Archive for October, 2008

The Last Waltz

I took my first piano lesson from Fred Cadiente at ABC Music in San Bruno at the tender young age of six. I had my heart set on playing the guitar but thanks to my being born with small hands, the executive decision was made that I was going to play the piano. Every Tuesday afternoon for the next nine years I learned how to tickle the ivories under the expert tutelage of Fred. I switched to taking lessons from an older woman in Millbrae (whose name at this time eludes me) during my sophomore year in high school. Two years later I began to study under a professionally working pianist named Don Haas but those sessions didn’t last too long mainly due to a distinct lack of discipline and an acute case of high school senioritis on my part.

Although I had wanted to do it sooner, I joined my first rock band sometime during tenth grade at Capuchino High School (yes, you read that correctly and no, I did not attend Mocha Middle School). Mark Nutini, Dan Germano, and I formed the white hot nucleus of a progressive rock band called Skids whose original tunes included The Prophecy of Kid Kinetic and The Wet Diaper Song (I actually have a recording of it). We practiced in my garage and I remember my Mom popping in every rehearsal to deliver us a plate of salami slices, cheese squares and cans of Pepsi.

We added two older and more musically experienced members (Jeff Michelini and Curtis Laiple) when we decided to play in the school’s Band Showcase. With the band name now changed to Pilot, we made a pretty good showing of ourselves in our one and only gig by playing the now classic original Let It Roll and a cover of the Gary Moore cover of the Yardbird’s song called Shapes of Things. (Not only do I have an audio tape of the Showcase, I have a video tape copy (somewhere) as well). Even before I had a chance to wipe the sweat off of my forehead after the show, Pilot disbanded.

Around senior year in high school, I met a singer named Mike Xavier at a midnight showing of the Rocky Horror Picture Show in Belmont. In addition to seeing a ton of punk shows together up on Broadway in San Francisco, we decided to form a Hanoi Rocks meets Dead or Alive glam/techno band called Isabel. We wrote several songs together but ultimately the project never got off the ground.

I reemerged from my musical cocoon during my second year in college at UC Davis when my fraternity brothers and I formed the Sigma Chi Blues Band for the Greek Week Talent Show. We penned at catchy little twelve bar blues ditty called (UCD’s Too Crowded, I’ve Got) The Reg Fee Blues and we performed it to rave reviews. When we were invited to catch lightning in a bottle for a second time during a noontime performance on the Quad, we imploded from the immense pressure (and not to mention a serious lack of talent) and barely made it off the stage. At least I got to realize my dream of driving my car on campus.

The following year I answered an ad seeking a keyboard player in the Davis Emptyprise newspaper and I met Roy Frush. Roy was this amazing drummer from York, Pennsylvania, and together with Mike on guitar (whose girlfriend crafted and sold jewelry from the bones of roadkill she found on the side of the road) and Dale on bass (who we called Stale due to the fact that he was constantly drunk and on painkillers), we formed a band called Film at 11. While our thirty song set list was comprised of mostly 70s and 80s rock and roll covers, my membership in this group was developmentally and musically significant for me for two reasons: one, all the guys in the band were much older than I was and two, they encouraged me to sing lead vocals on several songs (the first one being Touch of Grey by the Grateful Dead). We played several private parties and spent a few hours one Sunday in a video recording studio but our absolute pinnacle as a band came the evening we played this nightclub in Marysville the night after Rick Derringer played there.

After about a year, Roy and I sought greener pastures by joining the latest incarnation of the Sacramento Valley’s preeminent 50s and 60s show band Fast Stops and Car Hops. Together with guitarist extraordinaire Cedar Seegar, versatile vocalist John Dickel, bassist slash curmudgeon Glenn, and the blonde bombshell saxophonist Leslie, we shortened the name to Fast Stops and spent months perfecting our craft in Cedar’s tool shed, also known as the Boogie Shack. A handful of gigs into it, we hit a wall (either Glenn copped an attitude and quit or Leslie decided to bail, I don’t remember which) and Fast Stops was dead.

But not for very long, though. With the addition of Jeff Sears on bass, Bernie on sax, and Pam and Joyce on lead vocals, we arose from the proverbial ashes of despair like a phoenix, this time with a new and improved band moniker, The Sensations. This time around we kicked ass and took names. The Sensations played parties, festivals, nightclubs, and spent some serious time in a recording studio (and, oh yeah, I have copies of those ones). The emotional end for me came when I chose to establish a post-college life in the Bay Area instead of commuting to Winters every weekend as I had done for the past six months since graduation.

I don’t remember a whole lot of details about my next band, Letch Luthor and the Fiends. The bass player was an alcoholic, the singer ended up doing time for drug trafficking, and our only gig was when we opened up for the Mermen at a warehouse party in Oakland. The bassist for the Mermen did tell us that we did an impressive rendition of Statesboro Blues, though. If I was to sum up my experience in this band, it would be like this: Casey Jones didn’t have nothing on us and our train.

About a year later, I answered another ad, this time in the SF Bay Guardian, and joined a raucous blues band called Bad Attitude. Comprised almost entirely of San Francisco cab drivers, I provided the group a much needed jolt of youthful enthusiasm. We holed up in a massive practice studio complex on Third Street in the City and developed a ten song set of original numbers (of course I have recordings) but internal band politics and an unmotivated and, quite frankly, bad attitude ultimately did us in as a band.

I quickly rebounded from the disappointment of yet another failed rock band when I joined the mighty Bay Area Band. Guitarist Bob Noto, bassist Dale Hitchcock, and drummer (and my Dad) John Picetti had been playing together for almost a decade and a half prior to my arrival. They took the time to groom me and train me and teach me hundreds of songs that ranged from Frank Sinatra to Donna Summer to ZZ Top. We gigged everywhere (and even got paid) and I really blossomed into a fairly competent singing keyboardist. Not only was I having a blast playing interesting and challenging music, I had the unique opportunity to rock out with my Dad on a weekly basis.

Through it all, I would unabashedly say that having the chance to play music with my Dad for over ten years in the Bay Area Band has been the most rewarding aspect of my musical journey through life so far. After all, he was the guy who played old Louis Prima records for me when I was a kid. He was the one who made me count out weird ass time signatures to random jazz records before I was allowed to watch my Saturday morning cartoons. And even now, he is the one person that I can count on to take a quick trip up to the Haight and visit Amoeba Records any day of the week. It is because of my Dad that I have an innate love of music. There are few things more satisfying to me than experiencing music in all of its various forms. Whether it’s on cd, vinyl, cassette, mp3 or even performed live, music is a fundamental part of who I am and who I will always be.

When I started having problems with my voice last year, I remember asking Bob to sing a few of my songs for me during the Father Daughter Dance last October. Try as I might, I just couldn’t hit those high notes any more. I also noticed that my right hand wasn’t playing runs and notes as quickly either. Although I didn’t realize or anticipate it, that Father Daughter Dance was the last gig I will (most likely) ever play. My fingers and voice just don’t work the way that I would like them to any longer.

Am I sad about this? Of course I am. It seems like ALS has taken away nearly everything I loved to do in the short span of less than a year. But rather than be depressed about what I can’t change, I prefer to look at my loss of musical ability a bit differently. The way I see it, I consider myself extremely fortunate to have had the ability to make music for thirty-three years. And as you can see from the preceding thirteen hundred or so words, I attempted to make the most of my talent. I learned from every musical experience I have ever had and I’ve had the privilege and honor of playing with some of the most musically gifted and incredible people over the years. Even though I can no longer actively participate in its creation, I can still listen to it and appreciate it and enjoy it.

Music will always be a major part of my life and if it works out that way, I hope it will be a part of Emma’s life, too. She already has a few cds of her own and lists Led Zeppelin and Elvis Presley lullabies as her favorite recordings. Emma has already seen a live band play, too. This past October 17, 2008, Fehmeen and I took Emma to her first Father Daughter Dance. She lasted about an hour and she got to see her Grumpa play the drums with the Bay Area Band. Even though I wished I was still playing, there is no feeling sweeter than dancing with my beautiful daughter.


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Patients Like Me. I recently became a member of patientslikeme.com. It is an amazingly hopeful and helpful site and the people there have been very welcoming to me. It is a place where you can compare treatments and symptoms from a massive database or join in a discussion about anything at their forum section. I am so glad I found them; it is so nice to know that I’m not alone in this fight.

A Geek’s Delight. As you all know, Wednesdays are new comic book day. This Wednesday, not only did Secret Invasion #7 come out, so did Final Crisis #4. The only problem I had was that I didn’t get to read them because Invincible, DMZ, Amazing Spiderman, Runaways, Criminal, and Unknown Soldier came out too. My oh my, some weeks it’s good to be a geek.

DVR You Embarrassed For Me? Although I am reticent to admit this, I have been tuning in, and sort of enjoying, Kath and Kim. Granted, it’s on right after The Office but you have to admit, it does have it’s funny moments (interspersed between the sheer moronic ones). What sold me on the show last night was the gay bar scene; I was literally lol. Another show I’m digging on is Life on Mars. A cool premise, an excellent cast, and groovy period pieces (both in set design and characterization) make this cop drama a must-see on my list. I knew it was a winner five minutes into it when a usually chilly to new shows Fehmeen said, “This is pretty good.” Lastly, as pathetic as it seems, I find myself caring about The Hills again. Sure, nothing ever happens in the actual episode that we haven’t seen before in the preview. And the music that they play is way, way too obvious for the situation that just happened on screen (for example, when Stephanie asked Audrina for permission to go to dinner with Doug, Lauren’s ex, the song they played had cryptic lyrics along the lines of, “Don’t do it, wouldn’t be a good idea”). Listen next time, it’s pretty damn funny. I knew that I had drunk the kool-aid when, just yesterday, in the waiting room at QiGong, I thumbed through the latest issue of Star magazine and read that Lauren had been hooking up with Audrina’s Justin Bobby. The kicker was that I felt compelled to inform my Dad and Christina about it. It’s sad, I know; pity me.

Saturday Afternoon Fever. The ingredients for a fun-filled Saturday afternoon: ALS Boy blogs, the Bug naps, and Fehmeen does online traffic school. Guess who’s having the most fun?

Million Dollar Idea. Someone should open up a Hooters style Middle Eastern food restaurant called Kaboobs.

Nap Time in the Vale. We went to lunch the other day at Gumba’s in Sunnyvale. After Fehmeen parked the CRV in a lot behind the restaurant, she left me and the Bug in the car in order to investigate whether or not the rear entrance was handicap accessible for me and my wheelchair. Before she could return, I happened to glance at the backseat of the car that was parked next to us and I saw a pillow and a hand. From my vantage point, a disembodied hand and a red, corduroy pillow was all I could see and it sort of disturbed me a bit. When Fehmeen returned a moment later from her reconnaissance mission, I hastily pointed out to her my discovery. She uncharacteristically shrugged off my finding as folly and went about the business of preparing me and the Bug for the trip across the parking lot. At precisely the moment she completed her task of assembling my chair and Emma’s pram, we saw the rear door open on the car next to us. Apparently, naptime was over. An older gentleman exited the vehicle and headed towards the restaurant. Fehmeen and I both began to giggle and chuckle for we knew exactly who this man was. He was a waiter that we had had many times at the very restaurant we were about to enter. Small world, huh? I imagine that back seat is even smaller.

You’ve Got Mail. Dee sent me this item (via the USPS). It was a clipping of a letter to the sports editor of the SF Chronicle that read as such: “Deja vu. I’m watching Phillies versus Brewers on Saturday. Crucial game. Enter Salomon Torres. He immediately gives up three straight hits to load the bases with no outs. Up to the plate steps Pedro Feliz. He swings at first pitch and hits into a double play. I think I’ve seen this all before.” Long suffering Giants fans will know exactly what’s going on here.

As the Bug Turns. Well, the Bug has mastered rolling over to such a degree that it is now her primary mode of transportation. Two days ago she managed to roll herself underneath a chair. It’s only a matter of time until she puts one and one together and starts to crawl. Emma is also the proud owner of her very own Bumbo seat. Basically, it’s a form fitting seat that helps a baby sit upright without falling. She’s usually content in it for about ten, fifteen minutes, tops. Then it’s on to bigger and better things. I’ll post some pictures next go around.

Countdown to San Carlos. 15 days. Purging and packing begins this Sunday. Yea!

B of the P. All right, kiddees, thanks for reading this week. I’m off to UCSF this afternoon for my every three month clinic visit with Dr Lomen-Hoerth. While it does make for a long day, every one there is so incredibly nice and thoroughly professional and helpful, I actually enjoy my time there. I hope you have a great weekend and I’ll try to get more stories out next week. I have about twelve different drafts in various stages of completion so chances are at least one of them will get done soon. Now, to sign off as I always do: late.

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Who’s Crying Now

I attended my first “real” rock concert back in 1981 when I was twelve years old. I saw Journey at the Cow Palace in San Francisco. At the time of it’s release, Journey’s Escape album helped catapult the band to unprecedented heights in popularity. To this day, I personally credit the music on that record with rejuvenating my stagnating and waning interest in playing the piano thanks to that fateful day when I, a nervous, nerdy, and emotionally high-strung seventh grader, played Who’s Crying Now in front of a crowd of popular and swooning female classmates. It was at that exact moment I knew I wanted to be a musician.

I attended that show with my Dad and his buddy Stubie, who, as a music critic for a local newspaper, got us into the cavernous building and in some swanky seats (by Cow Palace standards) in press row right above the jam-packed arena floor. I recall at the time feeling downright giddy, not to see the spectacle of Neal Schon’s sweat-glistened ‘fro or to hear Steve Perry’s soaring vocal song stylings, but rather to score my first ever rock concert t-shirt. At the time, anyone who was somebody wore their newly purchased t-shirt to school the day after the show as both a badge of honor and a potential conversation starter.

While the actual events of that show and its ensuing purported after-effects have since faded from the gray matter of my brain, I had occasion to harken back to that by-gone era in my personal history for the first time in a long time just last evening as I fell asleep. I was utilizing a technique taught to me by my Medical QiGong therapist, Christina, for clearing out the energy blockages in my neck and back. I had been practicing this mental exercise for about a week with a relatively minor degree of success; I’d feel some relief at the time but it was nothing that I would write in a blog about. That is, until last night.

I work with Christina twice a week in order to help get the Qi (energy) flowing through my body in a more normal fashion. The way I perceive things, my nervous system is out of whack and this therapy is instrumental in stimulating the cells that have been left out of the loop, so to speak. In my mind, the more regular the flow of my life force surging through the channels and meridians of my body, the healthier I could become. If I were to practice and potentially master this exercise, all within the friendly confines of my own home, I could take a more proactive role in securing a healthier me for the future.

According to Christina, one of the major energy flow issues I am having occurs in the area of my neck, shoulders, and spine. Early into one session last week, she asked me to hypothesize as to why the energy would be blocked up there in that particular spot. A half hour later, she asked me to reveal my answer and I told her that I thought the reason my Qi was coagulating in that particular region of my body was because of fear. A fear of failure, a fear of confrontation, a fear of rejection, a fear of this disease, and a fear of death were among the list of fears that I felt had taken root at the specific junction in my body.

She then taught me a way in which I could eradicate those fears and promote the flow of Qi in that critical area of my body. (Christina, if you are reading this and I am doing a poor job of regurgitating the ideas and concepts you taught me, I apologize. You are an excellent teacher and I am a poor summarizer). When you are relaxing, find a place in that region that is hurting you or giving you some cause for concern. When you find that spot, focus all of your mental energy on that spot and search your mind and memory for some reason or event in your life that could be the source of that pain or concern. Once you hone in on a reason, hold fast to that thought, take a deep breath and hold the air in your lungs for as long as you can, and then exhale, releasing your breath and your burden and fear along with it.

When she provided me with some guided practice (I told you she was an excellent teacher) during that session, I seemed to take to the idea, in both theory and practice, fairly easily. I experienced a small feeling of spiritual and physical relief when I let go of my breath each time we practiced. Not only was my mind clear of that specific element of fear, my body reaped the benefits as well; I felt a small surge of energy flow through that area.

The problems arose when I attempted to emulate my newfound meditation practices at home, alone. Try as I might, I could never seem to approach the level of release and satisfaction of my earliest attempts. A week worth of practice yielded less than desirable results; a ton of dredged up bad memories and an unequal return on relief. Rather than push myself to the point of frustration, I decided to lay low and take a break for a couple of days.

Two days later, I got back on the proverbial horse. I had no intention of trying again when I exhaustedly crawled into bed at 8:15 pm. (I know that’s pathetic but I figured it best to rack out than nod my head on the couch, psuedo-watching the latest episode of the Hills on DVR). As I lay on my back in the relative darkness (Emma-tv is always on; that’s our black and white video baby monitor, btw), I noticed a persistent, dull ache on the right side of my neck. I concentrated and managed to focus my entire consciousness on that one spot.

I then allowed my mind to search for some event or series of events that I could associate with this pain. Thoughts came and went but nothing seemed to match the intensity of the hurt I was feeling. But rather than assign a convenient thought to the ache and by doing so, force some connection, I instead chose to dig deeper. My mind wandered for minutes until the only thing I could think of was the act of crying. I thought to myself, what does crying have to do with this, and in lieu of an answer, I gave myself permission to continue probing.

Hmm, crying. I know I used to cry a lot earlier on in my fight with this disease. But now I’m on a drug that curbs that urge a bit. And it’s not even like I’m sad any more about this. So that’s not it. What is it? Man, I remember crying so damn hard the day that I got my diagnosis. It was pouring down rain that day and my tears were as plentiful as the precipitation, my plaintive sobs as loud as the thunder. I remember feeling like it had been a really long time since I had cried that hard. You know, I used to be a real cry baby when I was a kid. I cried about everything. Missed a word on my spelling test, I’d cry. Didn’t get a hit in baseball, I’d cry. Had a disagreement on the playground with a classmate, I’d cry. But when I tried to think of a time when I truly let it all out emotionally between my youth and my diagnosis, I drew a blank. Sure, I had cried plenty of times between now and then, but had I really cried from the depths of my soul?

And that’s when I knew I had found the fear in my mind that matched the pain on my body. It was so plain to see. In order to shake the reputation as a crier, I simply stopped crying. I don’t remember deciding when to put that plan into action, but if my past history is any indication, it was obvious that I did. I shut myself down emotionally for over twenty-five years and the result of that action had manifested itself as a dull, aching pain on the right side of my neck.

I held on to that thought as I drew the biggest breath that I could muster into my lungs. I continued to focus on my crying as I felt my lungs get smaller and smaller. At the precise moment that I couldn’t hold my breath any longer, I loudly and forcefully exhaled and, in doing so, I jettisoned my lifelong fear of crying into the darkness of my bedroom and the universe.

As I lay on my bed, arms outstretched, I realized that not only was the pain on my neck gone, so was the fear of crying I had been thinking about for the past few minutes. At that moment, I felt more calm than I had in years. Also gone was the twitching in my arms and upper back that I have endured since this nightmare called ALS began for me last year. In ridding myself of the fear I felt inside for so long, I had successfully cleared the blockage in my neck and now my precious life force could freely course through my body the way it was supposed to. It felt beyond incredible.

An utter sense of stillness engulfed me as I drifted off to sleep for the night. When I awoke this morning, I discovered myself singing the lyrics to a song from my distant past: “One love feeds the fire. One heart burns desire. I wonder, who’s crying now.”

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Some of you old timers may recognize the title of this post as a blast from your Mr P the math teacher past. Think back to the days when your son or daughter was in my sixth or seventh grade math class and every Monday I would send them home with an assignment sheet for the week. Somewhere on that sheet of white paper would be the url for my school website and somewhere on that site would be my “weekly” column of personal minutia and miscellaneous bits and pieces of “interesting” information.

Well, I have decided to bring Rants and Raves back. I wanted to produce something that I didn’t have to work on for hours at a time that still conveyed what life is like for yours truly, the Verbose ALS Boy. I will endeavor to get this thing out on a regular basis but if I fall short of my weekly goal, please forgive me. To quote the great mockumentary filmmaker Martin DeBergi, “Enough of my yakking. Whadya say? Let’s boogie.”

If my DVR Could Talk. Gilmore Girls remains the must-see tv show in the Picetti household. For months I avoided it but then I got drawn in like a moth to a flame. As I write this, Rory is dating Logan, Lorelai and Luke have reconciled, and Lorelai just told her mother Emily to shut up. Don’t judge me too harshly here but I cannot wait to see what happens tonight. Fehmeen and I also go a bit nutty for The Office, too. And not just the new episodes but the reruns that appear on Tuesdays on TBS as well. We tried our best to like the new 90210, but between the uber-skinny girls and the hideous writing, this show no longer enjoys its series-record status around these parts.

Falling from Grace. I am a huge fan of Entourage but the past few seasons in no way, shape, or form, compare to the earlier ones. It’s just not that funny any more. Granted, there are hilarious moments, and even sidesplitting episodes (Joshua Tree), but the show doesn’t have that same vibe as it once did. I’ll continue watching, but still.

Living at the Movies. I saw Burn After Reading a few weeks ago and it was just all right. I felt that it was marketed more as a comedy than what it actually was. The Cohen Bros movies are hit and mostly miss for me. While I loved Raising Arizona and O Brother, Where Art Thou, I was unmoved by No Country For Old Men and I absolutely loathed Fargo. I also saw Nick and Norah’s Infinite Playlist this past weekend. Although I enjoyed the film quite a bit, it had some odd and predictable characters and situations. My sister-in-law, Farah, said it made her feel old (and she’s young) and I found the music not to my tastes (I guess I’m getting old, too). My grades: Burn : C , Nick and Norah : B+

From My Ears to Yours. The new Oasis cd is a bit more mellow than previous recordings but it is still pretty cool. I really had a chance to listen to it during my Monday acupuncture session (Jen lets me bring my own tunes so I don’t have to suffer through the typical cosmic hippie music). I am also digging the new (2007) Shooter Jennings record as well. It took me a few listens, and it’s not as memorable as his first two discs, but it definitely has grown on me. I am also really loving the theme song to the HBO show True Blood entitled “Bad Things”. It is on my shortlist to download from iTunes along with REO Speedwagon and pre-Escape Journey.

As the Bug Turns. Lots of Emma related updates this week. The six and a half month old Emmabug now has three teeth sprouting (two tops and one bottom) from her gums. She long ago mastered the skill of rolling over to her belly from her back, and finally, now she is starting to get the hang of the reverse maneuver. Last butt (intentional) not least, Emma took her first poop in the bath tub. Good job, stinky monkey. (So says the guy that didn’t have to deal with it. Thank you for cleaning it up, babe.)

ALS-o-Meter. Other than the hot dog lodged in my esophagus incident on Sunday and the I tried to kill a cockroach but missed and I ended up falling flat on my back and my wife refused to help me up because the roach was between her and me incident on Saturday night, there were no significant setbacks or issues this week. (For the record, I was not injured or hurt as a result of my fall). My limited walking has been done with confidence and my speech has been relatively clear for people to understand. I had a week of positive and productive appointments and I am in first place in both of my fantasy football leagues (for the moment). Adjusted for ALS quality of life score: 8.5 out of 10.

Quote of the Week. Fehmeen to me, in the wake of the hot dog incident. “Just when you start to establish a routine and you feel pretty good about things, ALS reminds you that it is always there.”

Countdown to San Carlos. 25 days.

Bottom of the Post (aka B of the P). I just want to take this opportunity to say thank you to everyone who reads my blog. Writing is one of the few creative things that my body still allows me to do so I appreciate your support and your feedback. To quote myself from a bygone era, I will conclude this column with one word: Late.

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Last year, when Fehmeen was about five months pregnant with Emma, I vividly recall wandering around downtown Burlingame, window shopping all the cute baby clothes stores. The storefronts were awash with the latest Fall fashions and I remember entering one particular store and perusing their infant Halloween costume collection. We saw a fluffy duck costume, an adorable octopus costume, a spicy tamale costume and even a “mustarded” hot dog costume. We debated purchasing one of them at the time and saving it for the next year but, in the end, we chose to leave the store empty-handed.

Fast-forward a year to last week when Fehmeen and I revisited the discussion about Emma’s Halloween costume. She wanted to see our sixth month old in an octopus outfit but I really wanted to see the Bug in a hot dog suit. We researched online a bit, found a few possible contenders, but we wanted to hit the stores in person and see what was available there, to avoid the hassle of shipping and to eliminate the possibility of our costume being back-ordered. With our baby’s October 31st outfit acquisition plan more or less set in stone, we moved on with our lives.

This past Sunday, Fehmeen, Emma, and I attended the San Carlos Art and Wine Festival with my Mom and Dad, my Aunt Nancy and Uncle Mike, and my cousin Adam and his fiance, Sarah. We parked at Nancy and Mike’s house around 1 pm and a majority of our group walked the three blocks to the street fair. (Emma and I rolled; she in her stroller, me in my wheelchair). The sun beat down relentlessly on Laurel Avenue as we joined the shuffling masses ambling past enthusiastic vendors peddling their wares.

After about an hour of gazing at booths teeming with oil paintings, children’s puzzles, tie-dyed shirts, hemp purses, and new-age music cds, we decided it was time to eat. I hadn’t eaten since early morning so I enthusiastically began to devour the hot dog that was given to me. With my particular brand of ALS, one of the issues I have when eating is that my tongue has a difficult time moving food from one side of my mouth to the other while chewing. Although not a common occurence, I have found that this particular situation usually presents itself when the morsel I am chewing is on the large side.

There was the perfect storm brewing that day in San Carlos, the City of Good Living. Because I was practically famished, because my tongue doesn’t work properly, and because I was taking recklessly large, competitive eating sized bites of my hot dog, I knew, in an internal dialogue going on in my head as it was happening kind of way, that I was in some serious trouble the second I tried to swallow. The bite wouldn’t go down. I attempted to swallow again but the piece of hot dog in my throat was not budging. I signaled to Fehmeen that I was in distress and my Uncle Mike came up behind me and attempted the Heimlich maneuver on me, with no success.

As coincidence would have it, we chose to sit near the San Carlos Fire Department’s booth. After the valiant attempt to dislodge the offending foodstuff from my throat had failed, I suggested to my family by grunting and haphazardly pointing in the direction of the fire truck that we should recruit some reinforcements to aid in my rapidly escalating situation. When the cavalry arrived, they asked me if I could breathe (yes), if I have any health issues (well, I have ALS), if I have any other health issues (are you freaking kidding me), and if I was on any medication (yes, lots). Then they called for an ambulance.

Apparently, because I was still able to draw air into my lungs, there was nothing they could do for me right then and there. To me, that was not really the solution to my problem that I was looking for so I decided to try and resolve it myself by forcefully trying to swallow the hot dog down. Every time I would attempt to swallow, though, my throat would make this loud, scary, gurgling sound and all the saliva and mucus that usually goes down remained in my mouth. A gullet full of snot and spit, coupled with the ever-increasing anxiety I was feeling because of my inability to swallow, I began gagging, rather loudly and frequently, as I tried to expel the nastiness from my mouth.

Somewhere around the fourth or fifth futile attempt at self-clearing my heavily congested throat, the paramedics arrived. They asked the same questions and drew the same conclusions that the previous rescue party came up with: because this guy is able to breathe and nothing is in his lungs, there is really little we can do to give him some relief. I don’t know if I was being unreasonable here, but I was kind of hoping that someone could maybe help me remove the ginormous chunk of hot dog that had taken residence in my neck.

I swallowed, gurgled, and gagged a few more times until someone suggested an ambulance trip to the hospital might be a good idea. I took them up on their offer. It was the longest and slowest ride of my life. Under the speed limit, no blaring sirens, and stopping at every light was the order of the day. We even stopped for a goddamn train. I violently gagged my disapproval.

When we arrived at the Redwood City Kaiser Emergency Room, I was wheeled in to station number six where we waited for about fifteen minutes for a nurse to inform us that a doctor would be with us soon. He confirmed that I was still breathing, hooked me up to the blood pressure machine, and provided me with this suction device to help me out with my saliva and mucus problem. About forty-five minutes later, we were seen by the doctor who, surprise, surprise, confirmed my breathing and informed us that the hot dog was stuck in my esophagus (and not my windpipe, thus explaining my uncanny ability to continue breathing). She had ordered a barium swallow study in radiology to determine if an ENT or a GI doctor would be removing the blockage. She informed us that the study would be happening soon.

An hour of swallowing/gurgling/gagging later, I remained on the gurney in station six, still awaiting my turn in the x-ray room. Just as I was about to eclipse the breaking point on my personal frustrating yet there ain’t a damn thing you can do about on several levels scale, I swallowed sans distressing gurgling noises. I tried it again and the result was the same; a clean and unblocked swallow, not the usual grilled hot dog taste that I had been experiencing for the past three hours.

I told Fehmeen what had happened and she made me swallow about a dozen more times for good measure. When the doctor reappeared, we decided to go through with the barium study anyway, just to make sure that things were in good working order (or at least as good as they can be for ALS Boy). I will spare you most of the details from my radiology experience suffice to say that, in my limited experience, most non-ALS specialist doctors don’t know jack shit about ALS and what it does to it’s sufferers. After the smoke cleared and the requisite apologies were extended, it would probably be safe to assume that I won’t be attending their department’s holiday party this year.

The last thing to do, prior to being discharged, was to review the findings of the study. The doctor told us that the liquid tended to pool up in my mouth before trickling down my throat, a finding consistent with bulbar onset ALS. After I vowed to take smaller bites of my food from now on, we were free to leave and continue on with our regularly scheduled day.

As we drove back to San Carlos, Fehmeen asked me how I was feeling. I told her that I was hungry but I would never again eat another hot dog as long as I lived. In fact, there was no way Emma was going to be dressing up as a hot dog for Halloween, either. Even though the costume was my idea, I officially pulled the suggestion off the table. Sorry, Emmabug, but the wounds are still too fresh for your dad. For the record, Emma will be dressed like a pea in a pod for Halloween this year. That is unless I gag on a pea between now and then.

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Mr P Says YOU Rock

I am a man of many routines. When I get dressed, I put on my left sock followed by my left shoe and then my right sock followed by my right shoe. When I eat at a Chili’s restaurant, I always order the chicken fajita pita with french fries. And on Sundays, between the months of September and January, you will find me on my couch in front of my television watching NFL football from 9 am until 8 pm. Sure, I get up for bathroom breaks and snack bowl refills but you can bet this month’s cable bill that I never stray too far away from the flickering screen for fear of missing an all important touchdown.

But that all changed this past Sunday, October 5, 2008. This Sunday was so extraordinary, so unique and incredible, so out of my routine, that my regularly scheduled Fall/Winter Sundays will forever be judged as inferior in comparison. And why stop at Sundays? I can think of only a handful of days, the birth of my daughter, Emma, being one, and my wedding days (see a previous post to clarify the plurality of the word days) with Fehmeen being the others, that can equitably compare to the beauty and sanctity of this day and what it meant to me and my family.

I wish to take this opportunity to thank everyone who attended the Mr P, You Rock event, either in person or in spirit, for coming together and showing your support of me, Fehmeen, and Emma. We are truly humbled and moved by your generosity and kindness. Having been a part of this community for the past nine years, I have witnessed your limitless support, in a financial and a volunteer capacity, of our school district and it’s various programs firsthand. I stood in awe of your commitment to your children’s education then in much the same way I sit (ha, ha, wheelchair humor) in awe of your support of me now. As I said on Sunday afternoon, thank you for being my miracle.

I also wish to publicly thank the following people for their role in putting this celebration together in my honor. A thousand thank yous for organizing and pulling off the most amazing father/daughter half birthday party in the history of festive gatherings go to: Barbara P, Tom P, Audrey P, and Nancy B; Sonoo I and Ellora I; Beth H and Webb H; Lee Ann Y; Kelly M and Steven M; Elli H; Shirley W; Dawn S; Trish G; Susanna T and Nicole S; Lucia T; Alexander M; Maggie W; Parker K; Janet G; Lucia T and Susanna S from La Bottega; Susanna T from Smith Barney; Karen F and Rebecca J from Coldwell Banker; Bob G from Bayporte Financial; Martha from Martha’s Bakery; Sharat I and John O; Nicholas O, Jonathan O, and Catherine O; and Ursula L.

I also would like to thank Gloria P for everything she has done for me and Fehmeen. She has been by our side from the beginning of this journey and it was through her tireless efforts that Sunday (and everything leading up to Sunday) was such a resounding success. Her philanthropic spirit and generous nature is an inspiration to us all.

Thank you all again for such an incredible Sunday. We all had an amazing time visiting with everyone. Emma had such a great time smiling at everyone at the party, she fell asleep at 7 pm that night and didn’t wake up until 630 am the next morning. What a party animal! Take care and see you soon.

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Clinical Trial and Error

Near the top of the never-ending list of infuriating and frustrating things about having ALS is that there isn’t anything you can do about it. There is no cure, no magic elixir you can take to make it go away, or no hope of ever hearing the phrase uttered by your favorite neurologist, ‘Take two and call me in the morning.’ Hell, doctors don’t even know how ALS starts in someone much less how to eradicate it. There is only one FDA approved drug out there, Rilutek, and according to the doctors I’ve spoken with, that drug only prolongs a patient’s life for an additional three to six months.

So, what’s a guy to do? Well, if it was up to me, and in this case I believe it is, I would leave no stone unturned in regards to trying any and all possible remedies, running the gamut from western medicine to alternative and traditional Chinese medicine. At this stage in the game, I am currently participating in at least four different therapy sessions a week, from acupuncture to physical therapy to chiropractic kinesiology to medical chi gong therapy.

As far as the western medicine model is concerned, the name of the game is symptom management. And to that end, that model has, so far, served me well. My doctors made sure that I had in my possession, when I needed it, a cane, a wheelchair, an assistive speech device, and plenty of rilutek. I was even offered the opportunity to volunteer myself for a clinical drug trial at the ALS Clinic at UCSF. After checking my social calendar for the coming three months and after consulting with my handlers and my Vincent Chase-like entourage, I decided to become a guinea pig for the cause.

I have what’s referred to as bulbar onset AlS; the kind that affects the throat and tongue. Two of the symptoms of this peculiar onset are uncontrollable laughing and crying. I can vividly recall royally pissing off Fehmeen around the time of Emma’s arrival home because I could not stop laughing as the baby screamed when Fehmeen tried to change her diaper. I also remember bawling, ahem, like a baby, at last year’s graduation ceremony and not being able to do a damn thing to stop it.

The major goal of this particular clinical drug trial is to test and see if the drug, a mixture of quinidine and dextromethorphan, actually decreases or eliminates the laughing and crying episodes. After a rigorous screening process, Do you laugh and/or cry uncontrably? Well, yes, I do. Great, you’re in. , I had to report to my patient liaison, the lovely and talented Claudia. Her office was located in a separate building on the UCSF campus than the ALS Clinic I usually attended so going there the first time was kind of like discovering a bonus track on a cd; more tuneage for your music-buying dollar.

I filled out several questionaires (Question 1. Do you laugh uncontrollably? Question 2. Do you cry uncontrollably? and on and on), took a two hour intelligence test (Being a teacher, I quite enjoyed this one. I especially liked having four minutes to write down as many words that begin with the letter S as I could),
had to pee in a cup (When your hands don’t work as well as they used to, this task becomes more of a challenge, let me tell you), took a blood test (I never used to look when they extracted the blood from my arm but now I quite enjoy the process), and I took an EKG test (1 handheld EKG device + 8 electrode stickers = 15 minutes of motionless fun).

The last step in the process was to get the neurological once over from my neurologist Dr. Catherine Lomen-Hoerth and I was good to go. Claudia handed me a blister pack full of pills with the instructions to take one pill twice a day. She also gave me a diary, in which I was to record daily notes of how many laughing and crying episodes I experienced while on the drug. With the goods in my hand, I then committed to returning in about three weeks with a completed diary and three pill-less blister packs and I said goodbye.

An interesting thing about participating in a clinical drug trial is that there is no guarantee that you are even getting the actual drug at all. In this particular trial, I had a 33% of receiving the full-strength pill, a 33% chance of receiving the half-strength, and a 33% chance of receiving the placebo. Solely based on my own personal observations during the three months I was on the drug, I am certain that I received the half-strength version because, while my laughing and crying spells certainly diminished a bit, they did not lessen to the degree that I perceived a full-strength dose should have.

At the end of the trial last week, I returned to Claudia’s office and repeated the same battery of tests and exams. I improved my performance on the two hour memory test, I made another mess out while valiantly attempting to pee in a cup, and I learned that neurologists don’t really get my attempts at humor. As was my option from the beginning, I chose to continue taking the drug off-label, this time with the guarantee that I was getting the full-strength version. It’s only been about a week since I began but I have noticed a sizable difference in my ability to control my laughing and crying. Who knows, maybe it’s going to work; I’m just glad that I tried.

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F as in Flower

Have you ever ordered an item on the phone or spoken to a customer service rep about something and you got to the point in the conversation where you had to tell them your name? In my wife’s case, 999 times out of 1000, the dialogue unfolds like this: First name, please? It’s Fehmeen. Um, could you spell that? Okay, it’s F as in flower, E, H, M as in man, E, E, N as in Nancy. Even though I’ve heard it a thousand times, this exchange never fails to crack me up because she repeats that F as in flower mantra every single time it happens in the same calm, clear, patient and precise manner as if it were her first time saying it.

The aforementioned story exemplifies the character of my wife in an unbelievably accurate way. Being the primary caregiver for a pair of dependents, one an infant, Emma, and the other, an adult, yours truly, ALS Boy, Fehmeen is the textbook definition of patient. Not only does this superwoman feed, dress, change, play with, nurture, and love our six-month old daughter, she does so while catering to my ever-increasing and somewhat neurotic and OCD-laden needs. Fehmeen is so busy and focused when she arrives home from work each day taking care of us two munhooses that she rarely has the simple pleasure of tasting, let alone enjoying, her food. She has prioritized the quality of our lives above the quality of her own and for those ultimate acts of self-sacrifice, Emma and I are extremely fortunate and eternally grateful.

When we met by the copy machine in the teacher’s lounge at school about four and a half years ago, I was in a decrepit state of social disrepair. I routinely wore tapered jeans and work shirts (with other people’s names on them). I lived in relative squalor in a tiny yet overcrowded one bedroom pit of an apartment that was so filthy and disgusting that I had refused visitors for years. My lifestyle was so routine-oriented that when I would go to La Salsa every Friday night to order the same thing I always ordered on Friday night, the workers called me “Siempre lo mismo.”

But that all began to change that fateful, windy Saturday when we were both working in our classrooms at school and Fehmeen asked me to join her outside to correct papers and the minute I sat down, a huge gust of wind blew in and I spent the next fifteen minutes gathering up several class sets of Problems of the Weeks that had scattered on the ground. From that point, I took her to several movies that she said she enjoyed but later admitted that she hated. We even attended a musical in SF that she referred to as “horrific”. (I can’t blame her for that one; the second act totally sucked). She even upgraded my wardrobe from lonely bachelor circa 1987 to American Eagle jeans and short sleeve collared shirt wearing man of the current decade.

We soon became inseparable. I could not get enough of her. Not only was she beautiful and exotic, she was engaging to speak with, intelligent and thoughtful on all topics, and she made me feel special, like I was the only one in the world that existed. She loved teaching as much as I did and she was extremely good at it. We constantly bounced ideas off each other as we logged countless hours in cafes and coffee shops working and preparing for school.

As the months turned into a year, we began discussing marriage. I was forbidden from proposing in a restaurant, at a ballgame, on a beach, or in front of any family members so I had to really dig deep to come up with a worthy and memorable marriage proposal. I placed the ring inside of the piano that I owned and I begged her to play Mary Had a Little Lamb, a song that I had taught her to play. When she got to the high note of the song, the pressed key made no sound. When I opened up the piano to investigate, I pulled out the ring from it’s hiding place between the hammer and the string and I popped the question.

We were married in three separate wedding ceremonies over a three week span in June and July of 2006. First up was the civil ceremony at the rotunda of the City Hall building in San Francisco. With the guest list restricted to only our parents and us, this was the ceremony that made our union legal and official. I recall Fehmeen and I acting nervous and giddy and silly when the Justice of the peace was performing her officiant duties. The Nikkah, a traditional Muslim ceremony, came next. An intimate gathering of about a hundred family members attended this joyous occasion, and never in my life had I seen my wife look more stunning and gorgeous. That is until the day of the American ceremony arrived, and the memory of how angelic and beautiful she looked that hot July day still takes my breath away. I can still vividly recall conversations we had that day as if they occurred yesterday.

When we got married and we arrived at the part in our third ceremony where we recited our vows, you know the for better or for worse, in sickness and in health part, well, I envisioned at the time that we would have decades worth of the better and healthy times before the worse and sickness times reared their heads. Some people would consider our situation unlucky and on the surface, I believe that to be an accurate assessment. But for the sake of my personal sanity, I choose to characterize my plight in a more favorable light.

In the lottery of life, I hit all my numbers when I met Fehmeen. I have never met a more determined, practical, courageous, and inspiring woman in my life. Babe, you and Emma are the reason I get out of bed each morning to face an increasingly challenging day. But with you by my side, I know deep down inside that I will surpass all expectations for this disease and survive for decades and beyond. If you ever feel down and sad and it appears that the entire world is collapsing around you, please remember that I love you and I appreciate you in ways I could never adequately express. I could never survive this journey without you. I love you the most in this world.

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