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Rehabilitation is the process of assisting a person to maximize function and quality of life. Therefore, rehabilitation matters to people with neuromuscular diseases because it enables them to reach their fullest potential despite the presence of a disability. Too often, patients are told "there is nothing we can do" for their neuromuscular conditions. At times this judgment is not expressed explicitly, but transpires from nonverbal cues during patient encounters. Such attitudes cast a dark shadow on the therapeutic alliance between the physician and the patient and lead to disengagement and lower quality of care. On the contrary, here we will argue that "there is always something we can do" for our patients. While there are no life-prolonging treatments for many neuromuscular disorders, interventions are often available that can assist people in continuing to function independently and safely, both in their vocational and personal lives, manage their symptoms, and live fulfilling lives in spite of the presence of a physical impairment. In this chapter, we will look at neuromuscular diseases from a rehabilitation perspective. We will first review the role of exercise, orthoses, mobility aids, adaptive equipment, and environmental modifications with respect to their impact on function and quality of life. We will then develop a rehabilitation framework to address common neuromuscular problems such as axial weakness, spinal deformities, proximal upper and lower limb weakness, hand weakness, foot drop, falls, foot abnormalities, joint contractures, spasticity, pain, ptosis, dysphagia, and dysarthria.
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Rehabilitation is sometimes overlooked because it is not clear who is in charge of it and when it should begin. It is commonly accepted that the multifaceted rehabilitation needs of neuromuscular patients are best served by a multidisciplinary team that may include neurologists, physiatrists, nurses, physical therapists (PTs), orthotists, occupational therapists (OTs), speech and language pathologists (SLPs), nutritionists, respiratory therapists, psychologists, palliative care experts, pain medicine specialists, vocational consultants, recreational therapists, and social workers. Receiving care in a multidisciplinary clinic has been suggested to benefit people with certain neuromuscular diseases [i.e., amyotrophic lateral sclerosis (ALS)] by optimizing health care delivery and, possibly, prolonging survival and enhancing quality of life.1 But what is the role of each member of the multidisciplinary team and who is responsible for advocating for the patient and for coordinating care among the different rehabilitation professionals? Neuromuscular specialists periodically assess the patients' functional status in a neuromuscular clinic. We therefore argue that the neuromuscular specialist, most often a neurologist or a physiatrist, is ideally positioned to lead the rehabilitation efforts while leveraging the expertise of the different team members. This may seem like a daunting and time-consuming task. However, most of what is required is simply adequate knowledge of the available tools and effective communication. A clear understanding of the role and capabilities of each team member is essential for proper referrals and results in higher quality of care and a time-efficient practice.
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Neuromuscular specialists most commonly refer patients to PTs, OTs, ...