{"id":3088,"date":"2019-11-03T17:49:29","date_gmt":"2019-11-03T23:49:29","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3088"},"modified":"2019-11-03T17:49:29","modified_gmt":"2019-11-03T23:49:29","slug":"individual-with-lgmd-rosamund","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2019\/11\/03\/individual-with-lgmd-rosamund\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Rosamund"},"content":{"rendered":"
\"\"<\/figure><\/div>\n\n\n\n

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

\u0130sim<\/strong>: Rosamund  Ya\u015f<\/strong>: 43 ya\u015f\u0131nda<\/p>\n\n\n\n

\u00dclke<\/strong>: \u0130ngiltere Birle\u015fik Krall\u0131k<\/p>\n\n\n\n

LGMD Alt Tipi<\/strong>: De\u011fil\nBilindi\u011fi \u00fczere; John Walton Muscular ile hala testlerden ge\u00e7iyorum.\n\u0130ngiltere Newcastle'daki Distrofi Ara\u015ft\u0131rma Merkezi.<\/p>\n\n\n\n

Ka\u00e7 ya\u015f\u0131nda te\u015fhis konuldu?<\/strong>:\n\u015eubat 2017'de i\u015f yerinde yap\u0131lan t\u0131bbi muayenenin ard\u0131ndan doktor\nkas fonksiyonlar\u0131m. Bunun bir t\u00fcr kas distrofisi oldu\u011fu \u00f6nerisi\nOcak 2018'de Londra'da \u00f6zel olarak bir n\u00f6rolo\u011fa g\u00f6r\u00fcnmek i\u00e7in \u00f6deme yapt\u0131ktan sonra yap\u0131lm\u0131\u015ft\u0131r.<\/p>\n\n\n\n

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

Kendimi bildim bileli bel a\u011fr\u0131s\u0131 \u00e7ekiyorum. Yirmili ya\u015flar\u0131m\u0131n ba\u015f\u0131nda g\u00f6steri atlay\u0131\u015f\u0131 yaparken belimi k\u0131rd\u0131m (4 numaral\u0131 bel); sol kal\u00e7amla m\u00fccadele ettim ve olaydan sonra artan bel a\u011fr\u0131s\u0131 ve diz a\u011fr\u0131s\u0131 \u00e7ektim. Ara s\u0131ra sebepsiz yere tak\u0131l\u0131p d\u00fc\u015f\u00fcyordum. \u00d6zel olarak g\u00f6r\u00fc\u015ft\u00fc\u011f\u00fcm bir kal\u00e7a uzman\u0131 d\u0131\u015f\u0131nda gitti\u011fim t\u00fcm uzmanlar semptomlar\u0131 s\u0131rt k\u0131r\u0131\u011f\u0131ma ba\u011flad\u0131. Hamstringlerim, add\u00fckt\u00f6rlerim ve quadlar\u0131m neredeyse kapanm\u0131\u015ft\u0131. Fizyoterapi ekibi onlar\u0131 tekrar \u00e7al\u0131\u015ft\u0131rd\u0131 ama ne kadar \u00e7ok \u00e7al\u0131\u015f\u0131rsam \u00e7al\u0131\u015fay\u0131m g\u00fcc\u00fc artt\u0131ramad\u0131k. \u0130\u015fte o noktada bir n\u00f6rolo\u011fa g\u00f6r\u00fcnmem tavsiye edildi.<\/p>\n\n\n\n

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

Te\u015fhis konulmad\u0131. K\u0131z karde\u015fim \u00e7ok hafif bir hastal\u0131ktan muzdarip.\nKollar\u0131nda g\u00fc\u00e7s\u00fczl\u00fck. <\/p>\n\n\n\n

En b\u00fcy\u00fck zorluklar olarak neleri g\u00f6r\u00fcyorsunuz?\nLGMD ile ya\u015famda<\/strong><\/p>\n\n\n\n

Her zaman \u00e7ok aktif oldum ve me\u015fgul olmay\u0131 seviyorum. Eskiden\nbir yere varmak i\u00e7in her zaman ince kesmek.<\/p>\n\n\n\n

En b\u00fcy\u00fck zorluk h\u0131zl\u0131 hareket edememek,\nmerdivenleri t\u0131rman\u0131r ve genellikle ko\u015fu\u015ftururlar.<\/p>\n\n\n\n

E\u011fer i\u015fe gidip geliyorsam ve kalabal\u0131\u011fa ayak uydurmam gerekiyorsa,\n\u00e7anta ta\u015f\u0131mak ya da \u00e7ok yorgun oldu\u011fumda baston kullanmak zorunda kal\u0131yorum.\nal\u0131\u015fmaya \u00e7al\u0131\u015f\u0131yorum. D\u00fcr\u00fcst olmak gerekirse bundan ger\u00e7ekten nefret ediyorum.<\/p>\n\n\n\n

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

K\u00fc\u00e7\u00fck ya\u015flardan itibaren bir \u015feyler deneyimlemeye ve e\u011flenmeye hevesliydim.\nbenim hayat\u0131m. Seyahat ettim, Uganda'da bir hay\u0131r kurumu i\u00e7in \u00e7al\u0131\u015ft\u0131m, \u00e7ok say\u0131da spor yapt\u0131m\nve Londra'da 2012 oyunlar\u0131n\u0131 in\u015fa eden Olimpiyat \u0130daresi i\u00e7in \u00e7al\u0131\u015ft\u0131\nmek\u00e2nlar. \u0130\u015f sa\u011fl\u0131\u011f\u0131 ve g\u00fcvenli\u011fi alan\u0131nda \u00e7al\u0131\u015f\u0131yorum ve Olimpiyatlarda ge\u00e7irdi\u011fim s\u00fcre\nhareket en iyisiydi ve o zamanlar enerjim oldu\u011fu i\u00e7in minnettar\u0131m.\ngidip gelme ve tam olarak kat\u0131lma becerisi. Afrika bir deneyimdi ve\nyar\u0131s\u0131; \u015fimdi bunu yapabilece\u011fimi sanm\u0131yorum, bu y\u00fczden en b\u00fcy\u00fck ba\u015far\u0131m\nHayat\u0131ma devam ediyorum, f\u0131rsatlar yarat\u0131yorum ve de\u011ferlendiriyorum. \u015eu anda \u00fczerinde \u00e7al\u0131\u015ft\u0131\u011f\u0131m\n\u0130ngiltere'de b\u00fcy\u00fck bir altyap\u0131 projesi; b\u00fcy\u00fck projeleri seviyorum, bu y\u00fczden\nHala bunu yapmak ve hala ata binmek (yani bir nevi!) benim i\u00e7in ba\u015far\u0131d\u0131r.<\/p>\n\n\n\n

LGMD sizi nas\u0131l etkiledi?\nBug\u00fcn oldu\u011fun ki\u015fi:<\/strong><\/p>\n\n\n\n

Hala hayat\u0131ma devam ediyorum ve yarat\u0131yorum\nf\u0131rsatlar var ama art\u0131k durum farkl\u0131. Eskiden olduk\u00e7a korkusuzdum; ancak s\u0131n\u0131rl\u0131\nHareketlilik, zaman zaman dengesiz ve yorgun olmak \u00f6zg\u00fcveni etkiliyor. Bu oldu\nKafam\u0131 toparlamak zor. Bana muhtemelen bir kas hastal\u0131\u011f\u0131 oldu\u011fu s\u00f6ylendi\u011finde\ndistrofisi y\u00fcz\u00fcnden 6 ay boyunca her g\u00fcn \u00f6zel olarak a\u011flad\u0131m. \u0130nternet inan\u0131lmaz bir \u015fey.\nkaynak ama ayn\u0131 zamanda zarar verici de olabilir. Sonum \u015fu anki gibi olabilir, biraz\nya da tekerlekli sandalyede kalp pili ile solunum yaparken\ninternette okuyordum. Kimseye s\u00f6ylemedim; ne s\u00f6yleyece\u011fimi ya da nas\u0131l s\u00f6yleyece\u011fimi bilmiyordum.\nA\u00e7\u0131kla. Kocam\u0131 ve i\u015fimi kaybedece\u011fimden korkuyordum. Kim ister ki\n\u00f6zellikle in\u015faat ortam\u0131nda yard\u0131m almadan hareket edemeyen biri?...\nKontrol edemedi\u011fim bir de\u011fi\u015fimle kar\u015f\u0131 kar\u015f\u0131yayd\u0131m, kendimi kapana k\u0131s\u0131lm\u0131\u015f ve savunmas\u0131z hissediyordum.<\/p>\n\n\n\n

Her \u015feyi kontrol edemeyece\u011finizi \u00f6\u011frendim.\n\u015fimdi ve burada olman\u0131n de\u011ferini bilmek. Y\u0131llar \u00f6nce h\u0131zl\u0131ca y\u00fcr\u00fcmek i\u00e7in ara verdi\u011fimi hat\u0131rl\u0131yorum.\ndiz\u00fcst\u00fc bilgisayarda \u00e7al\u0131\u015f\u0131rken k\u00f6pe\u011fim. Standart bir Cuma \u015feyiydi. At\nSabah erkenden i\u015fler tamamlan\u0131r, diz\u00fcst\u00fc bilgisayar a\u00e7\u0131l\u0131r, tarlada h\u0131zl\u0131 bir tur at\u0131l\u0131r.\n\u00d6\u011fle yeme\u011fi vakti. Saat 6 gibi diz\u00fcst\u00fc bilgisayar\u0131m kapand\u0131... 7'de bir kadeh \u015farap! Manzaray\u0131 hat\u0131rlam\u0131yorum.\nya da k\u00f6pe\u011fimin yapt\u0131\u011f\u0131 aptalca \u015feylerin aptalca ve\nNormalde onun ad\u0131na \u00f6z\u00fcr dilemem gerekirdi. Telefona yap\u0131\u015f\u0131p kald\u0131\u011f\u0131m\u0131 hat\u0131rl\u0131yorum.\no y\u00fcr\u00fcy\u00fc\u015fler s\u0131ras\u0131nda. \u015eimdi hayvanlar\u0131mla birlikteyken onlar\u0131 takdir ediyorum.\na\u011fa\u00e7lar, kokular ve ku\u015flar\u0131n \u015fark\u0131lar\u0131. \u015eimdi ve burada olmaktan keyif al\u0131yorum. De\u011fer veriyorum\nH\u00e2l\u00e2 sahip oldu\u011fum \u015feyler; g\u00f6rme duyum, i\u015fitme duyum ve mizah anlay\u0131\u015f\u0131m.<\/p>\n\n\n\n

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

Bunu \u015faka yollu, rahats\u0131z edici bir durum olarak tan\u0131ml\u0131yorum.\ndaha az yemem ve fazladan bir dilim pastay\u0131 ka\u00e7\u0131rmam anlam\u0131na geliyor. Ciddi olarak\nBunun ger\u00e7ekten sa\u00e7mal\u0131k oldu\u011funu unutmay\u0131n; beyin \u015fa\u015f\u0131rt\u0131c\u0131 ama ac\u0131mas\u0131zd\u0131r. Bazen bir \u015fekilde\nBu rahats\u0131zl\u0131\u011f\u0131m\u0131 unutup hareket etmeye \u00e7al\u0131\u015f\u0131yorum ve sadece \u00e7\u00f6k\u00fcyorum. D\u00fc\u015f\u00fcnmek zorunday\u0131m\nnas\u0131l y\u00fcr\u00fcd\u00fc\u011f\u00fcn\u00fcz ve hareket etti\u011finiz hakk\u0131nda konu\u015fmak yorucu. Neyse ki, bir s\u00fcr\u00fc\n\u00c7o\u011fu g\u00fcn\u00fc atlatmam\u0131 sa\u011flayan do\u011fal enerji.<\/p>\n\n\n\n

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

Her zaman bir g\u00fcn\u00fc bir \u015feylerle doldurmak isterdim.\nB\u00fct\u00fcn gece dans ederdim ve birka\u00e7 kadeh fazla i\u00e7erdim. Ben olsam\nEve y\u00fcr\u00fcyerek d\u00f6nmekte \u0131srar ediyorum (m\u00fckemmel g\u00fcn\u00fcm\u00fcn sabah\u0131n erken saatlerinde oldu\u011funu hayal ediyorum.\nBritanya yaz\u0131nda ger\u00e7ekten iyi bir g\u00fcn ge\u00e7irdi\u011fimizde) bir Hintli veya \u00c7inli arac\u0131l\u0131\u011f\u0131yla\nRestoran.<\/p>\n\n\n\n

K\u00f6pekle kanepede uyuyakald\u0131ktan sonra\nsonunda uyanmak ve yata\u011fa gitmek; ak\u015famdan kalma olman\u0131n etkisiyle merdivenleri s\u00fcr\u00fcnerek \u00e7\u0131kmak\nbir kas erimesi hastal\u0131\u011f\u0131ndan ziyade. Muhtemelen bir fincan \u00e7ay al\u0131rd\u0131m.\nsabaha kadar yata\u011f\u0131n yan\u0131nda kalacakt\u0131.<\/p>\n\n\n\n

Sabah erkenden ata binmek i\u00e7in uyan\u0131rd\u0131m.\narkada\u015flar; kafam\u0131 bo\u015faltmak i\u00e7in en yak\u0131n tepeye do\u011fru g\u00fczel bir y\u00fcr\u00fcy\u00fc\u015f yapt\u0131m. Bir sonraki\ng\u00f6revim, bulabildi\u011fim en b\u00fcy\u00fck tepeye do\u011fru uzun bir k\u00f6pek y\u00fcr\u00fcy\u00fc\u015f\u00fc ve bir pub olurdu\nE\u011fer y\u00fczle\u015febilirsem k\u00f6pe\u011fin sa\u00e7\u0131 ve kocamla \u00f6\u011fle yeme\u011fi i\u00e7in. Taraf\u0131ndan\n\u00d6\u011fleden sonra bir demlik \u00e7ay ve bir ton\n\u00c7ikolata.<\/p>\n\n\n\n

Yorgun olurdum \u00e7\u00fcnk\u00fc hi\u00e7 uyumam\u0131\u015ft\u0131m ve bir s\u00fcr\u00fc\ntemiz hava. O \"iyi yorgunluk\" hissi.<\/p>\n\n\n\n

Daha fazlas\u0131n\u0131 okumak i\u00e7in \"LGMD Spotlight\nR\u00f6portajlar\" veya yakla\u015fan bir r\u00f6portajda yer almak i\u00e7in g\u00f6n\u00fcll\u00fc olmak,\nl\u00fctfen web sitemizi ziyaret edin: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:  Rosamund  Age: 43 years old Country: […]<\/p>","protected":false},"author":1,"featured_media":3089,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13],"tags":[],"class_list":["post-3088","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Rosamund - 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\/2019\/11\/03\/individual-with-lgmd-rosamund\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Rosamund - 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