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Archive for September, 2010

Every so often, when the mood strikes, I like to look within myself and ask aloud those questions that have found their way to the forefront of my mind.  Instead of being rhetorical in nature, I am soliciting your participation in the form of an actual answer to any or all of my current queries and navel-gazing observations.  Thanks in advance for your help in this matter.

Why does Volkswagen have such odd sounding names for their car models?  I realize that names like Barracuda and Mustang were already taken but Routan and Toaureg?  C’mon man!

Speaking of those cars, why do people play that Punch Dub game every time they see a VW on the road?  Better yet, is this a real game or is it a made-up one created as a television marketing tool?  My friends and I used to hit each other when we caught a glimpse of an out-of-state license plate but never for a particular vehicle.

Why did I wake-up with a hair-do similar to that of bowling champion Big Ern  McCracken from the movie Kingpin? 

Why would anybody choose to watch a full-length feature film on the screen of their smart phone? That’s not even considering how crappy the sound would be and all.

Why do I have that old Orleans song Still the One running through my head right now?  We’re still having fun and you’re still the one.

How fun has it been watching the San Francisco Giants this season? More specifically, how many shades of awesome has September baseball been?

Conversely, why have the 49ers started off the year so blankety blank blank blank?  At least my fantasy team, the SituJason, got off the snide this week with our first win.

Why are you singing Still the One right now? Could be worse, I could have said It’s a small world after all.

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Change of Address

For the duration of our residence in our home in the city of good living, my primary seat for just about anything you could imagine me doing has been on the padded bench at the kitchen table.  I ate there, drank there, feeding tubed there, read comics, magazines and Kindle books there, entertained visitors and held court there, and even watched tv there.  But hands down my favorite activity to do there was blogging on my Eye Gaze as pictured below.

Lately though, it has been getting increasingly more and more difficult to maintain my balance through the trunk of my torso when I try to stay seated for any length of time beyond the time it takes to finish a healthy and hearty breakfast of oatmeal and apple sauce.  It was taking a toll on my neck and back and worst of all I was beginning to dread my time spent writing on my computer.

So, at the gentle but rather insistent prodding and suggesting of my friend and physical therapist, I have decided to make the move to more comfortable pastures and found a better place to blog pictured below.

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Infamy Can Wait

Earlier this summer I had an interesting concept for a short film.  Unfortunately for viewers the world over, the window of time for this sure-fire viral video has slammed shut due to my inability to shower in the upright position.  I had emailed my shot by shot instructions to the Italian Man Servant/Flip Video Camera Operator but the actual filming never happened.

So instead of allowing another brilliant idea to disappear forevermore into the infinite vacuum of time and space otherwise known as my Eye Gaze hard drive, I figured why not publish it on my blog for all to see.  If any aspiring videomaker (with or without a terminal neuromuscular disease) wants to pick up where I left off and actually shoot the damn movie, you have my blessing and endorsement so long as you credit me in the closing titles with Original Concept by Jason Picetti then we are cool. Enjoy.

I Am Crocs

I would like to ask for your help to make a short movie about my crocs. You will be the camera man. I want to film the crocs as they go about their daily duties. Only the crocs will be on screen, not me, not Fehmeen, nothing but the crocs. Very important.

Shot 1: Fehmeen picking up crocs from shower and putting them on my feet as I lie in bed. Stay on the crocs as she sits me up and transfers me to the wheelchair. Follow the crocs as I am wheeled to the sink. Pause camera.

Shot 2: Follow crocs as she transfers me to the toilet. Only press pause after my boxers are resting on the crocs for a few seconds.

Shot 3: Once I am standing in the shower, begin filming the crocs from the ground of Fehmeen’s shampoo area as the water warms up. Continue shooting the crocs until after the shampoo is washed out of my hair.

Shot 4: Stay on crocs as Fehmeen seats me in the wheelchair on the towel. Follow the wet crocs as they are removed from my feet and tossed on the shower floor. Pause.

And that is it. Thanks for doing this for me. It will look so cool.

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Eight Names on a Sh!t of Paper

Tilted back in my wheelchair under the blinding warmth of the adjustable lamp in the hygienist’s workspace, I stare thoughtfully at the typewritten names that comprise the list that is carefully thumbtacked to the wall and wonder what, if anything, it is that the eight of us have in common other than the fact that we are all patients of Ross O Williams, DDS.  My mind swims through the ocean of possibility and incalculable probability that has brought us together to share the same uncomfortable vinyl chair on this particular day between the hours of 8:15 and 3:45 and when, if ever, we will have occasion to be bonded together again in each of our lifetimes.

I’m just happy that it wasn’t a longer appointment. Or a longer list of names.

And as far as the rest of the title is concerned, that is all about our little girl.  You see, Emma doesn’t like it when people say bad words.  To quote the pre-school aged genius, “Mama, another word for shit is poo.”  And when Fehmeen casually mentioned to the two-and-a-half year old that she was writing on a sheet of paper, Emma chimed in with the following: “Don’t say shit of paper Mommy. Shit is a bad word.”  That conversation was followed by a lengthy discussion between mother and daughter on the etymology of -it and -eet words and how different the two similar sounding words really are.

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Neurological Jiffy Lube

Had my three month (or 3000 miles) appointment at the ALS Clinic at UCSF yesterday.  While the one-stop shop model is super convenient for seeing the entire team of doctor and specialists, it does make for an extremely long day being cooped up in a relatively tiny examination room for three-and-a-half hours.

They came in one by one, ready willing and able to answer all of our questions.  In order, we saw the respiratory therapist, the MDA representative, the social worker, the speech therapist, the nutritionist, the physical therapist, and the neurologist.  The nurse and the occupational therapist were not in-clinic.

Usually we have at least one question of immensely monumental significance — as well as a series of follow-ups — to ask the team and yesterday was no exception.  When should I think about getting a tracheotomy?  Is it a common procedure amongst ALSers?  Is this even something that I would want to get done?

Our queries were answered with the clarity of years upon years of experience and expertise.  I was forced to confront my fear of using the Bi-Pap machine by my own neurologist who, along with Fehmeen, was able to spell out in terms that were abundantly clear to even a dense and stubborn emmeffer such as me that I either learn to love it or die not trying.  (At least that was the message I took home).

As I headed out the door and down the freeway towards our weekend in the city of St Chuck, I am filled with a thousand thoughts of decisions that need to be made before my next 3000 mile neurological oil change.

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Now that the new Fall television season is upon us, our DVR is preparing for an onslaught of series recordings to begin occupying space on its hard drive.  Here is the comprehensive list of shows that we love to watch at our convenience without commercial interruption:

The Office – This show really fires on all cylinders when the producers involve the entire cast and not just the principal players.  A perennial go-to favorite regardless.

Weeds – We’ve been absolutely loving this new season.  But that’s what we say every year.

Parenthood – This one is more in Fehmeen’s wheelhouse than it is in mine.  I pay attention occasionally when it gets good.  Keyword occasionally.

Eastbound & Down – Only four more days until the premiere on Sunday! Kenny Powers rules!

Real Housewives of DC – Technically this is a holdover from the summer but I can never get enough Bravo-style reality show drama.

Boardwalk Empire – I’m not quite sold on this one yet.  I still remember all the hype about John from Cincinnati.

Bored to Death – This little gem also returns for a second season on HBO this Sunday as well.  Best show on television imho.

Now that I’ve shown you mine, I would love to see yours — DVR record list, that is.

Seriously, post your list.  Please.

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Positively Mental Octopus

Yogi Berra said that ninety percent of the game of baseball is half mental.  Always having been a fan of many of Mr Berra’s nuggets of wisdom, I now believe this quote is more applicable to living with ALS instead .  At least that’s how it has been in my experience.  But then again, I have always done a lot of my el eye vee eye en between my ears.

(Go back and pretend that you are spelling out the word livin’ in the preceding sentence and it will make a little more sense.  Bonus points for th first person to name the movie and character that reference came from).

For the uninitiated amongst you regarding the physical aspects of a neuromuscular illness like ALS, I can tell you that three years ago I could walk.  These days I have a difficult time holding up my upper body while seated in my manual transfer wheelchair.   My muscles no longer are able to do the job they had previously done for the first three point seven decades of my life.  The physical deterioration of my body is undeniable.

But that is only a small part of the battle.  The real fight occurs in my mind.

I wage a daily war beneath my skull in an attempt to make real the old cliché mind over matter.   There are moments each day when one of my legs is stiff with spasticity and no amount of familial or caregiver TLC and bending is going to do the trick.  I am forced to tune out the outside world and focus inward on relaxing the area of my body that is acting in an uncooperative manner.  Winning strategies and techniques vary greatly but eventually, the muscles calm down to such a degree that I am able to get done whatever it was that needed doing in the first place.

But that is not the aspect of my mental octopus that I wanted to talk about in this post.

For my money, the most intense and difficult piece of the mental puzzle is coming to grips with letting go of something that I had been doing for as long as I can remember.  The best way that I know how to describe this thought process is to walk you through my ALS-induced shower routine.

At first, nothing was discernibly different except for the fact that I had to be careful not to lose my balance.  One year later I required assistance stepping over the side of the tub and into the shower.  Then came the portable plastic grab bars (that you may have seen advertised on television).  The next stop was the shower remodel and the installation of a set of permanent metal grab bars.  I held on to that bar both literally and figuratively for over a year.  I was so proud of the fact that I could still stand and be given a shower that it almost felt as if I still had the upper hand on the disease.

But that all began to change a few months ago.  The lengths of the showers were decreasing as my ability to stand and hold the bar began to diminish.  I spent my mental capital trying to hang on to the remaining vestiges of what I believed to be the Last Stand of ALS Boy.

As I struggled to remain upright and erect (he he) in the shower, an interesting thing happened between Emma, Fehmeen and a box of cookies.  Emma had earned the privilege of gnawing on the enormous cookie because she had eaten all of her dinner but things were not going the way that she had envisioned them going.  She wanted to hold on to two cookies and when Fehmeen told her that that was not going to be a possibility, Emma said that she didn’t want any cookie at all.  When Fehmeen explained to our two and a half year old that that line of thinking would only end up hurting herself, it was almost as if my wife was speaking directly to me and my issue with the shower.  Why should I have to suffer through a potentially  dangerous and ultimately unsatisfying shower standing up when a more viable and beneficial alternative existed.

A few days after that discussion about the cookies I began to feel the effects of a lingering cold and not enough sleep.  There was absolutely no way in hell that I could man up enough to stand in the shower.  When it was suggested that I stay seated in my transfer chair for the duration of my shower, I literally sat at the opportunity.  Why should I waste my energy wrestling with the concept of a paradigm that had worked splendidly for me for a long time and whose effectiveness has clearly had its day in the sun?

The answer to that question became abundantly clear as the warm water washed over my smiling and relaxed face and I was able to truly enjoy and savor the shower experience more than I had in months.

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