A Guide to the Language of ALS

[Dagmar Munn]

As a newly diagnosed ALS patient, I was unfamiliar with the medical jargon being used in the ALS community. Some words sounded odd to my nonmedical ears, while other words had double meanings. And then were the acronyms or abbreviations — like ALSFRS, FVC, SLP, BiPAP, and AFO. I remember it was frustrating having to look up meanings or asking others to explain and talk in “real words.”

But the acronyms and jargon are here to stay. So, let’s help our newly diagnosed members by creating a guide that we can all refer to when we run across medical slang that stumps us.

Add your words, phrases, or acronyms in the comment section below. Or if you have a “What’s this?” or an acronym that you need help with, just post it in the comment box as a question so our forum members can tell us what it means.

[Dagmar Munn]

I’ll start things off with these:

ALS -Amyotrophic lateral sclerosis

FALS – Familial ALS runs in families and is caused by changes to a gene.

Sporadic ALS – the most common form. Sporadic means it happens sometimes without a clear cause.

MND – Motor neuron disease. The term is most often used in Europe, the UK, and Canada to describe ALS.

PLS – Primary Lateral Sclerosis is the rarest form of ALS. The upper motor neurons (nerve cells) deteriorate and the lower motor neurons are not affected.

pALS – A person with ALS.

CALS – An ALS caregiver

[Kathleen B (Katie)]

Good topic! Will contribute a few that were baffling … and add on as I think of others encountered over the past 2 years since diagnosis.
Actually, I was a special ed teacher for years and thought that field was full of acronyms —“alphabet soup” I called it—then I was diagnosed 1 year after retiring—& discovered I had a whole NEW world of acronyms to to interpret!

BUE —Both Upper Extremities (arms)

BLE – Both Lower Extremities (legs)

ROM —Range of Motion
FVC- Forced Vital Capacity (breathing tat term)
PHI – Personal Health Information

 

 

 

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