Archive for May, 2011

Unexpected Plot Twists

As the number of days of my living with (a diagnosed case of) ALS eclipses the 1300 mark, I find myself in the perpetual state of being both amused and annoyed by what this P.O.S. disease has done to my body.  While a majority of my symptoms — like the inability to walk, talk, eat, and even move — are straight out of the motor neuron disease handbook, these ones that I experience on a daily basis are not in any Idiot’s Guide to Terminal Illnesses that I’ve ever seen.

I’m pretty sure I have the world’s most sensitive legs.  Basically, anything below my waist seems to operate on a hair trigger.  If someone casually pats my thigh, my knee and foot react accordingly.  To the moon, Alice!  Good luck to whoever gets the happy task of washing my feet each morning.

Every evening at approximately eight o’clock the toes on my right foot get unbelievably and unbearably itchy.  It’s uncanny how it only happens at that particular time.  The itch subsides once Fehmeen scratches it for a minute, thank goodness (for Fehmeen).

The middle finger of my left hand has a propensity to curl up like a seasoned curly fry if left to its own devices.  Only the left hand.  I am constantly asking people to straighten it out for me.  I suppose that this symptom is karmic payback for all those one fingered peace signs I used to flip in my capricious youth.

Lately I have been having some very specific food cravings for things I haven’t eaten in years.  A baloney sandwich on white bread.  A slice of vegetarian pizza from Round Table.  Two Giants Dogs from AT & T Park.  Is there any way we can get this stuff in Boost (Ensure) form?

My yawns have backed off a little from the full body dry heaves they used to be.  On second thought, maybe they are still pretty crazy but I’ve just gotten accustomed to them.  Whatever the case, once I experience a yawn, my lips and eyes are due to be wiped, my fingers should be unfurled, and my mouth could use a good suctioning.

The funny thing about sneezing when you are a quadriplegic like me is that you are essentially a passenger on a roller coaster of unknown duration.  It could be once or twice around the track but then again it could go on and on and on for almost ten minutes before it lets up.  In those extreme cases, a fresh box of tissues and a whole lot of patience is advised.  In the end, my mouth will be requiring a good suctioning.

I get so much suctioning to alleviate the saliva buildup in my pie hole that I am seriously considering changing my middle name from John to DeVilbiss after the company that makes the machine I use.

Once I finish eye gazing for the night, I typically lean back in my recliner with the BiPap strapped onto my face to watch a little tv.  The only problem is that the minute my head goes back, my eyelids begin to shut very much like those dolls whose eyes close when you put them in a supine position.  If I request to be placed in a non-reclining posture, it’s only about five minutes to suction time.  And nobody is overly jazzed about that.  So I usually choose to just listen to our favorite shows.

Last on my list is I wasn’t exactly prepared for the high number of people who have seen me in all my glory these past three plus years.  By my count, there has been at least twelve people who have seen my birthday suit so far.  I guess I’ve overcome my shyness.


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It has come to my attention that one very special and important member of our Adventures of ALS Boy blog-reading family is wondering how fiscally feasible it is for me to continually provide such lavish and extravagant prize packages to the winners of the caption contest week after week.

Well, NNN*, while I’m (legally) unable to divulge and discuss that topic on the blog, I am, however, quite willing to disclose to you the unbelievable pile of complimentary swag that you’d be taking home with you should you ever enter and win that aforementioned caption contest.

Are you ready for it?

This is your prize package:

Not only do you get a three-week supply of environmentally friendly hyena repellent, you have also won a dozen fill-in-your-own-amount gift certificates to the world famous Wah Jee Wah mobile restaurant, as well as a coveted backstage pass to meet Ranjit and Chad the next time their Tech & Talk show comes to town.

* NNN is a nicknani used to disguise the identity of the person about whom this entry is written.

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Howdy folks and welcome back to another edition of this blog’s up and coming weekly featurette:  The Calling All Captions caption contest.  The assembled panel of judges had our work cut out for us this week choosing the best of the best but that’s why we get paid the big bucks.  And the winner is …

Ladies and gentlemen... ...REO Douchewagon! - by Mick

Major league props to Mick for coining THE perfect phrase for this week’s photo.  As for what you will be receiving for your winning efforts, we pulled out all the stops and spared no expense on your behalf:  A lifetime supply of woodwind reeds from Frank Catalano’s ABC Music in (sunny) San Bruno, a never-ending tray of lumpia pulled right from the oven, and a personalized parking space at the Shell station in Pinole.  It should be noted that Pinhole has perennially been voted California’s friendliest town for stranded motorists driving white Chevy Malibus.  I betcha didn’t know that, didja?

All that chamber of commerce crap aside, congratulations to Mick for being the top dawg this week!

Here are the runner-ups:

  • Richard Simmons unveils the Dream Team – by Kevin Connell
  • The executives at Chess King soon realized that holding an open casting call for their 1989 catalogue was a bad idea, ultimately leading to the retailer’s untimely demise. – by Traci
  • Cast of Jersey Shore signs on for its tenth season! – by Dave (via Nicole)

Congrats to all of you as well.  Good work.

All right, let’s get to this week’s new picture.  Buena suerte.

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