Our journey continues…
Now that we have addressed the initial assault and the paths before us, let’s meander through the language of ALS. Let me preface this by saying that some terms are established and some are unique to our community, the ALS community.
ALS: Ameotrophic Lateral Sclerosis
MND: Motor Neuron Disease (how ALS is referred to outside the US)
ALS/MND is a syndrome within what are known as Neurodegenerative Conditions.
Within ALS there are two main categories: Bulbar Onset and Limb Onset. In essence the brain and the body. Neither are mutually exclusive, either one can occur independently or simultaneously. If onset is one or the other eventually it will evolve to both.
Slow Progression -v- Rapid Progression.
Here is the rub…you can have both, no really you can. Slow progression can include plateaus and it can also include episodes of rapid loss. I don’t assign time frames, the definition of fast or slow is subjective. Fast progression is well, fast, you must take into account how long diagnosis took. Rapid can be from days, weeks and months, I’m referencing to loss of abilities and function and ultimately the inevitable. Sadly there is no rhyme or reason as to who or why one or the other.
pALS & cALS: abbreviations for Person or Caregiver of someone living with ALS. Not accepted by all, but it prevents writing the longer terms.
fALS: Famelial ALS, the persons afflicted with the generational genetic form of ALS, hereditary.
vALS: Veteran with ALS
Clinical Trials: A structured research program developing targeted treatments for a disease (s); all require patient participants for human safety.
ALS-FRS-R: An ALS questionnaire-based scale that measures and tracks changes in a person’s physical function over time.
PEG/Mikey/Button: A feeding tube. The name refers to the style of tube; normal profile-long tube or low profile (button).
BIPAP: Bilevel Positive Airway Pressure, may improve respiratory function. In ALS it is intended to prolong diaphragm function and aid in CO2 exchange.
Tobii Dynavox/Augmentative Communication Device/Eyegaze Computer: A computer/tablet augmented with technology that allows navigation on the computer by tracking eye movement. These devices have advanced to allow a person not just to communicate but to also control their environment.
Ok, I think I’m done for now. These are some of the terms you will most likely immediately hear as you begin your journey. There will be many more to learn, before you know it you’ll be fluent in ALS-speak. It’s not a language anyone ever wants to learn, it is a must to navigate ALS though.
More to come…
The Juan and Only