Tag Archives: diagnosis

Let’s Challenge ANOTHER Word, Shall We?

Surprising?  HA!  I doubt that – to read that I challenge yet another word associated with Ben’s diagnosis and life journey.  This challenge isn’t like my internally brewing frustration for the use of “retarded” but instead a question of why a word is used when referring to my son (or your son or you daughter).

The word is SEVERELY

  • to an undesirably great or intense degree.  “our business has been severely affected by the slowdown”
  • strictly or harshly.  “the culprits will be severely punished”

Most of those words do not apply to Ben’s condition.

Undesirable presents as choice.  He condition is undesirable?  Well duh.  Can we change it?  Nope.

Strictly or harshly?  Strictly implies structure.  HA.

Harshly.  Not at all. Neither life nor condition are harsh for Ben.  Maybe on the rest of us but we’re not talking about “us” – it’s about Ben.

Yes, maybe intense degree applies.  1/6.25 billion.  That’s intense.  11% of a cerebellum.  Also intense.

But can anyone actually tell me that when they hear the word “severely” they’re considering the intensity of a condition and not the effects of it?

I would prefer the word SIGNIFICANT to be used.

  • sufficiently great or important to be worthy of attention; noteworthy.  “a significant increase in sales”
  • having a particular meaning; indicative of something.  “in times of stress her dreams seemed to her especially significant”

Sufficiently great or important to be worthy of attention.  Yes the condition is and yes, Ben is.

Indicative of something?  Of course; significant developmental delays?  For sure.

Severe creates a shadow of negativity over Ben’s life and over his diagnosis; it doesn’t have to be looked at it that way.

Ben’s life and world is far from harsh – it’s bright, fun, happy and centered around him.

That’s of particular meaning if you ask me.

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Another thing to add to the list…

Last week, Ben was put into his standing frame in his AFO’s like always and lasted about thirty minutes before he had had enough.  When he was removed from his stand, the muscles in his ankle and calf on his right foot started spasming and continued to do so for about an hour and a half.  Scary stuff.

This morning we met with our Physical Medicine doctor, Dr. Watt (who is very cool!) and he informed us that this type of spasm is actually called Clonus.

Clonus as defined by Wikipedia is:  a series of involuntary, rhythmic, muscular contractions and relaxations. Clonus is a sign of certain neurological conditions, particularly associated with upper motor neuron lesions involving descending motor pathways, and in many cases is, accompanied by spasticity (another form of hyper-excitability). Unlike small, spontaneous twitches known as fasciculations (usually caused by lower motor neuron pathology), Clonus causes large motions that are usually initiated by a reflex. Studies have shown Clonus beat frequency to range from 3–8 Hz on average, and may last a few seconds to several minutes depending on the patient’s condition.

 

Sounds fun right?  Hardly. 

I am definitely starting to get the hang of this diagnosis stuff; I predicted that it was a neurological thing.  And in that of course means we now have to schedule a follow up appointment with Ben’s neurologist. 

It’s definitely that time of year – November through February is appointment time.