Archive for the ‘Symptoms’ Category

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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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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