{"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\/pt\/individuals-with-lgmd-interviews\/2017\/10\/16\/vicki\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Vicki"},"content":{"rendered":"<p><span style=\"color: #000000;\"><strong>LGMD \"ENTREVISTA EM DESTAQUE\"<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Nome<\/strong><\/span>:<span style=\"color: #000000;\">\u00a0 Vicki \u00a0\u00a0<strong>Idade<\/strong>: 44 anos de idade<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2017\/10\/LGMD2A-Vicki-.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1617 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2017\/10\/LGMD2A-Vicki--300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Pa\u00eds<\/strong>:  Canad\u00e1<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>LGMD Sub-tipo<\/strong>:  LGMD2A \/ Calpainopatia<\/span><!--more--><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"color: #000000;\"><strong>Com que idade foi diagnosticado<\/strong>:\u00a0<\/span><\/p>\n<p><span style=\"color: #000000;\">Foi-me diagnosticado aos 22 anos de idade.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Quais foram os seus primeiros sintomas<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Estava a ter dificuldade em subir escadas.  O m\u00e9dico disse-me que os tend\u00f5es dos meus tornozelos eram curtos e mandou-me a um neurologista para uma segunda opini\u00e3o, para ver se havia uma doen\u00e7a subjacente \u00e0 minha dor. <\/span>forma<span style=\"color: #000000;\"> eram curtos.  O meu neurologista mandou-me fazer uma biopsia muscular em Montreal.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Tem outros familiares que sofrem de LGMD:\u00a0 <\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\">N\u00e3o, sou a \u00fanica pessoa com LGMD na minha fam\u00edlia.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Quais s\u00e3o, na sua opini\u00e3o, os maiores desafios de viver com a LGMD?<\/strong>:\u00a0<\/span><\/p>\n<p><span style=\"color: #000000;\">S\u00e3o muitos os desafios: manter-me independente, sozinho em casa, e manter-me ativo na minha comunidade e com os amigos.  \u00c9 um desafio quando planeio ir a um s\u00edtio novo.  Tenho de me certificar de que o local \u00e9 acess\u00edvel para uma cadeira de rodas e tenho de me informar sobre as instala\u00e7\u00f5es sanit\u00e1rias.  Tamb\u00e9m \u00e9 dif\u00edcil manter-se positivo - quando n\u00e3o se pode realizar uma tarefa normal, ir a um s\u00edtio onde se quer ir, ou simplesmente ver outras pessoas a movimentarem-se t\u00e3o facilmente em p\u00fablico.\u00a0<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Qual \u00e9 a sua maior realiza\u00e7\u00e3o<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">A minha fam\u00edlia \u00e9 a minha primeira grande realiza\u00e7\u00e3o - o meu marido, Dean, e o nosso filho, Tyler.  Eles fazem com que a minha vida valha a pena; fazem-me sentir que posso fazer qualquer coisa.  Sou muito aben\u00e7oada.  Tamb\u00e9m tenho muito orgulho na minha angaria\u00e7\u00e3o de fundos para o MD.  No ano de <\/span>passado<span style=\"color: #000000;\">Organizei um leil\u00e3o anual, leil\u00f5es online no FB, vendas de garagem, rifas, etc.  A minha \u00faltima ideia foi fazer e vender ornamentos de feltro.  Comecei a faz\u00ea-los em janeiro de 2016.  Concebo um modelo, recorto-o em feltro, coso-os \u00e0 m\u00e3o e depois comercializo-os no Facebook. Eles t\u00eam a sua pr\u00f3pria p\u00e1gina no FB: \"Vicki's Handmade Ornaments for MD\".  O meu marido e eu do\u00e1mos todos os materiais para os fazer e at\u00e9 recebi cart\u00f5es de visita.  Todas as receitas da venda dos ornamentos v\u00e3o para a MD Canada todos os anos, em junho, para a nossa Caminhada pela Distrofia Muscular.  Desde que comecei, j\u00e1 vendi ornamentos no valor de ~$4000.  O meu objetivo de angaria\u00e7\u00e3o de fundos para a caminhada da MD tem sido $6000 nos \u00faltimos anos.  Encontro sempre uma forma de ultrapassar o meu objetivo.<\/span><\/p>\n<p><span style=\"color: #000000;\">O meu marido e eu come\u00e7\u00e1mos um regime de alimenta\u00e7\u00e3o saud\u00e1vel em mar\u00e7o.  Ambos fic\u00e1mos mais leves e saud\u00e1veis gra\u00e7as a ele.  Consegui deixar de tomar os 3 medicamentos que estava a tomar para a inflama\u00e7\u00e3o, dores e tens\u00e3o arterial elevada.  Sentimo-nos muito bem e gosto de espalhar a palavra!<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Como \u00e9 que a LGMD o influenciou a tornar-se a pessoa que \u00e9 hoje?\u00a0 <\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\">Estou a aprender cada vez mais sobre mim pr\u00f3prio todos os dias.  Os meus desafios e experi\u00eancias passadas fizeram-me aprender muitas coisas sobre mim pr\u00f3prio.  Aprendi a gostar de mim pelo que sou e n\u00e3o pelo que posso ou n\u00e3o posso fazer.  Tornei-me uma pessoa forte e auto-confiante.  Apercebi-me que sou quem sou e que a cadeira de rodas n\u00e3o me define!  Tamb\u00e9m perten\u00e7o a um grupo local de deficientes.  Vamos \u00e0s escolas secund\u00e1rias todas as Primaveras e falamos sobre como viver com uma defici\u00eancia e como podemos ajudar as pessoas com defici\u00eancia.  O meu discurso em p\u00fablico evoluiu muito gra\u00e7as a isto.\u00a0<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>O que quer que o mundo saiba sobre a LGMD<\/strong>:\u00a0<\/span><\/p>\n<p><span style=\"color: #000000;\">\u00c9 rara, mas \u00e9 tamb\u00e9m uma defici\u00eancia comum.  Alguns de n\u00f3s gostam que lhes seja oferecida uma ajuda, outros gostam de o fazer sozinhos, por muito dif\u00edcil que seja.  Todas as pessoas s\u00e3o diferentes.  Pergunte antes de ajudar algu\u00e9m e nunca se deixe desencorajar por algu\u00e9m com uma atitude ou personalidade negativa.  Eu sorrio sempre porque sei o que tenho na minha vida e a LGMD n\u00e3o me pode tirar o sorriso!<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Se a sua LGMD pudesse ser \"curada\" amanh\u00e3, qual seria a primeira coisa que gostaria de fazer?<\/strong>:\u00a0<\/span><\/p>\n<p><span style=\"color: #000000;\">H\u00e1 provavelmente muitas coisas que eu faria: viajar, nadar, correr, ir \u00e0s compras sozinha, trabalhar, fazer exerc\u00edcio, visitar a casa dos meus amigos com escadas, entrar e sair do <\/span>banheira<span style=\"color: #000000;\">limpar a casa, tenho a certeza que poderia fazer uma longa lista... Muitas destas coisas posso faz\u00ea-las agora, mas de uma forma modificada.  Seria bom fazer estas coisas sem pensar, de uma forma mais despreocupada.<\/span><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"color: #000000;\">* Para ler mais \"LGMD Spotlight Interviews\" ou para se voluntariar para uma pr\u00f3xima entrevista, visite o nosso site <\/span>em <span style=\"color: #000000;\"><a href=\"https:\/\/www.lgmd-info.org\/pt\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/span><\/p>\n<p>&nbsp;<\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:\u00a0 Vicki \u00a0\u00a0Age: 44 yrs. old Country: [&hellip;]<\/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":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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