ALS: Ameotrophic Lateral Sclerosis
MND: Motor Neuron Disease (term used internationally for ALS)
ND: Neurodegenerative Disease (category of diseases that ALS falls under)
pALS: Person Living with ALS
cALS: Caregiver of person living with ALS
fALS: Familial ALS (genetic form of ALS, hereditary)
vALS: Veteran with ALS
BIPAP: ventilator commonly used by pALS, prolongs diaphragm function.
PEG: Feeding tube placed in abdomen directly into stomach.
Powerchair: Electric wheelchair
AFO: Ankle Foot Orthotic, leg brace used to treat/prevent foot drop.
ROM: my Range Of Motion, term used to describe stretching limbs to retain flexibility.
Clinical Trials: Testing of treatments, in development, on patients, necessary to prove efficacy and safety.
Biomarkers: Biological indicators used to detect disease i.e. lab test. ALS currently has no standardized biomarkers, robust research currently being done.
These are just a few terms you will become familiar with as you begin your ALS journey. Sadly you will soon become fluent in the language of ALS. Don’t get lost in translation, there is one term that needs no translation at all…HOPE!
HOPE is my word for ALL things in 2022! Thank you for the reminder.