Locked In Syndrome Program - Overview
Reviewed June 2011
Locked–in syndrome is a condition in which all voluntary muscles of the body are paralyzed, except for those that control eye movements. It can occur as the result of a stroke or for other reasons. Strokes may be caused by bleeding in the brain or by loss of blood flow to part of the brain from a blockage in an artery. Many physical and behavioral effects can result from a stroke. Locked–in syndrome occurs when the stroke is located in the brain stem which is between the large hemispheres of the brain. The brain stem is the main pathway carrying signals from the brain to the nerves that activate movement and speech.
When a stroke occurs in the brain stem, signals from the brain can no longer connect to the nerves. As a result, movement to the limbs and trunk is blocked (quadriplegia) and the ability to form words with the mouth is lost (anarthria). Despite this, people with locked–in syndrome, for the most part, are alert and able to think. Eye movements are affected too, but people with locked–in syndrome can often gaze upward and blink. Gazing upward is used to communicate “yes” and blinking to communicate “no.”
As a result of paralysis, people with locked–in syndrome can have difficulty breathing, coughing and swallowing. A tracheostomy tube in the neck is usually needed to assist with breathing. A gastric tube is also placed in the stomach through the belly wall for feeding and medication. Tubes called catheters are put in the bladder to drain the urine. Often patients regain normal bladder function allowing the urinary catheter to be removed. Sometimes the tracheostomy tube can be removed as well. For patients who regain the ability to swallow and eat, the gastric tube can be removed also, but this is the hardest goal to achieve early in recovery.
Researchers at the Rehabilitation Institute of Chicago (RIC), in collaboration with other rehabilitation centers, have shown that a good quality of life can be achieved for those people with locked–in syndrome who participate in rehabilitation programs, even if they do not return to a “normal” life style. The majority of people who have locked–in syndrome live ten years or more. Our studies show that people with locked–in syndrome can return home, move about in the community and participate in family activities.
Goals of Treatment
• maximize all abilities
• find new ways to perform when some abilities do not return
• minimize dependence on others
• maintain optimal health and simplify medical care.
Treatment Team
RIC has a dedicated team that understands the challenges faced by people with locked–in syndrome and can help those with this condition maximize recovery and function. We do so with good medical care, exercise therapy, customized equipment and technology.
The treatment team includes occupational, physical, speech and recreational therapists; psychologists; nurses; physicians; care managers; and technology and engineering specialists. Members of the treatment team teach patients, family members and caregivers how to perform all care, including those care activities which can be done independently, and those which require help. Such activities might include transferring from a bed to a chair, and assisting with dressing or feeding.
Roles of Rehabilitation Professionals
Nursing
Rehabilitation nurses teach patients and families about:
• medications
• bowel and bladder retraining doing timed toileting and bowel management with the goal of achieving continence
• proper skin care and body positions to prevent pressure ulcers
• nutritional needs including supportive feedings when appropriate
• respiratory function
• any specific individual concerns
Rehabilitation nurses also provide important emotional support.
Care Manager
Care managers, usually social workers or nurses, assist patients through the discharge or transfer process, whether patients are going home or to a skilled nursing facility.
Occupational Therapy (OT)
When patients arrive, an occupational therapist assesses their ability to communicate and devises a simple form of communication. This enables patients to express basic needs and information. A communication system may consist of eye movements, head movements or a switch system that can be used by moving the head or arm.
OT works with patients on improving:
• eye movement
• head movement
• sitting balance
• arm strength, function and range of motion, sometimes with the application of splints or casts
The OT also teaches family members and caregivers how to assist with at-home care including getting dressed, showering, and doing exercises.
Physical Therapy (PT)
Physical therapists work with patients on improving mobility, strength and balance. The PT works with the seating and positioning therapist (see below), to evaluate wheelchair needs. An orthotist may assess joint bracing (orthotic) needs to limit joint range of motion loss. The PT and OT also plan for discharge needs such as home modifications, specialized equipment, personal assistance and supplies.
Speech Therapy
The speech–language pathologist (SLP) addresses:
• Speech, swallowing, communication, and thinking skills. An initial evaluation includes an examination of the facial structure and muscles that are necessary for speech and swallowing.
• When needed, patients are shown ways to improve mouth movements and their ability to speak and swallow.
• An Oral Pharyngeal Swallow Study (OPSS) may be needed to help evaluate swallowing ability.
• Cognition, attention and short term memory are assessed and treated if these skills interfere with the patient’s ability to communicate effectively.
• The SLP and a therapist from the Technology Center practice using the communication system with the patient, family and staff Psychologist
The psychologist assists the locked–in stroke survivor in coping with sudden, extreme dependence, limited communication and the uncertainty of recovery. Also, psychologists identify cognitive impairments.
Therapeutic Recreation
The recreational therapist addresses the social aspects of life. Patients are given the opportunity to explore past, present and new leisure interests.
Seating and Positioning Therapist
The seating and positioning therapist assists with selecting and fitting the best manual or powered wheelchair for each patient.
Rehabilitation Institute of Chicago Technology Center for the Environment, Computer and Communication
Assistive technology can be a very helpful component of care for people with locked- in syndrome. The Technology Center supplies devices for communication, quick use of telephone in case of emergency and operating a computer. Electronic aids help people who have problems with mobility or hand function use TV remotes, light switches or the telephone. Aids can be set up to work with a single switch that is activated with small amounts of head or finger movement and even eye movements. Being able to control these devices promotes comfort and independence.
Computer access can be arranged with assistive devices such as miniature keyboards, head controlled systems, alternative mouse input devices, specialty software, or even Morse code switches. Morse code provides a method of using letters and function keys in PC or Mac applications.
Lester B. Knight Technology Lending Library loans communication and electronic devices to patients with short–term needs or to try before purchase.
The Technology Center Team includes additional therapists (OT, PT and SLP) who specialize in assistive technology.
Rehabilitation Engineering Department
The Rehabilitation Engineering (RE) department customizes equipment such as mounting computers and communication devices.
For more information about the Locked–In Program at the Rehabilitation Institute of Chicago, please contact Florence Denby, RN at 312–238–5359.
When a stroke occurs in the brain stem, signals from the brain can no longer connect to the nerves. As a result, movement to the limbs and trunk is blocked (quadriplegia) and the ability to form words with the mouth is lost (anarthria). Despite this, people with locked–in syndrome, for the most part, are alert and able to think. Eye movements are affected too, but people with locked–in syndrome can often gaze upward and blink. Gazing upward is used to communicate “yes” and blinking to communicate “no.”
As a result of paralysis, people with locked–in syndrome can have difficulty breathing, coughing and swallowing. A tracheostomy tube in the neck is usually needed to assist with breathing. A gastric tube is also placed in the stomach through the belly wall for feeding and medication. Tubes called catheters are put in the bladder to drain the urine. Often patients regain normal bladder function allowing the urinary catheter to be removed. Sometimes the tracheostomy tube can be removed as well. For patients who regain the ability to swallow and eat, the gastric tube can be removed also, but this is the hardest goal to achieve early in recovery.
Researchers at the Rehabilitation Institute of Chicago (RIC), in collaboration with other rehabilitation centers, have shown that a good quality of life can be achieved for those people with locked–in syndrome who participate in rehabilitation programs, even if they do not return to a “normal” life style. The majority of people who have locked–in syndrome live ten years or more. Our studies show that people with locked–in syndrome can return home, move about in the community and participate in family activities.
Goals of Treatment
• maximize all abilities
• find new ways to perform when some abilities do not return
• minimize dependence on others
• maintain optimal health and simplify medical care.
Treatment Team
RIC has a dedicated team that understands the challenges faced by people with locked–in syndrome and can help those with this condition maximize recovery and function. We do so with good medical care, exercise therapy, customized equipment and technology.
The treatment team includes occupational, physical, speech and recreational therapists; psychologists; nurses; physicians; care managers; and technology and engineering specialists. Members of the treatment team teach patients, family members and caregivers how to perform all care, including those care activities which can be done independently, and those which require help. Such activities might include transferring from a bed to a chair, and assisting with dressing or feeding.
Roles of Rehabilitation Professionals
Nursing
Rehabilitation nurses teach patients and families about:
• medications
• bowel and bladder retraining doing timed toileting and bowel management with the goal of achieving continence
• proper skin care and body positions to prevent pressure ulcers
• nutritional needs including supportive feedings when appropriate
• respiratory function
• any specific individual concerns
Rehabilitation nurses also provide important emotional support.
Care Manager
Care managers, usually social workers or nurses, assist patients through the discharge or transfer process, whether patients are going home or to a skilled nursing facility.
Occupational Therapy (OT)
When patients arrive, an occupational therapist assesses their ability to communicate and devises a simple form of communication. This enables patients to express basic needs and information. A communication system may consist of eye movements, head movements or a switch system that can be used by moving the head or arm.
OT works with patients on improving:
• eye movement
• head movement
• sitting balance
• arm strength, function and range of motion, sometimes with the application of splints or casts
The OT also teaches family members and caregivers how to assist with at-home care including getting dressed, showering, and doing exercises.
Physical Therapy (PT)
Physical therapists work with patients on improving mobility, strength and balance. The PT works with the seating and positioning therapist (see below), to evaluate wheelchair needs. An orthotist may assess joint bracing (orthotic) needs to limit joint range of motion loss. The PT and OT also plan for discharge needs such as home modifications, specialized equipment, personal assistance and supplies.
Speech Therapy
The speech–language pathologist (SLP) addresses:
• Speech, swallowing, communication, and thinking skills. An initial evaluation includes an examination of the facial structure and muscles that are necessary for speech and swallowing.
• When needed, patients are shown ways to improve mouth movements and their ability to speak and swallow.
• An Oral Pharyngeal Swallow Study (OPSS) may be needed to help evaluate swallowing ability.
• Cognition, attention and short term memory are assessed and treated if these skills interfere with the patient’s ability to communicate effectively.
• The SLP and a therapist from the Technology Center practice using the communication system with the patient, family and staff Psychologist
The psychologist assists the locked–in stroke survivor in coping with sudden, extreme dependence, limited communication and the uncertainty of recovery. Also, psychologists identify cognitive impairments.
Therapeutic Recreation
The recreational therapist addresses the social aspects of life. Patients are given the opportunity to explore past, present and new leisure interests.
Seating and Positioning Therapist
The seating and positioning therapist assists with selecting and fitting the best manual or powered wheelchair for each patient.
Rehabilitation Institute of Chicago Technology Center for the Environment, Computer and Communication
Assistive technology can be a very helpful component of care for people with locked- in syndrome. The Technology Center supplies devices for communication, quick use of telephone in case of emergency and operating a computer. Electronic aids help people who have problems with mobility or hand function use TV remotes, light switches or the telephone. Aids can be set up to work with a single switch that is activated with small amounts of head or finger movement and even eye movements. Being able to control these devices promotes comfort and independence.
Computer access can be arranged with assistive devices such as miniature keyboards, head controlled systems, alternative mouse input devices, specialty software, or even Morse code switches. Morse code provides a method of using letters and function keys in PC or Mac applications.
Lester B. Knight Technology Lending Library loans communication and electronic devices to patients with short–term needs or to try before purchase.
The Technology Center Team includes additional therapists (OT, PT and SLP) who specialize in assistive technology.
Rehabilitation Engineering Department
The Rehabilitation Engineering (RE) department customizes equipment such as mounting computers and communication devices.
For more information about the Locked–In Program at the Rehabilitation Institute of Chicago, please contact Florence Denby, RN at 312–238–5359.
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