Borasio G D, Miller R G
Department of Neurology, University of Munich, Klinikum Grosshadern, München, Germany.
Semin Neurol. 2001 Jun;21(2):155-66. doi: 10.1055/s-2001-15268.
Amyotrophic lateral sclerosis (ALS) is the most common form of degenerative motor neuron disease in adulthood. The clinical picture was accurately described by Charcot over 125 years ago and consists of generalized fasciculations, progressive atrophy and weakness of the skeletal muscles, spasticity and pyramidal tract signs, dysarthria, dysphagia, and dyspnea. Pseudobulbar affect is common. Disease-specific treatment options are still unsatisfactory. However, therapeutic nihilism is not justified as a large array of palliative measures is available to enhance the quality of life of patients and their families. Palliative care in ALS is a multidisciplinary effort requiring careful coordination. An open and frank disclosure of the diagnosis is of paramount importance. Nutritional deficiency due to pronounced dysphagia can be relieved by a percutaneous endoscopic gastrostomy. Respiratory insufficiency can be effectively treated by noninvasive home mechanical ventilation. The terminal phase of the disease should be discussed, at the latest, when symptoms of dyspnea appear in order to prevent unwarranted fears of "choking to death." Collaboration with hospice and completion of advance directives can be of invaluable help in the terminal phase.
肌萎缩侧索硬化症(ALS)是成年期最常见的退行性运动神经元疾病形式。125多年前,夏科准确地描述了该病的临床表现,包括全身性肌束震颤、骨骼肌进行性萎缩和无力、痉挛及锥体束征、构音障碍、吞咽困难和呼吸困难。假性球麻痹很常见。针对该疾病的治疗选择仍然不尽人意。然而,治疗虚无主义是不合理的,因为有大量的姑息治疗措施可用于提高患者及其家人的生活质量。ALS的姑息治疗是一项需要精心协调的多学科工作。坦诚公开地告知诊断至关重要。严重吞咽困难导致的营养缺乏可通过经皮内镜下胃造口术缓解。呼吸功能不全可通过无创家庭机械通气有效治疗。最晚应在出现呼吸困难症状时讨论疾病的终末期,以防止对“窒息死亡”的无端恐惧。在疾病终末期,与临终关怀机构合作并完成预先指示会有极大帮助。