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Care Services educational materials and resources available for order by the general public, The ALS Association Chapters, and non-affiliated organizations
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Care Services educational materials and resources available for order by the general public, The ALS Association Chapters, and non-affiliated organizations
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About 10 percent of people with ALS have familial ALS, or fALS, which means more than one family member is affected by the disease. The other 90 percent is sporadic. Scientists believe that most cases of fALS are due to mutations in genes. Both familial and sporadic ALS cause muscle weakness and loss of the ability to walk, speak, eat, move, and eventually breathe.
It can be overwhelming to learn that you or a family member has ALS. Receiving the diagnosis of familial ALS can raise extra questions and concerns about the future. This booklet will help answer these questions and provide information to support you and your family.
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These signs indicate a caregiver of the opposite gender is assisting their loved one in a public restroom. They have a magnetic strip attached so that they may be easily affixed to the metal frame of the restroom door, alerting others as they enter.
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The File of Life is a card which contains vital personal medical information and is kept on the outside of your refrigerator in a bright red magnetic pocket, readily accessible to EMTs when they arrive on an emergency call. The medical card lists your emergency medical contacts, health problems, medications taken, allergies, recent surgeries and more. People living with ALS and their caregivers are encouraged to each have a File of Life card in case of an emergency.
The pouch size is 4 ¼” x 5 ¼”
The card size is 4 7/8” x 11 7/8”
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People living with ALS can maintain independence longer and enjoy improved quality of life when provided with options for symptom management, assistive technology, adaptive equipment, education, care services, and emotional support. The ALS Association’s certified centers and clinics follow a multidisciplinary care model that brings together a team of health and social care professionals with expertise in addressing the various and ever-changing needs of people living with ALS and their families. This booklet will provide a helpful overview of the multidisciplinary team approach, what one can expect during a typical clinic visit, as well as additional options for care and support from providers outside of the core care team.
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Las personas que viven con ELA pueden mantener su independencia por más tiempo y disfrutar de una mejor calidad de vida si cuentan con opciones para manejar los síntomas, tecnología asistencial, equipos de adaptación, educación, servicios de cuidados y apoyo emocional. Las clínicas y los centros certificados de la ALS Association siguen un modelo multidisciplinario de atención que reúne a un equipo de profesionales especializados en la atención médica y social para responder a las distintas necesidades, que van cambiando con el tiempo, de las personas que viven con ELA y sus familias. Este manual le brindará un resumen útil del enfoque basado en un equipo multidisciplinario, le explicará lo que sucede durante una visita clínica típica, y le sugerirá opciones adicionales de atención y apoyo por parte de proveedores que están fuera del equipo principal que lo atiende.
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These signs indicate a caregiver of the opposite gender is assisting their loved one in a public restroom. They have a magnetic strip attached so that they may be easily affixed to the metal frame of the restroom door, alerting others as they enter.
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The resource guide was created primarily for families living with ALS, including parents, grandparents, siblings, and other family members. However, it was also created to support the many school-based and health care professionals who work with families affected by ALS. The goal of this guide is to help families start answering many of the questions that will be asked, as well as to offer support and suggestions for professionals assisting with families affected by ALS. A key theme throughout this guide is communication — how to do it, maintain it, and include it in everyday life.
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This resource guide provides an overview of ALS, what it is, and how it affects your body. It provides information on what kind of resources are available to help you deal with ALS more effectively.
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Esta guía de recursos brinda una descripción general de la ELA, lo que es y cómo afecta su cuerpo. Brinda información sobre el tipo de recursos que tiene disponibles para ayudarle a lidiar con la ELA de manera más efectiva.
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This resource guide addresses the psychological, emotional, and social issues that you must face when your life is affected by ALS. It provides information on how to cope with the many lifestyle changes and adjustments that occur when you live with ALS.
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Esta guía de recursos aborda los aspectos psicológicos, emocionales y sociales que deberá enfrentar cuando su vida se ve afectada por la ELA. Brinda información sobre cómo lidiar con los diferentes cambios en su estilo de vida y las modificaciones que deberá hacer al vivir con ELA.
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This resource guide addresses how thinking and behavior may be affected by ALS and how these changes can impact disease course, symptom management, and decision making.
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Esta guía de recursos aborda cómo el pensamiento y el comportamiento pueden verse afectados por la ELA y cómo esos cambios pueden modificar el curso de la enfermedad, el manejo de los síntomas y la toma de decisiones.
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This resource guide reviews areas where careful planning and decision making will be required and will provide you with resources to help you and your family plan for the future.
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Esta guía de recursos repasa áreas en las que se necesitará una cuidadosa planificación y toma de decisiones y le brindará recursos para ayudarles a usted y a su familia a planificar para el futuro.
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This resource guide provides strategies and helpful hints to better navigate health insurance and benefits. While understanding insurance and benefits may feel overwhelming, the guidelines outlined here should help simplify the process for you.
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Esta guía de recursos brinda estrategias y sugerencias útiles para que pueda analizar mejor su seguro y sus beneficios. Si bien comprender el seguro y los beneficios puede parecer abrumador, las pautas que se detallan en esta guía deberían servir para simplificarle el proceso.
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This resource guide discusses a variety of symptoms that may affect you when you have ALS. As the disease progresses, various functions may become affected and it is helpful to understand potential changes so that you know what to expect and how to manage these new changes and symptoms.
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Esta guía de recursos cubre diferentes síntomas que pueden afectarlo si tiene ELA. A medida que la enfermedad avanza, diferentes funciones de su cuerpo se verán afectadas y es útil entender los posibles cambios para que pueda saber qué esperar y cómo manejar esos nuevos cambios y síntomas.
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Graphic novel for youth 7-12. Delivered in a graphic novel format, this book uses direct quotes from youth in the ALS research projects. These quotes help situate the learning style and experiences of children in ALS.
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This resource guide covers the range of mobility issues that occur with ALS. It discusses exercises to maximize your mobility, as well as how to adapt your home and activities of daily living to help you function more effectively.
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Older youth/young adult guide, 19-25. This book takes a more serious tone, again following several young adults as they manage their own lives with the care needed for their loved one with ALS, school and relationships. It is minimally illustrated and again uses actual stories and quotes.
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Choose you own adventure guide, middle school youth 13-18. This book follows the stories of three youth, providing options for how they talked to people, who they talked to, and what was the outcome. The book allows other youth to choose who they might want to talk about ALS and their experiences. A companion online version has been developed.
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Esta guía de recursos cubre la variedad de problemas de movilidad que se producen con la ELA. Trata sobre los ejercicios que puede hacer para maximizar su movilidad, cómo adaptar su casa y sus actividades de la vida diaria para que le ayuden a funcionar mejor.
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This resource guide will help you understand how swallowing is affected by ALS and what you can do to maintain nutrition for energy and strength and to keep your airway open.
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