Everyday Life with ALS: A Practical Guide

March 2010

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 also will require some adaptations to your environment, both for safety and to accommodate 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 always should 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 sections of this guide, found at the end of each chapter, catalog sources where you can find additional information about some of the products, tips and services discussed in earlier portions of the guide. These sections list 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.

Special Note


Be proactive! 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.

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).

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, up-to-date information, equipment assistance, resource referral and hope. Keep in close touch with your local MDA office and clinic. You’ll also find help in the MDA ALS Caregiver’s Guide, which supplements the information in this one.

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Resources

MDA ALS Division

The Muscular Dystrophy Association, one of the nation’s largest voluntary health agencies, works to defeat neuromuscular diseases. MDA’s ALS Division provides a vast array of services to people with ALS, one of more than 40 diseases covered by MDA. Since the early 1950s, MDA has been the world leader in battling ALS and providing services for those with the disease.

Through 120 local offices covering every U.S. community, MDA can help you and your family deal with ALS in many ways, including:

Clinics
Initial diagnostic services and therapeutic and rehabilitative care are offered at MDA’s network of clinics and MDA/ALS centers nationwide. MDA clinics are staffed by top neuromuscular disease specialists and health care experts.

Emotional support
There are nearly 200 MDA support groups across the country for people affected by neuromuscular diseases, their families and caregivers. Many are specific to ALS.

Equipment assistance
MDA assists individuals with obtaining durable medical equipment (DME) through the MDA national equipment program and referrals to community resources. People registered with MDA can receive help with the cost of repairs and/or modifications to all types of durable medical equipment they require due to ALS, including wheelchairs, leg braces, communication devices and more.

Flu shots
The Association pays for annual flu shots for people registered with MDA. Flu shots can help protect the respiratory system.

Online support
MDA’s ALS Division offers news and a series of regularly scheduled online chats, plus occasional conferences with ALS specialists and experts. Transcripts of past chats are posted. MDA also provides online support services through its Facebook and Twitter pages, and myMuscleTeam is an online program that helps individuals and caregivers recruit and coordinate in-home help.

Publications
MDA offers books, pamphlets and periodicals helpful to people with ALS. Printable copies are available from local MDA offices or can be found online.

  • Facts About ALS. Introductory booklet about the disease. (Also available in Spanish.)
  • MDA/ALS Newsmagazine. MDA's online newsmagazine dedicated to the ALS community, covering ALS research, medical, psychological, financial and caregiving issues. Research news and blogs are posted weekly, along with monthly in-depth ALS features and top selections from the ALS Newsmagazine archives.
  • Milestones in ALS Research. Booklet tracing major research developments since the 19th century. MDA has led the worldwide ALS research effort since the 1950s.
  • Quest. MDA’s quarterly magazine covering a range of issues related to neuromuscular diseases. Free to anyone with ALS who’s registered to receive MDA services; available by subscription to others. Visit the magazine's website for extra content and frequently updated news articles.

MDA booklets, periodicals and videos can be found at your local MDA office by calling (800) 572-1717. Downloadable versions of MDA publications can be found on this site. Many booklets are available in Spanish.

Research
MDA’s ALS Division is the nation’s leading nonprofit sponsor of ALS research, providing grants to top medical and scientific investigators worldwide. As of July 2012, MDA had invested more than $307 million in its ALS research program.

Videos
MDA-produced videos address concerns of people with ALS, their loved ones and caregivers.

  • Breathe Easy: A Respiratory Guide for People Living with Neuromuscular Diseases. Assisted breathing devices and techniques are explored in this medical education video.
  • Breath of Life. This version of Breathe Easy is geared to physicians and other medical professionals.
  • With Hope and Courage: Your Guide to Living with ALS. Geared to people with new ALS diagnoses and their families, this video designed both to orient and inform.

If you have a question about ALS, someone at MDA will help you find the answer. To find out more about MDA’s services, call your local MDA office or (800) 572-1717.

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General Resources About ALS

In addition, consult the MDA ALS Caregiver’s Guide, the companion book to Everyday Life with ALS, for a multitude of resources on a wide range of topics.

Books
Amyotrophic Lateral Sclerosis: A Guide for Patients and Families, 3rd edition, by Hiroshi Mitsumoto, M.D., and Theodore Munsat, M.D., Demos Health Publishing, 2009
Amyotrophic Lateral Sclerosis, by Robert G. Miller, M.D.; Deborah Gelinas, M.D.; and Patricia O’Connor, R.N, American Academy of Neurology Press and Demos Medical Publishing, 2005
Amyotrophic Lateral Sclerosis, ed. by Robert H. Brown, Jr., M.D., Vincent Meininger, M.D., and Michael Swash, M.D., Blackwell Science, 2000

MDA articles
MDA ALS Support Groups, MDA/ALS Newsmagazine, November-December 2009
The Lowdown on Following Up, MDA/ALS Newsmagazine, February 2009
Social Workers Offer a Wealth of Resources, MDA/ALS Newsmagazine, September 2007
How a Nurse Practitioner Fits Into the Health Care Puzzle, MDA/ALS Newsmagazine, November-December 2006
Share the Care Circles: Keeping the Circle Unbroken, MDA/ALS Newsmagazine, July 2003
Share the Care Circles: Who’s Going to Do What? MDA/ALS Newsmagazine, June 2003
Share the Care Circles: Asking for Help Can Be the Hardest Part, MDA/ALS Newsmagazine, May 2003
People with ALS Win with Multidisciplinary Team Approach, MDA/ALS Newsmagazine, December 2001

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