Living with ALS Resource Guides

The ALS Association's Living with ALS Resource Guides were created because of the rapidly expanding information and research in the clinical management of ALS. These cornerstone educational materials were designed to inform and educate people about ALS in a comprehensive and easily understood format. They address many of the common concerns and issues that face people living with ALS.

Reading all 11 resource guides at one time can be overwhelming to those living with ALS and their families. We highly recommend that you only access the information that pertains to your present circumstances.

Once you have reviewed one or more of The ALS Association's Living with ALS Resource Guides, you may have questions and you may want to know where to go for even more information. Feel free to contact the Oregon and SW Washington Chapter of The ALS Association via our toll-free number at 503-238-5559 or e-mail

Download the guides below or order free printed copies here.

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What is ALS? An Introductory Resource Guide for Living with ALS

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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After the ALS Diagnosis: Coping with the “New Normal”

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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Changes in Thinking and Behavior in ALS

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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Living with ALS: Planning and Decision Making

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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Understanding Insurance and Benefits When You Have ALS

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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Managing Symptoms of ALS

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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Functioning When Mobility is Affected by ALS

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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Adjusting to Swallowing Changes and Nutritional Management in ALS

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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Changes in Speech and Communication Solutions

This resource guide covers how speech can be affected by ALS and explores a variety of techniques, technologies, and devices available for improving communication. By maintaining communication with others, you continue to make a significant difference in their lives, while retaining control of your own.
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Adapting to Changes in Breathing When You Have ALS

This resource guide explains how breathing is affected by ALS. Specifically, it will teach you the basics of how the lungs function, the changes that will occur, and how to prepare for the decisions that will need to be made when the lungs need maximal assistance.

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Approaching End of Life in ALS

This resource guide examines thoughts and feelings about dying and the end of life. Approaching the end of life is difficult and support is critical to help sort out feelings, expectations, and plans. By talking to friends, family, professionals, and planning and communicating your wishes, you can help prepare for the best possible end-of-life phase.

Supplemental Instructions Of EOLC

Supplemental Instructions for End of Life Care with Amyotrophic Lateral Sclerosis

This document can be used to help you think about what you do or do not want at end of life. You can fill it out and attach it to your Advanced Directive or just use it as a tool to help you have end of life discussions with your health care representative, family, friends and loved ones.

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Families and ALS Resource Guide

This resource guide is the result of many years of clinical social work practice and research with families, children, and youths affected by neurological illness. While much attention is paid to the person with ALS and their adult family member/caregivers, children and youths are often voiceless, despite experiencing much of the same shock, sadness, caregiving, and grief as their adult counterparts.

Order Printed Resources

The ALS Association provides a variety of printed materials free of charge to help deal with the impact of ALS.