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Archive for December, 2008

The story that you are about to read is true. The names have been omitted to protect the identities of those involved.

Once upon a school day, there was a teacher who taught middle school. One of the teacher’s students was hearing impaired and in order for this particular student to access the lesson being taught, the teacher was asked to wear a tiny, lapel microphone in class each day. Whenever the teacher spoke, the microphone would transmit the sound of the teacher’s voice into a small speaker/hearing aid device located in the student’s ear.

This method of communication was more than adequate in enabling the student to hear the lecture and take part in any class discussions. The only potential problem that could arise would be if the student forgot to hand the teacher the microphone at the beginning of the period. Being an organized and conscientious student, this situation rarely happened. In reality, the opposite was often true: the teacher forgot that the microphone was even attached to their lapel.

One spring day, the teacher finished lecturing a bit early and decided to allow the students to begin their homework for the evening during the time remaining in class. As the teacher circulated amongst the students offering encouragement and providing assistance to those who required it, the teacher began to experience the early warning signs of gastrointestinal distress.

After another go round of helping students in need, the teacher casually wandered over to a distant and unoccupied corner of the classroom in order to get a little relief for the escalating gas problem. Upon arriving there, the teacher gave in to the unbearable urge and blasted several farts in rapid succession. A cursory glance at the students revealed no obvious signs of audible detection so the teacher continued with another wave of flatulence aimed at the corner of the room.

Satisfied and relieved, the teacher began to make the rounds once again, pleased that no one had heard the farting that had just occurred. All was as it should have been until the teacher got to the desk of the hearing impaired student. What the teacher saw stopped the teacher in their tracks. A look of utter and abject horror was plastered across the student’s face as the teacher realized a moment or so too late that the microphone was still attached to the lapel. The student had heard every single fart, quite clearly in fact.

Neither of them acknowledged the incident to each other at the time nor in any other class the two of them shared for the remainder of the school year. Although the event was never spoken about in public or in private, there is no doubt in my mind that neither of them ever forgot what happened during that fateful moment when the teacher didn’t think anyone was listening.

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To Trial or Not To Trial

I have my final meeting with Claudia this Thursday and I’m feeling kind of bittersweet about it. On one hand, I won’t miss the routine of filling out the same survey every time I visit (too boring), removing my shirt (too sexy) and sleeping my way through not one but two EKG tests, peeing in a plastic cup and guiltily cleaning up the overspray (too eww) that didn’t quite make it into the intended receptacle, and giving up a vial or two of my blood (too draining, ha ha) in the name of scientific progress. I will, however, miss hanging out with the awesome Miss Claudia. She is the textbook definition of good people: she’s a compassionate person who is doing a difficult job.

For the record, Claudia is the point-person for clinical trials at the ALS Center at UCSF. It has been my privilege to see her at least once a month since June of this year so that she could monitor my progress on the drug. With the course of the study almost completed, my time in this clinical trial is nearly over as well. (Click here to see my previous posting on the topic).

Personally, I feel that the time that I have spent on the open label portion of the trial has been extremely beneficial to me (as a person who suffers from pseudo-bulbar affect). Once I began receiving the full strength dose, I noticed a dramatic decrease in the number of uncontrollable laughing and crying episodes that I had to endure during that time period. Fortunately, I have been promised a steady supply of my twice daily, red, happy capsules once I exhaust my UCSF stash. So, alls well that ends well, right?

At the time of my last visit, Claudia planted the seed in my ear that there were a few more clinical trials heading UCSF’s way come the new year that I may be interested in. One study will use lithium and the other study will use ceftriaxone. The stated purpose in both studies is to see if the drugs are effective in stopping the disease’s progression. Folks who choose to take part in the study must choose one trial or the other, but not both. (Of course, neither study is a viable option as well).

Let me begin with the lithium study. Take a second and google the words ‘als’ and ‘lithium’ and tell me what comes up. For the benefit of all you lazy and/or busy people out there, you will discover the phrases ‘Italian study’ and ‘slows progression’ (nearly) everywhere you look. When the study was published, word spread fast around the ALS community and people scrambled to get on lithium (myself included). Anecdotal results of lithium’s efficacy have been varied at best and in no way comparable to what was reported in Italy.

From what I’ve been told, American researchers in this study are trying to replicate the results of the Italian study but on a much larger and more controlled scale. Based on my own personal (and brief) experience with lithium, I wasn’t too impressed. I perceived my progression to be quicker while I was on lithium versus my progression while not on it. Combine an overall aura of ineffectiveness with the potential damage that lithium can do to one’s internal organs (such as the liver) and you don’t have to ask me twice: thanks, but no thanks.

Initially, I thought that the ceftriaxone study may have been the one for me until I read the fine print. Basically, ceftriaxone is an antibiotic that, for the course of this study, has to be administered intravenously. A catheter would be surgically implanted into my neck and I would have to inject the liquid into my system twice a day for upwards of a year’s time. (I’ll pause here for reflection).

Not only does this sound invasive as hell, it would also mean that I would essentially be killing any and all bacteria in my body (there are some bacteria in there that are beneficial). What’s worse is that there is a 50/50 chance of placebo. I don’t know but this doesn’t sound like my idea of a good time.

I don’t need to make any definitive decisions about whether or not to participate in either trial for several months but I would love to solicit your take on whether to trial or not to trial. Thank you for your valued input.

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The Other Side of Life

Fehmeen and her sisters and brother lost their grandmother this past weekend. Iqbal and his siblings lost their mother and Nasseem lost his wife and partner of sixty-plus years.

Zahra Nasseem Khan was a kind, compassionate, and cordial woman who brought joy to her family and friends. She enjoyed traveling, socializing, and spending time with the people she loved.

The world is a less illuminated place without her here. Good bye, Mama.

Mama, Papa, and Emma

Mama, Papa, and Emma

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This I Believe

I believe in the power of positive thinking. I always have and I always will. It’s more than a mindset and less than a worldview (if that makes sense). I don’t swim in a sea of blind optimism nor do I think that the sky is falling. I suppose it boils down to this: when you think bad things are going to happen to you, they probably will.

I believe that things happen for a reason. I like to look at my life as a (somewhat) linear series of events where one thing leads to the next thing. Why else would I have begun privately tutoring students while working for Continental Glass and then quit that job in order to attend the College of Notre Dame to get my teaching credential and then to get a phone call at the school from one Diane Campbell, a teacher at La Entrada, pleading with the program director to send a credential candidate to her asap to take ten students from an overcrowded math class off of her hands only to become a staff member there the next year and to then meet Fehmeen by the copy machine in the staff lounge which led to our marriage and of course, The Bug. Yeah, you could say that I believe that things happen for a reason and sure, I’ve got ALS now, but at this particular point in time, the reason why hasn’t been completely revealed (although I have a fairly strong inkling why).

I believe in the people that have rallied around me. From Fehmeen, who has demonstrated superhuman strength and unconditional love for me throughout this nightmare called motor neuron disease to my parents, John and Judy, who essentially gave up their post-retirement lives to help take care of me and help us raise Emma to the ever-resilient Khan family who are there for us for whatever we need, day or night to our families, friends, co-workers, doctors, care providers, former students, current students, their parents, and even strangers. Every single one of you have gone above and beyond the call of duty to be there for me. I don’t say it nearly enough, but thank you.

I believe in the power of Emma. I knew she was special even before she was born when she delayed her own birth by ten days past her due date so that she and I could share the same birthday of April first. I believe that on some deep, subconscious level she knows, and has always known, that her Daddy has something going on healthwise and she behaves accordingly. She responds to my questions in our unique shared language, she sits patiently on my lap whenever we hang out together, and she always has to be touching my hand, arm, or leg whenever she is sitting or laying near me. The crazy thing is, and I’ve noticed this since she started doing more than eating, sleeping, peeing and pooping, that whatever skills and abilities (talking, grabbing, lifting, crawling, and rolling over) I slowly start to lose, she slowly starts to gain them. I know it may sound a bit odd, but think about it; she is developing the muscles to do these things at the same as mine begin to die off. It’s like a weird transfer of superpowers or something (so says this comic reading geek). Anyhow, regardless of all of that, the feeling I get inside when I look at her or even think about her, I forget completely about what’s wrong with me and I submerge myself into the miracle that is my daughter, Emma.

I believe that when I replaced my five metal fillings with non-toxic amalgam ones in June and when I had two dead, infected, metal post-filled root canaled bottom molars yanked out in July that I pro-actively removed a major source of toxic poison from my body and nervous system. (The way I look at it is like this: What area of my body is most affected by ALS? My tongue (speech and swallowing). And where was there a major source of poison near those areas of affect? The teeth in my mouth. Coincidence? I think not). Once I took care of eliminating some obvious areas of toxicity, the rate of my ALS progression has appreciably slowed down in comparison to the rate earlier on with the metal in my mouth.

I believe that God gives you exactly what you can handle.

I believe in my ability to outlive the average time that a typical person survives with ALS. The first neurologist to diagnose me characterized the amount of time someone lives with ALS is more along the lines of years and not decades. I decided right then and there that I was going to be an exception to that somewhat discouraging rule of thumb.

I believe that I am the luckiest man on the face of the earth. I know that these words have been uttered before by other men and women who have faced a similar fight during their lives. While I cannot speak for them and their reasons for saying it, I know in my case that I didn’t really start to appreciate the life I was living until I was told by various doctors that I was dying. I began to see what the truly important things in my life were. Although my appreciation of all the gifts in my life is still a work in progress, and I am sure that I will continue to make plenty of mistakes, rest assured, I am an apt pupil who still has a lifetime worth of lessons to learn.

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This is a story that I used to tell my sixth and seventh graders towards the end of the school year in June when Star tests were over and I had nothing left to teach them grade level, math curriculum-wise. As evidenced by this tale of my past, I sought to further their educations in a markedly different way than most normal teachers.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Good morning, everyone. Good morning, Mr. Picetti.

What would you guys say if I said that I was going to tell you a story today? Would you be cool with that? Yay! Woo hoo! Is this going to be on the test? (Seriously, I heard that comment).

All right, settle down. All you have to do is listen and enjoy.

Many years ago, when I was a younger man in my early twenties, I lived in the city of San Francisco. I earned my living at a small company named Continental Glass and although I would eventually make my employment at the store in the City’s Mission District, for two months during my probationary training period, I commuted across the Bay Bridge every day to the Oakland shop. Even though my commute was in the reverse direction (more folks were driving into the City from Oaktown in the morning than the converse), it still, for lack of a better word, sucked.

After weeks of enduring butt-numbing (he he) traffic jams, I began to actively seek out alternative methods of getting myself to work other than driving solo. Buses were out of the question (too many transfers), BART was out, too (not close enough to my ending destination), as was a Star Trek transporter device (come man, it hasn’t even been invented yet). (He, he. I don’t get it; what does he mean? Shut up, dude).

The only slightly viable option was to carpool and even that was tenuous at best considering I didn’t personally know anyone who lived in The City AND worked in Oakland. I was about to abandon all hope for a shared commute and access to the two or more person carpool lane when I happened upon an interesting article in the SF Bay Guardian newspaper which described an innovative rideshare/carpool service. Apparently, folks who wanted a ride to a particular city would gather and line up at a certain location in town and people going to that city would drive by and pick them up and off they would go. I found the address of the Oakland-bound pick-up gathering spot and decided to give it a try the following morning.

When I drove up to the meeting place that next morning, it became abundantly clear to me that I wasn’t the only person who read the article because not only was there a long line of ride seekers,there was an equally lengthy line of ride providers, as well. The smile on my face grew larger as my two-door Buick Regal and I inched towards the front of the line of eager ride-sharers.

My car hadn’t been in park for more than two seconds when my right-hand side door was swung open by my soon-to-be passenger. Dressed in filthy blue jeans and a stained, thread-bare white t-shirt, my new commute buddy appeared to have misplaced his shaving razor a few weeks ago. His face and hands were as dirty as his clothes and his hair was oily looking and uncombed. (Eww). Simply put, he was a police sketch come to life.

He paused for a second as he entered the car. Without a word, he leaned down, grabbed and, with considerable effort, hoisted an enormous green duffel bag up and casually tossed it onto the backseat of my car. The bag landed with a dull thud on the faux-leather seat as the passenger door slammed closed. His first words to me were, “Come on, man, let’s go.”

Without a second thought, I began to drive down the street towards the freeway on-ramp. I stole a sideways glance at my co-pilot and I decided not to judge him until I got to know him. I figured the best way to get to know someone is to speak with them so I asked him his name. A terse and raspy, “It’s none of your business,” was all I received from him. (Wow).

Okay, I thought to myself, maybe he’s not the most social guy in the world. Perhaps I could ask him something about his job. The response to my what do you do for a living query: “It’s none of your business.” (So uncool). I agree, so uncool, but what could I do. If he doesn’t want me to know his business, who am I to force him to talk about it.

By now, I could see the Bay Bridge traffic looming before me so I took a peek into my rearview mirror in order to make the move to the diamond/carpool lane. As my gaze was about to revert back to the front of the car, I thought I spied something in the backseat moving. No way, I thought to myself, nothing’s moving back there. By the time I had convinced myself that all was well and all I had to do was confirm as much by looking in the mirror again, I saw something inside the bag move. (Eww, creepy). Nervously I asked my passenger, you know, that’s a pretty massive bag you’ve got back there. What’s in it? His response was a cold and emotionless, “It’s none of your business.” (Oh my).

I maneuvered my car into the uncrowded carpool lane and for the first time, I began to worry a bit about my immediate future. As I drove along, I considered taking a different tact with this guy. In my most pathetic and shaky sounding voice (which wasn’t an act, btw), I pleaded with my commuting partner to be reasonable and tell me what the heck was in that huge, body-sized duffel bag. As if on cue, the bag began to move and tremble more than it had the first two times. I begged him to tell me what was in it. He turned and faced me and through gritted teeth, “It’s none of your business.” (No way, Mr. P, please stop).

I drove the next few miles on the bridge in absolute, terrified silence. As I took the first possible exit that I could off of the freeway, I made the conscious¬† decision to no longer be scared of this guy. I told him, no, I screamed at him, that since I was driving and therefore responsible for both the passengers and contents in the vehicle if I was to be pulled over by the cops, I demand to know what the hell is in that bag. Honest to goodness, the bag shook and convulsed so much, it fell off the backseat and onto the floor. (Oh my god. Gasp). In a voice that matched the volume and intensity of my last verbal barrage, my passenger said, “It’s none of your business!”

Well, that was all I could take. I slammed on the brakes in the middle of the street and told him to get out of my car. As the car door opened, I gave him a huge shove and he tumbled out onto the pavement. (Yay). I jumped on the accelerator and sped away from him. The end.

(Pause for about thirty seconds of processing time).

What about the bag, Mr. P?

What about the bag, it was still in the backseat.

What was in the bag, Mr. P?

What do you mean, what was in the bag, kids?

WHAT WAS IN THE BAG, MR. P?

It’s none of your business.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

They were so mad after I told them that story but I guarantee you that they all tried to tell someone else that story later on. That’s what happened to me. And likely you, too.

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What follows is a copy of an email that I sent out to every staff member at our school. The actual email is written in an italicized font while my personal commentary/contextual clarifications will appear as normal text.

To Last Evening's Holiday Party Attendees-

On behalf of Emma and myself, I feel obligated to extend my most sincere and robust apologies to anyone who had the pleasure of receiving a parting gift of a curiously Japanese nature in their purses last evening.

So, here’s the set-up. This past Friday evening, our home played host to our school’s annual holiday staff party. In addition to the usual food and beverages (the food was catered by Buca di Beppo), anyone that wanted to, participated in the annual White Elephant gift exchange. In regards to those aforementioned Japanese flavored parting gifts, well, just keep reading.

Apparently, Fehmeen and Melissa C thought it would be humorous to disperse the contents of my received White Elephant gift (minus the Humping Dog, of course; that one's a keeper, fa sho) to several purses located in the master bedroom of our home.

All right, all right, I suppose I should start with the obvious: the humping dog. The White Elephant gift that I opened was a canvas bag chock full of about ten random, colorful, inexpensive, and frankly, quite odd little products that were apparently purchased at a Japanese 99 cent store. (How did I arrive at that conclusion? Well, considering that all writing on the packaging was in Japanese, I just took a wild guess. Plus I confirmed it with the purchaser of the gift). Of those ten items in my bag, the only one that had any English on it was the one that read “Humping Love Dog” across the bottom of the package. When I opened the package and removed the actual item, it revealed itself to be a tiny plastic dog with a USB connection attached to the crotchal region. I’ll give you one guess as to what happens when you place the device into your computer. (There was NO way I was letting this prize go).

Emma and I are very sorry if our Mama's/wife's actions have caused you any consternation and worry about your own actions last evening (namely wondering how in the heck did this whatever the heck this thing is end up in here).

It wasn’t that kind of party where people wake up the next morning with a hazy memory of events that transpired the evening before. I mainly included the line in my email for comedic effect.

We assure you that the appropriate consequences are being put into action even now as you read this.

Those consequences are the email and this posting.

Sincerely,

Jason and The Bug

Seriously though, thank you to everyone that came to and enjoyed the party last night. I personally had a great time sharing our new home with you.

Here comes my true intentions for the post and the email.

And in regards to the surprise gifts several of you went home with, you all know how much of a straight arrow Fehmeen is. When I saw her and Melissa rolling around the bedroom floor laughing hysterically as they placed the swag in your purses, it made my soul smile.

Considering the titanic undertaking of almost single-handedly raising a child and care-taking for an increasingly dependent husband, Fehmeen deserves to laugh and smile and goof around as much as, if not more than, anyone. For all this amazing woman does for me and The Bug, from feeding us, to dressing us, to grooming us, and loving us unconditionally, I absolutely revel in the moments where she lets her guard down and acts like someone her own age. As I mentioned in the actual email, seeing her this way makes my soul smile.

Thanks again.

Jason

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I have been receiving Medical Qi Gong therapy (pronounced chee-gong) from Christina twice a week for the past two months. Of all the treatments and modalities I’ve been getting to treat my ALS symptoms and causes, I absolutely believe that my work with Christina is providing me the most benefit. Our sessions help me not only physically but spiritually, psychologically, and emotionally as well.

A typical hours worth of treatment involves me laying face-up on a massage table and Christina working with my Qi (life force) energy. My earliest visits were spent with her trying to clear the channels in my body (there were a lot of blockages, apparently) that were not allowing the Qi to freely flow as it should. Once the channels were more or less cleared of obstruction, Christina focused her attention on getting my body accustomed to receiving the energy once again.

By all accounts, the results have been incredible. For months, I was unable to open my fingers from a closed fist, claw-like position but under Christina’s learned and skillful care, I am now able to hold open and spread the fingers on both of my hands. She also helped me deal with some severe pain that I had been experiencing in my hip so much so that at the end of the session, it literally felt like I could dance.

Even though we were making progress, Christina felt that it wasn’t proceeding rapidly enough. Being a results oriented person and a reflective teacher (that’s the best kind, so says this former teacher), she felt it was time for us to change our program a bit and step our game. After pondering the options between sessions, Christina informed me (she actually asked me, but I think it makes for a better narrative to say she flat out told me) that I was going to be taking a way more active role in our meetings. She suggested I wear comfortable clothing the next time I come in because I was going to be actually practicing and performing Qi Gong moves (and just lying there receiving the treatment).

When I first began seeing her as a therapist, I was having a difficult time moving my body and limbs due to muscle spasticity and stiffness. With her therapy and by consistently practicing several exercises she had taught me, I am way more limber and ambulatory than I was before I became her patient/client. What Christina was asking me to do now was the next step on my journey to get the energy flowing through my body more actively and purposefully.

Now, before I continue on, I feel that I need to clarify something. It’s this whole energy idea. I don’t think that I have ever actually felt the energy flowing through my body. Don’t get me wrong, it’s not like I doubt it’s presence, it’s just that I’ve never seen it or felt it, that’s all. I’m a believer but…

In our first meeting, Christina began teaching me some Qi Gong fundamentals, namely the proper standing position. I don’t feel like going into the details right now, but I must say that I could comfortably stand in the position indefinitely. During our second session, Christina instructed me to get into standing position and to mentally focus all of my energy down to my feet as if to anchor them in the ground I was standing on. She then proceeded to lean on me until her entire body weight was pushing against me. To my amazement (and her expectation), I didn’t budge an inch. I was blown away and giddy with excitement.

The next morning I was at home in my bedroom about to walk down the hallway to the kitchen when I realized that I was having a difficult time moving because my feet felt heavy. Instead of resigning myself to the notion that today was going to be a bad walking day, I thought about my experience with Christina the day before. If I was able to focus my energy to my feet to make me unmovable, why couldn’t I move the energy from my feet to an area, say, like my heart and then try walking. It was worth a shot. I closed my eyes and concentrated really hard on moving the energy from my feet to my heart. I opened my eyes and began walking down the hall.

It was amazing. I went from the feeling of being stuck in cement to walking down the hallway in literally five seconds. Being somewhat superstitious, I told no one of my experience. Over the next several days, I practiced my newfound technique with equally impressive results. And now I am telling anyone who wants to listen to me (or read my words).

I have in no way become a master at manipulating my own energy, I love it when the abstract becomes reality.

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