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Managing Secondary Conditions Related to NMD
Managing Secondary Conditions Related to NMD
There are several excellent books for family caretakers and healthcare professionals on managing pediatric neuromuscular disease as well as the lifelong, progressive needs of adults with NMD. Guide to the Evaluation and Management of Neuromuscular Disease (Hanley & Belfus, Inc., 1999), by John R. Bach, M.D., is one, as are Raising a Handicapped Child: A Helpful Guide for the Parents of the Physically Disabled (Ballantine, 1991) and Raising a Child with a Neuromuscular Disorder (Oxford University Press, 1999), by pediatrician Charlotte Thompson, MD, director of the Center for Handicapped Children and Teenagers in San Francisco, CA.
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Swallowing
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Restrictive Lung Disease
- General information about Restrictive Lung Disease
- Recommendation of the American Thoracic Society on Respiratory Care in Duchenne Muscular Dystrophy
- In addition, non-profit organizations dedicated to a single disease are often among the best online resources for information about serious side-effects related to NMD. The potential for respiratory problems that may lead to a life-threatening emergency often goes unrecognized in several neuromuscular diseases, such as Charcot-Marie-Tooth 1A (HMSN).
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Pain
Pain is a side-effect of NMD that often goes untreated. The American Chronic Pain Association (ACPA) is an international non-profit, self-help organization that offers educational materials and peer support groups to help individuals live fuller lives in spite of chronic pain. http://www.theacpa.org/
- Anesthesia and Surgical Procedures
Anyone having surgery should be aware of the risks associated with the surgical procedure and/or complications that may arise during and/or after it. For patients with neuromuscular diseases (NMD), there are frequently added risks with the use of anesthesia. While the administration of anesthetics to people with NMDs has become safer over the past decade, there are several things people with NMDs should know regarding their care and the potential for increased risk of complications due to the anesthesia. While certain risk factors are increased in people with NMDs who undergo anesthesia, each individual is different and reactions to anesthetics may be different. The following is a brief description of complications that may occur among people with NMDs who have surgery. As with all medical procedures, you should talk to your doctor about the specifics of your case and what you should anticipate.
Things to be aware of before surgery.
