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Maintaining Control
Monday March 16, 2009

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For nearly three decades, Linda Lorentzen, OTR/L, has been rewarded by her work with patients diagnosed with amyotrophic lateral sclerosis, or Lou Gehrig’s disease. She fondly remembers her encounter with a woman with ALS who gave up painting because she thought her arms were too weak. With a special neck collar and adjustments to her chair, as well as encouragement to use her artistic talents, the woman continued painting for the rest of her life.

“OTs are in a unique position to assist patients with ALS to continue living with the disease to do the things that are important to them, in spite of their weaknesses,” says Lorentzen, patient services director with the ALS Association in Minneapolis.

Because ALS is a neurodegenerative nerve disease for which there is no cure, occupational therapists focus mainly on improving patients’ quality of life. In the early stages, patients experience weakness in the upper and lower extremities, and difficulty speaking, swallowing, or walking.

As the disease progresses, patients lose significant neuromuscular control and may have cognitive deficits that decrease the ability to problem-solve. Eventually, most patients with ALS die from respiratory failure and medical complications of immobility within two to four years from initial diagnosis. Physicist Stephen Hawking is a rare person with ALS, surviving with the condition for more than 40 years.

Individual Emphasis

ALS is a progressive disease, and no two cases develop in the same manner, making it difficult for therapists to predict what the patient’s course will be. Therefore, it is critical that OTs find out what is important to each patient to help them achieve their goals. An OT-directed treatment plan includes modifying how daily activities are performed, conserving energy, improving safety, maintaining range of motion, increasing endurance, preventing contractures through passive range of motion and positioning, and evaluating and training in adaptive aids and assistive technologies.

“Educating patients and their caregivers on safety measures is very important,” says Scott Rushanan, MS, OTR/L, with the ALS Association Center at the Penn Comprehensive Neuroscience Center, part of University of Pennsylvania Health System in Philadelphia. “We often make recommendations for appropriate equipment and home modifications to change the way activities are being performed, but it’s not just a once-and-done kind of fix. You’re constantly adapting to the different changes in their strength and activity tolerance throughout the course of the disease.”

As one example, OTs may train caregivers in an upper extremity range of motion program. As the patient’s strength decreases, the importance of maintaining range of motion increases. If the patient does not partake in range of motion exercises, frozen shoulders can result, making upper extremity dressing difficult and painful.

The role of strength training and exercise is controversial because there are few studies that have been conducted with patients with ALS and the benefits are inconclusive. The ALS Association recommends that patients do not exercise until they talk with their doctor or therapist, and the Academy of Neurology’s practice guidelines on ALS treatment do not include exercise.

“I steer patients away from strength training to endurance training and focus more on flexibility and maintaining range of motion,” says Jamie Ellis, MS, OTR/L, program coordinator for outpatient services at Cardinal Hills Rehabilitation Hospital in Lexington, Ky. “If my patients want to exercise, I make sure they use less resistance and do fewer repetitions because weakened muscles cannot be strengthened.”

Rushanan agrees: “We allow patients to do some exercise if someone shows that they have fairly good strength and it makes them feel productive, but I have seen where exercise has hastened the weakening process, so we approach exercise with caution.”

Source of Care

The majority of ALS patients are cared for at clinics and hospitals because many healthcare insurers do not cover home care visits. Additionally, fewer facilities are sending therapists to see patients in their homes because insurers cannot be double-billed for home care services through home care therapists and ALS therapists. That’s why the home care assistance provided by the ALS Association Minnesota Chapter is so unique. Through a generous grant, the chapter provides home care visits free of charge to most individuals.   

Lorentzen coordinates with OTs and PTs to provide care throughout Minnesota and North Dakota. “Seeing a patient in their home setting is invaluable,” she says. “If you are evaluating a patient for a mobile arm support because they want to continue feeding on their own, who is going to set it up for them at home if it’s a table mount?”

One OT who makes home visits for the chapter is Shannon Storie, OTR/L, who is specially trained in communication device and keyboard programming. Working with speech therapists who are responsible for determining what communication devices a patient needs, Storie helps provide patients with access to these devices, whether it be through headpointing, eye gaze systems, or specialized switches that patients can access through any part of their body with a preserved muscle movement. Storie also provides access to other electronic activities of daily living, such as phones, light switches, and computers that patients with ALS cannot activate in the way they did before the onset of the condition.

Storie uses the latest state-of-the-art assistive technology. When patients lose their ability to talk and have no functional movement to access a switch or use their head to point at a screen, there’s technology called eye gaze that allows patients to gaze at a keyboard while an infrared light tracks their eye movement and a message appears as type on the computer screen. Storie adapts computer programs to include frequently used phrases and commands so the patients can continue to communicate with loved ones and search the Internet using less muscle movements. There also are Bluetooth switch-adapted cell phones to eliminate the need for small buttons.

“One thing after another is taken away from these patients, so it’s nice to enable them to continue to access the TV or use the computer, and help them communicate with their family members,” Storie says.

Resources




Paul Wynn is a medical writer for the Gannett Healthcare Group. To comment, e-mail oteditor@gannetthg.com


Monday March 16, 2009
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