{"id":1506,"date":"2017-07-28T08:37:52","date_gmt":"2017-07-28T13:37:52","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1506"},"modified":"2017-07-28T08:37:52","modified_gmt":"2017-07-28T13:37:52","slug":"nicole","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2017\/07\/28\/nicole\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Nicole"},"content":{"rendered":"

\u0130sim:<\/strong> Nicole YA\u015e: 37<\/p>\n

\u00dcLKE:<\/strong> Birle\u015fik Devletler\"\"<\/a><\/p>\n

LGMD Alt Tipi<\/strong>: LGMD 2J (Titinopati)<\/p>\n

 <\/p>\n

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

Bana 24 ya\u015f\u0131mda te\u015fhis konuldu.<\/p>\n

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

B\u00fcy\u00fcrken hi\u00e7bir zaman \u00e7ok atletik olmad\u0131m ve her zaman sadece sakar oldu\u011fumu d\u00fc\u015f\u00fcnd\u00fcm. \u0130lkokul ve ortaokulda spor yapmaya \u00e7al\u0131\u015ft\u0131m ama her zaman herhangi bir organize spor tak\u0131m\u0131na kat\u0131lamayacak kadar koordinasyonsuz oldu\u011fumu hissettim. Lisede merdivenlerden d\u00fc\u015fmeye ba\u015flayana kadar her \u015fey \"normal\" g\u00f6r\u00fcn\u00fcyordu - ilk gen\u00e7lik y\u0131llar\u0131mda ayak parmaklar\u0131m\u0131n \u00fczerinde y\u00fcr\u00fcmeye ba\u015flad\u0131m ve bu da merdivenlerden d\u00fc\u015fmeme katk\u0131da bulundu. Sadece a\u015f\u0131r\u0131 sakar oldu\u011fuma inanmak istesem de, zihnimin arkas\u0131nda her zaman bana \"normal\" olmad\u0131\u011f\u0131m\u0131 s\u00f6yleyen bir \u015fey vard\u0131. 2003 y\u0131l\u0131nda, forma girmek i\u00e7in ko\u015fmaya ba\u015flamak gibi b\u00fcy\u00fck bir fikre kap\u0131ld\u0131m. Birka\u00e7 dakika i\u00e7inde #3'e d\u00fc\u015fmeden \u00f6nce \u00e7eyrek blok bile gidememi\u015ftim. O noktada, i\u00e7imde bir \u015feylerin yolunda gitmedi\u011fini s\u00f6yleyen k\u00fc\u00e7\u00fck sesi dinlemeye ba\u015flad\u0131m - bir doktorla konu\u015fman\u0131n zaman\u0131 gelmi\u015fti.<\/p>\n

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

Karde\u015fim Paul'da da LGMD 2J var.<\/p>\n

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

LGMD ile ya\u015faman\u0131n en zor yan\u0131 zihnim ve bedenimin senkronize olmamas\u0131. Zihnim \"Y\u00fcr\u00fc!\" diyor ve bedenim \"Ne d\u00fc\u015f\u00fcn\u00fcyorsun, bunu yapamazs\u0131n\" diye ba\u011f\u0131r\u0131yor. Zihnimde, merdiven \u00e7\u0131kabilirim, harika bir \u00e7ift topuklu ayakkab\u0131 giyebilirim, kald\u0131r\u0131mda zarif\u00e7e y\u00fcr\u00fcyebilirim, yiyecek ta\u015f\u0131yabilirim ve bir maraton ko\u015fabilirim. Ama v\u00fccudum ayn\u0131 fikirde de\u011fil - ne pahas\u0131na olursa olsun merdivenlerden ka\u00e7\u0131n\u0131yorum, d\u00fcz ayakkab\u0131 giymek zorunday\u0131m. Yan\u0131mda biri olmadan kald\u0131r\u0131mda y\u00fcr\u00fcmek bile a\u00e7\u0131klanamaz bir endi\u015fe duygusuna neden oluyor - evime bir s\u00fcr\u00fc yiyecek ta\u015f\u0131mak sanki iki elimle bir da\u011f\u0131 yerinden oynatmaya \u00e7al\u0131\u015f\u0131yormu\u015fum gibi hissettiriyor. Ve bir maraton ko\u015fmak, bir fili evde e\u011fitmeye \u00e7al\u0131\u015fmak kadar zor olurdu. Zihnim tamamen yetenekli oldu\u011fumu s\u00f6yl\u00fcyor ama bedenim buna g\u00f6re tepki vermeyi reddediyor. Ayr\u0131ca daha \u00f6nce hi\u00e7 gitmedi\u011fim bir yere davet edildi\u011fimde -\u00f6zellikle de yaln\u0131z gideceksem- b\u00fcy\u00fck bir korku duyuyorum. Bir etkinli\u011fe davet edildi\u011fimde, i\u015f i\u00e7in bir toplant\u0131m oldu\u011funda veya daha \u00f6nce hi\u00e7 gitmedi\u011fim bir yere gitmem gerekti\u011finde, Google Earth'\u00fcn en yak\u0131n m\u00fcttefikim oldu\u011funu g\u00f6r\u00fcyorum. Google Earth'te binalar\u0131n yerle\u015fim plan\u0131n\u0131 bulurum. Park yeri nerede? \u00d6n kap\u0131ya ula\u015fmak i\u00e7in ne kadar y\u00fcr\u00fcmem gerekiyor? Giri\u015fte bir basamak ya da e\u011fim var m\u0131? Arazide ilerlememi engelleyebilecek herhangi bir \u015fey var m\u0131? Ara\u015ft\u0131rma faydal\u0131 olsa da, \"yeni yerler\" ile birlikte gelen korku, bu \u00f6nleyici tedbirlerle sadece biraz azal\u0131r - ger\u00e7ek \u015fu ki, vard\u0131\u011f\u0131mda sahada beklenmedik bir engel olabilir. Benim i\u00e7in as\u0131l korku o zaman ba\u015fl\u0131yor. Yukar\u0131daki zorluklar\u0131n her birinden daha da \u00f6nemlisi, en b\u00fcy\u00fck zorlu\u011fum yard\u0131m istemem gerekti\u011fini kabul etmek. G\u00fcnler, aylar ve y\u0131llar ge\u00e7tik\u00e7e, en basit i\u015flerin - \u00e7\u00f6p\u00fc \u00e7\u0131karmak, ampul de\u011fi\u015ftirmek, korkuluksuz merdiven inip \u00e7\u0131kmak, tutunacak bir \u015fey olmadan kald\u0131r\u0131ma \u00e7\u0131kmak, sandalyeden kalkmak, hatta sadece odan\u0131n kar\u015f\u0131s\u0131na ge\u00e7mek - giderek zorla\u015ft\u0131\u011f\u0131n\u0131 fark ettim.<\/p>\n

S\u0131k s\u0131k bedenim \u00e7al\u0131\u015fsayd\u0131 ve i\u015fbirli\u011fi yapmayan zihnim olsayd\u0131 daha kolay olur muydu diye merak ediyorum. Zihniniz size elinizdeki g\u00f6revin ya\u015fam\u0131n ola\u011fan, g\u00fcnl\u00fck bir par\u00e7as\u0131 oldu\u011funu s\u00f6yledi\u011finde yard\u0131m istemek zordur.<\/p>\n

Kendime LGMD'nin kazanamayaca\u011f\u0131n\u0131 - bu hastal\u0131\u011f\u0131 alt etmenin bir yolu oldu\u011funu kan\u0131tlamak istiyorum. O anlar geldi\u011finde kendimi \u00e7ok fazla zorluyorum - sonunda beni yata\u011fa d\u00fc\u015f\u00fcrece\u011fini ve uzun s\u00fcre ac\u0131 \u00e7ektirece\u011fini bildi\u011fim \u015feyler yap\u0131yorum. Benim i\u00e7in bu hastal\u0131k d\u00f6ng\u00fcsel. Ne kadar \u00e7ok yaparsam, o kadar \u00e7ok ac\u0131 \u00e7ekiyorum. Ne kadar az yaparsam, tam olarak yapamad\u0131\u011f\u0131m i\u00e7in kendimi o kadar h\u0131rpal\u0131yorum - bu da v\u00fccudumu bir kez daha \u00e7ok zorlamama neden oluyor.<\/p>\n

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

Fiziksel ve zihinsel g\u00fc\u00e7 a\u00e7\u0131s\u0131ndan en b\u00fcy\u00fck ba\u015far\u0131m 2013 y\u0131l\u0131nda 5K Renkli Ko\u015fu'yu tamamlamak oldu. \"Bunu yapabilirim\" dedi\u011fimden daha s\u0131k \"Daha ileri gidemem\" demi\u015f olabilirim. Biti\u015f \u00e7izgisini en son ge\u00e7en ki\u015fi ben olmu\u015f olabilirim ama tek bir k\u00f6\u015feyi bile d\u00f6nmeden yar\u0131\u015fa ba\u015flad\u0131m ve tamamlad\u0131m.<\/p>\n

Ki\u015fisel olarak, son hamlemden son derece gurur duyuyorum. LGMD'ye sahip olmak ba\u015fkalar\u0131ndan \u00e7ok fazla yard\u0131m almay\u0131 gerektiriyor ve zaman ge\u00e7tik\u00e7e bu ihtiya\u00e7 daha da artacak. Bunu kabul etmekle birlikte, hayat\u0131m\u0131 nas\u0131l ya\u015fayaca\u011f\u0131m\u0131 belirlemesine izin vermiyorum. Yak\u0131n zamanda tan\u0131d\u0131\u011f\u0131m herkesten yakla\u015f\u0131k 900 mil uza\u011fa tek ba\u015f\u0131ma ta\u015f\u0131nd\u0131m. \"Kas g\u00fcc\u00fcm\u00fc\" geride b\u0131rakt\u0131m, her \u015feyi toplad\u0131m ve ger\u00e7ekten ne kadar g\u00fc\u00e7l\u00fc bir bedene sahip oldu\u011fumu ke\u015ffetmek i\u00e7in ger\u00e7ekten tek ba\u015f\u0131ma u\u00e7mam gerekti\u011fine karar verdim.<\/p>\n

Profesyonel olarak Maryland'de En \u0130yi 100 Kad\u0131n ve En \u0130yi 100 Az\u0131nl\u0131k \u0130\u015fletmesi Sahibi se\u00e7ildim. MD'm ilerledik\u00e7e profesyonel kimli\u011fimi korumak ilk g\u00fcnden beri benim i\u00e7in bir \u00f6ncelik oldu, bu y\u00fczden i\u015fimle son derece gurur duyuyorum. Ayr\u0131ca 2016 y\u0131l\u0131nda MDA Cesaret \u00d6d\u00fcl\u00fc'n\u00fc almaktan onur duydum.<\/p>\n

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

LGMD'ye sahip olmak ba\u015fkalar\u0131na kar\u015f\u0131 \u015fefkatimi ve empatimi b\u00fcy\u00fck \u00f6l\u00e7\u00fcde etkiledi. Kendimi iyi hissetmemenin ne anlama geldi\u011fini tamamen anl\u0131yorum. S\u00fcrekli olarak ac\u0131 \u00e7ekmenin ve ac\u0131 i\u00e7inde olman\u0131n yorucu olabilece\u011fini anl\u0131yorum. Her ne kadar kendime kar\u015f\u0131 sabr\u0131m\u0131 d\u00fczenli olarak kaybetsem de, LGMD'ye sahip olman\u0131n bana ba\u015fkalar\u0131na kar\u015f\u0131 te\u015fhis konmadan \u00f6nce sahip olmad\u0131\u011f\u0131m bir sab\u0131r kazand\u0131rd\u0131\u011f\u0131na inan\u0131yorum.<\/p>\n

Bu te\u015fhisin getirdi\u011fi t\u00fcm zorluklarla birlikte, s\u0131n\u0131rlamalar\u0131mla ilgili mizah anlay\u0131\u015f\u0131m\u0131 korumak i\u00e7in \u00e7ok \u00e7al\u0131\u015f\u0131yorum. Ailem ve arkada\u015flar\u0131m\u0131n (ve ku\u015fkusuz kendimin) \u00fczerindeki duygusal ve fiziksel y\u00fck\u00fc hafifletebiliyorsam, \"Bug\u00fcn kendimi berbat hissediyorum\" yerine \"Bug\u00fcn kendimi y\u00fcks\u00fc\u011fe girmeye \u00e7al\u0131\u015fan bir ahtapot gibi hissediyorum\" gibi ifadelerle elimden geleni yap\u0131yorum.<\/p>\n

LGMD ayn\u0131 zamanda durumlara yarat\u0131c\u0131l\u0131kla yakla\u015fma becerisini de geli\u015ftirdi. \"Yapamam\" diye f\u0131s\u0131ldayan o k\u00fc\u00e7\u00fck sese \u00e7ok az g\u00fc\u00e7 vererek, her \u015feyi \"al\u0131\u015f\u0131lmad\u0131k bir yoldan gidebilirim ama bunu yapabilirim\" haline getirmeye \u00e7al\u0131\u015f\u0131yorum. A noktas\u0131ndan B noktas\u0131na sa\u011fl\u0131kl\u0131 bir insan gibi ula\u015famayabilirim ama y\u00f6ntemim ne kadar u\u00e7uk olursa olsun i\u015fleri ba\u015farman\u0131n bir yolunu bulurum.<\/p>\n

D\u00fcnyan\u0131n ne bilmesini istiyorsun?<\/strong> LGMD<\/strong>:<\/p>\n

Ben bir \"ilham kayna\u011f\u0131\" de\u011filim: Her g\u00fcn LGMD ile ya\u015f\u0131yor olmam, her yerdeki t\u00fcm insanlar i\u00e7in bir ilham kayna\u011f\u0131 oldu\u011fum anlam\u0131na gelmiyor. LGMD ile ya\u015fayan birine tan\u0131ya mizah ve kararl\u0131l\u0131kla yakla\u015fmas\u0131 i\u00e7in ilham verebilir miyim? Elbette - ama sadece LGMD hastas\u0131 oldu\u011fum ve hayat\u0131m\u0131 ya\u015famaya devam etti\u011fim i\u00e7in do\u011fu\u015ftan ilham verici de\u011filim. Ben LGMD hastas\u0131 bir kad\u0131n\u0131m ve t\u0131pk\u0131 hayat\u0131n pek \u00e7ok zorlu\u011funa uyum sa\u011flayan herkes gibi ben de ko\u015fullar\u0131ma uyum sa\u011fl\u0131yorum. Kolunu k\u0131ran biri, k\u0131sa bir s\u00fcre i\u00e7in i\u015fleri nas\u0131l farkl\u0131 yapaca\u011f\u0131n\u0131 \u00f6\u011frenmek zorundad\u0131r. Benzer \u015fekilde ben de her g\u00fcn nas\u0131l uyum sa\u011flayaca\u011f\u0131m\u0131 \u00f6\u011freniyorum... ve yeniden uyum sa\u011fl\u0131yorum. Benimle kolu k\u0131r\u0131lan bir ki\u015fi aras\u0131ndaki tek fark, eninde sonunda al\u00e7\u0131lar\u0131n\u0131n \u00e7\u0131kacak olmas\u0131 ve kollar\u0131n\u0131n tam i\u015flevselli\u011fini yeniden kazanacak olmalar\u0131. LGMD ilerleyici bir hastal\u0131k, dolay\u0131s\u0131yla i\u015fler ilerledik\u00e7e her zaman yeniden ayarlama d\u00f6neminde olaca\u011f\u0131m.<\/p>\n

Benim (ya da herhangi birinin) yetenekleri hakk\u0131nda varsay\u0131mlarda bulunmay\u0131n:\u00a0 <\/strong>Otururken \"normal\" g\u00f6r\u00fcnen birini g\u00f6rd\u00fc\u011f\u00fcn\u00fczde yarg\u0131lamaktan ka\u00e7\u0131n\u0131n - o ki\u015finin aya\u011fa kalkt\u0131\u011f\u0131nda ne gibi zorluklarla kar\u015f\u0131la\u015ft\u0131\u011f\u0131n\u0131 asla bilemezsiniz. Tekerlekli sandalyede oturan veya yard\u0131mc\u0131 bir cihaz kullanan birini g\u00f6rd\u00fc\u011f\u00fcn\u00fczde, l\u00fctfen i\u015fitme g\u00fc\u00e7l\u00fc\u011f\u00fc \u00e7ekti\u011fimizi, \u015f\u0131mart\u0131lmam\u0131z gerekti\u011fini veya herhangi bir sempati veya ac\u0131ma bekledi\u011fimizi varsaymay\u0131n. Bu bizim \"normalimiz\" ve zorlay\u0131c\u0131 olsa da, MD hastas\u0131 olan bizlere herhangi birine davrand\u0131\u011f\u0131n\u0131zdan daha farkl\u0131 davranman\u0131za gerek yok.<\/p>\n

Yard\u0131ma ihtiyac\u0131m oldu\u011funu (veya istedi\u011fimi) varsaymay\u0131n: LGMD ile ya\u015famak, bazen basit g\u00f6r\u00fcnen i\u015fler i\u00e7in yard\u0131m istemem gerekece\u011fi anlam\u0131na geliyor. Bununla birlikte, yard\u0131ma ihtiyac\u0131m oldu\u011funu varsaymak ... a\u015fa\u011f\u0131lay\u0131c\u0131d\u0131r. Elbette, bir \u015feyi sizin istedi\u011finiz kadar h\u0131zl\u0131 veya zarif bir \u015fekilde yapamayabilirim. Ama bu yapamayaca\u011f\u0131m anlam\u0131na gelmez. B\u0131rak\u0131n deneyeyim - yard\u0131m\u0131n\u0131za ihtiyac\u0131m olursa isterim. Bu kadar basit. Ve e\u011fer \u00fcstesinden gelemeyece\u011fimi d\u00fc\u015f\u00fcnd\u00fc\u011f\u00fcn\u00fcz bir \u015feyi denemek i\u00e7in kendimi zorlamak istersem, izin verin! Sonu iyi bitmezse ne olmu\u015f yani? Benim i\u00e7in bu ba\u015far\u0131s\u0131zl\u0131k de\u011fil. Denedi\u011fim anlam\u0131na gelir - ve baz\u0131 g\u00fcnler bu yeterlidir.<\/p>\n

Soru sormaktan \u00e7ekinmeyin:\u00a0 <\/strong>Bilgi g\u00fc\u00e7t\u00fcr. Bilgi anlay\u0131\u015f demektir. Bilgi \u015fefkattir. MD hakk\u0131ndaki sorular sald\u0131rgan de\u011fildir. Bana bakt\u0131\u011f\u0131n\u0131z\u0131 g\u00f6rmek ve g\u00fcnl\u00fck hayat\u0131m\u0131n nas\u0131l oldu\u011funu merak etti\u011finizi bilmek rahats\u0131z edici. Bu sald\u0131rgan varsaymak <\/em>Hayat\u0131m\u0131n nas\u0131l oldu\u011funu biliyorsun. Ya\u015fad\u0131\u011f\u0131m zorluklar\u0131 anlaman\u0131z\u0131 beklemiyorum. Bilmiyorsunuz - LGMD ile hi\u00e7 ya\u015famad\u0131n\u0131z ... nereden bileceksiniz ki? Bana her \u015feyi sorun! Etraf\u0131m\u0131 MD hakk\u0131nda bilgili insanlarla \u00e7evirmek hayat\u0131m\u0131 biraz daha kolayla\u015ft\u0131r\u0131yor - ama sormazsan\u0131z bilemezsiniz. Uzaklara bak\u0131p bana ac\u0131may\u0131n - kendinizi tan\u0131t\u0131n ve akl\u0131n\u0131za tak\u0131lan her t\u00fcrl\u00fc soruyu sorun.<\/p>\n

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

Ko\u015fmak. Bir \u00e7ift ko\u015fu ayakkab\u0131s\u0131 giyer, bacaklar\u0131m\u0131n ve ci\u011ferlerimin izin verdi\u011fi kadar h\u0131zl\u0131 ve uza\u011fa ko\u015fard\u0131m. Sonra bir \u00e7ift muhte\u015fem topuklu ayakkab\u0131 giyer ve b\u00fct\u00fcn gece dans ederdim. Dans etmeyi... En \u00e7ok dans etmeyi \u00f6zl\u00fcyorum!<\/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: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

Name: Nicole\u00a0\u00a0 AGE: 37 COUNTRY: United States LGMD Sub-Type: LGMD […]<\/p>","protected":false},"author":1,"featured_media":1505,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,66],"tags":[78],"class_list":["post-1506","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2j","tag-lgmd2j-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Nicole - 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\/07\/28\/nicole\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Nicole - 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