Vanasse Michel, Paré Hélène, Zeller Reinhard
Neurology Service, CHU Sainte-Justine and Department of Pediatrics, Université de Montréal, Montréal, Canada.
Handb Clin Neurol. 2013;113:1491-5. doi: 10.1016/B978-0-444-59565-2.00019-8.
Most neuromuscular diseases (NMD) are rare inherited conditions presenting a relentlessly progressive course. Some NMD are associated with intellectual impairment and many are complicated by musculoskeletal, cardiac, or respiratory problems. Rehabilitation care of NMD is thus best provided by a team of medical specialists and health professionals working closely together in an interdisciplinary fashion. Rehabilitation for patients with NMD should include physical evaluation but also assessment of their ability to manage their daily activities or work and their need for assistive devices. With appropriate physical, psychological, and social support, those patients can maintain a good quality of life and an adequate level of well-being. Surgical management of musculoskeletal problems in children related to neuromuscular disorders remains a highly controversial subject. This review is based mainly on the author's personal experience with conservative and periopeporative rehabilitation care for neuromuscular diseases. A multidisciplinary approach is advocated. The importance of proactive respiratory care is emphasized. Rehabilitation after surgical treatment of spinal deformities is analyzed outlining the particular aspects in spinal muscular atrophy, Duchenne's muscular dystrophy, congenital muscular dystrophy, and congenital myopathies. A disease- specific approach is recommended as the wide variety of different neuromuscular pathologies requires careful planning of treatment strategies best managed in a team approach.
大多数神经肌肉疾病（NMD）是罕见的遗传性疾病，呈进行性发展。一些NMD与智力障碍有关，许多还伴有肌肉骨骼、心脏或呼吸问题。因此，NMD的康复护理最好由一组医学专家和健康专业人员以跨学科方式紧密合作提供。NMD患者的康复应包括身体评估，还应评估他们管理日常活动或工作的能力以及对辅助设备的需求。在适当的身体、心理和社会支持下，这些患者可以维持良好的生活质量和适当的幸福水平。儿童神经肌肉疾病相关肌肉骨骼问题的手术治疗仍然是一个极具争议的话题。本综述主要基于作者对神经肌肉疾病保守和围手术期康复护理的个人经验。提倡采用多学科方法。强调积极进行呼吸护理的重要性。分析了脊柱畸形手术治疗后的康复情况，概述了脊髓性肌萎缩症、杜氏肌营养不良症、先天性肌营养不良症和先天性肌病的特殊方面。由于各种不同的神经肌肉疾病需要精心规划治疗策略，而团队方法最适合管理这些策略，因此建议采用针对特定疾病的方法。
