{"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\/pt\/individuals-with-lgmd-interviews\/2020\/11\/15\/individual-with-lgmd-neil\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Neil"},"content":{"rendered":"

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

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

Idade<\/strong>: \u00a050<\/p>\n

Pa\u00eds<\/strong>: Estados Unidos da Am\u00e9rica<\/p>\n

LGMD Sub-tipo<\/strong>: Desconhecido<\/p>\n

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

Com que idade foi diagnosticado<\/strong>:<\/p>\n

Foi-me diagnosticado aos 47 anos de idade.<\/p>\n

Quais foram os seus primeiros sintomas<\/strong>: Comecei a ter fraqueza nas pernas, o que resultou em quedas frequentes. Comecei a sentir dificuldades em equilibrar-me, em levantar-me de cadeiras, em subir escadas e os joelhos a ceder, provocando quedas. Um dia, h\u00e1 4 anos, tive uma queda grave e fui \u00e0s urg\u00eancias. O m\u00e9dico recomendou-me que fosse a um neurologista. Durante a minha primeira consulta, o m\u00e9dico informou-me que os problemas n\u00e3o eram apenas nas pernas, mas tamb\u00e9m nos bra\u00e7os. Lembro-me de me sentir desamparada e assustada. Foram precisos v\u00e1rios meses para receber finalmente um diagn\u00f3stico. Foram meses, no m\u00ednimo, stressantes. Enquanto faz\u00edamos todos os testes com o neurologista, tivemos v\u00e1rias conversas. Durante uma consulta, fal\u00e1mos sobre a minha inf\u00e2ncia. De repente, os desafios que tive em crian\u00e7a passaram a fazer sentido.<\/p>\n

Quando era crian\u00e7a, nunca consegui fazer flex\u00f5es, flex\u00f5es, subir \u00e0 corda nas aulas de gin\u00e1stica, correr muito depressa, etc. Tamb\u00e9m nunca consegui levantar objectos pesados. Pensava que era apenas uma crian\u00e7a nerd e mais fraca. Abracei a m\u00fasica e tornei-me um nerd de bandas.<\/p>\n

Quando recebi o diagn\u00f3stico de distrofia muscular da cintura escapular, muitas coisas na minha vida pareceram fazer sentido.<\/p>\n

Tem outros familiares que sofrem de LGMD: <\/strong><\/p>\n

N\u00e3o, n\u00e3o tenho nenhum familiar que tenha LGMD. Acho que o meu caso \u00e9 um mist\u00e9rio.<\/p>\n

Quais s\u00e3o, na sua opini\u00e3o, os maiores desafios de viver com a LGMD?<\/strong>:<\/p>\n

Estou a fazer o meu melhor para me mexer o mais que posso para retardar a progress\u00e3o da doen\u00e7a; no entanto, noto que as minhas pernas est\u00e3o a ficar mais fracas. Tenho de ter mais cuidado para evitar quedas. Preciso de ouvir mais o meu corpo para determinar quando preciso de usar o andarilho ou a trotinete. Sei que n\u00e3o devo sentir-me envergonhado, mas o desafio \u00e9 ultrapassar o embara\u00e7o e ser quem eu sou. Os dispositivos de mobilidade s\u00e3o uma ferramenta para me ajudar a manter a minha independ\u00eancia.<\/p>\n

Estou tamb\u00e9m a come\u00e7ar a notar a fraqueza na parte superior dos bra\u00e7os. Tenho estado t\u00e3o concentrada nas minhas pernas; no entanto, estou a come\u00e7ar a preocupar-me com desafios adicionais no futuro. O desafio \u00e9 conseguir que eu n\u00e3o me preocupe com o futuro, mas que aproveite cada dia. Tenho uma fam\u00edlia maravilhosa e um ambiente de trabalho que me apoia para me ajudar a continuar a minha carreira de sucesso.<\/p>\n

Qual \u00e9 a sua maior realiza\u00e7\u00e3o<\/strong>:<\/p>\n

Penso que a minha maior realiza\u00e7\u00e3o foi a minha carreira nos Servi\u00e7os Sociais. Trabalho para uma ag\u00eancia chamada San Diego Regional Center (SDRC). Coordenamos servi\u00e7os para mais de 32.000 pessoas com defici\u00eancias de desenvolvimento e suas fam\u00edlias. O trabalho que fazemos para a nossa comunidade \u00e9 espantoso. Os nossos clientes s\u00e3o a nossa principal prioridade. Durante os \u00faltimos anos, tenho trabalhado como representante legislativo da nossa ag\u00eancia. Uma vez que o nosso financiamento prov\u00e9m do Estado da Calif\u00f3rnia, tenho de me reunir frequentemente com os legisladores estatais e o seu pessoal para garantir que o nosso sistema de presta\u00e7\u00e3o de servi\u00e7os aos nossos clientes e fam\u00edlias se mant\u00e9m intacto. Defendo efetivamente o nosso sistema. Penso que os nossos esfor\u00e7os t\u00eam sido muito bem sucedidos.<\/p>\n

Agora que me foi diagnosticada a LGMD, posso identificar-me com alguns dos clientes que servimos e que dependem de dispositivos de mobilidade para a sua independ\u00eancia. O meu diagn\u00f3stico s\u00f3 veio refor\u00e7ar a minha paix\u00e3o pela defesa, n\u00e3o s\u00f3 dos clientes que sirvo no SDRC, mas de TODAS as pessoas com defici\u00eancia.<\/p>\n

Como \u00e9 que a LGMD o influenciou a tornar-se a pessoa que \u00e9 hoje?<\/strong><\/p>\n

A LGMD, embora muito exigente, tornou-me mais consciente das necessidades das pessoas com defici\u00eancia na nossa comunidade. Como todos n\u00f3s, tenho dias bons e dias em que as minhas pernas e bra\u00e7os se sentem pesados e cansados. Tento ultrapassar os dias maus para garantir que fa\u00e7o alguma atividade f\u00edsica para retardar a progress\u00e3o da doen\u00e7a. Tornei-me \"mais forte\" emocionalmente porque n\u00e3o quero que a LGMD me impe\u00e7a de viver a minha vida. Tenho uma determina\u00e7\u00e3o mais forte para defender a causa e estou a fazer tudo o que posso para aumentar a sensibiliza\u00e7\u00e3o para a LGMD e para todas as doen\u00e7as de Distrofia Muscular.<\/p>\n

Sempre trabalhei numa profiss\u00e3o ligada ao servi\u00e7o p\u00fablico. Sempre tive o desejo de me candidatar a um cargo p\u00fablico. Apesar da LGMD, sou agora candidato \u00e0 C\u00e2mara Municipal da minha \u00e1rea. Uma das minhas principais prioridades \u00e9 defender as pessoas com defici\u00eancia e os cidad\u00e3os seniores. Quero garantir um melhor acesso aos nossos espa\u00e7os abertos, parques e sistemas de trilhos. A LGMD n\u00e3o me vai impedir de realizar os meus sonhos!<\/p>\n

O que quer que o mundo saiba sobre a LGMD<\/strong>: \u00a0<\/strong><\/p>\n

Quero que o mundo saiba que h\u00e1 algumas defici\u00eancias que n\u00e3o s\u00e3o vis\u00edveis. Ainda consigo andar e tento faz\u00ea-lo sempre que posso. Quando sinto as pernas cansadas\/pesadas, utilizo o andarilho. Para longas dist\u00e2ncias ou multid\u00f5es, preciso da minha scooter ou cadeira de rodas. Quando utilizo o espa\u00e7o para deficientes e n\u00e3o preciso do andarilho, por vezes recebo olhares de pessoas que n\u00e3o compreendem porque preciso do espa\u00e7o. As minhas pernas s\u00e3o muito fracas e corro o risco de cair. N\u00e3o me devo sentir embara\u00e7ado ou envergonhado por ter de utilizar o lugar de estacionamento para deficientes.<\/p>\n

Quero sensibilizar para a LGMD, angariar fundos para a investiga\u00e7\u00e3o sobre a LGMD e defender todos os que sofrem desta doen\u00e7a.<\/p>\n

Se a sua LGMD pudesse ser \"curada\" amanh\u00e3, qual seria a primeira coisa que gostaria de fazer?<\/strong>: \u00a0<\/strong><\/p>\n

Gostaria de poder andar de patins como fazia no liceu, jogar golfe com o meu filho, jogar uma partida de basebol e talvez aprender a surfar. Vivo no sul da Calif\u00f3rnia!<\/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\/pt\/individuals-with-lgmd-interviews\/2020\/11\/15\/individual-with-lgmd-neil\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" 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