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There are many terms—some technical and some not—that are used widely in the ALS community. Below are many of the words and terms you will encounter when reading about ALS or talking with healthcare professionals.
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AAC (augmentative and alternative communication) – any form of communication that does not involve speaking—such as writing, gesturing, or using speech-generating devices
ADLs (activities of daily living) – the basic things you do every day, like bathing, eating, going to the toilet, and brushing your teeth
advance directives – written documents that state your wishes regarding the type of medical treatment you would—or wouldn’t—want in the event of an emergency
ALS (amyotrophic lateral sclerosis) – a chronic neuromuscular disease with no known cure that attacks motor neurons, which results in the weakening and atrophy of muscles
ALS advocate – a person who takes action to raise awareness about ALS and improve laws that affect the ALS community
ALS Certified Treatment Centers – medical institutions that are certified and funded by The ALS Association to provide ALS clinics for patients
ALS clinics – treatment centers where multidisciplinary medical teams meet with ALS patients to monitor progress and make recommendations
aspiration – when foods, liquids, or saliva inadvertently go into the lungs instead of the stomach
BiPAP (Bilevel Positive Airway Pressure) – a small breathing machine that delivers pressurized air through a facemask to assist with inhaling and exhaling
bulbar onset – a type of ALS that begins by affecting speech, swallowing, and facial muscles
CALS (caregiver of a person with ALS) – a widely used term in the ALS community that refers to the primary caregiver of a person with ALS—usually a spouse or family member
caregiver – a loved one (or paid professional) who helps with activities of daily living and more
dietitian – a healthcare professional who can develop strategies to help you receive proper nutrition
DME (durable medical equipment) – equipment that Medicare and insurance companies consider medically necessary, and will therefore cover
DNR (do-not-resuscitate order) – a legal order written in advance that instructs health care professionals not to perform CPR or other other life-saving techniques in the event that you stop breathing or your heart stops beating
dysarthria – slurred or slow speech due to weakened or affected muscles
dysphagia – difficulty swallowing
EMG (electromyography) – a series of tests that help neurologists diagnose patients with muscle weakness
familial ALS – a genetically inherited form of ALS that runs in the family and affects 5-10% of all ALS patients
fasciculations – muscle twitching
FTD (frontotemporal dementia) – nerve cell damage to the brain that can affect personality, behavior, and language
invasive ventilation – long-term mechanical breathing support through a tube that is inserted through the mouth, nose, or windpipe
motor neuron – a nerve cell that helps transmit messages from the central nervous system to muscles
nerve conduction – a test for nerve damage
neurologist – a doctor who specializes in diagnosing and treating diseases of the nervous system, including ALS
onset – the first signs or symptoms of an illness prior to diagnosis
OT (occupational therapist) – a healthcare professional who can help you achieve more independence with activities of daily living through support, training, adaptive equipment, and modifications to your environment
PALS (person diagnosed with ALS) – a widely used term in the ALS community that refers to a person diagnosed with ALS
PEG (percutaneous endoscopic gastrostomy) – a procedure that helps people with swallowing difficulties receive liquid, nutrition, and medication through a feeding tube that is inserted into the stomach
PLS (primary lateral sclerosis) – a motor neuron disease closely related to ALS that only affects the upper motor neurons and progresses more slowly than ALS and PMA
PMA (progressive muscular atrophy) – a motor neuron disease closely related to ALS that only affects the lower motor neurons and progresses more slowly
pseudobulbar palsy – a motor neuron disease closely related to ALS that primarily affects the ability to speak, swallow, and chew
PT (physical therapist) – a healthcare professional who can help improve your mobility, strength, balance, and flexibility through techniques such as exercises, stretching, and massage
Radicava (edaravone) – after a promising clinical trial in Japan, it is the second drug approved by the FDA to treat ALS and will become available in the United States in August 2017
respite care – care provided by loved ones, volunteers, or professionals either at home or in a facility with the purpose of providing a break for primary caregivers
Rilutek (riluzole) – the first FDA-approved drug for ALS that may prolong life for about 90 days; it does not reverse nerve damage or muscle weakness
ROM (range of motion) – measurement of movement and flexibility around a joint
SGD (speech generating device) – an electronic device that speaks the messages you create through typing or gazing at letters, words, phrases, or images
sialorrhea – excessive drooling
SLP (speech language pathologist) – a health care professional who can help you communicate through various strategies, including the use of augmentative and alternative communication devices
social worker – a mental health professional who can connect you to resources, help you navigate the healthcare system, and provide emotional support through counseling
SSDI (Social Security Disability Insurance) – a federal program that pays retirement benefits early to terminally-ill people who have paid into Social Security
tracheotomy – the surgical procedure that creates an opening through the windpipe in order to connect to a breathing machine
transferring – safely moving between locations such as your bed, wheelchair, toilet, couch, and car
VA (Veterans Administration) – the federal government agency responsible for providing services for military veterans, including disability benefits
ventilator – a machine that helps you breathe
ADLs (activities of daily living) – the basic things you do every day, like bathing, eating, going to the toilet, and brushing your teeth
advance directives – written documents that state your wishes regarding the type of medical treatment you would—or wouldn’t—want in the event of an emergency
ALS (amyotrophic lateral sclerosis) – a chronic neuromuscular disease with no known cure that attacks motor neurons, which results in the weakening and atrophy of muscles
ALS advocate – a person who takes action to raise awareness about ALS and improve laws that affect the ALS community
ALS Certified Treatment Centers – medical institutions that are certified and funded by The ALS Association to provide ALS clinics for patients
ALS clinics – treatment centers where multidisciplinary medical teams meet with ALS patients to monitor progress and make recommendations
aspiration – when foods, liquids, or saliva inadvertently go into the lungs instead of the stomach
BiPAP (Bilevel Positive Airway Pressure) – a small breathing machine that delivers pressurized air through a facemask to assist with inhaling and exhaling
bulbar onset – a type of ALS that begins by affecting speech, swallowing, and facial muscles
CALS (caregiver of a person with ALS) – a widely used term in the ALS community that refers to the primary caregiver of a person with ALS—usually a spouse or family member
caregiver – a loved one (or paid professional) who helps with activities of daily living and more
dietitian – a healthcare professional who can develop strategies to help you receive proper nutrition
DME (durable medical equipment) – equipment that Medicare and insurance companies consider medically necessary, and will therefore cover
DNR (do-not-resuscitate order) – a legal order written in advance that instructs health care professionals not to perform CPR or other other life-saving techniques in the event that you stop breathing or your heart stops beating
dysarthria – slurred or slow speech due to weakened or affected muscles
dysphagia – difficulty swallowing
EMG (electromyography) – a series of tests that help neurologists diagnose patients with muscle weakness
familial ALS – a genetically inherited form of ALS that runs in the family and affects 5-10% of all ALS patients
fasciculations – muscle twitching
FTD (frontotemporal dementia) – nerve cell damage to the brain that can affect personality, behavior, and language
invasive ventilation – long-term mechanical breathing support through a tube that is inserted through the mouth, nose, or windpipe
motor neuron – a nerve cell that helps transmit messages from the central nervous system to muscles
nerve conduction – a test for nerve damage
neurologist – a doctor who specializes in diagnosing and treating diseases of the nervous system, including ALS
onset – the first signs or symptoms of an illness prior to diagnosis
OT (occupational therapist) – a healthcare professional who can help you achieve more independence with activities of daily living through support, training, adaptive equipment, and modifications to your environment
PALS (person diagnosed with ALS) – a widely used term in the ALS community that refers to a person diagnosed with ALS
PEG (percutaneous endoscopic gastrostomy) – a procedure that helps people with swallowing difficulties receive liquid, nutrition, and medication through a feeding tube that is inserted into the stomach
PLS (primary lateral sclerosis) – a motor neuron disease closely related to ALS that only affects the upper motor neurons and progresses more slowly than ALS and PMA
PMA (progressive muscular atrophy) – a motor neuron disease closely related to ALS that only affects the lower motor neurons and progresses more slowly
pseudobulbar palsy – a motor neuron disease closely related to ALS that primarily affects the ability to speak, swallow, and chew
PT (physical therapist) – a healthcare professional who can help improve your mobility, strength, balance, and flexibility through techniques such as exercises, stretching, and massage
Radicava (edaravone) – after a promising clinical trial in Japan, it is the second drug approved by the FDA to treat ALS and will become available in the United States in August 2017
respite care – care provided by loved ones, volunteers, or professionals either at home or in a facility with the purpose of providing a break for primary caregivers
Rilutek (riluzole) – the first FDA-approved drug for ALS that may prolong life for about 90 days; it does not reverse nerve damage or muscle weakness
ROM (range of motion) – measurement of movement and flexibility around a joint
SGD (speech generating device) – an electronic device that speaks the messages you create through typing or gazing at letters, words, phrases, or images
sialorrhea – excessive drooling
SLP (speech language pathologist) – a health care professional who can help you communicate through various strategies, including the use of augmentative and alternative communication devices
social worker – a mental health professional who can connect you to resources, help you navigate the healthcare system, and provide emotional support through counseling
SSDI (Social Security Disability Insurance) – a federal program that pays retirement benefits early to terminally-ill people who have paid into Social Security
tracheotomy – the surgical procedure that creates an opening through the windpipe in order to connect to a breathing machine
transferring – safely moving between locations such as your bed, wheelchair, toilet, couch, and car
VA (Veterans Administration) – the federal government agency responsible for providing services for military veterans, including disability benefits
ventilator – a machine that helps you breathe
