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Letters and Responses |
I am writing in response to the case report by Dal Bello-Haas et al entitled "Physical Therapy for a Patient Through Six Stages of Amyotrophic Lateral Sclerosis" (December 1998). My compliments to the authors for writing and the Journal for publishing this report, which gives an overview of the diagnosis, examinations, and interventions for the individual with amyotrophic lateral sclerosis (ALS). The rehabilitation community too often neglects our patients with deteriorating pathologies.
I want to comment on 3 concerns regarding this publication. The first concern relates to the prescribed exercise protocol for the patient with ALS. The prescribed exercise program included 10 minutes of cycling at 65% of the maximal heart rate 2 times a day in addition to stretching activities and an active resistance exercise program for the lower extremities. The patient was to exercise for 2 20-minute sessions a day, and the exercise prescription was continued even after her second visit to the clinic, during which she showed a decrease in muscle strength in all groups tested. The authors cite only 2 references that addressed the effects of resistive exercise for the person with ALS, one being a 1983 case study, and admit that there is no evidence of "functional change from a resistive exercise program." At our clinic, we support Sinaki, who does not advocate "any vigorous exercise programs for persons with ALS" but rather feels that "everyday activities are enough."1 Our patients and their caregivers are taught a range-of-motion/stretching program to be performed daily, but active-resistive or aerobic exercises are done only through functional tasks that are valued by the individual patient. Our patients who are golfers are taught how to modify their golf games, and those who enjoy walking go to the malls in the summer and decrease their target distances in accordance with the disease progression. Those patients who must climb stairs as part of their daily activity get credit for exercising in the form of stair climbing. Taking 40 to 45 minutes from the day of a patient with ALS in light of the limited literature on the benefits of resistive or aerobic exercises for the patient does not seem like a clinically sound decision, especially given the increase in lower-extremity weakness at the patient's second visit.
Next, I want to call into question the staging of patients with ALS and their needs in each stage. The modified stages presented depict a patient with ALS who loses his or her ability to ambulate first. This is only one pattern of presentation for a person with ALS. Some patients have bulbar symptoms and benefit from a hospital bed and respiratory therapy early in the course of their disease. Other individuals have profound weakness in the upper extremities and minimal loss of strength in the lower extremities years after their initial diagnosis. These people often never need a wheelchair. Perhaps the staging of patients who have a neuromuscular disease such as ALS with highly variable presentations is of limited usefulness to the clinician.
Finally, I want to comment on the authors' minimal mention of adaptive equipment. Given appropriate funding sources and caregivers, there is no reason for a person with ALS to become bedridden. Anyone with proper training can learn to use a Hoyer lift. Manual wheelchairs with reclining backs and Roho cushions allow patient access to their home and community. Full electric reclining wheelchairs with sensitive control panels allow our patients to stay up 8 to 12 hours a day. Many times, these patients are home alone in the wheelchair while their spouse works. Electric scooters have been successful for our patients who are still employed. Some of our patients choose to remain on these scooters well into the course of their disease. We have not found the soft collar or the Philadelphia collar successful with our patient population. The patients remark, even those on ventilation, that the collars are "too hot" and "make swallowing difficult." A lightweight Freeman collar that is completely open in front seems to be tolerated the best. It is a challenge to stay abreast of the assistive technology that is available for this patient population.
In closing, the authors did a good job of reviewing the examinations for the person with ALS. At this time, however, no intervention exists that will improve the outcomes for this patient population. Thus, I must question whether repeating the isometric strength testing, for example, is necessary at each clinic visit for patients who are not on specific drug or exercise trials. The role of the physical therapist, I believe, is to administer a limited examination, perform an assessment, and assist the patient and his or her family in maintaining, to the best possible level, the quality of life that the patient desires. This goal is accomplished by a physical therapist who excels in patient and family education, assistive technology, and the ability to listen closely enough to the patient to hear what the patient really wants rather than relying on what the patient's defined "stage" dictates he or she needs.
Department of Physical Therapy
The University of Texas Southwestern
Medical School
5323 Harry Hines Blvd
Dallas, TX 75235-8876
(psmith{at}mednet.swmed.edu)
References
The first issue Ms Smith raised was the appropriateness of prescribing an exercise program for individuals with amyotrophic lateral sclerosis (ALS) that includes active-resistive or aerobic exercises beyond those done through functional tasks that are part of their activities of daily living. In the past, physicians discouraged prescribing active exercise for fear of exacerbating the disease. The attitude that individuals with ALS should not engage in resistive or aerobic exercise, however, is not supported by the literature. Studies of aerobic exercise in individuals with Guillain-Barré syndrome1 or slowly progressing neuromuscular disease2,3 indicate that aerobic exercise is well-tolerated and beneficial in improving exercise capacity and decreasing other impairments. Strengthening exercises have been given to people with muscular dystrophy,4,5 hereditary motor and sensory neuropathies,6 and chronic peripheral neuropathies7 with positive physical and psychological effects and no evidence of overuse weakness.
Therapeutic exercise is believed by many health care professionals to be psychologically beneficial, to prevent disuse atrophy, and even to improve muscle strength in some patients with ALS.8 However, there have been no prospective studies in this area. We were recently awarded funds from the Clinical Management Research Grant Program of the Amyotrophic Lateral Sclerosis Association to study the effects of a strengthening program on maximal voluntary isometric contraction, functional abilities, fatigue, and quality of life in patients with ALS. We hope that the results of this preliminary study will increase our understanding of the role of exercise in this patient population.
Ms Smith questions the usefulness of staging of people with ALS, given the highly variable presentations of the disease. She is correct in stating that the pattern of presentation is extremely variable in individuals with ALS. We believe, however, that Sinaki and Mulder's9 approach to staging is a useful framework for designing treatment programs because the majority of people with ALS referred for physical therapy have lower-extremity weakness and gait problems. Use of this framework does not dictate the needs of the individual; rather, staging provides the therapist with knowledge of the natural course of the disease, especially the progression of trunk and lower-extremity impairments and resultant disabilities, allowing physical therapists to anticipate the potential needs of their patients, even in the end stage.
The third issue raised was our minimal mention of adaptive equipment. It was not our intention in our article to review all of the possible adaptive equipment that is available for people with ALS. For a more comprehensive overview of equipment that could be used with this patient population, we would refer readers to Amyotrophic Lateral Sclerosis,10Managing Amyotrophic Lateral Sclerosis,11 or Living With ALS.12 We welcome Ms Smith's comments and suggestions on equipment that she has found to work well for this patient population. Prescribing adaptive equipment that is effective, well-tolerated, and accepted by people with ALS is an important and challenging aspect of physical therapy for these individuals.
The last question raised concerned what tests and measures should be performed and how often. According to the Guide to Physical Therapist Practice, "examination, evaluation, and establishment of a diagnosis and a prognosis are all part of the process that guides the therapist in determining the most appropriate intervention."13(p1181) We believe that valid measures, such as isometric strength testing and other measures described in our article, can provide important information to support effective clinical reasoning and provide benchmarks against which to monitor progress. It is the decision of the physical therapist as to the types of measures used and the frequency of their use "based on the purpose of the visit, the complexity of the condition, and the directions taken in the clinical decision-making process."13(p1181)
We value and encourage input from clinicians, as these discussions will enhance our common goal of helping individuals with ALS.
References
This article has been cited by other articles:
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  L. I. Iezzoni A 44-Year-Old Woman With Difficulty Walking JAMA, November 22, 2000; 284(20): 2632 - 2639. [Full Text] [PDF]
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