alsa, kter\u00fd\nsdru\u017euje pacienty a profesion\u00e1ly se z\u00e1jmem o amyotrofickou later\u00e1ln\u00ed skler\u00f3zu\n(ALS). Hlavn\u00edm c\u00edlem organizace je pr\u00e1v\u011b pomoc pacient\u016fm s ALS, tedy\nporadenstv\u00ed, konzultace vhodn\u00fdch terapi\u00ed a pomoc s vy\u0159izov\u00e1n\u00edm pom\u016fcek nebo\nt\u0159eba p\u0159\u00edsp\u011bvk\u016f.<\/p>\n\n\n\n

Rodin\u011b nyn\u00ed byla doktorem Pavlem Han\u010d\u00edkem doporu\u010dena\nexperiment\u00e1ln\u00ed l\u00e9\u010dba, je\u017e aktivuje svalov\u00e9 bu\u0148ky. P\u0159\u00edstroj Laser Lounge, kter\u00fd\nby Lubom\u00edrovi pomohl zpomalit ochablost svalstva, stoj\u00ed zhruba 80 tis\u00edc eur. Na\ntakovou investici v\u0161ak rodin\u011b nezb\u00fdvaj\u00ed pen\u00edze, byl j\u00ed proto nab\u00eddnut pron\u00e1jem\np\u0159\u00edstroje v hodnot\u011b dva tis\u00edce eur m\u011bs\u00ed\u010dn\u011b. O ten te\u010f rodina spole\u010dn\u011b s\norganizac\u00ed Alsa usiluje.<\/p>\n\n\n\n

P\u0159isp\u011bt rodin\u011b m\u016f\u017ee ka\u017ed\u00fd na transparentn\u00ed \u00fa\u010det\n238134439\/0600<\/p>\n\n\n\n

———–<\/p>\n\n\n\n

ALS \u2013 amyotrofick\u00e1 later\u00e1ln\u00ed skler\u00f3za zp\u016fsobuje postupnou degeneraci bun\u011bk ovl\u00e1daj\u00edc\u00edch pohyblivost sval\u016f. Pacienti postupn\u011b p\u0159ich\u00e1zej\u00ed o ve\u0161kerou schopnost pohybu, nakonec z\u016fst\u00e1vaj\u00ed jen pohyby o\u010d\u00ed. To v\u0161e se d\u011bje p\u0159i pln\u00e9m zachov\u00e1n\u00ed psychick\u00fdch a ment\u00e1ln\u00edch schopnost\u00ed. P\u0159\u00ed\u010diny nemoci zat\u00edm nebyly objasn\u011bny. M\u016f\u017ee postihnout kohokoli. Na nemoc rovn\u011b\u017e nebyl doposud nalezen l\u00e9k.<\/p>\n\n\n\n

21. \u010derven \u2013 Sv\u011btov\u00fd den ALS<\/p>\n\n\n\n

Datum sv\u011btov\u00e9ho dne ALS bylo stanoveno s ohledem na obdob\u00ed\nletn\u00edho slunovratu \u2013 jako symbolick\u00e9 vyj\u00e1d\u0159en\u00ed nad\u011bje k obratu a pokroku p\u0159i\nhled\u00e1n\u00ed p\u0159\u00ed\u010diny a l\u00e9\u010dby ALS.<\/p>\n\n\n\n

Karol\u00edna Vel\u0161ov\u00e1<\/p>\n\n\n\n

Pardubick\u00fd den\u00edk<\/p>\n\n\n\n

https:\/\/pardubicky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

ilustra\u010dn\u00ed foto Lubom\u00edr Kulhav\u00fd z \u010cesk\u00fdch Libchav byl je\u0161t\u011b p\u0159ed \u010dty\u0159mi roky aktivn\u00ed mu\u017e v nejlep\u0161\u00edch letech. S man\u017eelkou cestovali, s\u00e1m se zaj\u00edmal o motorky, […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":4333,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-36247","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\/36247","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=36247"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/36247\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/4333"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=36247"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=36247"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=36247"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}