{"id":158,"date":"2015-02-06T22:26:15","date_gmt":"2015-02-07T04:26:15","guid":{"rendered":"http:\/\/mainstay-bg.com\/wp\/?p=158"},"modified":"2015-02-06T22:26:15","modified_gmt":"2015-02-07T04:26:15","slug":"jose-antonio","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2015\/02\/06\/jose-antonio\/","title":{"rendered":"OSOBA Z LGMD: Jos\u00e9 Antonio"},"content":{"rendered":"

02\/06\/2015:\"LGMD2B<\/a><\/p>\n

NAZWA<\/strong>: Jos\u00e9 Antonio<\/p>\n

WIEK:<\/strong> 48<\/p>\n

KRAJ:<\/strong> Meksyk<\/p>\n

Podtyp LGMD:<\/strong> LGMD 2B\/dysferlinopatia<\/p>\n

W jakim wieku zosta\u0142e\u015b zdiagnozowany?<\/strong> w wieku 46 lat<\/p>\n

JAKIE BY\u0141Y PIERWSZE OBJAWY:<\/strong>
\nPo raz pierwszy zauwa\u017cy\u0142em os\u0142abienie mi\u0119\u015bni w wieku 30 lat. Stwierdzono, \u017ce mam problem z sercem w aorcie, a kardiolog uzna\u0142, \u017ce os\u0142abienie mi\u0119\u015bni jest z tego powodu. Zrobiono mi EMG i wyniki by\u0142y w porz\u0105dku, ale ci\u0105gle upada\u0142em, wpada\u0142em na r\u00f3\u017cne rzeczy, nie mia\u0142em si\u0142y w nogach, by wchodzi\u0107 po schodach, ani w ramionach, by podnosi\u0107 ci\u0119\u017ckie przedmioty. My\u015bl\u0119, \u017ce najbardziej niepokoj\u0105cym objawem by\u0142o to, \u017ce nie mog\u0142em skaka\u0107, wtedy wiedzia\u0142em, \u017ce co\u015b jest nie tak.<\/p>\n

CZY MA PAN\/PANI INNYCH CZ\u0141ONK\u00d3W RODZINY, KT\u00d3RZY CHORUJ\u0104 NA LGMD: Nie <\/strong>
\nCO JEST DLA CIEBIE NAJWI\u0118KSZYM WYZWANIEM W \u017bYCIU Z LGMD?<\/strong>
\nWszystko! Kiedy ludzie pomog\u0105 mi wsta\u0107 z \u0142\u00f3\u017cka, musz\u0119 wsi\u0105\u015b\u0107 na specjalne krzes\u0142o, aby skorzysta\u0107 z \u0142azienki, a nast\u0119pnie ludzie musz\u0105 mnie podnie\u015b\u0107, abym m\u00f3g\u0142 wsi\u0105\u015b\u0107 na w\u00f3zek inwalidzki. Od poniedzia\u0142ku do pi\u0105tku mam fizjoterapi\u0119. Fizjoterapeuta podnosi mnie za pomoc\u0105 pasa, a ja przechodz\u0119 z nim oko\u0142o 10 metr\u00f3w kilka razy. Ka\u017ce mi zgina\u0107 ramiona z ci\u0119\u017carkami o wadze 1 kg, a nast\u0119pnie podnosz\u0105 mnie do pojazdu i zabieraj\u0105 do miejsca pracy, gdzie pozostaj\u0119 w poje\u017adzie. Najsmutniejsze jest to, \u017ce patrz\u0119, jak moje dzieci dorastaj\u0105, a ja nie mog\u0119 z nimi cieszy\u0107 si\u0119 prostymi rzeczami: pla\u017c\u0105, kinem, parkami itp. Zajmuje si\u0119 tym moja \u017cona, kt\u00f3ra jest mi bardzo oddana i bardzo mi pomaga.<\/p>\n

JAKIE JEST TWOJE NAJWI\u0118KSZE OSI\u0104GNI\u0118CIE?<\/strong>
\nMo\u017cliwo\u015b\u0107 pozostania w kontakcie z moimi klientami i kontynuowania pracy na sw\u00f3j w\u0142asny spos\u00f3b.<\/p>\n

JAK CHOROBA ALZHEIMERA WP\u0141YN\u0118\u0141A NA TO, \u017bE STA\u0141E\u015a SI\u0118 OSOB\u0104, KT\u00d3R\u0104 JESTE\u015a DZISIAJ?<\/strong>:
\nNauczy\u0142em si\u0119 docenia\u0107 ludzi, kt\u00f3rzy mi pomagaj\u0105, mie\u0107 cierpliwo\u015b\u0107, mie\u0107 nadziej\u0119 i unika\u0107 depresji, by\u0107 wdzi\u0119cznym za wszystko, rozumie\u0107 ludzi, kt\u00f3rzy nie s\u0105 w takiej samej sytuacji jak ja i kt\u00f3rzy s\u0105 w trudnej sytuacji, docenia\u0107 to, co mam i by\u0107 oszcz\u0119dnym, dawa\u0107 wi\u0119cej mi\u0142o\u015bci mojej rodzinie ka\u017cdego dnia, jakby to by\u0142 ostatni dzie\u0144.
\nCO \u015aWIAT POWINIEN WIEDZIE\u0106 O LGMD?<\/strong>
\nJak trudno jest osi\u0105gn\u0105\u0107 ma\u0142e rzeczy, kt\u00f3re s\u0105 nieistotne dla innych ludzi, aby wiedzieli o tych rzadkich chorobach i aby by\u0142o wi\u0119ksze zainteresowanie badaniem, dlaczego one wyst\u0119puj\u0105 i jak mo\u017cna ich unikn\u0105\u0107. R\u00f3wnie\u017c wczesna diagnoza, aby pacjenci mogli przyjmowa\u0107 witaminy w celu unikni\u0119cia problem\u00f3w zdrowotnych, poniewa\u017c kiedy stajemy si\u0119 mniej mobilni, nasze cia\u0142a staj\u0105 si\u0119 s\u0142absze, a nasz uk\u0142ad odporno\u015bciowy s\u0142abnie. Wreszcie, co najwa\u017cniejsze, znalezienie leczenia lub lekarstwa na t\u0119 chorob\u0119!<\/p>\n

GDYBY JUTRO MO\u017bNA BY\u0141O \"WYLECZY\u0106\" CHOROB\u0118 ALZHEIMERA, CO BY\u0141OBY PIERWSZ\u0104 RZECZ\u0104, KT\u00d3R\u0104 CHCIA\u0141BY\u015a ZROBI\u0106:<\/strong>
\nChcia\u0142bym chodzi\u0107 po pla\u017cy, biega\u0107, wspina\u0107 si\u0119 po schodach, podr\u00f3\u017cowa\u0107 z moimi dzie\u0107mi bez martwienia si\u0119 o mnie. Zabra\u0142bym moj\u0105 \u017con\u0119 do pi\u0119knego miejsca na jedzenie i podzi\u0119kowa\u0142bym jej za ca\u0142\u0105 mi\u0142o\u015b\u0107, jak\u0105 ma dla mnie, b\u0119d\u0105c w stanie mi pom\u00f3c i opiekowa\u0107 si\u0119 mn\u0105. Przytuli\u0142bym moje dzieci, aby podzi\u0119kowa\u0107 im za wsparcie, kt\u00f3re daj\u0105 mi ka\u017cdego dnia.<\/p>","protected":false},"excerpt":{"rendered":"

02\/06\/2015: NAME: Jos\u00e9 Antonio AGE: 48 COUNTRY: M\u00e9xico LGMD Sub-Type: […]<\/p>","protected":false},"author":1,"featured_media":159,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[21,23,24],"class_list":["post-158","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-dysferlinopathy","tag-lgmd2b","tag-mexico"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Jos\u00e9<\/title>\n<meta name=\"description\" content=\"Jos\u00e9, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his experience in living with this progressive neuro-muscular disease.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"http:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2015\/02\/06\/jose-antonio\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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