Primary lateral sclerosis

Amyotrophic Lateral Sclerosis: A Guide for Patients and Families, ed 2

Mitsumoto H, Munsat TL, eds. New York, NY 10016, Demos Medical Publishing Inc, 2001, paperback, 472 pp, illus, ISBN: 1-888799-28-5, $34.95.

The stated intent of this second edition is to provide information primarily to people who face life with amyotrophic lateral sclerosis (ALS) and their caregivers. As such, it serves as a source of thorough but nontechnical material on all aspects of the disease, from initial diagnosis, through stages of increasing disability, to dying and bereavement. In 5 sections, the book provides basic background information on ALS and discusses various aspects of medical intervention, including 3 chapters addressing current research on ALS, personal quality-of-life issues, dying and bereavement, and additional sources of support and information.

The editors are leading authorities in the United States on the management of ALS. Dr Mitsumoto, now at Columbia University, was a leader in the clinical management program at the Cleveland Clinic for many years, and Dr Munsat has had extended involvement with programs in the Boston area. In this edition, they have collaborated with people from a number of health care professions, many of them associated with these 2 centers, to prepare a text that is wide-- ranging in scope. Contributors in the area of physical therapy include a physical therapist in clinical practice, 2 physical therapist assistants, and a physical therapist specializing in neuromuscular disease research.

The text is aimed at the general reader but is not simplistic. It is well written and avoids jargon and highly technical language. It would serve as a useful introduction to clinicians who are dealing with ALS for the first time as well as a guide to patients and families. Tables and illustrations are kept to a minimum but are clear and support the text when used. An extensive index serves as a useful guide for quick reference.

The book's redundancy, however, is a major failing point. There is extensive overlap and repetition of information in the various chapters, possibly a result of multiple authorship. This is particularly true among those chapters written by physiatrists, physical therapists, and occupational therapists. Although the repetitions do not present direct contradictions of fact, they do provide slightly differing information on occasion. At a minimum, this could confuse the casual reader and could possibly lead to a perception that the information is less than entirely valid.

Although ALS is a specific disease entity, it shares characteristics with many other gradually debilitating neuromuscular disorders that may or may not have fatal outcomes. For this reason, a great deal of the information in this text could also address issues of chronic paralysis and dysfunction in other conditions equally well. Although the patient with ALS and his or her caregivers would probably welcome a text written specifically with them in mind, health care professionals might find other texts, which are written with a broader basis but greater detail, to be more useful. For example, the chapter "Financial Realities" discusses the maze of health care financing with particular application to ALS. The information provided would be equally applicable in cases of other chronic neuromuscular diseases, and it is quite detailed; however, for the clinician, the chapter would repeat material that could be found in a book on financial management in health care.

Although some of the chapters, particularly those in the section on quality of life, present brief "human interest" anecdotes, case material is otherwise absent from this book. Given the current proliferation of first- and third-person narratives dealing with ALS and other similar neuromuscular diseases, this absence is not a severe problem. However, clinicians and faculty looking for a text that can support case-based analysis would not find this book to be a useful primary resource. In a professional instructional setting, texts with greater technical detail, even if they are not focused on this particular disease, would be preferable. In some clinical settings where the incidence of ALS is limited, the text would be a useful resource to have on hand for general reference for beginning clinicians or for families. Because it is directed to the patient and the family, it would be a reasonable book to recommend to those clients who have a high level of both curiosity and concern about their disease and who would a factual, written resource to be a helpful aid in guiding their progress.

Elizabeth H Littell, PT, PhD Albuquerque, NM

Dr Littell is a self-employed consultant in physical therapy education. Her teaching background is in basic sciences with an emphasis on neuroscience.

Copyright American Physical Therapy Association Jan 2002
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