Given the progressive nature of Amyotrophic Lateral Sclerosis (ALS) and its path, therapists must be aware of the changing needs of their patients and the appropriate interventions. The goal is to assist patients to reach their fullest potential, despite the very disabling character of ALS.
ALS is a progressive disease.
ST, PT, and OT all play a role in helping a patient to reach their fullest potential as well as minimize disabling symptoms as the patient progresses through the four stages.
ST focuses on effective communication and safe swallowing.
PT works on maximizing gait, balance, lower extremity strength and range of motion, management of tone (spasticity), and fall prevention.
OT focuses on optimizing endurance, self-care, home safety, upper extremity function and transfers particularly in the bathroom.
During the final stage care is palliative in nature and focuses on caregiver instruction to assist in managing physical and emotional toll in the home.
Rehabilitation strategies are used by physical, occupational, and speech therapy to minimize disabling symptoms and maximize function, safety, independence, and quality of life. Due to the progressive nature of ALS, therapy is designed to help the patient adjust at the different stages of the disease to allow them to continue to function.
Speech therapists work on communication
Speech therapy (ST) has many problems to address in ALS patients who have slurred speech (dysarthria) through to an inability to speak. Speech therapy finds ways to improve speech and communication. Speech therapy may help the patient find new ways to form words and strengthen the vocal muscle to help them to speak.
Therapists can teach adaptive strategies to speak louder and more clearly for those with reduced muscle function. The patient may work with an occupational therapist to find inventive ways to communicate or set up technology when speech is no longer possible. They may also work on swallowing problems or dysphagia.
The goals of speech therapy include enabling the patient to communicate to others in the room or outside of an emergency. Providing strategies to reduce fatigue during speech and enhance communication efficiency. A patient with ALS also may be taught to communicate via phone, e-mail, text message, or other means.
An alternative and augmentative communication system may be a goal. The ST may individually create and teach the use of a communication system, which may involve technology if the person has lost the ability to speak.
To enhance communication patients should be taught to:
- Slow down their speech and exaggerate articulation.
- Phrasing to maximize energy conservation.
- Tongue strengthening and diaphragmatic exercise to enhance voice projection.
- Obtain a caregiver who will serve as an interpreter (caregiver should consider. obtaining a hearing aid to hear the patient’s strained voice).
- Reduce ambient noise.
- Minimize distance between patient and listener.
- Speak face to face in a well-lit room.
- Take a nap before a long conversation.
- Use an existing gestural system.
- Learn special writing tools and communication boards.
- Consider a blink-controlled voice synthesizer
- Learn an eye-gaze controlled computer assisted device.
- Learn message (digitally records patient’s message for future use) or voice banking (produces a synthetic voice based on patient’s voice samples).
To improve swallowing patients should be taught to:
- Alter consistency, taste, and temperature of foods to improve nutrition intake and prevent aspiration.
- Use straws and a head tilt and chin-tuck position for swallowing thin liquids.
- Maintain an upright position for all meals.
- Use a soft cervical collar at meals if the patient is unable to hold their head upright.
- Take small bites of food alternating with small sips of liquid.
- Do not talk and eat.
- Eat soft, moist foods; avoid crumbly, dry, and chewy foods.
Physical therapists work on mobility
Physical therapy (PT) is essential for rehabilitation of the patient with ALS. Goals include keeping the patient as mobile as possible for as long as possible by optimizing gait, balance, lower extremity strength and range of motion, management of tone (spasticity), fall prevention. Gains in strength are generally not anticipated but the goal is to enable sufficient compensatory strength.
During the beginning stage the patient should be educated in:
- How to choose the appropriate gait device and its use, be it a cane, crutches, or a walker.
- Transfer training in and out of a car and from low surfaces.
- Proper use of lightweight, lower limb devices for foot drop and gait efficiency, plus safety, including regular skin checks. Also how to help conserve energy, walk long distances, and manage uneven terrain.
- Stretching and range of motion, aerobic activity, and strengthening of the lower extremities. Balance exercises. If the patient has fatigue that lasts longer than 30 minutes after exercise, then the program should be modified.
During the middle stage the patient should be instructed in:
- Effective use of a wheelchair, potentially powered wheelchair, or scooter.
- Transfer training using assistive devices like slider boards, powered lift reclining chairs, swivel cushions, and transfer belts for caregiver assist.
- Trapezes and hospital bed for bed mobility.
- Compression stockings for edema control
- Splints to prevent ankle contractures.
- Proper positioning and cushioning or wedges in bed to prevent pain and for pressure relief.
Occupational therapists work on functional life
Occupational therapy works with PT and ST as part of the multidisciplinary team and may overlap some areas. Goals should be to optimize endurance, self-care, home safety, upper extremity function and transfers particularly in the bathroom.
During the beginning stage the patient should be taught:
- How to conserve energy by pacing themself, taking rest breaks, keeping items within reach, spreading activity throughout the day, etc.
- Use of feeding equipment such as large grip utensils, dycem, scoop dish; grooming equipment like an electric toothbrush, strap fitted hairbrush, long handled sponge and comb; and dressing devices like a button hooks, elastic laces, a long handled shoe horn and dressing stick.
- Stair glides for managing stairs.
- Removing throw rugs, installing nightlights, clearing pathways.
- Optimizing upper extremity strength and range of motion. Stretching exercises to minimize possibility of contractures and reduce pain.
- Proper use of splints to allow function of hand and fingers, compensate for wrist drop.
- Safe transfers in and out of tub using a show seat or bench and grab bars, handheld shower hose, raised commode or toilet seat and training in its use.
- Spinner knob for driving if driving continues to be deemed safe.
During the middle stage the patient should be instructed in:
- Proper seating and positioning to allow for maximum breathing capacity, prevent skin breakdown and back pain.
- Home safety and accessibility via stair glides for managing stairs and ramps to enter and exit home.
- Resting hand splints to allow the hand to rest in a normal position during the day and at night.
- Shoulder sleeves, slings, or kinesiotaping to prevent painful subluxation (partial dislocation). Arm trough/lap tray and cushion for wheelchair.
- Roll-in shower stall with wheeled shower seat or bed bath, depending on patient’s ability to hold upright position.
- Instruct caregiver in use of an electric or hydraulic Hoyer lift for transfers between surfaces.
- Bedside commode or bedpan.
During the final palliative stage, therapists monitor patient function and focus on educating the caregiver in managing the heavy emotional and physical demands of caring for a dependent patient in the final stage. Therapists now provide training in the home to decrease the burden of travel.
ALS is a progressive disease. Speech therapy, physical therapy, and occupational therapy each have their own role in management of this disease. The goal is to enable patients to reach their fullest potential and maximize function, safety, independence, and quality of life. Interventions vary according to the stage the patient is in.