Five Days in Exile

Day 1:  Never having heeded the sage advice of the axiom that says that one should pace oneself, I decide that the most prudent course of action during this unprecedented period of time without the Eye Gaze is to completely immerse myself into the world of streaming movies on our flatscreen courtesy of our Blu Ray player and Netflix. Bad idea (jeans)!! Not only does Netflix streaming have just a handful of imminently watchable films and shows available online but I believe that I’ve discovered that my absolute limit on consecutive movies watched in a single viewing tops out at a hair under two-and-a-half.

Day 2:  I realize that I am missing out on my daily crossword puzzle fix and I can almost feel the knowledge draining out of head with each passing minute of my internet exile. Gone are fun factoids like “nearly closed” (ajar), “source of poi” (taro), and “end of a shoelace” (aglet). Rushing in to fill the void is a heaping helping of nothing. Seriously.

Day 3:  Reflecting upon my current predicament, I find myself jones-ing for information. About anything at all. What I wouldn’t do to be able to click on a hyperlink and read up on whatever strikes my fancy at that particular moment in time. I’ve gotten so used to mining the web for interesting stories that to suddenly be deprived of the ability to do so is just plain wrong.

Day 4:  In order to satisfy my seemingly insatiable need to take in information through my eyes, I start watching tv shows in foreign languages that have English subtitles. Did you know that the mayor of Bogota, Colombia employed people dressed like mimes to help regulate the (bordering on chaos) traffic flow of the capital city? I didn’t either. And that wasn’t the only thing he did while in office.

In hindsight, I can see now that watching shows just to read the subtitles was me hitting rock bottom in terms of my being an information junkie. Even though I’m quite pleased with the knowledge gleaned from that program, the point being is that it shouldn’t have gotten so far.

Day 5:  Not much I recall from this day except for visions of Mozilla Firefox dancing through my head.

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Reunited and It Feels So Good

At approximately 5:30 PM last Wednesday afternoon, my link to the outside world decided to up and quit on me.

After a year being joined at the iris and pupil, the eye tracker in my eye gaze machine died a warrior’s death while valiantly serving me in the writing of my book.

A list of contact names and numbers was quickly compiled and by Thursday evening, a course of action was decided and embarked upon.

We would be sending the broken piece of equipment back east to Dynavox for repair or replacement. Depending on how quickly my insurance company could process and authorize the transaction, I was given a two-week turnaround time frame.

Two weeks?

This is Kaiser we’re talking about.

Two months, minimum.

In the meantime, between now and the next time the benevolent gods of expedited paperwork feel like accepting my meager sacrificial offering of an entry level bureaucrat and an old-fashioned, hand-cranked ditto machine, I have been given a loaner eye tracker to use.

Jennifer from the UCSF ALS Center managed to not only find an unused device but she delivered and installed it as well. Thank you.

Major props to Fehmeen and my dad for hitting the phones hard on my behalf and for getting me back in the game sooner as opposed to later. As you are so fond of hearing the Dynavox saying:  Thanks thanks thanks thanks thanks thanks thanks thanks thanks thanks!!

Be sure to come back tomorrow to find out how I (barely) survived five days without the internet.

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The Robin Tobias Seal of Approval

My new manual wheelchair was finally delivered to our home this past Monday.  Considering that we ordered it back in June, I had almost forgotten all about it.

Well, actually, that’s not entirely truthful.  They have been calling us for the last three or four weeks wanting to make the drop-off but we’ve kinda sorta been avoiding answering them.  You see, delivery of the new manual chair meant the taking away of my old power chair.  I have been sitting in it for over a year now and I’ve gotten quite accustomed to everything about that chair.  I didn’t really want to let go.

So when wheelchair guy Ryan arrived several mornings ago to make the switcheroo, I tried my best to give him the hard sell as to why I should maintain possession of my beloved old friend but he was having none of it.  He tweaked it and torqued it and customized it to my laser-pointed specifications.  And in the end, he left me with the brand new manual chair and an attitude of I-guess-I-could-learn-to-like-it.

We took the chair out and about yesterday to my physical therapy appointment.  My PT, Robin Tobias, couldn’t say enough good things about it.  Words and phrases such as ergonomic and excellent engineering were bandied about during the entire hour of our stretching session.

Suddenly, the chair didn’t feel quite as uncomfortable as it did less than an hour before.  If she likes it so much, the least I can do is give it a decent shot to do its job before I condemn it for not being what I am used to.

When Robin speaks, people listen.

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No Wireless No Problem

Today was the day my wireless woes went away.  I hope.

With the expert help of blog reader Gary (who is also married to one of my former teaching colleagues) and the omnipresent Italian Man Servant, we were able to vanquish the seemingly unbeatable foe by going old school on its @$$!

Even relocating the wireless router mere inches away from my Dynavox couldn’t get the job done.  I guess the developers spent all their seed money on the top-notch speaking and eye gaze components and next to nothing on an adequate wi-fi system.  When all the shouting was done, I am now connected to the interweb by way of an ethernet cord.

Who would have predicted that that would have been the solution to my wireless problem?  Not I, that’s fa sho.  Wi-fi is dead, long live the ethernet cable!

Thanks Gary and the ILM.

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Me and My Shower Buddy

Based upon that title alone, I can only wonder what thoughts you are having about the potential content of this very post at this moment in time.  Well, I hate to disappoint you but it’s most definitely not what you are thinking.  Unfortunately.

Here is a picture of my brand new shower buddy.  I have been using my shower chair for about a week now and it was not without a slight learning curve.  It’s not particularly comfortable and it takes time to get used to the feeling of having your cheeks exposed through the seat of the chair.  So far so good, though, aside from an unfortunate choice of product name.  Then again, I would imagine that I am not their typical client both in age and mindset.

In other news, wireless connectivity is still an infuriating issue so I apologize for the infrequent and brief posts.  Hopefully we’ll find a solution soon.  Before I go insane in the membrane.

Oh yeah, yesterday was a five letter, one word name film festival at my house.  I watched Gigli (half an hour was all that I could stomach), Speed (it had just begun when I bailed on Bennifer), and Taken (it was around this time that I made the link with all the movies so I felt an obligation to finish it off).  Thank goodness that my internet was down because my Netflix queue would have been radically redesigned with one word, five letter film titles.

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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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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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To Sleep Perchance to Dream

Had a brand new bed delivered to the house last night.   Between seven and nine pm.   It was one of those fancy Tempur-pedic mattresses from ManCHEEni’s Sleepy World (pronunciation courtesy of Nasseem Seriana, my favorite mother-in-law).

The bed itself is quite the sight to behold with its adjustable foam and remote control and the little button that goes ding when you push it.  The mattress is a bit on the pungent side at the moment but we were assured that the smell would disappear in a few days.

As far as the comfortability factor goes,  I must say that after one night I kinda miss the old one.  I didn’t realize this until last evening but I had really gotten used to the ALS Boy-sized divot my body had made over the months and months of falling asleep in the same spot night after night.   Things like that are fairly important when your entire repertoire of movement maxes out at rolling from your left side onto your back and you have to constantly wake up your poor beleaguered wife to roll you back onto your side after things get too uncomfortable in the supine position at least two but usually three times a night.

Last night it felt as if I was sleeping on a sheet-covered slab of concrete that was missing my precious divot and then I started to get in my head about it and when I tried to move, my muscles got stiff and I began to moan from exerting so much effort with trying to move and then the lights came on when the short-limbed cavalry burst onto the scene without a shirt on.

Needless to say, I would love to avoid any more household-wide sleep-depriving panic attacks in the future so can somebody who knows from personal Tempur-pedic experience please tell me that this mattress will get super-comfy super-quick.

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A New Way to Roll

It may have taken awhile but I have finally made the decision to give up the last vestige of my independence in terms of my mobility. After several months of diminishing returns, the time is now to put my power chair out to pasture. It blows my mind to think that a twenty thousand dollar machine could be rendered obsolete  by my right hand’s  inability to move laterally to the right but that is precisely what happened.

We booked a meeting with our mobility guru  a few weeks ago and we attempted to  place the joystick so I could control the chair with my chin but that was about as successful as  Heidi Montag’s singing career. We even tried different joysticks but the results were the same: the dream of my continued independence had come to a close.

I was fitted for a spiffy manual wheelchair that has all of the same functions as my previous chair did minus the power component and for fifteen thousand dollars less. Now the only thing left to do is to convince my HMO (I’ll give you a hint, it begins with K and ends with aiser Permanente) to swap the old one for the new one. I don’t believe it should be a problem because they already own the power chair. You see, patients like me who have a sooner-than-later probable expiration date are no longer allowed to own our own durable medical equipment courtesy of KP’s dime, we only have the option of renting it through them. In theory this brand new program is supposed to curtail the post-mortem resale market that no doubt exists.

If all goes according to Hoyle, the next time you see me on the roll it will be in our — and by that I mean Kaiser’s and my — super comfortable, less-stress-on- me- and- my- entourage manual wheelchair. On the off-chance that Mr Murphy — as in Law — decides to rear his head, I am quite certain that you will read about it here first.

Typed by: Handsome Woman

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A Peek Behind the Curtain

Pay no attention to the man behind the curtain. Unless that man is writing a blog with his Eye Max machine. If that’s the case then perhaps you should take a look at these never-before-seen photos:

More than an accessory to look sexy for the ladies, the neck brace helps hold my head steady so I can do my thing with my eyes.

As the Eye Max hangs from its stand, all I have to do is stare and blink.

This is where all the magic happens: the alphacore screen. I can choose either letters or words and in the blink of an eye I can select it.

I am sorry for the blurry pictures. I must have done something weird when I downloaded them from my email. Poor Lhito had to not only type this piece but he had to get creative with the photos as well.

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