While much attention is paid to the person living with ALS and their adult family member/caregivers, children are often voiceless, despite experiencing much of the same shock, sadness, caregiving, and grief as adults. Over the years, Dr. Kavanaugh has met with school personnel asking for guidance, manuals, and education on how to talk about and support children and adolescents living with and caring for a person living with ALS. These professionals recognized the limited information and the need to receive guidance in order to lessen the potential social isolation felt by kids in families with ALS — particularly in terms of how these issues affect school performance and attendance. This guide was created to address the needs of school staff and personnel working with children impacted by 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.
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.
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.
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.
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.
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.
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.
This resource guide covers how speech can be affected by ALS and explores a variety of techniques, technologies, and devices available for improving communication.
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.
This resource guide 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.
Older youth/young adult guide, ages 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.
This item is currently out of stock. You may download the item to print on your own here.
