Books on Medical Information and Life with SMA

Guide to the Evaluation and Management of Patients with Neuromuscular Disease by Dr John Bach (2004)
A great majority of people with neuromuscular diseases like muscular dystrophy, ALS, spinal muscular atrophy, myasthenia gravis and post-poliomyelitis continue to be told that they have "terminal illnesses" and are not offered management options that can spare them of cardiopulmonary morbidity and mortality. This book is unique in offering viable management alternatives that result in a patients prolonged survival and enhanced quality of life. 

 
The Pediatric Tracheostomy Home Care Guide by Cynthia Bissel, R.N. (and parent of a child with a trach)
Pediatric Tracheostomy Home Care Guide is written from the unique perspective of an RN who is also a mom with a child with a trach. Cynthia Bissell also used contributors and reviewers who are parents of trached children, nurses, doctors, speech pathologists and respiratory therapists that have vested interests in pediatric tracheostomy care. It is a comprehensive and reader-friendly guide. It is not specifically geared towards children with SMA, but it does have lots of information that applies to caring for our kids.

  
Guide to the Evaluation and Management of Neuromuscular Disease by Dr. John Bach
Dr. Bach is a leading researcher in the management of neuromuscular respiratory problems and emphasizes the use of noninvasive techniques. The book addresses all aspects of caring for a person with a neuromuscular disease and is written in easily understandable language. The book is appropriate for parents, therapists, and doctors. Published in 1999.

 
Noninvasive Mechanical Ventilation by Dr. John Bach
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. Published in 2002. For more details see http://www.doctorbach.com/biblio.htm

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