Rehabilitation in amyotrophic lateral sclerosis: Why it matters

Abstract

Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease that results in a constellation of problematic symptoms and a high patient and caregiver burden. Multidisciplinary care includes rehabilitation interventions that have the goal of assisting people to teach their fullest potential despite the presence of a disabling disease. Given the progressive nature of ALS, the clinician must be aware of the expected disease trajectory and apply appropriate interventions at each stage. This review will present rehabilitation strategies that can be utilized to maximize patient independence, function, safety, and quality of life, and to minimize disease-related symptoms. The role of bracing, exercise, assistive devices, and adaptive equipment will be discussed. At each disease stage, an experienced rehabilitation team is well positioned to make a significant impact on the life of ALS patients. Keywordsbraces; exercise; multidisciplinary care; physical therapy; rehabilitation "Can you cure ALS?" "I am afraid I can't." "What else can you offer then?" "Rehabilitation for ALS? I thought there is nothing you can do for this disease."It is this type of conversation with patients and their families that prompted this review on the importance of rehabilitation in amyotrophic lateral sclerosis (ALS). ALS is a fatal neurodegenerative disease that produces a constellation of symptoms, including muscle weakness, wasting, fatigue, spasticity, cramps, muscle twitches, dysphagia, dysarthria, respiratory failure, and, in some patients, cognitive and mood changes. The disease typically leads to death within 3-5 years after diagnosis, 1,2 with ventilatory muscle failure as the most common cause of death. 3 The only U.S. HHS Public AccessAuthor manuscript Muscle Nerve. Author manuscript; available in PMC 2015 July 01. Published in final edited form as:Muscle Nerve. 2014 July ; 50(1): 4-13. doi:10.1002/mus.24202. Author Manuscript Author ManuscriptAuthor ManuscriptAuthor Manuscript drug for ALS, riluzole, only confers a modest survival benefit. 4,5 Thus, most of the care of people with ALS (PALS) is supportive and centered around symptom management, making ALS an incurable, yet treatable disease. REHABILITATION AS MULTIDISCIPLINARY CARERehabilitation is the process of assisting a person to maximize function and quality of life.Although there are no curative treatments for ALS, rehabilitation can assist people to continue to function independently and safely, manage their symptoms, and, most importantly, live a fulfilling life despite having a disease that is known to shorten lifespan. Therefore, rehabilitation matters to PALS, because it enables them to reach their fullest potential despite the presence of a disabling disease. Further, it is likely that rehabilitation will become even more essential when caring for PALS in the near future, as more treatments will hopefully be developed to delay disease progression and prolong lifespan.The ALS practice parameter of the American Academy of Neurology (AAN) currently rec...

Participation restrictions in ambulatory amyotrophic lateral sclerosis patients: Physical and psychological factors

“…They should be aware of early restrictions in participation in ambulatory ALS patients and screen regularly for functional mobility, lung capacity, fatigue, and helplessness in clinical practice. Functional mobility may be targeted by providing appropriate mobility aids, such as canes, crutches, and walkers . Lung capacity may be improved by inspiratory muscle training (IMT) and lung volume recruitment training (LRVT) .…”

“…Functional mobility may be targeted by providing appropriate mobility aids, such as canes, crutches, and walkers. 7,29 Lung capacity may be improved by inspiratory muscle training (IMT) and lung volume recruitment training (LRVT). 45 Furthermore, helplessness and fatigue may be modified by teaching patients how to exert more control over the consequences of their disease by implementing a psychological intervention, such as cognitive behavioral therapy (CBT).…”

“…The ability to participate decreases as the disease progresses, but those affected still strive to maintain independence and their social roles . Although there is no cure for ALS, ALS care can assist people to continue to function independently and safely, manage their symptoms, and, most importantly, participating in a fulfilling life despite having a disease that is known to shorten lifespan …”

“…6 Although there is no cure for ALS, ALS care can assist people to continue to function independently and safely, manage their symptoms, and, most importantly, participating in a fulfilling life despite having a disease that is known to shorten lifespan. 7 The construct of participation has been studied in other progressive neurological conditions such as multiple sclerosis (MS) [8][9][10] and Parkinson disease. 2,4 Little is known, however, about the prevalence of perception of participation restrictions among ALS patients and the factors that may affect such restrictions.…”

Developing multidisciplinary clinics for neuromuscular care and research

“…This is hard to measure, but, if true, then insurers might see value in multidisciplinary clinics, particularly because for the time being, reimbursement for care delivered in a multidisciplinary clinic is no higher than traditional care. Patients likely see great value in multidisciplinary clinics . Yet, multidisciplinary care clinics are expensive to run, and the burden of these costs falls on the institution.…”