Los retos de la esclerosis múltiple avanzada - Europedias.com
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Los retos de la esclerosis múltiple avanzada

La esclerosis múltiple es una enfermedad que puede tener diversas etapas. En algunos casos, esto significa que los síntomas empeorarán progresivamente y la persona entrará en la fase que conocemos como esclerosis múltiple avanzada.

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Cuando alguien tiene esclerosis múltiple avanzada, hay muchas funciones que pueden verse impactadas, como la movilidad, el habla o las habilidades cognitivas. Esto presenta nuevos retos para las personas con EM, que deben adaptarse a su nueva realidad.

Recuperar el control sobre la enfermedad

Con una enfermedad crónica, la sensación de falta de control puede afectar mucho a la autoestima y la confianza en nuestras propias capacidades. Por eso es muy importante tratar de mantener el control y la independencia en todos los ámbitos donde podamos.

Se puede optar por utilizar tecnología asistida, adaptar el hogar para hacerlo más accesible, hablar con familiares y amigos para poder hacer frente a las necesidades, unirse a grupos de esclerosis múltiple locales para tener apoyo y sentir menos soledad… Todas estas opciones ayudan a sentir un mayor control sobre la enfermedad a pesar de los cambios.

Gestionar otras enfermedades

Las personas con esclerosis múltiple son más susceptibles que la población general a tener también otras enfermedades, llamadas comorbilidades. Algunas de las más comunes son hipertensión, diabetes, enfermedades cardiovasculares, fibromialgia, depresión o ansiedad.

En una fase más avanzada de la EM, esto implica también tener que convivir con un mayor riesgo de hospitalizaciones y complicaciones médicas. Algunos ejemplos son:

  • Osteoporosis: la pérdida de movilidad y el sobrepeso, así como el tratamiento con corticosteroides, pueden provocar una pérdida de la densidad de los huesos.
  • Úlceras: pasar muchas horas en la cama o en una silla de ruedas puede crear úlceras por presión en la piel.
  • Neumonía por aspiración: los problemas al tragar pueden causar que las partículas de la comida lleguen a los pulmones.
  • Infecciones de vejiga o riñón: los problemas de incontinencia pueden, a la larga, causar infecciones graves en los órganos urinarios.
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Hacer frente a los altibajos emocionales

Los trastornos del estado de ánimo, como la depresión, son frecuentes en la EM y son aún más frecuentes cuando se tiene que lidiar con pérdidas de autonomía o el empeoramiento de la salud. Por eso es importante fomentar la resiliencia y contar con el apoyo de personas cercanas y profesionales.

Aunque los síntomas sean graves, optar por estilos de vida saludable sigue siendo una de las mejores opciones para mejorar el ánimo y la calidad de vida.

  • Salir al exterior y fomentar la vida social.
  • Realizar ejercicio adaptado a las limitaciones de movilidad, como la silla de ruedas.
  • Seguir una dieta saludable para evitar el sobrepeso y otras complicaciones.
  • Probar los masajes y tratamientos con calor para reducir el dolor y el estrés.
  • Optar por las terapias acuáticas.

 

Planificar el futuro

Según progresa la enfermedad, se va haciendo más necesaria la ayuda de terceras personas. En muchos casos, es la familia directa la que se hace cargo de las personas dependientes, pero hay que tener cuidado para no descuidar las necesidades de estas personas cuidadoras.

En caso necesario, conviene valorar la posibilidad de pedir ayuda externa. Las relaciones con la familia a menudo mejoran cuando no tienen que estar disponibles para cuidar a la persona con EM a todas horas y sin el estrés de tener que hacer siempre las tareas más exigentes físicamente.

Cuando la enfermedad está en fases muy avanzadas y los problemas de salud requieren de atención médica constante, se puede optar por programas de atención domiciliaria y equipos de soporte (PADES). Aunque puede generar angustia, es mejor planificar esta posibilidad antes de que sea absolutamente necesaria, ya que de esta forma se podrán valorar mejor todas las opciones y tomar una decisión más informada.

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Referencias

What to expect with advanced MS. Medical News Today. Disponible en: https://www.medicalnewstoday.com/articles/311411

Advanced Care Needs. National MS Society. Disponible en: https://www.nationalmssociety.org/Resources-Support/Living-with-Advanced-MS