{"id":1446,"date":"2017-04-08T12:30:56","date_gmt":"2017-04-08T17:30:56","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1446"},"modified":"2017-04-08T12:30:56","modified_gmt":"2017-04-08T17:30:56","slug":"darlene","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2017\/04\/08\/darlene\/","title":{"rendered":"OSOBA Z LGMD: Darlene"},"content":{"rendered":"<p><strong>LGMD \"WYWIAD W \u015aWIETLE REFLEKTOR\u00d3W\"<\/strong><\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>Nazwa<\/strong>:  Darlene\u00a0\u00a0\u00a0 <strong>Wiek<\/strong>65 lat<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2017\/04\/Non-Dysferlin-Miyoshi-Myopathy.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1445 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\/2017\/04\/Non-Dysferlin-Miyoshi-Myopathy-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>Kraj<\/strong>:   Stany Zjednoczone<\/p>\n<p><strong>Podtyp LGMD<\/strong>:    Miopatia Miyoshi bez dysferliny<\/p>\n<p>&nbsp;<\/p>\n<p><strong>W jakim wieku zosta\u0142e\u015b zdiagnozowany?<\/strong>:<\/p>\n<p>Zdiagnozowano mnie w wieku 64 lat.<\/p>\n<p><strong>Jakie by\u0142y pierwsze objawy?<\/strong>:<\/p>\n<p>Z perspektywy czasu zdaj\u0119 sobie teraz spraw\u0119, \u017ce objawy zacz\u0119\u0142y si\u0119 w wieku 40 lat lub nawet wcze\u015bniej.  Zawsze by\u0142em aktywny, ale z biegiem lat umiej\u0119tno\u015bci takie jak bieganie, jazda na nartach i \u0142y\u017cwach stawa\u0142y si\u0119 coraz trudniejsze, wi\u0119c wykonywa\u0142em inne czynno\u015bci, takie jak jazda na rowerze, kettlebells, trening si\u0142owy i CrossFit.  Z objawami Raynauda radzi\u0142em sobie ubieraj\u0105c si\u0119 cieplej.  Widoczny zanik mi\u0119\u015bni w \u0142ydkach we wczesnych latach 60-tych rozpocz\u0105\u0142 moj\u0105 roczn\u0105 podr\u00f3\u017c do diagnozy.  Do tego czasu 80-90% obu mi\u0119\u015bni brzuchatych \u0142ydek zosta\u0142o zast\u0105pionych przez t\u0142uszcz.<\/p>\n<p><strong>Czy masz innych cz\u0142onk\u00f3w rodziny cierpi\u0105cych na LGMD?<\/strong><\/p>\n<p>Nie, ale dwie siostry mia\u0142y cukrzyc\u0119 m\u0142odzie\u0144cz\u0105.  Jedna z nich zmar\u0142a z powodu powik\u0142a\u0144 sercowych w wieku 53 lat.  Druga, obecnie 58-letnia i s\u0142abego zdrowia, mia\u0142a wszczepion\u0105 nerk\u0119\/trzustk\u0119 w wieku 39 lat.<\/p>\n<p><strong>Co uwa\u017casz za najwi\u0119ksze wyzwanie w \u017cyciu z LGMD?<\/strong>:<\/p>\n<p>Jako wsp\u00f3\u0142w\u0142a\u015bciciel si\u0142owni CrossFit nieustannie staram si\u0119 znale\u017a\u0107 odpowiedni\u0105 r\u00f3wnowag\u0119 mi\u0119dzy prac\u0105 wystarczaj\u0105co ci\u0119\u017ck\u0105, aby rzuci\u0107 wyzwanie i utrzyma\u0107 moje zdrowe mi\u0119\u015bnie silne i mobilne, ale nie tak ci\u0119\u017ck\u0105, \u017ce niszcz\u0119 moje zagro\u017cone mi\u0119\u015bnie.  Jak dot\u0105d wp\u0142yw choroby na moje \u017cycie by\u0142 minimalny: nadal wygl\u0105dam, czuj\u0119 si\u0119 i poruszam m\u0142odziej ni\u017c przeci\u0119tny 65-latek.  Staram si\u0119 skupia\u0107 na tym, co jestem w stanie robi\u0107 ka\u017cdego dnia i przypomina\u0107 sobie, \u017ce wszyscy, nie tylko ja, zmagaj\u0105 si\u0119 z post\u0119puj\u0105c\u0105 chorob\u0105 zwyrodnieniow\u0105 zwan\u0105 starzeniem si\u0119.<\/p>\n<p><strong>Jakie jest twoje najwi\u0119ksze osi\u0105gni\u0119cie?<\/strong>:<\/p>\n<p>Dorastanie z siostrami chorymi na cukrzyc\u0119 u\u015bwiadomi\u0142o mi, jak wa\u017cne jest dobre od\u017cywianie i regularne \u0107wiczenia.  Rozumiem, \u017ce to, co wk\u0142adam do ust, ma znaczenie, a odpowiedni sen i regeneracja po stresie s\u0105 niezb\u0119dne, bez wzgl\u0119du na to, co ci dolega.  Chocia\u017c nie mam pewno\u015bci, \u017ce zdrowe nawyki pomagaj\u0105 zminimalizowa\u0107 moje objawy, wierz\u0119, \u017ce tak jest i nadal b\u0119d\u0119 tak proaktywny, jak to tylko mo\u017cliwe.  Jako trener jestem w stanie modelowa\u0107 doskona\u0142e praktyki zdrowotne i \u015bci\u015ble wsp\u00f3\u0142pracowa\u0107 z naszymi cz\u0142onkami, aby sami mogli czerpa\u0107 z nich korzy\u015bci.  Zosta\u0142em trenerem CrossFit w wieku 60 lat (po 35-letniej karierze dziennikarza prasowego) i to satysfakcjonuj\u0105ce, gdy inni m\u00f3wi\u0105 ci, \u017ce pomog\u0142e\u015b im zmieni\u0107 swoje \u017cycie na lepsze.<\/p>\n<p><strong>Jak LGMD wp\u0142yn\u0119\u0142o na to, \u017ce sta\u0142e\u015b si\u0119 osob\u0105, kt\u00f3r\u0105 jeste\u015b dzisiaj:<\/strong><\/p>\n<p>Dziesi\u0105tki lat przed moj\u0105 oficjaln\u0105 diagnoz\u0105, zagadkowe ograniczenia fizyczne zmusi\u0142y mnie do znalezienia innych sposob\u00f3w na aktywno\u015b\u0107 i wniesienie wk\u0142adu w spo\u0142eczno\u015b\u0107 wyczynowych sportowc\u00f3w wytrzyma\u0142o\u015bciowych.  Bycie odpornym, aktywnym fizycznie i silnym jest cz\u0119\u015bci\u0105 mojej to\u017csamo\u015bci, kt\u00f3rej b\u0119d\u0119 si\u0119 stara\u0142 trzyma\u0107 tak d\u0142ugo, jak b\u0119d\u0119 w stanie.  Licz\u0119 na to, \u017ce ten spos\u00f3b my\u015blenia pomo\u017ce mi stawi\u0107 czo\u0142a wszelkim niepewno\u015bciom, jakie przyniesie przysz\u0142o\u015b\u0107.<\/p>\n<p><strong>Co chcia\u0142by\u015b, aby \u015bwiat dowiedzia\u0142 si\u0119 o LGMD?<\/strong>:<\/p>\n<p>Dystrofia mi\u0119\u015bniowa jest rzadk\u0105 chorob\u0105 o niesko\u0144czonej liczbie indywidualnych odmian.  A poniewa\u017c nie ma na ni\u0105 lekarstwa, a firmy farmaceutyczne maj\u0105 niewielk\u0105 motywacj\u0119 finansow\u0105 do jego znalezienia, diagnoza jest cz\u0119sto ko\u0144cem zainteresowania pracownik\u00f3w s\u0142u\u017cby zdrowia dan\u0105 osob\u0105.  Znajd\u017a wsparcie tam, gdzie mo\u017cesz i b\u0105d\u017a swoim w\u0142asnym adwokatem.<\/p>\n<p><strong>Gdyby jutro mo\u017cna by\u0142o \"wyleczy\u0107\" chorob\u0119 LGMD, co by\u0142oby pierwsz\u0105 rzecz\u0105, kt\u00f3r\u0105 chcia\u0142by\u015b zrobi\u0107?<\/strong>:<\/p>\n<p>Chcia\u0142bym je\u017adzi\u0107 na nartach biegowych.  Mieszkamy przy systemie szlak\u00f3w, kt\u00f3ry \u0142\u0105czy si\u0119 z 54-kilometrowym ameryka\u0144skim szlakiem narciarskim Birkebeiner i chcia\u0142bym do\u015bwiadczy\u0107 dreszczyku emocji zwi\u0105zanych z wdzi\u0119cznym szybowaniem po wzg\u00f3rzach i dolinach tego pi\u0119knego, zalesionego szlaku.<\/p>\n<p>&nbsp;<\/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 \u00a0 Name:\u00a0 Darlene\u00a0\u00a0\u00a0 Age: \u00a0\u00a065 yrs. old [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1445,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[73],"class_list":["post-1446","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-non-dysferlin-miyoshi-myopathy-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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