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So You Have ALS...Parts 3/4

So you have ALS

What can you expect…

(Part 3)

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: Amyotrophic 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.

PLWALS: A more recent addition to the ALS vernacular... Person Living With ALS.

fALS: Familial 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: Bi-level 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…

So you have ALS

What can you expect…

(Part 4)

Alright, so far we have touched on diagnosis, treatment paths and the language of ALS. To be honest we’ve simply dipped our toes into these dark waters. Dark waters that can mimic a warm embrace, not because we can feel comfort in its embrace, but because it numbs us with it’s chokehold.

Oh my you’ve taken a dark turn Mr. Juan and Only.

Yes I have, why you may ask? Because ALS is dark, scary, suffocating and ultimately liberating, I will get to that later.

The dark and scary…

“I’m sorry you have ALS”

“There are no treatments or a cure”

This leaves us without hope in the medical establishment. So why engage? Because it, the medical establishment, can and does help us and our families cope with the daily trauma of ALS. Every day we experience anticipatory loss, what next, when? Until what we anticipate loosing in fact is lost.

So what can you expect?

Is ALS painless? Yes, but not its effect on the body and our minds. As it shapes our bodies against our will, it is painful. Strictures, frozen joints, out of control emotions and the pain in our families eyes…but ALS is painless (my ass).

But how will our lives change? That’s what we really want to know?

Change? No it won’t, “change” is not apropos! I will let you choose the word, I have a slew of expletives myself, lol.

ALS will change you though, some changes good, some not. The obvious changes will require you to depend on others for EVERYTHING. These changes will be painful, not because your body is at odds with itself, but because you are at odds with yourself.

You will however, if you allow it, appreciate time and moments much more. You will also meet amazing souls, many of which are battling ALS themselves. Once again I encourage you to surrender, not to ALS, but to the love and support offered and given. Don’t get me wrong, ALS is a shitty condition. There’s plenty of reminders every day, most are unpleasant, some embarrassing and many simply necessary.

You have two options ultimately; focus on what you lose, or focus on what you still have. To be honest the balance is between both. But it’s perfectly alright to be off balance, trust me your family will pull you back to center, whether you want it or not. You’d be surprised what a slap on the head from your wife will do, ha!

Don’t fight ALS, fight to live, fight for moments, fight for each other!

Let’s sit for a moment before we continue on this journey, catch our breath.

More to come ...


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