The Role of Physical Therapy in ALS, Research Paper Example

Amyotrophic lateral sclerosis (ALS) is a disease of progressive neurodegeneration which primarily attacks voluntary motor neurons (ALS Association, 2010). Over the course of months to years, patients gradually lose the use of their body. The course of the disease varies by the individual, but often begins in the lower extremities, causing loss of mobility first, and gradually working up the body as motor neurons degrade (ALS Association, 2010). About 75 percent of cases have such spinal onsets and about 20 percent begin with bulbar issues including difficulty in swallowing, chewing, speaking, or breathing (Lombara, 2011). Death from ALS typically occurs, when not caused by secondary issues and without external assistance, from the loss of the lungs to be able to expand and contract the chest, thus causing death by respiratory failure (Lombara, 2011). Although motor neurons are affected, generally involuntary muscles such as heart and bladder, are not affected (ALS Association, 2010).

ALS appears typically in their 40s through their 60s, though it can appear as early as the 20s in some cases (Lombara, 2011). About 5600 individuals are diagnosed each year in the U.S. and about 30,000 patients are living with ALS at any time in the U.S. (Lombara, 2011). There is a genetic component to ALS, particularly if there is more than one family member who had the disease; however, these cases account for only about 5 to 10 percent of all ALS patients; children in such families have a 50% risk of developing ALS themselves (Lombara, 2011). The remaining cases of ALS are of unknown origin (Lombara, 2011).

Although patients may live for months or years—with Stephen Hawking as a famous example of an ALS patient who has survived for decades—the reality is that ALS is a terminal disease (Briggs, 2011). Typically, patients are terminal within two to five years of diagnosis if they have the spinal onset form, but in only six to eighteen months if they have the bulbar onset version (Lombara, 2011). Thus when approaching an ALS patient with therapeutic goals, it is appropriate to address goals that can be accomplished in the realm of weeks or months rather than years (Briggs, 2011).

Models of Care

With the loss of motor control, physical therapy may prove helpful to patients as they begin to lose control over their bodies. What must be considered also is that the nature of ALS means that no matter what therapy is used, the patient’s overall condition will gradually worsen over time. Briggs (2011) notes that an appropriate attitude is to recognize that ALS patients undergo a kind of reverse rehabilitation in which their abilities gradually diminish rather than improve. Thus, a continuing level of evaluations is important to keep track of how the patient’s condition is regressing and to adapt therapies to take those changes into account (Briggs, 2011).

Other care models are also possible. For example, in cases where there are comorbidities, there may also be multiple therapeutic teams. In such cases, the care model is one of overall case management where there is ongoing evaluation and treatment may be provided by skilled caregivers instead of the therapist; this is a case management model for the physical therapist (Briggs, 2011). Alternatively, when functional abilities are impaired to the point that walking or transferring are difficult or unsafe in the home environment, it may require the specialized training of a physical therapist to accomplish these functions (Briggs, 2011). This is a skilled maintenance care model. Finally, the therapist may be called on solely for supportive therapies such as massage, joint mobility, and range of motion type of activities (Briggs, 2011).

Whatever model is appropriate for a particular patient, most often the physical therapist will be part of an extended multidisciplinary team. Some evidence exists that multidisciplinary ALS management may extend life by up to 7.5 months (Lombara, 2011). In this case, the team consisted of physical therapist, occupational therapist, respiratory therapist, speech and language specialist, dietician, social worker, and a specializing rehabilitation consultant, with all team members handling a minimum of six ALS patients every year (Lombara, 2011). Such a team may also include an augmented and alternative communication (AAC) specialist when communications difficulties arise (Cable, 2011).

ALS Physical Therapy

A physical therapist treating an ALS patient requires a special set of characteristics. Mendoza and Rafter (2007) list these characteristics as having generous levels of creativity, background working with patients with disabilities, awareness of how to fund treatments, knowledge of available assistive technologies, understanding of how to customize those technologies to the individual patient, and ability to train patients and families in their use (Mendoza & Rafter, 2007).

The goal of physical therapy in treating ALS patients is primarily to maintain functionality for the patient as long as possible and assist them in sustaining their activities of daily living (Lewis & Rushanan, 2007). This typically comes down to several key areas: providing assistive devices, transfer aides, splinting and bracing, providing neck support, wheelchairs, advising on home modifications, and offering patient, family, and caregiver education (Lewis & Rushanan, 2007). Wheelchairs are of particular importance to ALS patients, and power wheelchairs are of the greatest importance for this patient population and provide the greatest benefits for ALS patients, providing them with the maximum functionality over the longest period. In the U.S., insurance companies will usually only pay for one wheelchair, so using that benefit on a powered chair is best option (Lewis & Rushanan, 2007).

Unfortunately physical therapy’s impact in ALS treatment is not well defined in the literature. The value of therapeutic exercise is not well documented in the literature, though small-scale, non-randomized studies give hints of its possible efficacy (Lombara, 2011). In early-stage ALS, moderate intensity strengthening exercises may help retain functionality longer, and regular exercise may, in the short term, also assist with early-stage ALS (Lombara, 2011). Resistance training may also be helpful, and the literature does not demonstrate negative responses to it in early stage ALS patients (Lombara, 2011). Some patients may have spasticity issues and moderate intensity, individually tailored endurance exercises (15 minutes per trial, 2 trials per day) have been shown to provide short-term improvements, but not to a statistically significant level (Lombara, 2011).

Groenestijn et al. (2011) reported on an upcoming study in Europe to test aerobic exercise therapy in early stage ALS patients. This study will be multicenter, single-blinded, randomized controlled trial, but it is not yet completed, so the results are unknown. However, when completed, it should provide solid evidence on this particular modality for ALS physical therapy (Groenestijn et al., 2011).

One troubling symptom ALS patients eventually experience is a sense of breathlessness as the lungs become less capable of inflating the chest cavity; this can induce a sense of panic in ALS patients. High frequency chest wall oscillation has been shown to be of assistance in decreasing the sense of breathlessness (Lombara, 2011). However, it has not been shown to prevent pulmonary complications, nor to prolong life. It is merely symptomatic relief in the short term (Lombara, 2011).

Challenges in ALS Patients

ALS patients should never be asked to do any activity that pushes them to the point of exhaustion and they should always be allowed frequent rests and breaks in which they can catch their breaths (Lombara, 2011). If the patient’s muscle strength is not at least at a 3/5 level with full range of motion against gravity, resistive exercises should not be used at all (Lombara, 2011).

One of the greatest challenges faced by ALS patients arises from the simple fact that they have a terminal disease. Thus, depression is very common in ALS patients (Kanapathy, 2011). Thus, it is important to be aware of the potential for depressive symptoms and to understand how those can interfere in the patient/therapist relationship. Depressive symptoms can make ALS patients appear to be more impaired than they actually are (Cable, 2011).

In addition, however, when upper motor neurons are involved, the patient can experience significant difficulty communicating with those around him (Kanapathy, 2011). This can result in frustration, and may also result in increased pai n (Kanapathy, 2011). Eventually, many ALS patients have severe communications difficulty as the effort to push air through the vocal cords becomes increasingly difficult which can be assisted with technological aids (Kanapathy, 2011). Augmented and alternative communications (AAC) provides technological assistance for such patients and can include a variety of methods (Cable, 2011). For example, symbols may be used to express particular needs or wants, so pointing at a glass of water or soda might indicate a desire to drink (Cable, 2011). They can also be complex computerized devices that range from a letter board to an electronic speech synthesizer (Cable, 2011). The progression of such speech difficulties often begins with simple reduced intelligibility of speech in the early stages of the disease to severely reduced intelligibility and volume (Cable, 2011). Each of these stages requires increasing use of AAC support (Cable, 2011).

For all ALS therapies, it is essential to always consider the patient’s stamina when working out any treatment plan (Kanapathy, 2011). Patients with weakened motor control may not be able to breathe deeply due to respiratory dysfunction so great physical exertion is not recommended (Kanapathy, 2011). They are also at risk for aspiration and penetration of oral intake, which means that therapists, family, and caregivers need to be aware of this risk and trained for how to deal with it (Kanapathy, 2011).

Conclusion

Meeting the needs of ALS patients is a significant challenge for physical therapists. Briggs (2011) noted that physical therapy is an important role in ALS management at any stage of the disease, from early stage to late stages. However, it is essential that the physical therapist have a thorough understanding of the disease and its progression, and be aware of the need to continually adapt the treatment modalities to reflect patient conditions (Briggs, 2011). It is also essential to have a strong communications and supportive relationship with the family and patient so the patient’s needs can be met and their preferences reflected in the treatment plans (Briggs, 2011). Since every ALS patient is different, each treatment plan must also be developed to reflect those individual situations and to provide the adaptive equipment needed to provide needed support to the patient (Briggs, 2011). It is also essential to make sure the patient and family are educated not only on the disease and its progress, but also on the available assisstance strategies, techniques and technologies that can extend the patient’s functionality (Briggs, 2011) . Finally, and possibly more importantly than anything else, the patient’s psychological, emotional, social, and spiritual state should be considered in all treatment plans to ensure that they serve the patient’s needs as best as possible (Briggs, 2011).

Treating an ALS patient means treating a patient who has a terminal disease. That does not mean, however, that such patients should be abandoned. Instead, the ALS patient’s quality of life and functionality can be significantly improved if appropriate therapies are provided.

References

ALS Association. (2010). What is ALS? Web. Available from http://www.alsa.org/about-als/

Briggs, R. W. (2011). Physical therapy intervention with ALS. Available from: http://www.seatingsolutionsinc.com/wp-content/uploads/2011/10/PHYSICAL_THERAPY_INTERVENTION_WITH_ALS.pdf

Cable, A. (2011). Augmentative an alternative communication: Amyotrophic lateral sclerosis. Cinahl Information Systems. (9 Dec 2011), 8 pp.

Casey, K. S. (2011). Creating an assistive technology clinic: The experience of the Johns Hopkins AT Clinic for patients with ALS. NeuroRehabilitation, 28 (3), 281-293.

Groenestijn, A. c., Van de Port, I. G., Schoder, C. D., post, M. W., Grupstra, H. F., Kruitwagen, E. T., Van der Linde, H., Van Vliet, R. O., Van de Weerd, M. G., Van den Berg, L. H., Lindeman, E. (2011). Effects of aerobic exercise therapy and cognitive behavior therapy on functioning and quality of life in amyotrophic lateral sclerosis: Protocol of the FACTS-2-ALS trial. BMC Neurology, 11, 70-80. Available from: http://www.biomedcentral.com/1471-2377/11/70

Kanapathy, N. (2011). Amyotrophic lateral sclerosis (ALS): Communication disorders. Cinahl Information Systems. (9 Sep 2011), 8 pp.

Lewis, M., Rushanan, S. (2007). The role of physical therapy and occupational therapy in the treatment of amyotrophic lateral sclerosis. NeuroRehabilitation, 22 , 451-461.

Lombara, A. (2011). Amyotrophic lateral sclerosis (ALS). Cinahl Information Systems. (11 Nov 2011), 8 pp.

Mendoza, M., Rafter, E. (2007). Manual 4: Living with ALS: Functioning when your mobility is affected. The ALS Association. Calabasas Hills, CA. Available from: http://www.alsa.org/als-care/resources/publications-videos/manuals/