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Announcing the Updated Living with ALS Resource Guide Series

Over the last year and a half, The ALS Association has been working with authors from Association Chapters, ALS centers and clinics and other ALS organizations to rewrite the original Living with ALS manual series, adding new and relevant content. The series has been developed for people living with ALS, family members, caregivers and other healthcare professionals, as well as our chapter and national staff.

The collection of resource guides will be available on our website, as well as in print on the Care Services Order Portal. These materials will be available by for download and order in early February. A 12th resource guide, Families and ALS: A Family Guide for Talking with and Supporting Children, will be available soon after the release of new Living with ALS series.

The manual series will cover the following 11 topic areas:

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

Provides and 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.

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

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.

  • Changes in Thinking and Behavior in ALS

Addresses how thinking and behavior may be affected by ALS and how these changes can impact disease course, symptom management and decision making.

  • Living with ALS: Planning and Decision Making

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.

  • Understanding Insurance and Benefits When You Have ALS

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.

  • Managing Symptoms of ALS

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.

  • Functioning When Mobility is Affected by ALS

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.

  • Adjusting to Swallowing Changes and Nutritional Management in ALS

Helps 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.

  • Changes in Speech and Communication Solutions

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.

  • Adapting to Changes in Breathing When You Have ALS

Explains how breathing 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.

  • Approaching End of Life in ALS

Examines thoughts and feelings about dying and end of life. Approaching 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.

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