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10 claves para vencer al Párkinson

11 abril 2012 - 5:29 - Autor:

“La vida no es sino una continua sucesión de oportunidades para sobrevivir”, Gabriel García Márquez. La cita abre el capítulo 4 del libro Párkinson… un as en la manga, en el que José Luis Molero Ruiz, afectado por la enfermedad desde los 42 años, narra con ironía y mucho sentido práctico su lucha con y contra “el compañero de viaje”.

El mundo se me vino abajo. Comencé una etapa de abulia generalizada, sin estímulo por el trabajo, la familia… nada tenía interés para mí. Por otra parte, salir a la calle era una obsesión. Me sentía observado por las miradas de cuantos pasaban a mi lado…Por eso, un día de los muchos en los que estaba con la mirada perdida, comencé a darle vueltas a la cabeza y llegué a varias conclusiones. Si tenía una enfermedad que quizá terminaría por invalidarme, lo mejor que podía hacer era disfrutar del tiempo en el que estuviera en buen estado físico, e invalidarla yo a ella.

El libro forma parte de la Biblioteca Párkinson, colección editada por la Asociación Párkinson Madrid, y que componen otros dos títulos. Cuidarse para cuidar mejor, dirigido a los cuidadores y escrito por Laura Carrasco y Susana Donate, psicólogas clínicas; y Antes de decir no puedo, inténtalo, orientado a los familiares, escrito por Eva Pilar Chueca, terapeuta ocupacional.

Hoy, 16 años después de que le diagnosticaran la enfermedad, José Luis Molero estará al frente de los actos de celebración del Día Mundial del Párkinson.

Cartel del Día Mundial del Parkinson 2012

Él es ahora el Presidente de la Federación Española de Párkinson y el responsable, entre otros, de que muchos buenos proyectos estén saliendo adelante. Por ejemplo, hoy presentará el servicio de atención de ParkinsonPulsaON, una red social de afectados que ofrece consultas on line y telefónicas. Tel 902 113 942 (de lunes a viernes, de 9 a 14 y de 15 a 20 h.)

También estará el 17 de abril en la Gala de monólogos solidarios, en el Teatro Infanta Isabel de Madrid, con gente como Dani Mateo, La Parroquia del Monaguillo, Iñaki Urrutia o Flipy.

En cualquier caso, en una ocasión así no hay mejor forma de ser útil a la sociedad que tratando de condensar las recomendaciones y consejos para luchar contra la enfermedad que Eva, Laura, Susana y José Luis han reunido en esa colección de libros. Aquí están las 10 claves para enfrentarse al párkinson, y derrotarlo.

Para los enfermos (hay muchos trucos en el capítulo 7 del libro Un as en la manga)

  • En el momento del diagnóstico, toma parte activa en el tratamiento, recuerda las cosas importantes superadas a lo largo de tu vida, rodeate de gente optimista, relacionate, el párkinson no se contagia.
  • Acepta la ayuda de la gente. No te consideres una carga, ni un inválido, puedes mantener tu independencia.
  • Busca una rutina, oblígate a hacer algo.

Para los cuidadores

  • Infórmate sobre la enfermedad y apóyate en profesionales (psicólogos, trabajadores sociales, etc) y en la familia y los amigos. Las necesidades cambian continuamente, estaréis siempre en continua adaptación, algo muy cansado porque, cuando crees que ya está todo estabilizado, aparece un nuevo síntoma o varía alguno que ya sufría.
  • Aceptar y afrontar la enfermedad. Muy relacionado con el punto anterior. La enfermedad es una parte de la vida del enfermo y del familiar, pero no su vida. No hay que hacer del pá́rkinson el centro de la misma, pero tampoco olvidarla. La medicación y una vida activa adecuada permiten tener una razonable calidad de vida.
  • Prioriza. Que esté alimentado es vital, que la cama esté hecha, no.
  • Cuídate y cuidarás mejor. Busca tiempo para ti, para cuidar tu cuerpo, para llorar, para reír.
  • Participa, únete a asociaciones de pacientes, te ayudará mucho, podrás compartir alegría y dolor, dudas y soluciones.
  • Pide ayuda cuando estés agotado.
  • Prepárate para cuando la tarea de cuidador termine. A veces el cuidador se centra tanto en el enfermo que, cuando este fallece o es ingresado en un centro, no encuentra sentido a su vida, se siente inútil, solo… Por ello es conveniente mantener las amistades y aficiones para afrontar la nueva situación.

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356 Comentarios

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Gracias José Antonio por este artículo. Tengo a mi madre de 82 años con Parkinson. Toda información sobre el tema es bienvenida tanto para ella como para mi.

ME GUSTARIA SABER MAS DE LOS AVANCES CONTRA EL PARKINSON.
ANGELICA

Siempre confié en Dios pero ahora considero que es el unico culpable de mi enfermedad y si no me sana no cumple su Palabra

cuesta, claro que cuesta…pero permitir que te hunda, no hara mas facil el camino, cierto?

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