Taking a trip and want to know how Steve flies on commercial airplanes? 

Get Involved with Project Euphonia an early-stage research effort to improve speech recognition software so people with impaired speech can be understood by—and access—this technology. 

Help future generations of people living with motor speech impairments.

Team Gleason is excited to announce Project Insight, the creation of an open dataset of facial imagery of people living with ALS, to help advance innovation in computer vision and broaden the input potential for connectivity and communication.


ALS – Amyotrophic Lateral Sclerosis 

ELA – esclerosis lateral amiotrófica (ALS in Spanish)

MND –  Motor Neuron Disease – another name for ALS; term used in the UK

El Escorial criteria – a set of guidelines for the degree of certainty of an ALS diagnosis by determining both upper and lower motor neuron involvement with progressive weakness in the following areas:

o   Bulbar (jaw, face, palate, larynx, and tongue)

o   Cervical (neck, arm, hand, and diaphragm)

o   Thoracic (back and abdomen)

o   Lumbosacral (back, abdomen, leg, and foot)

Possible ALS – loss of both upper and lower motor neurons in one region of the body

Probable ALS – loss of both upper and lower motor neurons in two regions of the body

Definite ALS – loss of upper and lower motor neurons is detected in three or more regions of the body

PLS – Primary Lateral Sclerosis- Upper Motor Neuron only form of Motor Neuron Disease; slower progressing and can eventually develop into ALS

pALS or PALS – person with ALS

cALS or CALS – caregiver of a person with ALS

fALS – familial ALS (NOT “familiar”), a way of saying hereditary ALS (runs in the family)

vALS – veterans with ALS

Dx – diagnosis

CPAP – continuous positive airway pressure; should NEVER be used in ALS due to it causing CO2 retention and exhausting the diaphragm 

BiPAP – Bilevel Positive Airway Pressure – a breathing machine that sends air through a tube connected to a face mask that helps the user breathe

AVAPS – Average Volume Assured Pressure Support – a setting on certain BiPAPs and ventilators that is beneficial and preferred in ALS

Trilogy – a ventilator (machine that helps a person breathe) that can be used with invasive and noninvasive adapters

NIV – NonInvasive Ventilation – using a breathing machine with a face mask; does not require having a surgical hole on the throat (tracheotomy)

IV or Invasive ventilation – breathing through and/or use of a ventilator through a tracheotomy 

Trach or Trache – tracheotomy – while actually the name of the surgical procedure of making a hole in the throat to access the trachea, most pALS call their surgical hole a “trach” or “trache”

Stoma – actual name for the hole in the throat created during a tracheotomy 

Trach (or Trache) Tube – tracheotomy tube – plastic tube inserted through a tracheotomy that allows the person to breathe without using the nose or mouth, used to connect a person to a ventilator; must be changed regularly 

FVC – Forced Vital Capacity- a measure of the total volume of air that is able to be expired after a deep inhalation; important information for determining lung function in ALS

ROM – Range of Motion – the measurement of the amount of movement around a specific joint or body part

UMN – Upper Motor Neurons – neurons originating from the motor cortex of the brain and running through the spinal cord

LMN – Lower Motor Neurons – neurons that connect the spinal cord to muscle fibers, transmitting the nerve impulses from the upper motor neurons out to the muscles

PEG – Percutaneous endoscopic gastrostomy – a flexible feeding tube placed through the abdominal wall and into the stomach to allow nutrition, fluids and/or medications to be put directly into the stomach, bypassing the mouth 

Mic-Key or Button – type of PEG tube that doesn’t leave a long tube dangling outside the body

NCV – Nerve Conduction Study – test where electrodes are placed on the skin over a nerve to stimulate the nerve and record the result; can help detect the presence of nerve damage or destruction and rule out ALS mimic diseases

EMG – ElectroMyoGraphy – a test to measure the electrical activity of a muscle; a needle is inserted into the muscle, which acts as a microphone to amplify the sound made by the muscle when it is contracted or relaxed; sounds are interpreted by a neurologist to learn something about the health of muscles and nerves; required for ALS diagnosis

LP – Lumbar Puncture, aka “spinal tap”

CNS – central nervous system 

CSF – cerebrospinal fluid – obtained during a lumbar puncture and studied for abnormalities to diagnose various neurological conditions 

NMJ – NeuroMuscular Junction – connections between the motor nerves and skeletal muscles; in ALS, these connections deteriorate leading to muscle weakness and paralysis

FTD – FrontoTemporal Dementia – caused by atrophy of the frontal and temporal lobes of the brain; affects critical thinking, language/speech, and behavioral regions of the brain; has been linked with some subtypes of ALS (called ALS FTD)

PB – PseudoBulbar Affect – Uncontrollable laughing or crying due to damage to the emotion control regions of the brain; seen in 20-50% of pALS

SOD1 – Superoxide dismutase 1 – an enzyme that destroys superoxide, a highly reactive form of oxygen; the SOD1 gene is responsible for over 20% of fALS cases

UMN-D ALS is Upper Motor Neuron Dominant ALS. Mostly UMN symptoms, but abnormal EMG. Slower progression.

SLP – speech-language pathologist

RT – Respiratory Therapist 

PT – Physical Therapist

OT – Occupational Therapist 

VOCSN – ventilation, oxygen, cough, suction, nebulizer

NPO – nothing by mouth 

PO – by mouth 

BiD – twice daily

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