{"id":1330,"date":"2016-09-23T09:22:39","date_gmt":"2016-09-23T14:22:39","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1330"},"modified":"2016-09-23T09:22:39","modified_gmt":"2016-09-23T14:22:39","slug":"tony","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2016\/09\/23\/tony\/","title":{"rendered":"OSOBA Z LGMD: Tony"},"content":{"rendered":"<p>LGMD \"Wywiad w centrum uwagi\"<\/p>\n<p><strong>Nazwa<\/strong>: Tony \u00a0<strong>Wiek<\/strong>:\u00a0 32<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/09\/LGMD2i-Tony-H.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1329 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\/2016\/09\/LGMD2i-Tony-H-300x169.png\" alt=\"lgmd2i-tony-h\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>Kraj<\/strong>: Stany Zjednoczone<\/p>\n<p><strong>Podtyp LGMD<\/strong>: LGMD2i<\/p>\n<p>&nbsp;<\/p>\n<p><strong>W JAKIM WIEKU ZOSTA\u0141E\u015a ZDIAGNOZOWANY?<\/strong>:<\/p>\n<p>Zdiagnozowano u mnie LGMD w wieku oko\u0142o 26 lat w Cleveland Clinic, a nast\u0119pnie oficjalnie zdiagnozowano 2i w zesz\u0142ym roku w wyniku test\u00f3w genetycznych.<\/p>\n<p><strong>JAKIE BY\u0141Y PIERWSZE OBJAWY<\/strong>:<\/p>\n<p>Patrz\u0105c wstecz, zawsze stara\u0142em si\u0119 nad\u0105\u017cy\u0107 za innymi dzie\u0107mi podczas uprawiania sportu, w\u0119dr\u00f3wek, biegania itp. Moje pierwsze zauwa\u017calne objawy \"co\u015b mo\u017ce by\u0107 nie tak\" zacz\u0119\u0142y si\u0119 pojawia\u0107, gdy je\u017adzi\u0142em po kraju z zespo\u0142ami i \u0142adowa\u0142em sprz\u0119t ka\u017cdej nocy oko\u0142o 10 lat temu. Zacz\u0105\u0142em mie\u0107 trudno\u015bci z robieniem rzeczy, z kt\u00f3rymi wcze\u015bniej nigdy nie mia\u0142em problem\u00f3w (wchodzenie po schodach bez u\u017cycia por\u0119czy, noszenie du\u017cego sprz\u0119tu itp.) W college'u nadal zauwa\u017ca\u0142em, \u017ce ma\u0142e rzeczy staj\u0105 si\u0119 trudniejsze, ale (oczywi\u015bcie) ignorowa\u0142em to przez lata.<\/p>\n<p><strong>CZY MASZ INNYCH CZ\u0141ONK\u00d3W RODZINY, KT\u00d3RZY CHORUJ\u0104 NA LGMD? <\/strong><\/p>\n<p>Nie. Tylko ja.<\/p>\n<p><strong>CO UWA\u017bASZ ZA NAJWI\u0118KSZE WYZWANIE W \u017bYCIU Z LGMD?<\/strong>:<\/p>\n<p>Dostosowywanie si\u0119 i rezygnacja z rzeczy, kt\u00f3re bardzo mi si\u0119 podoba\u0142y. Konieczno\u015b\u0107 bycia niezwykle ostro\u017cnym przy pozornie ka\u017cdym ruchu. T\u0119skni\u0119 za takimi rzeczami jak bieganie (nawet je\u015bli nie by\u0142o to pe\u0142ne gracji), chodzenie po zakupy i swobodne przemieszczanie si\u0119 z punktu A do punktu B.<\/p>\n<p><strong>JAKIE JEST TWOJE NAJWI\u0118KSZE OSI\u0104GNI\u0118CIE?<\/strong>:<\/p>\n<p>Uko\u0144czenie college'u po od\u0142o\u017ceniu go na p\u00f3\u017aniej, by gra\u0107 muzyk\u0119 i podr\u00f3\u017cowa\u0107 z przyjaci\u00f3\u0142mi. Napisanie komedii do niezale\u017cnie wydanego filmu, serialu internetowego i ksi\u0105\u017cki. Przeprowadzka do Los Angeles i kontynuowanie kariery w bran\u017cy rozrywkowej\/medialnej oraz po\u015blubienie najdoskonalszej dla mnie osoby na \u015bwiecie.<\/p>\n<p><strong>JAK CHOROBA ALZHEIMERA WP\u0141YN\u0118\u0141A NA TO, \u017bE STA\u0141E\u015a SI\u0118 OSOB\u0104, KT\u00d3R\u0104 JESTE\u015a DZISIAJ: <\/strong><\/p>\n<p>To znacznie poprawi\u0142o moje umiej\u0119tno\u015bci rozwi\u0105zywania problem\u00f3w, czyni\u0105c mnie bardziej zaradnym, kreatywnym i cierpliwym. By\u0142em w stanie zastosowa\u0107 to w mojej karierze i innych cz\u0119\u015bciach mojego \u017cycia, co zdecydowanie uczyni\u0142o mnie lepszym cz\u0142onkiem zespo\u0142u, przyjacielem, m\u0119\u017cem i kreatywn\u0105 osob\u0105. Przynajmniej tak mi si\u0119 wydaje i mam nadziej\u0119, \u017ce inni si\u0119 z tym zgodz\u0105!<\/p>\n<p><strong>CO \u015aWIAT POWINIEN WIEDZIE\u0106 O LGMD? <\/strong><\/p>\n<p>Dobrym pocz\u0105tkiem by\u0142oby u\u015bwiadomienie ca\u0142emu \u015bwiatu, \u017ce ta choroba faktycznie istnieje. \u017be jest to powa\u017cna walka dla os\u00f3b dotkni\u0119tych chorob\u0105, ale tak wielu z nas prowadzi szcz\u0119\u015bliwe \/ produktywne \u017cycie, a na horyzoncie s\u0105 terapie i lekarstwa, kt\u00f3re chcieliby\u015bmy, aby wszyscy pomogli i zrozumieli w popychaniu ich do mety.<\/p>\n<p><strong>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>:<\/p>\n<p>Cz\u0142owieku... ci\u0105gle o tym my\u015bl\u0119, wi\u0119c mam ju\u017c zaplanowany dzie\u0144: Zabra\u0142bym psa na mi\u0142y, d\u0142ugi spacer (a mo\u017ce pobiega\u0142?). Zani\u00f3s\u0142bym wszystkie zakupy do sklepu, zamiast wyr\u0119cza\u0107 w tym moj\u0105 ma\u0142\u0105 \u017con\u0119. Zagra\u0142bym w hacky sack z kilkoma kolesiami z college'u i mo\u017ce spr\u00f3bowa\u0142bym tej \"pieszej w\u0119dr\u00f3wki\", kt\u00f3r\u0105 ludzie w Los Angeles tak bardzo uwielbiaj\u0105.<\/p>\n<p>**********<\/p>\n<p>Aby przeczyta\u0107 wi\u0119cej wywiad\u00f3w \"LGMD Spotlight Interviews\" lub zg\u0142osi\u0107 si\u0119 do udzia\u0142u w nadchodz\u0105cym wywiadzie, odwied\u017a nasz\u0105 stron\u0119 internetow\u0105: <a href=\"https:\/\/www.lgmd-info.org\/pl\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSpotlight Interview\u201d Name: Tony \u00a0Age:\u00a0 32 Country: United States [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1329,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[61],"class_list":["post-1330","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2i","tag-lgmd2i-united-kingdom"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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