{"id":1618,"date":"2017-10-16T19:18:11","date_gmt":"2017-10-17T00:18:11","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1618"},"modified":"2017-10-16T19:18:11","modified_gmt":"2017-10-17T00:18:11","slug":"vicki","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2017\/10\/16\/vicki\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Vicki"},"content":{"rendered":"

LGMD \"SPOT I\u015eI\u011eI R\u00d6PORTAJI\"<\/strong><\/span><\/p>\n

\u0130sim<\/strong><\/span>:\u00a0 Vicki \u00a0\u00a0Ya\u015f<\/strong>: 44 ya\u015f\u0131nda\"\"<\/a><\/span><\/p>\n

\u00dclke<\/strong>: Kanada<\/span><\/p>\n

LGMD Alt Tipi<\/strong>: LGMD2A \/ Kalpainopati<\/span><\/p>\n

 <\/p>\n

Ka\u00e7 ya\u015f\u0131nda te\u015fhis konuldu?<\/strong>:\u00a0<\/span><\/p>\n

Bana 22 ya\u015f\u0131mda te\u015fhis konuldu.<\/span><\/p>\n

\u0130lk belirtileriniz neydi?<\/strong>:<\/span><\/p>\n

Merdiven \u00e7\u0131kmakta zorlan\u0131yordum. Doktor bana ayak bileklerimdeki tendonlar\u0131n k\u0131sa oldu\u011funu s\u00f6yledi, daha sonra altta yatan bir durum olup olmad\u0131\u011f\u0131n\u0131 g\u00f6rmek i\u00e7in beni ikinci bir g\u00f6r\u00fc\u015f i\u00e7in bir n\u00f6rolo\u011fa g\u00f6nderdi. <\/span>yol k\u0131sayd\u0131. N\u00f6rolo\u011fum beni Montreal'e kas biyopsisi yapt\u0131rmaya g\u00f6nderdi.<\/span><\/p>\n

LGMD hastas\u0131 olan ba\u015fka aile \u00fcyeleriniz var m\u0131?\u00a0 <\/strong><\/span><\/p>\n

Hay\u0131r, ailemde LGMD hastas\u0131 olan tek ki\u015fi benim.<\/span><\/p>\n

LGMD ile ya\u015faman\u0131n en b\u00fcy\u00fck zorluklar\u0131n\u0131n ne oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorsunuz?<\/strong>:\u00a0<\/span><\/p>\n

Bir\u00e7ok zorluk var; evimde tek ba\u015f\u0131ma ba\u011f\u0131ms\u0131z kalmak ve toplumumda ve arkada\u015flar\u0131mla aktif kalmak. Yeni bir yere gitmeyi planlarken zorlan\u0131yorum. Tekerlekli sandalye i\u00e7in eri\u015filebilir oldu\u011fundan emin olmam ve tuvalet olanaklar\u0131n\u0131 sormam gerekiyor. S\u0131radan bir g\u00f6revi yerine getiremedi\u011finizde, gitmek istedi\u011finiz bir yere gidemedi\u011finizde veya ba\u015fkalar\u0131n\u0131n toplum i\u00e7inde bu kadar kolay hareket etti\u011fini g\u00f6rd\u00fc\u011f\u00fcn\u00fczde pozitif kalmak da zor.\u00a0<\/span><\/p>\n

En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir?<\/strong>:<\/span><\/p>\n

Ailem benim ilk b\u00fcy\u00fck ba\u015far\u0131m - kocam Dean ve o\u011flumuz Tyler. Hayat\u0131m\u0131 ya\u015famaya de\u011fer k\u0131l\u0131yorlar; bana her \u015feyi yapabilece\u011fimi hissettiriyorlar. Ben \u00e7ok \u015fansl\u0131y\u0131m. MD ba\u011f\u0131\u015f toplama \u00e7al\u0131\u015fmalar\u0131mdan da b\u00fcy\u00fck gurur duyuyorum. Bu y\u0131l <\/span>ge\u00e7mi\u015fY\u0131ll\u0131k bir m\u00fczayede, \u00e7evrimi\u00e7i FB m\u00fczayedeleri, bah\u00e7e sat\u0131\u015flar\u0131, \u00e7ekili\u015fler vb. d\u00fczenledim. En son fikrim ke\u00e7e s\u00fcsler yapmak ve satmak oldu. Bunlar\u0131 yapmaya Ocak 2016'da ba\u015flad\u0131m. Bir desen tasarl\u0131yorum, ke\u00e7e \u00fczerine kesiyorum, elle dikiyorum ve Facebook'ta pazarl\u0131yorum. Kendi FB sayfalar\u0131 var: \"Vicki's Handmade Ornaments for MD\". Kocam ve ben bunlar\u0131 yapmak i\u00e7in t\u00fcm malzemeleri ba\u011f\u0131\u015flad\u0131k, hatta kartvizit bile ald\u0131m. S\u00fcslerin sat\u0131\u015f\u0131ndan elde edilen T\u00dcM gelir, her y\u0131l Haziran ay\u0131nda Musk\u00fcler Distrofi Y\u00fcr\u00fcy\u00fc\u015f\u00fcm\u00fcz i\u00e7in MD Kanada'ya gidiyor. Ba\u015flad\u0131\u011f\u0131mdan beri ~$4000 de\u011ferinde s\u00fcs e\u015fyas\u0131 satt\u0131m. MD y\u00fcr\u00fcy\u00fc\u015f\u00fc i\u00e7in ba\u011f\u0131\u015f toplama hedefim ge\u00e7ti\u011fimiz y\u0131llarda $6000 idi. Her zaman hedefimi a\u015fman\u0131n bir yolunu buluyorum.<\/span><\/p>\n

Kocam ve ben Mart ay\u0131nda sa\u011fl\u0131kl\u0131 bir beslenme rejimine ba\u015flad\u0131k. Bu sayede ikimiz de hafifledik ve daha sa\u011fl\u0131kl\u0131 olduk. Enflamasyon, a\u011fr\u0131 ve y\u00fcksek tansiyon i\u00e7in ald\u0131\u011f\u0131m 3 ilac\u0131 b\u0131rakabildim. Kendimizi harika hissediyoruz ve bunu herkese duyurmay\u0131 seviyorum!<\/span><\/p>\n

LGMD bug\u00fcn oldu\u011funuz ki\u015fi olman\u0131zda sizi nas\u0131l etkiledi?\u00a0 <\/strong><\/span><\/p>\n

Her ge\u00e7en g\u00fcn kendim hakk\u0131nda daha fazla \u015fey \u00f6\u011freniyorum. Ya\u015fad\u0131\u011f\u0131m zorluklar ve ge\u00e7mi\u015f deneyimlerim kendim hakk\u0131nda pek \u00e7ok \u015fey \u00f6\u011frenmemi sa\u011flad\u0131. Kendimi yapabildiklerim ya da yapamad\u0131klar\u0131m i\u00e7in de\u011fil, kim oldu\u011fum i\u00e7in sevmeyi \u00f6\u011frendim. G\u00fc\u00e7l\u00fc, kendine g\u00fcvenen bir insan haline geldim. Ben kimsem o oldu\u011fumu ve tekerlekli sandalyenin beni tan\u0131mlamad\u0131\u011f\u0131n\u0131 fark ettim! Ayr\u0131ca yerel bir engelli grubuna \u00fcyeyim. Her bahar ortaokullara gidip engellilikle ya\u015famak ve engelli insanlara nas\u0131l yard\u0131mc\u0131 olabilece\u011finiz hakk\u0131nda konu\u015fuyoruz. Topluluk \u00f6n\u00fcnde konu\u015fmam bu sayede uzun bir yol kat etti.\u00a0<\/span><\/p>\n

D\u00fcnyan\u0131n LGMD hakk\u0131nda ne bilmesini istersiniz?<\/strong>:\u00a0<\/span><\/p>\n

Nadirdir ama ayn\u0131 zamanda yayg\u0131n bir engelliliktir. Baz\u0131lar\u0131m\u0131z yard\u0131m eli uzat\u0131lmas\u0131ndan ho\u015flan\u0131r, baz\u0131lar\u0131m\u0131z ise ne kadar zor olursa olsun bunu kendileri yapmaktan ho\u015flan\u0131r. Herkes farkl\u0131d\u0131r. Birine yard\u0131m etmeden \u00f6nce sorun ve asla olumsuz bir tutumu ya da ki\u015fili\u011fi olan biri taraf\u0131ndan geri \u00e7evrilmeyin. Ben her zaman g\u00fcl\u00fcmserim \u00e7\u00fcnk\u00fc hayat\u0131mda nelere sahip oldu\u011fumu biliyorum ve LGMD g\u00fcl\u00fcmsememi benden alamaz!<\/span><\/p>\n

LGMD hastal\u0131\u011f\u0131n\u0131z yar\u0131n \"tedavi edilebilseydi\", yapmak isteyece\u011finiz ilk \u015fey ne olurdu?<\/strong>:\u00a0<\/span><\/p>\n

Muhtemelen yapaca\u011f\u0131m pek \u00e7ok \u015fey var: seyahat etmek, y\u00fczmek, ko\u015fmak, kendi ba\u015f\u0131ma al\u0131\u015fveri\u015fe gitmek, \u00e7al\u0131\u015fmak, egzersiz yapmak, merdivenli arkada\u015flar\u0131m\u0131n evlerini ziyaret etmek, arabaya binmek ve inmek <\/span>k\u00fcvetevi temizlemek, eminim uzun bir liste \u00e7\u0131karabilirim... Bu \u015feylerin \u00e7o\u011funu \u015fimdi yapabiliyorum, ancak de\u011fi\u015ftirilmi\u015f bir \u015fekilde. Bunlar\u0131 d\u00fc\u015f\u00fcnmeden, daha kayg\u0131s\u0131z bir \u015fekilde yapmak g\u00fczel olurdu.<\/span><\/p>\n

 <\/p>\n

* Daha fazla \"LGMD Spotlight R\u00f6portaj\u0131\" okumak veya gelecek bir r\u00f6portajda yer almak i\u00e7in g\u00f6n\u00fcll\u00fc olmak i\u00e7in l\u00fctfen web sitemizi ziyaret edin <\/span>at https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/span><\/p>\n

 <\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:\u00a0 Vicki \u00a0\u00a0Age: 44 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":1617,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[38,82],"class_list":["post-1618","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-canada","tag-lgmd2a-calpainopathy"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Vicki - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2017\/10\/16\/vicki\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Vicki - 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