Tuesday, January 24, 2012


How many new words do you learn these days?  For me, the answer is “more than I ever wanted to”.

Our daughter, Eleanor, is almost 2-years old.  Developmental experts say she is learning about 10 new words per day.  Neat words like puppy, graham cracker and all the lyrics to the song ‘The Wheels on the Bus’ (go round and round…round and round…).

I turned 40 recently.  I’m not quite sure how many new words I am supposed to learn these days.  What I do know is that the words I have been forced to learn are not as fun as Eleanor’s puppy or graham cracker.

Multiple Sclerosis
Those were the first tough words I had to learn after my diagnosis back in 1999.  With that came a flurry of overwhelming words.
Relapsing Remitting, Magnetic Resonance Imaging, Interferon, Lumbar Puncture
What is the best way to deal with these scary tongue-twisters?  Make it easy by giving them catchy abbreviations and nicknames.
MS, RR, MRI, Avonex, Spinal Tap

So I learned my new vocabulary.  I took my medication.  I visited the doctor a lot.  Life went on…

Over the past year, however, I have been forced to learn a slew of new scary words (and their associated nicknames):
Optic Neuritis (ON), Afferent Pupillary Defect (APD), Natalizumab (Tysabri), Progressive Multifocal Leukoencephalopathy (PML), Fingolimod (Gilenya)

Something very unnerving happened at some point in the game.  As my MS continued to impact everything that I did, those catchy abbreviations and nicknames went away.  I was faced with just the words in raw terms:
Intramedullary Rod, Anaphylactic shock, Bradycardia

New medications offered little comfort in the face of these new ailments:
Prednisone, Sulfamethoxazole/Trimethoprim, Cephalexin, Clindamycin, Doxycycline Hyclate, Capsaicin, Lidocaine, Zolpidem Tartrate, Meperidine, Propofol, Oxycodone, Oxycodone/Acetaminophen
It’s hard to find solace in a treatment if you can’t pronounce its name, let alone define how it works.

Lucky Eleanor…
Sometimes I long for the days of puppies & graham crackers!
Kevin Byrne - Portland, OR

No comments:

Post a Comment