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FREQUENTLY USED TERMS

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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