INTRODUCTION

Receiving a diagnosis of amyotrophic lateral sclerosis (ALS) will unquestionably alter your life in almost every aspect.

You should remember, however, that no one knows exactly how you personally will be affected by the disease or how rapidly it will progress. Statistics can shed some general light on what you can expect from ALS, but they can’t predict the course of ALS from person to person.

Nonetheless, it’s daunting to know that as the disease progresses it will have practical effects on your everyday life. These can range from complicating simple tasks like fastening buttons to limiting major abilities like speaking and breathing.

Not long ago, there were few solutions to the many problems and challenges that ALS poses. Fortunately, that situation is changing.

New techniques and new products are continually emerging that make it increasingly possible for people with ALS to adapt to the disease, to pursue their interests, and to continue to live rich and rewarding lives. MDA has designed this guide to help you manage your experience with ALS so that you can attain the utmost daily satisfaction. The guide will give you a vital tool: information.

This book was created with permission of Stanley Appel, M.D., director of the MDA/ALS Center at Methodist Hospital in Houston, whose staff created an earlier version of the book more than 20 years ago. ALS: Maintaining Mobility, A Guide to Physical Therapy and Occupational Therapy proved to be an invaluable tool for families affected by ALS and many other neuromuscular diseases. This update of that indispensable text is presented by the Muscular Dystrophy Association’s Publications staff, with the assistance and guidance of physical therapists, occupational therapists, physicians and other ALS experts from MDA’s program to ensure it’s both current and accurate.

In this practical guide, you’ll find advice and information that address needs ranging from those of a person with ALS who is ambulatory and mostly independent to those of a person who needs extensive assistance.

The guide offers in Chapter 1 a broad sample of practical assistive devices that compensate for weakness and fatigue and are available to help you accomplish a range of daily activities — from eating meals to talking on the telephone.

In addition to the technological possibilities available to help you live your everyday life, simpler techniques of planning and organizing activities can help. In Chapter 2 you’ll find suggestions for ways to conserve energy throughout the course of ALS.

ALS will also require some adaptations to your environment, both for safety and to accommodate to new equipment. Chapter 3 suggests how your home environment may be modified to help you to carry on your daily life.

Your freedom of movement or mobility — whether in your home or outside it — will contribute to your ability to enjoy life. Chapter 4 presents various types of equipment that will help you to maintain your mobility. The chapter also addresses supports for your head and neck and your hands.

With the gradual deterioration of your breathing muscles you’ll encounter challenging medical complications. There are, however, devices available to compensate for those complications. Chapter 5 explores a number of devices and procedures that can help you extend your life.

Not only the muscles that produce breathing but also those that produce speech will likely be affected by ALS. An astonishing array of assistive technology is now available to help you continue to communicate with others despite the effects of the disease. In Chapter 6 you’ll find a discussion of several approaches to communication in ways other than traditional speech.

Weakness can limit your ability to accomplish such everyday activities as getting into and out of beds or chairs. You may need assistance moving from one surface to another; these movements are called transfers. Transfer techniques and equipment have been developed to assist you and your caregiver team, and you’ll find a discussion of transfers in Chapter 7.

Chapter 8 covers exercise. In the early stages of ALS exercise may be helpful in reducing stress and preventing muscle atrophy that may result from disuse. As weakness progresses, exercise may permit you to avoid some of the discomfort that can occur with immobility, particularly a frozen shoulder (adhesive capsulitis). Remember that exercise should always be approved by your health care team and should never create discomfort.

In Chapter 9, the guide presents illustrated instructions to help you properly do exercises that you and your health care team deem appropriate.

The resources section of this guide, Chapter 10, catalogs sources where you can find additional information about some of the products, tips and services discussed in earlier portions of the guide. This section lists a number of articles in MDA publications that give more details about the topics covered in the guide, as well as books, organizations, videotapes and other resources.

USING THE GUIDE

This guide should be used as an integral part of your individualized care program, and provide guidelines to optimize your strength, function, physical comfort and safety. It should be read along with guidance from physicians; physical, occupational, respiratory and speech therapists; and other health care professionals. A team approach is best in managing ALS, with you as the team captain.

In practical terms, you may find that you need some assistive equipment right away, and you may not need other items for months or years after your diagnosis. In the same practical vein, some items require extra time for ordering, customizing and funding (power wheelchairs are a prime example).

SPECIAL NOTE: Because there are so many choices and the course of ALS is somewhat unpredictable, professionals strongly urge you to consider your future needs while you can do so at your leisure. Part-time use of some interventions early in the disease course can make the transition easier and save a great deal of your energy and strength.

MDA understands that, along with a need for practical solutions, ALS brings a host of emotional, family and financial concerns that are threaded through every stage of progression. We hope this guide to everyday life will give you and your loved ones specific details you need to understand choices, make decisions and plan ahead — steps that will help you to maintain control over your life and adjust to the progression of ALS.

Remember, too, that the Muscular Dystrophy Association is a resource for access to medical care, emotional support, financial assistance, up-to-date information, equipment and hope. Keep in close touch with your local MDA office and clinic. You’ll also find help in MDA's new book, MDA ALS Caregiver's Guide. (Click here for more about the services offered by MDA ALS Division.)

Everyday Life With ALS: A Practical Guide
If you have ALS, or care for someone who does, this practical guide will answer many of your questions about equipment, therapies and accessibility that arise over the course of the disease.