{"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\/es\/individuals-with-lgmd-interviews\/2019\/11\/03\/individual-with-lgmd-rosamund\/","title":{"rendered":"INDIVIDUO CON LGMD: Rosamund"},"content":{"rendered":"<div class=\"wp-block-image\"><figure class=\"aligncenter is-resized\"><img decoding=\"async\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27354%27%20height%3D%27199%27%20viewBox%3D%270%200%20354%20199%27%3E%3Crect%20width%3D%27354%27%20height%3D%27199%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2019\/11\/Unknown-Rosamund-1024x576.png\" alt=\"\" class=\"lazyload wp-image-3089\" width=\"354\" height=\"199\"\/><\/figure><\/div>\n\n\n\n<p><strong>LGMD \"ENTREVISTA EN PRIMER PLANO\"<\/strong><\/p>\n\n\n\n<p><strong>Nombre<\/strong>:  Rosamund &nbsp;<strong>Edad<\/strong>: 43 a\u00f1os<\/p>\n\n\n\n<p><strong>Pa\u00eds<\/strong>: Inglaterra Reino Unido<\/p>\n\n\n\n<p><strong>Subtipo LGMD<\/strong>: No\nNo se sabe; todav\u00eda estoy haciendo las pruebas con el John Walton Muscular\nen Newcastle, Reino Unido.<\/p>\n\n\n\n<p><strong>\u00bfA qu\u00e9 edad le diagnosticaron<\/strong>:\nA ra\u00edz de un m\u00e9dico a trav\u00e9s del trabajo en febrero de 2017 el m\u00e9dico estaba preocupado por\nmi funci\u00f3n muscular. La sugerencia de que era un tipo de distrofia muscular fue\nhizo en enero de 2018 despu\u00e9s de pagar para ver a un neur\u00f3logo privado en Londres.<\/p>\n\n\n\n<p><strong>\u00bfCu\u00e1les fueron sus primeros s\u00edntomas?<\/strong>:<\/p>\n\n\n\n<p>Sufro lumbalgia desde que tengo uso de raz\u00f3n. Me fractur\u00e9 la espalda (zona lumbar n\u00famero 4) cuando ten\u00eda poco m\u00e1s de 20 a\u00f1os mientras practicaba salto de obst\u00e1culos; ten\u00eda problemas con la cadera izquierda y cada vez sufr\u00eda m\u00e1s dolores lumbares y de rodilla despu\u00e9s del incidente. A veces me tropezaba y me ca\u00eda sin motivo. Todos los especialistas a los que acud\u00ed atribuyeron los s\u00edntomas a mi fractura de espalda, salvo un especialista en cadera al que concert\u00e9 una cita privada. Mis isquiotibiales, aductores y cu\u00e1driceps se hab\u00edan desconectado bastante. El equipo de fisioterapeutas consigui\u00f3 que volvieran a funcionar, pero por mucho que me esforzara no consegu\u00edamos fortalecerlos. Fue entonces cuando me aconsejaron que consultara a un neur\u00f3logo.<\/p>\n\n\n\n<p><strong>\u00bfTiene otros familiares que padezcan LGMD?<\/strong><\/p>\n\n\n\n<p>No est\u00e1 diagnosticada. Mi hermana mayor sufre una leve\ndebilidad en los brazos. <\/p>\n\n\n\n<p><strong>\u00bfCu\u00e1les cree que son los mayores retos\nde vivir con LGMD<\/strong><\/p>\n\n\n\n<p>Siempre he sido muy activa y me encanta estar ocupada. Sol\u00eda\nsiempre lo cortaba bien para llegar a alguna parte.<\/p>\n\n\n\n<p>El mayor reto es no poder moverse con rapidez,\nsubir escaleras y, en general, apresurarse.<\/p>\n\n\n\n<p>Si voy al trabajo y necesito seguir el ritmo de la gente,\no estoy muy cansada, tengo que usar un bast\u00f3n al que me ha costado acostumbrarme.\nacostumbrarme. La verdad es que lo odio.<\/p>\n\n\n\n<p><strong>\u00bfCu\u00e1l es su mayor logro?<\/strong>:<\/p>\n\n\n\n<p>Desde muy joven quise experimentar cosas y disfrutar de la vida.\nde la vida. He viajado, he trabajado en Uganda para una organizaci\u00f3n ben\u00e9fica, he practicado mucho deporte\ny trabaj\u00e9 para la Olympic Delivery Authority en Londres construyendo las instalaciones de los Juegos de 2012.\nde 2012. Trabajo en el \u00e1mbito de la salud y la seguridad en el trabajo.\nol\u00edmpico fue el mejor y estoy agradecida de haber tenido la energ\u00eda y la\ncapacidad para hacer el viaje y participar plenamente. \u00c1frica fue una experiencia y media.\ny media; no creo que pudiera hacerlo ahora, as\u00ed que mi mayor logro es seguir\ncon mi vida, creando y aprovechando oportunidades. Actualmente trabajo en un\nActualmente trabajo en un gran proyecto de infraestructuras en el Reino Unido.\nMe encantan los grandes proyectos, as\u00ed que seguir haci\u00e9ndolo y seguir montando a caballo (bueno, algo as\u00ed) son logros para m\u00ed.<\/p>\n\n\n\n<p><strong>\u00bfC\u00f3mo ha influido la LGMD en la persona\npersona que eres hoy:<\/strong><\/p>\n\n\n\n<p>Sigo adelante con mi vida y creando\noportunidades, pero ahora es diferente. Antes no ten\u00eda miedo a nada, pero la movilidad limitada\nmovilidad, la inestabilidad y el cansancio afectan a la confianza. Ha sido\ndif\u00edcil de asimilar. Cuando me dijeron que probablemente era una distrofia\nmuscular, llor\u00e9 en privado todos los d\u00edas durante seis meses. Internet es un recurso\npero tambi\u00e9n puede ser perjudicial. Podr\u00eda acabar como ahora, un poco peor\nun poco peor o en una silla de ruedas con un marcapasos si aceptaba todo lo que le\u00eda en Internet.\nestaba leyendo en l\u00ednea. No se lo cont\u00e9 a nadie; no ten\u00eda ni idea de qu\u00e9 decir o c\u00f3mo\nexplicarlo. Ten\u00eda miedo de perder a mi marido y mi trabajo. \u00bfQui\u00e9n quiere\n\u00bfQui\u00e9n quiere a alguien que no puede moverse sin ayuda, sobre todo en la construcci\u00f3n?\nMe enfrentaba a un cambio que no pod\u00eda controlar, me sent\u00eda atrapada y vulnerable.<\/p>\n\n\n\n<p>He aprendido que no se puede controlar todo, a\napreciar el aqu\u00ed y el ahora. Recuerdo que hace a\u00f1os me tomaba un descanso para pasear\na pasear a mi perro mientras trabajaba con el port\u00e1til. Era algo habitual de los viernes. Caballo\nlas tareas del caballo por la ma\u00f1ana temprano, el port\u00e1til encendido y una vuelta r\u00e1pida por el campo a la hora de comer.\nla hora de comer. Apagaba el port\u00e1til sobre las 6... \u00a1una copa de vino a las 7! No recuerdo mucho el paisaje\nni de las estupideces que hac\u00eda mi perro, aparte de que eran estupideces y\nnormalmente implicaban que me disculpara por \u00e9l. Recuerdo estar pegado al tel\u00e9fono\ndurante esos paseos. Ahora, cuando estoy con mis animales, los aprecio, aprecio\nlos \u00e1rboles, los olores y el canto de los p\u00e1jaros. Disfruto del aqu\u00ed y ahora. Valoro\nlas cosas que a\u00fan conservo: la vista, el o\u00eddo y el sentido del humor.<\/p>\n\n\n\n<p><strong>\u00bfQu\u00e9 quiere que el mundo sepa sobre la LGMD?<\/strong>:<\/p>\n\n\n\n<p>Lo describo en broma como una enfermedad inc\u00f3moda que\nsignifica que tengo que comer menos y perderme el trozo extra de tarta. En serio\nel cerebro es asombroso pero cruel. A veces\nA veces me olvido de que tengo la enfermedad, voy a moverme y me desmorono. Tener que pensar\nen c\u00f3mo caminar y moverse es agotador. Afortunadamente, tengo mucha\nenerg\u00eda natural que me ayuda la mayor\u00eda de los d\u00edas.<\/p>\n\n\n\n<p><strong>Si su LGMD pudiera \"curarse\" ma\u00f1ana mismo, \u00bfqu\u00e9\nser\u00eda lo primero que querr\u00edas hacer<\/strong>:<\/p>\n\n\n\n<p>Siempre con ganas de llenar el d\u00eda de cosas, empezaba\ncon la noche anterior; bailaba toda la noche y beb\u00eda de m\u00e1s. Insistir\u00eda\ninsistir\u00eda en volver a casa andando (me imagino que mi d\u00eda perfecto es durante el\nverano brit\u00e1nico, cuando realmente hace buen d\u00eda) pasando por un restaurante indio o chino.\nchino.<\/p>\n\n\n\n<p>Despu\u00e9s de quedarme dormida en el sof\u00e1 con el perro\nme despertaba y me iba a la cama; sub\u00eda las escaleras arrastr\u00e1ndome por la resaca\nen lugar de a una enfermedad de desgaste muscular. Probablemente me llevar\u00eda una taza de t\u00e9\nque permanecer\u00eda junto a la cama hasta la ma\u00f1ana siguiente.<\/p>\n\n\n\n<p>Me levantaba temprano y sal\u00eda a montar a caballo con mis amigos.\na caballo con unos amigos, a galope por la colina m\u00e1s cercana para despejarme. La siguiente\nsiguiente ser\u00eda un largo paseo con el perro por la colina m\u00e1s grande que encontrara y un pub\ny almorzar con mi marido. Por la\ntarde estar\u00eda acurrucada en el sof\u00e1 con una tetera y un mont\u00f3n de chocolate.\nchocolate.<\/p>\n\n\n\n<p>estar\u00eda cansado porque no hab\u00eda dormido nada y una carga\nde aire fresco. Esa sensaci\u00f3n de \"buen cansancio\".<\/p>\n\n\n\n<p>Para leer m\u00e1s \"LGMD Spotlight\no para ofrecerse voluntario para una pr\u00f3xima entrevista,\nvisite nuestro sitio web: <a href=\"https:\/\/www.lgmd-info.org\/es\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:&nbsp; Rosamund &nbsp;Age: 43 years old Country: [&hellip;]<\/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":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>INDIVIDUAL WITH LGMD: Rosamund - 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