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Guía De Recursos Sobre La Parálisis

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Guía De Recursos Sobre La Parálisis Guía de Recursos sobre la Parálisis Tercera Edición por Sam Maddox GUÍA DE RECURSOS SOBRE LA PARÁLISIS Tercera Edición por Sam Maddox ©2014, Fundación Christopher y Dana Reeve, todos los derechos reservados incluido el derecho a reproducir el libro o partes del mismo de cualquier manera excepto donde esté provisto por la Ley de Copyright de Estados Unidos. Este libro lo produjo el Centro de Recursos para la Parálisis (Paralysis Resource Center, PRC) a través de un acuerdo cooperativo con los Centros para el Control y Prevención de Enfermedades (premio no 1U59DD000838). El contenido del libro es la exclusiva responsabilidad del PRC y no representa necesariamente la opinión oficial de los centros para el Control y Prevención de Enfermedades. Fotografía de tapa: Timothy Greenfield-Sanders. Diseño del libro: Michael Kellner El material del libro se presenta con el propósito de educar e informar al lector sobre la parálisis y sus efectos. Ninguna parte del libro debe tomarse como diagnóstico médico o consejo sobre tratamiento. La información no debe remplazar el consejo de un médico u otro proveedor de salud calificado. Si tiene cualquier pregunta al leer el libro, el PRC recomienda seriamente comunicarse con un médico o un proveedor de atención médica calificado. ISBN: 978-0-9726831-7-3 Para obtener más información o pedir ejemplares adicionales del libro: Paralysis Resource Center 636 Morris Turnpike, Suite 3A Short Hills, New Jersey 07078 Llame gratis al: 1-800-539-7309 Email: [email protected] www.paralysis.org Agradecimientos ienvenidos a la Tercera Edición de la Guía de Recursos sobre la Parálisis; Bactualizada, ampliada, profundizada y, esperamos, más útil que nunca. Permítanme destacar ciertas personas clave en la Fundación Christopher y Dana Reeve, incluida la Vicepresidente Ejecutiva y Directora de Investigaciones Susan Howley, como la vicepresidente superior (VPS) en Mercadeo y Comunicaciones Maggie Goldberg, Niketa Sheth, VPS/Calidad de Vida. La Directora Superior del PRC, Sheila Fitzgibbon y el Director de Iniciativas Especiales Douglas Landman ayudaron a verificar los datos del libro y repasar los puntos del texto. Otros miembros de la fundación como Rebecca Sultzbaugh, Donna Valente, Jenn Hatfield, Beth Eisenbud, Kathy McArthur, Patricia Stush, Katie Spiegel, Bernadette Mauro y el equipo de Especialistas en Información del PRC también ayudaron con la revisión. Gracias en especial y felicitaciones por una gran labor a Christopher Voelker, cuyos retratos brindan personalidad y propósito a esta edición. El Sr. V es un maestro de luz, sombra y escenarios. Y gracias a Melanie Manson, esposa de Chris, por el arte y la manualidad con peinados y maquillaje. Muchas gracias a Michael Kellner por el cómodo y coherente diseño del libro. Gracias a Kate Lapin por servicios editoriales. Gracias a Carlos Caprioli por traducir el texto del inglés al español y a Nelson Velásquez por servicios de producción y diseño. Infinitas gracias a otro señor con el mismo nombre, el Dr. Carlos Caprioli, sin el cual no podría haber hecho esto, y a Natalia Romero, Ph.D., investigadora en la Escuela Médica de Harvard. Este libro se logró gracias al apoyo del Departamento de Salud y Servicios Humanos (HHS), los Centros para el Control y Prevención de Enfermedades (CDC), el Centro Nacional sobre Defectos de Nacimiento y Discapacidades de Desarrollo (NCBDDD). Muchas organizaciones en la comunidad de discapacidad aportaron recursos. Nuestro anhelo es el estándar más elevado de verisimilitud. La Guía de Recursos sobre la Parálisis está dedicada a la memoria de Christopher Reeve y Dana Morosini Reeve. Vivieron una vida plena y valiente, con propósito y pasiones. El espíritu de Chris y Dana está presente en cada página del libro: la vida es preciosa, elegir es bueno y la esperanza indetenible. SM Thousand Oaks, California Tabla de Contenidos Retratos por Christopher Voelker 1 1. Trastornos principales 34 Apoplejía 35 Ataxia de Friedreich 41 Atrofia Muscular de Origen Medular 43 Enfermedad de Lyme 45 Esclerosis Lateral Amiotrófica 46 Esclerosis Múltiple 51 Espina Bífida 58 Lesión de la Médula Espinal 61 Investigaciones sobre la lesión medular 75 La Red de NeuroRecuperación 89 Lesión del Plexo Braquial 99 Leucodistrofias 99 Malformaciones Arteriovenosas, vea addenda 412 Mielitis Transversa 100 Neurofibromatosis 103 Parálisis Cerebral 104 Síndrome de Guillain-Barré 107 Síndrome de Pos Polio 108 Trauma Cerebral 110 Tumores Espinales 116 2. El cuidado de la salud y el bienestar 120 Cuidado del intestino 121 Cuidado de la piel 124 Control de la vejiga 128 Depresión 133 Reflejo disfuncional autónomo 136 Espasticidad 138 Fatiga 141 Corazón, quistes, osificación heterotópica 143 Dolor 144 Control respiratorio 151 Siringomielia 157 Trombosis de las venas profundas 158 Afrontar y aceptar 160 Programa de apoyo entre compañeros y familiares 166 Medicina alternativa 168 Ejercicio y estado físico 171 Nutrición 177 Salud sexual / Fertilidad 182 Masculina 182 Femenina 186 3. Cuidado agudo y rehabilitación 190 4. Vida activa 206 Deportes recreativos 208 Deportes en equipo 224 Arte y creatividad 229 5. Viajes 232 6. Herramientas y tecnología 246 Sillas de ruedas, acomodación y posicionamiento 248 Computadoras / Controles ambientales 259 Modificaciones al hogar 263 Vehículos y conducción 268 Ropa 274 Animales de servicio 275 Aparatos y dispositivos para caminar 277 7. Encarando el sistema 279 Puntos básicos del ADA 282 Seguro social y Medicare 285 Encontrar trabajo 294 Planificación financiera 301 8. Militares y Veteranos de Guerra 304 Retratos por Christopher Voelker 333 9. Zona para niños 366 10. Cuidados 380 Recursos 389 Glosario 394 Índice 414 KEN REGAN/CAMERA 5 Bienvenida del PRC HOLA, Y BIENVENIDOS A LA GUÍA DE RECURSOS sobre la Parálisis. Este libro, creado por el Centro de Recursos para la Parálisis (PRC) de la Fundación Christopher y Dana Reeve, les brinda conexiones e información completa. Nuestra meta es ayudarles a encontrar lo que precisen para estar lo más saludables, activos e independientes posible. El libro abastece a toda la comunidad de personas afectadas por la parálisis, incluidos, por supuesto, aquellos seres queridos y cuidadores, quienes saben que la parálisis es una cuestión familiar. Los fundadores, Christopher y Dana, comprendían el miedo que da encontrarse subrepticiamente paralizado. Pasar de estar activo un día a inmóvil el siguiente arroja de repente a una vida completamente nueva. Los cambios son enormes y a menudo pueden parecer demasiado. Primero, permítannos asegurarles algo: no están solos. En los Estados Unidos hay 1,25 millones de personas con parálisis a causa de lesiones medulares, y cientos de miles de otras con parálisis a causa de distintos tipos de traumas o enfermedades. Aunque se trata de un club del que nadie quisiera ser parte, existen personas que han pasado por situaciones similares con muchas ganas de ayudar a optimizar la salud y el bienestar. vi | Christopher & Dana Reeve Foundation El PRC fue creado para brindar servicios de recursos informativos en una lista completa de temas relacionados con la parálisis, incluida información específica sobre la salud como también clínica sobre los distintos trastornos causantes de la parálisis, sea apoplejía, trauma o una enfermedad. Tenemos alianzas muy estrechas con numerosas organizaciones nacionales para asegurar brindarles la información más relevante y confiable. La parálisis es mucho más que una cuestión médica, claro. Desde el PRC esperamos incentivarles a estar activos y participar en su comunidad por su cuenta lo más posible. Tenemos recursos disponibles en viajes y recreación, sobre aparatos de asistencia especializada y automóviles e información clave para encarar los sistemas de cuidado de salud y seguros médicos. También encontrarán información sobre una multitud de organizaciones en todo el país que ofrecen programas para fomentar la vida independiente de los niños y adultos con parálisis. Verán muchos listados concentrados en accesibilidad, promoción de la salud, apoyo legal, investigaciones y más. Hemos financiado una gran cantidad de subvenciones de Calidad de Vida a través del PRC y la Fundación Christopher y Dana Reeve para apoyar tales organizaciones por todo el país. Si no encuentran lo que necesitan aquí en el libro, visiten nuestra página www.paralysis.org. Si prefieren hablar con un especialista en información entrenado, llamen (gratis al 1-800-539-7309) o envíen un email (infospecialist@ ChristopherReeve.org) e investigaremos para responder a sus preguntas. Finalmente, y tal vez lo más importante, queremos que sepan que la parálisis no es un trastorno sin esperanza. Los científicos están logrando avances constantes en descifrar las complejidades de las enfermedades y las lesiones en el cerebro y la médula espinal. Estamos convencidos que lograrán desarrollar tratamientos para la parálisis aguda y crónica. Para profundizar sobre estas investigaciones prometedoras, y ver cómo apoyar la misión de la Fundación, visiten la página www.ChristopherReeve.org — EL EQUIPO DEL PRC Guía de Recursos sobre la Parálisis | vii Mensaje del Presidente y CEO BIENVENIDOS A LA GUÍA DE RECURSOS SOBRE LA PARÁLISIS, una fuente de recursos para ayudarte a ustedes y sus seres queridos a través del caótico mundo de la parálisis. Las metas del libro y del Centro de Recursos para la Parálisis de la Fundación Christopher y Dana Reeve son las de mejorar la vida de millones de personas que viven con parálisis. Ofrecemos información en la que pueden confiar, para tomar
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