New Super Powers

Since we are currently smack dab in the middle of superhero season in the movie theaters (X-Men: First Class, Green Lantern, and Thor) and in the news (Peter Parker was recently killed off in Marvel Comics’ Ultimate Spiderman latest issue), I thought that this would be the perfect opportunity to share with you some of my newly acquired super powers of the past three weeks.

• The (near) inability to balance myself while seated due to ever-weakening trunk muscles. This phenomenon is most noticeable while sitting on the toilet. Thank goodness there’s a wall on my left hand side in the bathroom.
• Off the charts levels of regularity. Existing on a liquid diet means increased movements of the bowels. I have most definitely shed the label of One Dump Chump as of late.
• A new and exciting way to save a little bit for later. Somehow, someway, I created a silver dollar pancake sized globule of phlegm and managed to get it stuck to the roof of my mouth. If you think that’s disgusting, you should have seen it when Fehmeen scraped that bad boy out.

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Unexpected Plot Twists

As the number of days of my living with (a diagnosed case of) ALS eclipses the 1300 mark, I find myself in the perpetual state of being both amused and annoyed by what this P.O.S. disease has done to my body.  While a majority of my symptoms — like the inability to walk, talk, eat, and even move — are straight out of the motor neuron disease handbook, these ones that I experience on a daily basis are not in any Idiot’s Guide to Terminal Illnesses that I’ve ever seen.

I’m pretty sure I have the world’s most sensitive legs.  Basically, anything below my waist seems to operate on a hair trigger.  If someone casually pats my thigh, my knee and foot react accordingly.  To the moon, Alice!  Good luck to whoever gets the happy task of washing my feet each morning.

Every evening at approximately eight o’clock the toes on my right foot get unbelievably and unbearably itchy.  It’s uncanny how it only happens at that particular time.  The itch subsides once Fehmeen scratches it for a minute, thank goodness (for Fehmeen).

The middle finger of my left hand has a propensity to curl up like a seasoned curly fry if left to its own devices.  Only the left hand.  I am constantly asking people to straighten it out for me.  I suppose that this symptom is karmic payback for all those one fingered peace signs I used to flip in my capricious youth.

Lately I have been having some very specific food cravings for things I haven’t eaten in years.  A baloney sandwich on white bread.  A slice of vegetarian pizza from Round Table.  Two Giants Dogs from AT & T Park.  Is there any way we can get this stuff in Boost (Ensure) form?

My yawns have backed off a little from the full body dry heaves they used to be.  On second thought, maybe they are still pretty crazy but I’ve just gotten accustomed to them.  Whatever the case, once I experience a yawn, my lips and eyes are due to be wiped, my fingers should be unfurled, and my mouth could use a good suctioning.

The funny thing about sneezing when you are a quadriplegic like me is that you are essentially a passenger on a roller coaster of unknown duration.  It could be once or twice around the track but then again it could go on and on and on for almost ten minutes before it lets up.  In those extreme cases, a fresh box of tissues and a whole lot of patience is advised.  In the end, my mouth will be requiring a good suctioning.

I get so much suctioning to alleviate the saliva buildup in my pie hole that I am seriously considering changing my middle name from John to DeVilbiss after the company that makes the machine I use.

Once I finish eye gazing for the night, I typically lean back in my recliner with the BiPap strapped onto my face to watch a little tv.  The only problem is that the minute my head goes back, my eyelids begin to shut very much like those dolls whose eyes close when you put them in a supine position.  If I request to be placed in a non-reclining posture, it’s only about five minutes to suction time.  And nobody is overly jazzed about that.  So I usually choose to just listen to our favorite shows.

Last on my list is I wasn’t exactly prepared for the high number of people who have seen me in all my glory these past three plus years.  By my count, there has been at least twelve people who have seen my birthday suit so far.  I guess I’ve overcome my shyness.

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Scratch That Itch

If I was asked to compile a list of the most frustrating aspects about having ALS,  you might think that not being able to walk or talk or eat by myself or even stand up when I pee would all be vying for the top spot.  You can bet your arse that each of those annoying can’t-do-any-mores all crack the top ten but they don’t quite win Worst in Show.   No,  my friends,  that honor is reserved for the current bane of my existence: The Unscratchable Itch.

It doesn’t really matter where that itch is,  they are all out of reach when your fingers and arms are just several inches  south of non-functional.   Even when happenstance lands the occasional itch within a fingernail’s width of scratching, the muscles in my hands lack the strength and fortitude to be truly effective.  More often than I would prefer to admit,  I am forced to put on my most pathetic face in order to beg my compassionate,  benevolent,  and extremely beautiful wife Fehmeen to help her poor husband out with a few seconds of scratching.

But that’s not the worst of it.

At least once a day,  I will receive a signal in my brain that I am about to get an unbelievably unshakable itch somewhere on my feet.   If relief in the form of vigorous scratching isn’t immediately administered,  that itch magically transforms into a brought on by a little silver-and-orange-test-your-reflexes-type-of-hammer twitches.   Seriously! The spasms and the kicking lasts until I am distracted by something else — usually a sugary snack or a change of channel on our LG flat screen.   But based on the lack of early warning coupled with the severity of the magnitude on my personal richter scale,  that is why The Itch is numero uno on my list.

Now I toss it to you,  my living with ALS siblings-in-arms, what is YOUR unscratchable itch?

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Information Overload

The warm spray of the hand-held shower nozzle washes across my back. My thigh muscles clench tightly as the soapy loofah brushes over them. White knuckles recede as my death-grip on the silver grab-bar becomes tenuous thanks to the sudsy build-up between my fingers. The water in my eyes burns and stings. My right eyebrow has an itch that won’t quit. On the tip of my nose, an agonizing drop of water.

What I wouldn’t do for functioning arms, hands, and fingers.

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A Weighty Matter

One of the first things they tell you (over and over again) when you catch ALS is not to lose any weight. They want you to maintain as much of your poundage as possible because once it’s gone, it’s hard to get back. I must have royally pissed them off when I dropped a quick fifteen right out of the gate in the three months between my first and second clinic visits thanks to a no dairy, no wheat, no fruit, no sugar, no carbs, organic meat and vegetable only diet that I was on at the time. Truth be told, I was tippin’ the toledos at about a buck-ninety in those days so the el bees that were lost as a result of spending so much time and money shopping at Whole Paycheck were worth every dire warning and stern reprimand I received.

Once I came to my senses and began eating food for the taste again, my weight plateaued at one seventy-five for the next six month interval. While that was good news in and of itself, it was becoming readily apparent to those around me that I was struggling mightily with feeding myself. Despite my family’s valiant effort to stuff my pie-hole with yummy and carby foodstuffs, I still managed to lose ten pounds by my next clinic visit. This time, in addition to the usual choral arrangement of “Don’t Lose Weight” (sung to the tune of “Three Blind Mice”), they added an extra verse of “Feed Ing Tube” to the already catchy song. We vowed to redouble our efforts at feeding my face and we got the hell outta Dodge for the next four and a half months.

By my next appointment, we at Team ALS Boy felt quite confident that I had not only maintained but actually gained weight. Our optimism eroded the instant we saw the readout on the scale: 152.3. I was down another ten pounds. Despite my protests, there was no recount, no reweigh. I made my concession speech and agreed to get a feeding tube installed at my earliest convenience. They were happy with my decision to go through with the procedure, of course, but I knew in my rather protruding gut that theirs was an ill-gotten victory.

Fast forward five days later to my thrice yearly breathing test at Kaiser. As per usual, protocol dictated a trip to the scale prior to the scheduled examination. Because I was having an impossible time climbing up on the scale under my own power, an alternative method of weight measurement was decided upon. Here are the results:

ALS Boy + power chair ………. 535 lbs

—— MINUS ——

power chair by itself ………….. 372 lbs

—— EQUALS ——

ALS Boy & gut by themselves .. 163 lbs

Either I gained ten pounds in 120 hours or I should have pushed harder for a recount in the clinic that day. Now that I have a modicum of vindication weight-wise, I still want to get the feeding tube. I have big plans for that thing; just don’t tell Fehmeen.

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TMI

A brief list of a few things you probably didn’t want to know about me:

Drooling. These days, I drool more than a teething infant. It’s as if somebody turned on a faucet in my mouth whenever I lean my head forward. When Emma sees it happen she says “Uh oh” and grabs a napkin to clean me up.

Yawns. First, my mouth opens wide. Then, my entire upper body begins to shake as my arms criss-cross into an X across my chest. For the next two seconds, an unearthly howl emanates from the depths of my being. Finally, my jaw snaps shut with an audible “pop” as the river of drool slowly oozes down my chin.

Sneezes. As the summer turns into fall and winter, my already violent and painful sneezes become even more of a spectator sport with fist-sized snot bubbles coming out of my nostrils. I hope you have a tissue or five.

Flatulence. Once a proud first-chair trumpet player, I have been reduced to humming a few measly notes on the lowly recorder.

Constipation. Panic sets in after three days of inactivity. Thankfully, those episodes have been few and far between.

In the Shower. Whenever warm water hits the right side of my body, the heel of my right foot begins to rise from the ground. As the Borg said, “Resistance is futile.”

Orifice Grooming. Never in all my years have my ears and nostrils been so clean. The secret to my success: A never-ending supply of Q-Tips and an OCD groomer with a never give up attitude.

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Breathing by the Numbers

As odd as it may sound, I truly believe that I have been (relatively) fortunate with my ALS symptoms so far. Sure, walking and talking have become a whole lot more challenging and tenuous for me, and activities such as eating, shaving, showering, getting dressed, and stair climbing have become de facto group activities but at least my breathing hasn’t been compromised. Or so I thought.

Every three months or so, I take a trip up to the ALS Clinic at UCSF for a half day visit with nearly a dozen different clinicians and caregivers who specialize in varying aspects of the symptom management of the disease. One of those specialists, a respiratory therapist, administers a test that measures one’s FVC (Forced Vital Capacity) or lung strength. The test, in which I empty the air from my lungs (after a deep inhale) into a mouthpiece attached to a machine, yielded a somewhat less than desirable result: a 68%. Compared to the 90% I blew the last time I took the test, the 68% marked a precipitous decline (although I suspect Fehmeen was not-so-secretly disappointed that I went from an A- to a D+).

All in attendance, from me and my entourage to the various clinicians, were quite non-plussed about the numbers. In fact, we were so confused by the results that we decided to take the test again. And again. And again. And with each time I took the test, my numbers became more dismal than the one before. In fact, the only thing more dismaying than the numbers themselves was the accelerated future the results portended: a nearer now than ever future of Bi-Pap breathing devices and surgically implanted PEG feeding tubes.

Considering that I haven’t experienced any shortness of breath episodes nor have I noticed any appreciable difference in my ability to breathe, I decided to take the FVC values under advisement. Why should I allow a name, or in this case, a number, dictate how I’m supposed to feel on a day by day or minute by minute basis? Besides, I had a secret weapon hidden away in my arsenal: I was going to have the test readministered, along with several additional ones, at the pulmonary labs at my local Kaiser Permanente offices.

Yesterday’s appointment marked the fourth occasion in the past year-plus that I had occupied the wooden swivel chair inside the rectangular glass booth built for one. As Kim, the technician, led me through the battery of tests, she shared with me the results as quickly as the computer would allow her. My score on the FVC test was a 78%, a 4% improvement over the 74% I blew on my first test there over a year ago.

Now, I share with you this information not to show up the fine folks at UCSF in any conceivable way, shape, or form. In fact, quite the contrary is true. This Friday, I will be meeting with a doctor to discuss my Bi-Pap options. I am also giving more than cursory contemplation to the idea of a PEG; both ideas and measures that will most likely figure into my future.

The main reason I bring up my two competing FVC results is because I felt overwhelmingly compelled to share my “good” news. It has been my personal experience in living with ALS these past twenty months that 99.99% of the news I have received in regards to the disease and it’s effect on me has been categorized as bad news so you’ll have to excuse me as I take a quick celebratory victory lap (in my wheelchair, of course). I won’t go as far as ordering the bumper sticker that reads, “I have ALS and my FVC is 78%”, because 78% is only a C+. Maybe when I get back into the A range…

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The Perfect Shitstorm

I have always been a guy who appreciates routine. I’m not as OCD as I used to be like the years when I parked my truck in the same space at work every day. Or when I took a picture down the same hallway every school day at the exact same time over a three year period. And let’s pretend that I didn’t buy a turkey sandwich on wheat bread every work day for at least five years from a place called the Sandwich Shop on Mission Street when I worked in San Francisco, okay? To say that I am intimately acquainted with the concept of routine would be an understatement of truly epic proportions.

Over the past year, however, my relationship with routine has changed somewhat considering the post-ALS diagnosis world in which I now reside. As I grow ever more dependent upon the assistance of others for my day to day needs, I have discovered the practicality in letting go of the more, say, idiosyncratic routines that I have long held onto.

In their stead, I have replaced them with more practical, treatment related routines. For example, I see Jen for acupuncture on Mondays, Christina for Qigong on Tuesdays and Fridays, Robin for PT on Wednesdays, and Sarah for nutrition and chiropractic on Saturdays. I even take my clinical trial drug twice a day, every day. It’s a routine that has worked for months on end and it afforded me the sense of an overall feeling of calm during these personally tumultuous times.

Everything was cool until the last two weeks when the metaphorical shit hit the fan.

My acupuncturist took a three week trip to Mexico. I haven’t had a chiro adjustment in two weeks because Sarah spent the holidays with her family in the midwest. I haven’t had PT in a fortnight either because Robin has been out of the office herself, and even if I went there to see someone else, the elevator was being repaired and that would’ve meant climbing the stairs (and I would still be there as I type). Christina suddenly moved back east to be with family. And I ran out of my clinical trial pills so not only have I noticed an up-tick in laughing and crying episodes but I am drooling more than a teething infant.

To make matters worse, over the past few weeks, I have noticed more difficulty in regards to walking, grabbing things with my fingers, and even getting a comfortable night’s sleep. In my head, I have assigned the blame of my diminishing capacities on these various interruptions in services and treatments. To top it off, I’ve been moodier and quicker to anger with family and friends and to be quite honest, I’ve been acting like a whiny little bitch. Oh woe is me.

Well, amidst my little pity party of the past two weeks, a wise and beautiful person (who also happens to be my wife) offered me up two simple words of advice: Buck up. At first I didn’t hear her; I believe that I mumbled something that could have been construed as ‘okay’ and went right about feeling sorry for myself.

It wasn’t until she took it upon herself to send out the necessary emails and make the requisite phone calls to get my spiraling out of control life back on track for me. Her unsolicited actions on my behalf spoke louder and more clearly about bucking up than any inspirational speech or motivational book ever could have.

I realize that there will be days ahead that are more difficult for me than others on this journey through life with ALS. I am so fortunate to have Fehmeen around to help me realize that it’s not the drugs and the treatments that are going to sustain me through the years and, hopefully, decades, but rather my spirit and conviction to fight through any adversity I encounter. Consider this realization my first blush at bucking up.

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The Top Ten Annoying Things About Having ALS

I’m sure that if I wanted to I could stretch this list to, say, infinity, but that would take way too long for you to read and even longer for me to write so for the sake of all involved I will condense my vitriol to a relatively short list of ten things that really annoy me about having ALS. I also wish to issue the following disclaimer: the complaints I have about this disease and how it is currently affecting me are extremely time sensitive. Basically, the things that are bugging me right now most likely won’t bother me six months from now based on what I’ve read about and what I’ve personally experienced already with the progressive nature of Lou Gehrig’s disease.

A’ight. Drum roll, please.

I present to you the top ten annoying things about having ALS.

10) Stairs and curbs. Few things these days are as intimidating to me as a flight of stairs. All I can say is thank God for handrails. Going up stairs is not as problematic for me but going down, man, make sure to pass me by before I begin my descent unless you’ve got some time to kill. Even a curb presents a considerable challenge for my diminished sense of balance. I carry a cane with me everywhere I go so it can provide a tiny sense of stability when I encounter the inevitable curb.

9) Pants pockets. If I am ever in a situation, God forbid, where someone says, “Empty your pockets and do it quickly,” well then, I sincerely hope that that someone has read this list and is able to recall this item because if there was an Olympic event in pocket emptying then I would finish dead last. It has become so difficult to fish my keys out of my right front pocket (due to right hand weakness) that I occasionally have to ask Fehmeen (my wife) to get them for me, after which she threatens to buy me a pink fanny pack. On a more positive and fashion forward note, I now proudly rock a wallet on a chain; function over form for sure.

8) Having to plan for everything. No exaggeration here; when I say everything, I do mean everything. From having my wallet out when I am in line in the store to meticulously contemplating each and every step I take, I feel like an ALS boy scout living by the motto, “be prepared.”

7) Multitasking. Three words apply to this entry: forget about it. And when I say multitasking, I don’t mean driving in a car drinking a latte while illegally violating California’s new hands free law. No, the kind of multitasking I am referring to is of the more basic variety such as walking and talking, moving across a room with a glass of juice in my hand, lifting a car key to the ignition and twisting it, and on and on. I guess what I am trying to get at is that it’s literally one thing at a time for me from now on.

6) Ordering a sandwich at a deli. Take a moment to visualize from beginning to end what you do when you walk into your favorite deli to order your go to sandwich. I used to do that too. Here’s what I do now. This little system was devised after about a half dozen frustrating attempts to get a turkey on sliced sourdough bread with mustard, mayo, lettuce and pickles by speaking it to the sandwich maker. Because my speech is largely inaudible and very un-understandable, I now choose to type in my order into my Palm PDA and hand it over to the person when they say, “May I help you?” As they make my sandwich I have to do item number nine on my list and remove my wallet from my pocket first, remove my debit card from my wallet next, and then prepare myself to sign the slip. After the transaction is done, I do the whole thing in reverse and grab the bag and make my way out the door. Trust me, you do not want to know about the getting the sandwich home and preparing to eat it process. That’s another item on a list for another time.

5) Inappropriate laughing and crying. Believe it or not, this is actually an honest to goodness symptom for those of us lucky enough to have bulbar onset ALS, so much so that I am currently participating in a clinical drug trial at UCSF. The long and short of this particular symptom is that there are times when I have absolutely no control over my ability to stop laughing and/or crying. For example, a few months ago when Emma was a newborn, I was trying to make myself useful by attempting to help Fehmeen to calm Emma down and I could not stop giggling. That did not help the situation at all and I was promptly asked to leave. (I am lucky that both of my ladies are so forgiving and understanding). The crying is just as annoying as well especially when I find myself tearing up and sobbing during a Lifetime movie. Please don’t judge me too harshly, okay?

4) Out of control sneezing. If it is possible to hate and detest a bodily function any more than I despise sneezing these days, I would gladly empty my nearly impossible to get to wallet for you. I have always been a multiple sneezer (not just one sneeze at a time, no, no, at least three to five) but now that I have meager control of my mouth and tongue sneezing has become extremely painful and majorly messy. My sneezes have become so fierce and violent I now have to anchor myself to a solid object and grab as many tissues and napkins as I can. The sheer volume of snot (sorry) that comes out of my nose during these episodes is downright faucet-like. I’m not even going to mention the snot bubbles (can you say golf ball?). If I plan ahead and set up my video camera, I guarantee you I would be the next youtube viral video star.

3) Buttons. Buttons are the bane of my existence. They have been created and given a place on this planet to mock me. No lie but I could probably spend a good ten minutes trying to button up my shirt each day. It has gotten so ridiculous that I now leave my shirts pre-buttoned so all I have to do is slip the shirt over my head and have Fehmeen button the top one for me. Needless to say I have gotten rid of my button fly 501 jeans.

2) Tying my shoes. Another exercise in patience, I could literally spend ten minutes per day per shoe. When we are running short of time I actively seek help with this activity but when I have the quality time to spend doing it, nothing beats the fun of trying to tie your shoes over and over and over again.

1) People that treat me like I am retarded. This one seriously bugs the crap out of me. I realize that I don’t get around that quickly anymore and that I sound different than anyone most people have ever heard in their day to day lives but that doesn’t mean you can bust out your Jump to Conclusions mat and play the let’s talk to this guy really, really slowly so he can understand what I am saying card. This has happened to me several times in the very recent past. The first time was at Safeway when I asked a worker there where the Kool Whip was and he told me aisle five and then offered to show me where that was. I declined his kind offer. By far the worst and most offensive episode happened when I went to a doctor’s office for a laryngoscopy, which is a cool procedure where they stick a camera through your nose and down your throat to check out your vocal cords. There were three doctors in the room with me that day and after the test was done, one of the doctors explained to me in a very, very slow and condescending fashion that even though I may get a device (a palatal lift) that may make my speech more understandable, he felt that I should be aware that due to the progressive nature of ALS that the solution is only temporary. Thanks for the four one one, jackass.

Before I sign off, I do want to say one more thing. Even though I may be complaining about the things that are currently annoying me, I want to make it abundantly clear that I want to continue to do all of these things for as long as possible because that means that I am maintaining some modified degree of independence. I have this mental checklist of tasks I can still do and I fully intend to keep that list at it’s current length.

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So, I Had This Dream This Morning…

So, I had this dream this morning right before I woke up to get up for the day. It happened sometime between the time my wife left for work around 6 am and the time I actually arose from my night’s rest around 7:30 am.

Before I continue on with the dream, allow me to provide you a little back story as to why I was sleeping in on a school day. In the years prior to embarking on my new ALS-induced lifestyle, I was what people referred to as a morning person. I used to spring out of bed minutes before the alarm would ring, all bright-eyed and bushy-tailed, at the groan-inducing time of 5 am. For the past nine years, I arrived at school and entered my classroom at 7 am, at least an hour before the first period bell would ring.

However, this year, when I decided not to go back into the classroom as a teacher, my role at school changed, as well as my morning routine on some days. I have offered my services to the school as a volunteer, doing various and sundry tasks to assist my former colleagues in whatever ways they can think of. This arrangement, while keeping me involved and productive in an environment that I am both comfortable and expert in, accomplishes two ancillary goals: it allows me to choose my own workload and to set my own hours. And today was a textbook example of the latter.

After a summer of late nights and lazy mornings, the start of the school year caught me woefully unprepared in the area of energy management. The toxic combination of waking up early and working too hard and too long (the standard here is relative, mind you), quite frankly, kicked my ass. I made the executive decision, on the way home from my second day of work, to modify my arrival time on the third day until 11 am. This amended eta allowed me to grab a jamba juice and pick up my weeks worth of new comics prior to gracing the hallowed halls of school with my presence.

Back to the dream.

Sometime this morning, a had the most vivid and real-feeling dream that I have had in quite some time. It felt as if I was in first-person and third-person at the same time. To clarify this statement a bit, imagine what it would feel like to watch yourself doing whatever it was you were doing and actually being involved in that activity. I know it sounds weird, but if you can buy into that idea then you have a notion of what the dream felt like.

In my dream I was walking down the street. That’s it. Just walking down the street. I recall sidewalks and trees, friends pulling up in cars and offering me a ride and I would refuse them. I felt my legs moving and my feet grabbing the pavement and propelling me forward. I even felt the wind blow through my hair and cool off my face. It was the most incredible feeling ever; it was as if I was there in the flesh and blood. Not only did I feel all of this, I actually saw it as well. I had a bird’s eye view of the entire scene as it played out. That was a trip as well. I watched every step and every footfall.

The entire experience was invigorating. It was as if I was normal again. How something as simple as walking down the street could fill my soul with so much joy was beyond my comprehension at that time, all I knew was that I never wanted that feeling to end. I’m fortunate enough at this stage in my disease to still have the ability to move around under my own power, albeit with a whole lot of wobbleliness and uncertainty, but I still can. This dream reminded me that the simple act of walking down the street is a gift and a blessing that should be celebrated and savored for a lifetime.

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