{"id":3755,"date":"2020-11-15T14:15:25","date_gmt":"2020-11-15T20:15:25","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3755"},"modified":"2024-02-09T14:24:26","modified_gmt":"2024-02-09T14:24:26","slug":"individual-with-lgmd-neil","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2020\/11\/15\/individual-with-lgmd-neil\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Neil"},"content":{"rendered":"

\"\"<\/a><\/p>\n

\u0130sim: Neil Kramer<\/strong><\/p>\n

Ya\u015f<\/strong>: \u00a050<\/p>\n

\u00dclke<\/strong>: Amerika Birle\u015fik Devletleri<\/p>\n

LGMD Alt Tipi<\/strong>: Bilinmiyor<\/p>\n

\u00a0<\/strong><\/p>\n

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

Bana 47 ya\u015f\u0131nda te\u015fhis konuldu.<\/p>\n

\u0130lk belirtileriniz neydi?<\/strong>: Bacaklar\u0131mda g\u00fc\u00e7s\u00fczl\u00fck ya\u015famaya ba\u015flad\u0131m ve bu da s\u0131k s\u0131k d\u00fc\u015fmeme neden oldu. Yava\u015f yava\u015f dengede durmakta, sandalyeden kalkmakta, merdiven \u00e7\u0131kmakta ve dizlerimin d\u00fc\u015fmeye neden oldu\u011funu fark ettim. 4 y\u0131l \u00f6nce bir g\u00fcn k\u00f6t\u00fc bir d\u00fc\u015f\u00fc\u015f ya\u015fad\u0131m ve acil servise gittim. Doktor bir n\u00f6rolo\u011fa g\u00f6r\u00fcnmemi tavsiye etti. \u0130lk ziyaretim s\u0131ras\u0131nda doktor bana sorunlar\u0131n sadece bacaklar\u0131mda de\u011fil, kollar\u0131mda da oldu\u011funu s\u00f6yledi. Kendimi \u00e7aresiz ve korkmu\u015f hissetti\u011fimi hat\u0131rl\u0131yorum. Nihayet bir te\u015fhis konulmas\u0131 birka\u00e7 ay s\u00fcrd\u00fc. Bu aylar en hafif tabiriyle stresliydi. N\u00f6rolog arac\u0131l\u0131\u011f\u0131yla t\u00fcm testlerden ge\u00e7erken \u00e7ok say\u0131da g\u00f6r\u00fc\u015fme yapt\u0131k. Bir ziyaret s\u0131ras\u0131nda \u00e7ocuklu\u011fumu tart\u0131\u015ft\u0131k. Birdenbire \u00e7ocukken ya\u015fad\u0131\u011f\u0131m zorluklar anlam kazand\u0131.<\/p>\n

\u00c7ocukken asla \u015f\u0131nav, barfiks, beden e\u011fitimi dersinde ipe t\u0131rmanma, \u00e7ok h\u0131zl\u0131 ko\u015fma vb. yapamazd\u0131m. Ayr\u0131ca asla a\u011f\u0131r nesneleri kald\u0131ramazd\u0131m. Sadece inek ve zay\u0131f bir \u00e7ocuk oldu\u011fumu d\u00fc\u015f\u00fcn\u00fcrd\u00fcm. M\u00fczi\u011fi benimsedim ve bir m\u00fczik grubu ine\u011fi oldum.<\/p>\n

Limb-Girdle Musk\u00fcler Distrofi te\u015fhisini ald\u0131ktan sonra, hayat\u0131mdaki baz\u0131 \u015feyler anlam kazanm\u0131\u015f gibi g\u00f6r\u00fcnd\u00fc.<\/p>\n

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

Hay\u0131r, ailemde LGMD hastas\u0131 olan kimse yok. San\u0131r\u0131m benim durumum bir gizem.<\/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

Hastal\u0131\u011f\u0131n ilerlemesini yava\u015flatmak i\u00e7in elimden geldi\u011fince hareket etmeye \u00e7al\u0131\u015f\u0131yorum; ancak bacaklar\u0131m\u0131n zay\u0131flad\u0131\u011f\u0131n\u0131 fark ediyorum. D\u00fc\u015fmemek i\u00e7in daha dikkatli olmam gerekiyor. Y\u00fcr\u00fcte\u00e7 veya scooter kullanmam gereken zamanlar\u0131 belirlemek i\u00e7in v\u00fccudumu daha fazla dinlemem gerekiyor. Utanmamam gerekti\u011fini biliyorum ama as\u0131l zorluk utanc\u0131n \u00fcstesinden gelmek ve oldu\u011fum ki\u015fi olmak. Mobilite cihazlar\u0131 ba\u011f\u0131ms\u0131zl\u0131\u011f\u0131m\u0131 s\u00fcrd\u00fcrmeme yard\u0131mc\u0131 olacak bir ara\u00e7.<\/p>\n

Ayr\u0131ca \u00fcst kollar\u0131mdaki g\u00fc\u00e7s\u00fczl\u00fc\u011f\u00fc de fark etmeye ba\u015flad\u0131m. Bacaklar\u0131ma \u00e7ok odaklanm\u0131\u015ft\u0131m; ancak, gelecekte ya\u015fayaca\u011f\u0131m ek zorluklar konusunda endi\u015felenmeye ba\u015fl\u0131yorum. As\u0131l zorluk, gelecek hakk\u0131nda endi\u015felenmek yerine her g\u00fcn\u00fcn tad\u0131n\u0131 \u00e7\u0131karmak. Ba\u015far\u0131l\u0131 kariyerimi s\u00fcrd\u00fcrmeme yard\u0131mc\u0131 olacak harika bir ailem ve destekleyici bir i\u015f ortam\u0131m var.<\/p>\n

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

En b\u00fcy\u00fck ba\u015far\u0131m\u0131n Sosyal Hizmetler alan\u0131ndaki kariyerim oldu\u011funa inan\u0131yorum. San Diego B\u00f6lge Merkezi (SDRC) adl\u0131 bir kurumda \u00e7al\u0131\u015f\u0131yorum. Geli\u015fimsel engelli 32.000'den fazla ki\u015fiye ve ailelerine y\u00f6nelik hizmetleri koordine ediyoruz. Toplumumuz i\u00e7in yapt\u0131\u011f\u0131m\u0131z i\u015f inan\u0131lmaz. M\u00fc\u015fterilerimiz bizim en \u00f6nemli \u00f6nceli\u011fimiz. Son birka\u00e7 y\u0131ld\u0131r, kurumumuz i\u00e7in Yasama \u0130rtibat G\u00f6revlisi olarak \u00e7al\u0131\u015f\u0131yorum. Finansman\u0131m\u0131z Kaliforniya Eyaleti'nden geldi\u011fi i\u00e7in, m\u00fc\u015fterilerimiz ve ailelerimiz i\u00e7in hizmet sunum sistemimizin bozulmadan kalmas\u0131n\u0131 sa\u011flamak i\u00e7in Eyalet yasa koyucular\u0131m\u0131z ve \u00e7al\u0131\u015fanlar\u0131yla s\u0131k s\u0131k g\u00f6r\u00fc\u015f\u00fcyorum. Sistemimiz i\u00e7in ger\u00e7ekten savunuculuk yap\u0131yorum. \u00c7abalar\u0131m\u0131z\u0131n \u00e7ok ba\u015far\u0131l\u0131 oldu\u011funa inan\u0131yorum.<\/p>\n

Art\u0131k bana LGMD te\u015fhisi konuldu\u011funa g\u00f6re, ba\u011f\u0131ms\u0131zl\u0131k i\u00e7in mobilite cihazlar\u0131na ihtiya\u00e7 duyan ve hizmet verdi\u011fimiz baz\u0131 m\u00fc\u015fterilerimizi anlayabiliyorum. Te\u015fhisim, sadece SDRC'de hizmet verdi\u011fim m\u00fc\u015fteriler i\u00e7in de\u011fil, T\u00dcM engelli bireyler i\u00e7in savunuculuk yapma tutkumu g\u00fc\u00e7lendirdi.<\/p>\n

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

LGMD, \u00e7ok zorlay\u0131c\u0131 olmas\u0131na ra\u011fmen, toplumumuzdaki engelli bireylerin ihtiya\u00e7lar\u0131 konusunda daha bilin\u00e7li olmam\u0131 sa\u011flad\u0131. Hepimiz gibi benim de iyi g\u00fcnlerim ve bacaklar\u0131m\u0131 ve kollar\u0131m\u0131 a\u011f\u0131r ve yorgun hissetti\u011fim g\u00fcnlerim oluyor. K\u00f6t\u00fc g\u00fcnlerimde hastal\u0131\u011f\u0131n ilerlemesini yava\u015flatmak i\u00e7in biraz fiziksel aktivite yapmaya \u00e7al\u0131\u015f\u0131yorum. Duygusal olarak \"daha g\u00fc\u00e7l\u00fc\" hale geldim \u00e7\u00fcnk\u00fc LGMD'nin hayat\u0131m\u0131 ya\u015famam\u0131 engellemesini istemiyorum. Savunuculuk konusunda daha g\u00fc\u00e7l\u00fc bir kararl\u0131l\u0131\u011fa sahibim ve LGMD ve t\u00fcm Musk\u00fcler Distrofi hastal\u0131klar\u0131 konusunda fark\u0131ndal\u0131k yaratmak i\u00e7in elimden gelen her \u015feyi yap\u0131yorum.<\/p>\n

Her zaman kamu hizmeti ile ilgili mesleklerde \u00e7al\u0131\u015ft\u0131m. \u0130\u00e7imde her zaman kamu g\u00f6revine aday olma arzusu vard\u0131. LGMD'ye ra\u011fmen, \u015fimdi yerel Belediye Meclisi i\u00e7in aday\u0131m. En \u00f6nemli \u00f6nceliklerimden biri engelliler ve ya\u015fl\u0131lar i\u00e7in savunuculuk yapmak. A\u00e7\u0131k alanlar\u0131m\u0131za, parklar\u0131m\u0131za ve patika sistemlerimize daha iyi eri\u015fim sa\u011flamak istiyorum. LGMD hayallerime ula\u015fmam\u0131 engelleyemeyecek!<\/p>\n

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

D\u00fcnyan\u0131n, g\u00f6zlerden saklanan baz\u0131 engeller oldu\u011funu bilmesini istiyorum. H\u00e2l\u00e2 y\u00fcr\u00fcyebiliyorum ve bunu elimden geldi\u011fince s\u0131k yapmaya \u00e7al\u0131\u015f\u0131yorum. Bacaklar\u0131m yoruldu\u011funda\/a\u011f\u0131rla\u015ft\u0131\u011f\u0131nda y\u00fcr\u00fcte\u00e7 kullan\u0131yorum. Uzun mesafeler veya kalabal\u0131klar i\u00e7in scooter'\u0131ma veya tekerlekli sandalyeme ihtiyac\u0131m var. Engelli alan\u0131n\u0131 kullan\u0131rken ve y\u00fcr\u00fctecime ihtiyac\u0131m yokken, bazen neden alana ihtiyac\u0131m oldu\u011funu anlamayan insanlardan bak\u0131\u015flar al\u0131yorum. Bacaklar\u0131m \u00e7ok zay\u0131f ve d\u00fc\u015fme riskim var. Engelli park yerini kullanmam gerekti\u011fi i\u00e7in utanmamal\u0131 ya da mahcup hissetmemeliyim.<\/p>\n

LGMD hakk\u0131nda fark\u0131ndal\u0131k yaratmak, LGMD ara\u015ft\u0131rmalar\u0131 i\u00e7in para toplamak ve hastal\u0131ktan muzdarip olan hepimiz i\u00e7in savunuculuk yapmak istiyorum.<\/p>\n

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

Lisede yapt\u0131\u011f\u0131m gibi paten kayabilmeyi, o\u011flumla golf oynayabilmeyi, beyzbol oynayabilmeyi ve belki de s\u00f6rf yapmay\u0131 \u00f6\u011frenebilmeyi \u00e7ok isterim. G\u00fcney Kaliforniya'da ya\u015f\u0131yorum!<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":3837,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13],"tags":[],"class_list":["post-3755","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Neil - 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\/2020\/11\/15\/individual-with-lgmd-neil\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" 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