Further Information

If you have any questions we recommend that you obtain a copy of Guide To The Evaluation and Management of Neuromuscular Disease. Bach JR. Philadelphia: Hanley & Belfus 1999, 165 pages, ISBN 1-56053-301-3, $32 in the U.S., from Hanley and Belfus at 1-800-962 1892, 1-215-546 7293, hanleyandbelfus.com.

This book was written for both health care professionals and patients and their care providers. It provides a clear understanding of the management principles for people with neuromuscular conditions with topics including assistive equipment, rehabilitation, nutrition, and prevention of orthopedic and heart complications as well as respiratory evaluation and management. It has a glossary that explains relevant medical terms and a bibliography that is annotated to guide the reader in obtaining further publications for their own or their physicians' further instruction.

Noninvasive Mechanical Ventilation
This book describes the use of inspiratory and expiratory muscle aids to prevent the pulmonary complications of lung disease and conditions with muscle weakness. It also describes treatment and rehabilitation interventions specific for patients with these conditions. This book is unique in presenting the use of entirely noninvasive management alternatives to eliminate respiratory morbidity and mortality and avoid the need to resort to tracheostomy for the majority of patients with lung or neuromuscular disease. Philadelphia: Hanley & Belfus 2002, 600 pages, 200+ illustrations. ISBN 1-56053-549-0. $39(US) [Order Here]

After reading the appropriate material, for further information contact the appropriately trained individuals for someone who can provide the appropriate equipment in your country. If there is no one from your country, you may need to come here and be trained yourself or do the best you can with the equipment that you must obtain (most often a portable ventilator or BiPAP machine, oximeter, and Cough-Assist device) and with the information in the above book and the Bibliography.

You can visit the very educational web sites of noninvasive ventilation users like Jeff Gray, a 37-year-old man with Duchenne muscular dystrophy, at www.non-invasiveventusers.net.

Services are also available through The Center and MDA Clinic in New Jersey. In the United States, you may contact our trained respiratory therapist, Mr. Lou Saporito at beeper: 1-973-466-9128 for questions, but please read the appropriate material first.

It is strongly recommended that, when at all possible, patients contact Ms. Keisha Brady () for an appointment and directions to the Jerry Lewis MDA Clinic.

Further Information
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