Archive for the ‘Life’ Category

Reveille at 0530

It starts off well for the first six hours.

I sleep pleasantly enough on my side until I wake up on my back. One (or several) call(s) to the night nurse gets me laying with my left cheek on the pillow once again.

This pattern typically continues until the caregiver comes in at a quarter past seven to get me up (and at ’em).

Did you notice I said typically?

For the past three consecutive mornings I’ve had to break from the normal routine and head off to the recliner at thirty minutes to six.

The issue is phlegm.

At this point in the morning, my saliva really starts to flow out of my throat.

Unfortunately, this past week I’ve been battling a cold and that saliva has transformed into large globules of phlegm.

Since I am unable to muster up the strength to cough it out and the suction machine is largely ineffective in situations like this, my only recourse is to get myself seated in an upright position so the phlegm can drain back from where it came.

Probably not the most elegant solution to the problem but it provides the relief I need at the time.


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Marco Polo

Anyone who has ever spent some time in or near a swimming pool is probably familiar with the game Marco Polo.

Just in case you aren’t the kind of person who lounges around a pool or perhaps you are but you still haven’t the foggiest idea to what I am referring, here’s a quick explanation:

It’s basically a variation on the game of tag that takes place in the water. The person who is ‘it’ closes his or her eyes and says “Marco” while everyone else who is participating must respond with “Polo”. The ‘it’ person then tries to tag one of the other players by honing in on the sound of their voices. The call and response continues until someone gets tagged and that person is now ‘it’.

While it’s been a couple of years since I’ve been in the water (I wrote about the watsu experience here), that hasn’t stopped me from playing the at-home version several nights a week.

A typical game begins around 2 or 3 in the morning. Since I need to be repositioned and rolled onto my side, I begin grunting for help from the night nurse. Marco.


Seeing as how I just woke up and my grunting voice might be a little weak, I fire off two in a row. Marco Marco.

Silence. The night nurse is fast asleep.

I gird myself and spit out five in rapid succession. Marco x 5!

Movement from the night nurse chair. Polo.

Then silence.

This is the point in the game where I would like to stop playing and be rolled over from my back to my side because 1) it is uncomfortable this way and 2) the saliva in my mouth is forming a miniature pool near the back of my throat.

I wait several moments listening for any additional stirrings from the night nurse and when none are forthcoming, I begin to grunt once every three to four seconds until I run out of steam. Marco pause Marco pause Marco pause Marco pause Mar

Polo. The ottoman part of the night nurse recliner slams down to its initial spot underneath the chair.

This is where you would imagine that I’d have made the proverbial tag to the night nurse and I’d be happily laying on my side but the game is still afoot.

There is still no movement from the chair to the bed.

Marco Marco Marco Marco Marco Ma

Polo Polo Polo Polo (body repositioned)

Polo Polo Polo (rolled onto side)

Polo Polo (given suction)


zzz zzz zzz zzz zzz

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A Post with the Most

My apologies for the lack of productivity on the blog lately. There’s nothing wrong with the eye gaze or with me — besides still having ALS — so there’s no need to wonder what’s going on with your friendly neighborhood quadripleege. I’m a-otay!

Here’s what I’ve been up to:

Preparing for another season of Fantasy Football. Longtime readers will recall Fehmeen’s absolute disdain for the hobby but she had a last-minute change of heart when she appeared on draft day with my league’s entry fee wearing an Al Davis-approved white jogging suit. I knew she was good to go when she told me to “just win, baby!”

Making spreadsheets with Google docs. Since my eye gaze system didn’t come with Office installed on it — and not to mention that it lacks a cd drive — I’ve had to make do without Excel (or even Word). Thank goodness for Google docs! I was able to create a fancy spreadsheet to use on draft day.

In case you were curious, you should be rooting for Vikings RB Adrian Peterson, Falcons WR Roddy White and Saints QB Drew Brees to do well this year as they were my top three picks. If only to make my wife happy by getting our money back at least.

Playing Hearts. It took me a few games to get back into a winning strategy mindset, but I think I’m almost there. Being short suited is helpful as is having relatively low valued hearts. One of these days I may forsake the safety of the desktop and venture online for some human competition.

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Actually, it was only six appointments but, for some reason, a thousand sounded a whole lot more dramatic than the real number.

I apologize in advance if you were hoping to read about the additional 994 other appointments I hyperbolized about going to in the title. My bad!

We started out the week on Monday with a visit from Jen and her acupuncture kit. For the first time in a long time I actually felt the chi flowing through my body (particularly my arms).

Laurie came over Tuesday for my hour long massage therapy session. Don’t know if you know this but Jack Johnson’s live cd is perfectly suited to accompany sixty minutes worth of massage time.

Wednesday afternoon I went to see Lindsey and Robin at Robin’s office. At one point, as they pulled my hands and feet in opposite directions, I thought I was an extra in some middle ages torture movie.

We knocked out two appointments on Thursday. First stop was at Dr Ken’s for a much needed chiropractic adjustment. I love it when he cracks my neck. And then Julian and I hightailed to the theater to catch a matinee showing of (early Oscar hopeful) Final Destination 5. I gave it a B- grade.

Finally on Friday, my HMO-assigned wheelchair guy stopped by with some new wheels and a more supportive headrest. The wheels are great but he completely whiffed on the other thing. It was neither supportive or comfortable in any way — even though he kept asking me if it was as my now-out-of-alignment neck was bent awkwardly down and to the left. The whole episode could have been salvaged if he would have remembered to bring something to hold my head in place on the headrest — like we asked for during our consultation four weeks earlier — but he just acted as if this was news to him.

Anyway, it sucks to end such a good week on a shitty note but what am I supposed to do, blog about it?

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E Ticket Ride

I felt the tugging tightness emanating from the center of my chest just as I was about to drift off to dreamland Wednesday night around eleven.

It didn’t feel particularly painless to my nearly unconscious mind and body at the time it happened. It was as if something inside me was slowly being rotated, counterclockwise, and, at the same moment,  was also being drawn out of me.

The intensity of the spinning and pulling seemed to be increasing the deeper into the feeling I allowed myself to go — if that makes any sense — and soon enough, it almost felt as if I was being stretched across the length of the bed.

It was as freaky as it was exhilarating.

Before this strange sensation could continue for another second, I thought I detected the taste of hard plastic (with a touch of saliva) being wedged between my pursed lips. As I forced one of my eyes open, I could see that my night nurse was standing over with the suction machine cranked up to eleven.

It’s a mystery as to what he was even doing there at the time — suction is typically something I request — but as soon as I focused my attention on my mouth, the feeling in my chest dissipated into so much nothingness.

Thanks, I think.

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As Promised

Having never been buzzed — hairstyle-wise, of course — the time was right for a radically different, and most importantly, low maintenance, look for the outside of my dome.

Basically, I no longer resemble The Donald with a small furry critter on my head. Don’t know if I’ll ask for the same thing next time I visit Supercuts.

Oh well, life’s a learning curve.

This is NOT the newest caption contest picture! 🙂

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Buzzed Again

This was supposed to be a post where I’d tell you all about my spiffy new buzzed off haircut. At the end I planned to include a picture showing everybody the brand new do…

…But a funny thing happened happened on the way to the Publish Now button: I thought I killed my Eye Gaze.

Long story short: When I couldn’t download the photo my dad had sent me, I instead opted to copy and paste it on the actual body of the blog itself.

Bad Idea Jeans, considering the copied file was friggin ginormous.

Nothing much happened at first, except for a never-ending hourglass and the screen locking up on me.

After several minutes of staring blankly at the still-not refreshing screen, I x’ed out of there and headed to the Alphacore section of the machine.

When I arrived there, I noticed that several words were missing from the boxes where they typically resided. Then I went to the folder that holds all of my personally created phrases and saw that half of them had disappeared.

When I tried to relaunch my browser, up popped a note saying that my C disk was having issues and that it was recommended I run some program to possibly repair it.

After searching for that program for ten fruitless minutes, I shut down and made a mental note to have someone call Chris from Dynavox for a little help.

But lo and behold when we fired up the machine this morning, the missing program mysteriously ran itself and fixed my problem.

Thank God.

As for the photo of the new hair do, that’s a picture for another post.

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Introductions Are in Order

As a result of a hastily called family meeting and a nearly unanimous, bipartisan vote, we, The Picettis, have decided to allow Emma to get her first pet.

So, it was late Thursday morning that mother and daughter returned home with Lady Ballerina.

Lady Ballerina is a small, purple betta fish who, so far, seems quite content to take it as easy as possible.

Not one to be deterred by her new pet’s lackadaisical attitude towards swimming around the old bowl, Emma is transfixed by the fact that LB not only doesn’t finish all of her dinner but also poops as well. It’s all that she can talk about.

Welcome to the family, little fishie!

Not the actual LB -- named for Lady Gaga and Angelina Ballerina -- this is just the first picture of a purple betta I found.

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This and That

Just a few of the items floating through the mental in-box of ALS Boy these past few days.

The San Francisco Giants converged on the White House today to celebrate last year’s World Series Championship with President Obama. No truth to the rumor that Brian Wilson’s Beard was forced to go through additional security screening before meeting the Commander in Chief.

Showtime is the new HBO, at least when it comes to programming series recordings on our DVR. Shows like Weeds, The Big C, and The Franchise, A Season with the SF Giants, summer tv never looked so good.

Happy Birthday to my mom. She would have been 65 today.

This is where I give a shout-out to all my friends and readers at 3M in Minnesota. Thank you for your support.

So happy to have my girls home after the weekend away.

Breaking News: Emma just pointed to the tv and said, “That’s Barack Obama,” as he spoke right now during his debt address.

This is where I throw NNN under the bus. Nani hated the movie Catfish. Nana merely disliked it. He kept waiting for it to start.

Have you seen the new Jack in the Box commercial for their Really Big Chicken Sandwich? They claim to serve it with meltING cheese. Somehow, I don’t believe that to be true.

There’s nothing cuter than hearing Emma say the word mortadella.

Finally, I have a question for you. Would you rather time travel back to the past or go into the future? Feel free to explain why in your answer.

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Besides the wheelchair and the bed, the only other item in my possession that I could not live without is my brown, faux-leather recliner.

It is way more than just a piece of furniture to me.

I receive at least three hours of forced air via my BiPap every evening while seated in the reclined position. So what if it dries out the saliva on my tongue and the roof of my mouth!?! It’s worth it for the 180+ minute respite of being drool-free.

I have seen countless movies and endless episodes of Real Housewives (of OC, NY, ATL, NJ, DC, BH, and MIA) on that chair. Bonus points if you can identify at least one current cast member from every city/region listed above AND you lack a Y chromosome. You can do it, fellas.

(Please don’t let me be the only one with this particular skill set).

I get tube-fed five meals a day of 350 calorie per serving Boost there. It used to be six times a day but when all I got for my birthday were an assortment of muumuus and elastic waistbanded pants, I knew it was time to cut back.

I watched every inning of the Giants’ World Championship Playoff run of 2010 while my ass pressed down onto that seat cushion. Everyone knows where they were on November 1, 2010 when the Gigantes won it all, don’t they?!

And from the upright position is where I do all of my Eye Gazing.

So, can you see what I’m saying about my recliner and how important it is to me in our household?!?

Well, just this past Thursday, we found yet another way to utilize this incredibly versatile piece of furniture:

As a massage table.

Since the prospect of getting me on an actual massage table is comical at best and dangerous at worst, we made the decision for me to receive my first in-home, therapeutic massage in the comfortable confines of my beloved recliner.

Best decision ever.

To use the chair AND to book the masseuse.

It has been a long time since I’ve felt so relaxed. My arms, legs, chest, back, neck and head. All letting go and staying gone throughout the entire treatment.

It was definitely a rude awakening to open my eyes and have to have all the oil wiped off of my body and chair.

But not so much of a hassle that I’m not counting down the hours until my next session.




Thank you everyone for all the comments and good thoughts sent my way as a result of the Lost Mojo post. They were enthusiastically received and immediately taken to heart. I appreciate your support and I’ll do my best to not stay away so long in the future.

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