{"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\/tr\/individuals-with-lgmd-interviews\/2015\/02\/06\/jose-antonio\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Jos\u00e9 Antonio"},"content":{"rendered":"<p>02\/06\/2015:<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2015\/02\/LGMD2B-Jose-Antonio.png\"><img decoding=\"async\" class=\"lazyload  size-medium wp-image-159 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2015\/02\/LGMD2B-Jose-Antonio-300x169.png\" alt=\"LGMD2B - Jose Antonio\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>\u0130S\u0130M<\/strong>: Jos\u00e9 Antonio<\/p>\n<p><strong>YA\u015e:<\/strong> 48<\/p>\n<p><strong>\u00dcLKE:<\/strong> M\u00e9xico<\/p>\n<p><strong>LGMD Alt Tip:<\/strong> LGMD 2B\/Disferlinopati<\/p>\n<p><strong>Ka\u00e7 ya\u015f\u0131nda te\u015fhis konuldu?<\/strong> 46 ya\u015f\u0131nda<\/p>\n<p><strong>\u0130LK BELIRTILERINIZ NEYDI?<\/strong><br \/>\nKas g\u00fc\u00e7s\u00fczl\u00fc\u011f\u00fcn\u00fc ilk kez 30 ya\u015f\u0131mda fark ettim. Aortumda bir kalp sorunu oldu\u011fu tespit edildi ve kardiyolog kas g\u00fc\u00e7s\u00fczl\u00fc\u011f\u00fcm\u00fcn bundan kaynakland\u0131\u011f\u0131n\u0131 d\u00fc\u015f\u00fcnd\u00fc. EMG \u00e7ektirdim ve sonu\u00e7lar iyi \u00e7\u0131kt\u0131, ancak d\u00fc\u015fmeye, bir \u015feylere \u00e7arpmaya devam ettim, bacaklar\u0131mda merdiven \u00e7\u0131kmak i\u00e7in veya kollar\u0131mda a\u011f\u0131r nesneleri kald\u0131rmak i\u00e7in g\u00fc\u00e7 yoktu. San\u0131r\u0131m en endi\u015fe verici belirti z\u0131playamad\u0131\u011f\u0131m\u0131 ke\u015ffetti\u011fimde oldu, o zaman bir \u015feylerin yanl\u0131\u015f oldu\u011funu anlad\u0131m.<\/p>\n<p><strong>LGMD'L\u0130 BA\u015eKA A\u0130LE \u00dcYELER\u0130N\u0130Z VAR MI: Hay\u0131r <\/strong><br \/>\n<strong>LGMD I\u0307LE YA\u015eARKEN KAR\u015eILA\u015eTI\u011eINIZ EN B\u00dcY\u00dcK ZORLUKLARIN NELER OLDU\u011eUNU D\u00dc\u015e\u00dcN\u00dcYORSUNUZ:<\/strong><br \/>\nHer \u015fey! \u0130nsanlar yataktan kalkmama yard\u0131m ettikten sonra banyoyu kullanmak i\u00e7in \u00f6zel bir sandalyeye binmem gerekiyor, ard\u0131ndan tekerlekli sandalyeye binebilmem i\u00e7in insanlar\u0131n beni kald\u0131rmas\u0131 gerekiyor. Pazartesi'den Cuma'ya kadar fizyoterapi g\u00f6r\u00fcyorum. Fizyoterapist beni bir kemerle kald\u0131r\u0131yor ve onunla birlikte birka\u00e7 kez yakla\u015f\u0131k 10 metre y\u00fcr\u00fcyorum. Kollar\u0131m\u0131 1 kg'l\u0131k a\u011f\u0131rl\u0131klarla esnettiriyor, sonra beni arac\u0131ma bindiriyorlar ve arac\u0131mda kald\u0131\u011f\u0131m i\u015f yerime g\u00f6t\u00fcr\u00fcyorlar. En \u00fcz\u00fcc\u00fc k\u0131sm\u0131 ise \u00e7ocuklar\u0131m\u0131n b\u00fcy\u00fcmesini izliyorum ve onlarla birlikte plaj, sinema, park gibi basit \u015feylerin tad\u0131n\u0131 \u00e7\u0131karam\u0131yorum. Bunu yapan ki\u015fi e\u015fim; bana \u00e7ok ba\u011fl\u0131 ve bana \u00e7ok yard\u0131mc\u0131 oluyor.<\/p>\n<p><strong>EN B\u00dcY\u00dcK BA\u015eARINIZ NEDIR?<\/strong><br \/>\nM\u00fc\u015fterilerimle ileti\u015fim halinde kalabilmek ve kendi yolumda \u00e7al\u0131\u015fmaya devam edebilmek.<\/p>\n<p><strong>LGMD BUG\u00dcN OLDU\u011eUNUZ KI\u0307\u015eI\u0307YE D\u00d6N\u00dc\u015eMENI\u0307ZDE SI\u0307ZI\u0307 NASIL ETKI\u0307LEDI\u0307?<\/strong>:<br \/>\nBana yard\u0131m eden insanlar\u0131n k\u0131ymetini bilmeyi, sabretmeyi, umutlu olmay\u0131 ve depresyona girmemeyi, her \u015fey i\u00e7in \u015f\u00fckretmeyi, benimle ayn\u0131 durumda olmayan ve zor durumda olan insanlar\u0131 anlamay\u0131, sahip olduklar\u0131m\u0131n de\u011ferini bilmeyi ve tasarruflu olmay\u0131, aileme her g\u00fcn son g\u00fcnm\u00fc\u015f gibi daha fazla sevgi vermeyi \u00f6\u011frendim.<br \/>\n<strong>D\u00dcNYANIN LGMD HAKKINDA NE BI\u0307LMESI\u0307NI\u0307 I\u0307STI\u0307YORSUNUZ?<\/strong><br \/>\nDi\u011fer insanlar i\u00e7in \u00f6nemsiz olan k\u00fc\u00e7\u00fck \u015feyleri ba\u015farmak, onlar\u0131n bu nadir hastal\u0131klar hakk\u0131nda bilgi sahibi olmalar\u0131n\u0131 sa\u011flamak ve bu hastal\u0131klar\u0131n neden ortaya \u00e7\u0131kt\u0131\u011f\u0131n\u0131 ve nas\u0131l \u00f6nlenebilece\u011fini ara\u015ft\u0131rmaya daha fazla ilgi duymalar\u0131n\u0131 sa\u011flamak ne kadar zor. Ayr\u0131ca erken te\u015fhis sayesinde hastalar sa\u011fl\u0131k sorunlar\u0131ndan ka\u00e7\u0131nmak i\u00e7in vitamin alabilirler, \u00e7\u00fcnk\u00fc daha az hareketli hale geldi\u011fimizde v\u00fccudumuz zay\u0131flar ve ba\u011f\u0131\u015f\u0131kl\u0131k sistemimiz zay\u0131flar. Son olarak ve en \u00f6nemlisi, bu hastal\u0131k i\u00e7in bir tedavi veya \u00e7are bulmak!<\/p>\n<p><strong>LGMD HASTALI\u011eINIZ YARIN \"TEDAVI\u0307\" EDI\u0307LEBI\u0307LECEK OLSA, YAPMAK I\u0307STEYECE\u011eI\u0307NI\u0307Z I\u0307LK \u015eEY NE OLURDU?<\/strong><br \/>\nSahilde y\u00fcr\u00fcyebilir, ko\u015fabilir, merdiven \u00e7\u0131kabilir, \u00e7ocuklar\u0131m benim i\u00e7in endi\u015felenmeden onlarla bir yerlere seyahat edebilirdim. E\u015fimi g\u00fczel bir yere yeme\u011fe g\u00f6t\u00fcr\u00fcr ve bana yard\u0131m ederek ve benimle ilgilenerek bana duydu\u011fu t\u00fcm sevgi i\u00e7in ona te\u015fekk\u00fcr ederdim. \u00c7ocuklar\u0131ma sar\u0131l\u0131r, bana her g\u00fcn verdikleri destek i\u00e7in te\u015fekk\u00fcr ederdim.<\/p>","protected":false},"excerpt":{"rendered":"<p>02\/06\/2015: NAME: Jos\u00e9 Antonio AGE: 48 COUNTRY: M\u00e9xico LGMD Sub-Type: [&hellip;]<\/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":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>LGMD Spotlight Interview - 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