Not for everyone

In the event that this is your virgin foray into the world that is my blog, be warned and accept my suggestion that you first read my earlier posts when ALS was a mere annoyance to be creatively dealt with, rather than now, as I battle a full blown disease supporting its reputation as a monster among monsters, rendering me this day nearly a quadriplegic. In the event that you are a constant reader, I apologize in advance, not for what I say, but for why it is necessary for me to vomit the bad stuff that is consuming me. If you want to keep your shoes clean, simply step back. If you stay close, and the mire is too thick, hit delete and clean yourself off. If you can take the heat, I number you certainly among the brave, possibly among the foolish, more than likely to be caught in my mental monkey trap.

ALS may be the worst disease in existence. Before I was diagnosed, I might have chosen a dozen diseases more difficult to deal with: cancer, heart disease, AIDS........................all having their own trademark terrors. I can't really speak for them, but I am an expert on the effects of ALS- at least my version. My struggles are vulgar and unique and depressing every single second of my life. At this time I can assure you that God had no hand in my predicament. I am also certain that He plays no part in my survival- unless, of course, I am God or He is me, in which case, He/I is/am my only hope. I have had nothing but time to arrive at this observation. I have no use for literature designed to perpetuate antiquated ideals; I have no interest in divinity. I also refuse to succumb to the concepts of  sin, guilt and judgment, hell and brimstone. If there is a universal energy in existence- and I'm counting on it- it is without form, consciousness or prejudice. In my opinion, my best bet is to refuse to believe in fate, to believe in the power of chance, placebo and personal faith, to grab at the finger holds of resistance and to keep my mental tendrils active in snaring the energy of the universe. 

A day in the life-

Let's begin at night. At 6pm I take 4 pills and a capsule. Something to level my emotions, something to thin my blood and something to ease my spasms. As much as I abhor drugs in general, I find that now I don't cry while watching the evening news and my blood is sufficiently thin to prevent blood clots. The spasm med is, however, crap. The first version made me tired and gave me zits but did nothing to relax my spasming. The pill I got to replace the first did nothing at all, so the doctor advised to double the dosage. In my book zero plus zero is zero. Last night, the new dosage proved my math.

I am slowly losing my physical faculties. I cannot manage any of my own hygiene. I have no grip with my left hand and can only rarely raise it unassisted. My range of movement is so restricted  that I cannot touch my face. My right is still useful enough to type my posts but its range is reduced now to about 16 inches. I lack the strength to squeeze my nose enough to blow. If either arm is tested, the pain is excruciating and lingering. I cannot balance well enough to take even one unassisted step. My big toes do not listen to me. In order to get me in bed, Amy must position a rotation device on the floor, I step on and she turns me, takes my pants down and helps me sit near the pillows. I recline as she lugs my legs around and plops them. I usually roll awkwardly, requiring her to pull me into a better angle. My bed is raised, head and foot. My anxiety subsides. 

I need to blow through the rest of the night in order to prevent repetitive dreams tonight:

In bed, lights out, I usually begin on my left side, positioned entirely by Amy- it is impossible for me to scoot left or right. I sleep with my left arm up, right arm prone, my fingers inserted in the crack between mattresses in order to keep them straight. My legs are crossed and bent to prevent spasms. A pillow is nestled between my legs, another under my right armpit. An hour or two later, my left shoulder and collar bone are on fire from  compression and my left hip is screaming. I can manage to roll onto my back for a short while only to have the compulsion to turn to my right side. I need to wake Amy for help, she gets up, I have to pee, she helps me with that, my hands are claws, fingernails digging into my palms, both arms are bent and paralyzed, she touches me, my entire body locks down  in spasm, I shake uncontrollably, she pleads  with me to relax, she uncurls my hands, an ease washes over me, she helps me to my right  side. Two or three  hours later, the cycle repeats itself. Mornings are the worst. After hours alternating crushing my shoulders, I am not only sore and paralyzed, but tired. I need to get out of bed so I can get some sleep.

Next- reduced respiration, swallowing problems, lead legs, swollen feet and ankles, speech abnormalities................................

A warning- explicit content to come

Be forewarned, this afternoon I plan to expose the truth about what is happening to my body, my mind. This is not to say that I have lied in the past. I have always been truthful, even when I delved into my youth. There is truth and then there is truth. The inclusion of all details, horrendous and other, constitutes the latter. Pain. Abuse. Conflict. Fear. These are the elements of full disclosure best overlooked when telling of a journey. These are the details best left  between the lines. Reality and its release has become essential if I am to continue to cope, to better my condition. I pray it is not entirely at the expense of my readership.

It's about time!

Let me list a few of the things I can't do:

I can't-

Scuba dive

Snow ski

Slalom behind a boat

Spelunk

Play Lacrosse

Play basketball

Play soccer

Type 60 words a minute

Ride a skateboard

Do a back handspring

Juggle

Throw a baseball from 3rd to 1st

Act

Do bills

Balance a checkbook

Shop

Write legibly

Plaster

Don't feel bad, I couldn't do any of these before I got ALS

On a positive note:

I can-

Sit for extended periods of time

Move at 6 mph for 26 miles without breaking a sweat

Choke on demand

Lose a foot race to a snail- which has no feet

Brush my teeth with no hands

Eat with no hands

Drink with no hands

Pet a dog with my mind

Float face down- I used to sink, not an improvement, though

Speak on occasion, but not well

Lock down every muscle in my body- several times a day, more at night

Imitate thumper with either- or both- leg(s)

Cry and suffocate at the same time

Not walk

Not swim

Not jump

Still enjoy life, my family, my friends, sunshine, TV, movies, sex, a paddle fan, my awesome shower, my bidet, a functioning mind, the REAL power of hypnosis, the influence and power of love and empathy that I physically experience every day

As long as I have events I want to stick around for, I will stick around. Just this summer- boys' birthday party, family reunion, Nick and Paige in my back yard, Amy's birthday, our 35th anniversary, Peoria and Tower Park................. I realize that life goes on, with or without me. I'd rather not miss anything. I'm like that.

It's about time!

Back home

We are safely back in Texas. Full frontal posting starting tomorrow.

On leave

Tomorrow morning we begin our trek to Peoria. I'll hope to see people during the week, at Six Strings on Friday in Bloomington- 8:30pm or Rhythm Kitchen Sat. eat and show

For Amy

After my depressing post, followed by a craptastic exposure, I have promised Amy that I would write a post that neither embarrasses nor depresses her, one that wouldn't come close to invading her privacy.


I've put a lot of thought into this,............................ here goes-


Gee, isn't it beautiful outside



































Waddya think?

True humor

My mind loves to peer into dark claustrophobic, terrorizing depths, loaded with loathsome creatures of torturous imagination. Then I splay my feet across the opening and catapult myself back in time and grab up an incident free of the darkness, made up of only sunbeams and situational mayhem. This is one of those.


Keep in mind that I work hard at self deprecation.


This shall be brief.


About 15 years ago we were visiting Las Vegas with my mom and dad. We decided to eat brunch at a now gone buffet at the now gone Maxims near the strip. Maybe more than 15 years ago because I was wearing cut off Osh Gosh. For some reason I have never been able to figure out, I neglected to wear underwear that day. I need to speed through this- we ate well, I sneezed HARD, the bathroom was 50 feet away and it was, well, too late anyway, Amy asked what was wrong, realized, snorted, (she knew I was sans tighty whiteys), my parents were momentarily spared, my left sock was stained, I grabbed my shorts in a bunch and casually sidelong sprinted for the commode while Amy guffawed her way out to the car for supplies, I stripped down in a stall, Amy banged on the door of the -thankfully- vacant restroom, I called her in, she tossed clean clothes over the top of the stall, stifled a laugh and left to talk to my parents, I prayed thanks for clean toilet water, swiped and wiped, dressed, headed out, made it back to the  hotel, burned my clothes and took an hour long shower.


As I said, I work hard at self deprecation. Self defecation, however, comes by  naturally.

The clock is ticking.........................

Everything is on a time line. Rather than in my past when I scheduled my life with the notion that it would go forward in perpetuity, I find myself planning very little, careful to monitor my ambitions for events too far out on the calender. I never before saw my life as a lit fuse. My phone ringer is the theme song for Mission Impossible, more and more apropos as the weeks go by, ironically immediately appropriate as the thing rings at me, just out of reach. Yes, I can, with focus, stand up, but as of yet I'm not going anywhere. I ate sushi last night. I had to be fed by my daughter. I'd hoped to feed myself but the lack of rotation in my wrist and forearm caused me to mash each piece into my mouth with the back of my hand. Much of this messy action would result in a cat parade eating the fish off my shirt. Sarah did a great job inserting the rolls and sashimi but the entire entourage limited my wasabi intake for fear of my death. I can think of worse ways to go (and often do).

On a dark moment. It was a dark and stormy night. Bad thought coupled with bad writing. I don't fear dying, I fear not dying, malfunctioning bit by bit, moving less and less, my speech compromised, eventually eliminated, incontinent, immobile, helpless, lacking the strength to hold the gun, to pull the trigger, caught up in a destiny of nightmares, lying in a metaphorical coffin, buried, a tube offering just enough air to induce constant panic, all the terror of the undead, trapped in a cadaver. I've been trying for over a year now to slam the brakes, to jerk the wheel, to turn off my course, sometimes succeeding in taking out the roadside vegetation, maybe slowing a little. The last six months I haven't been able to drive. This might be a good thing. I could find myself looking for a physical barricade to my psychological road trip to hell. Do I tend to be melodramatic? No. Do I possess an overactive imagination? You tell me.

Lightening up. The stormy night has metamorphosed into a light and sunny dawn. I go dark so I can turn on the incandescent. Don't look to me for your own catharsis. Sometimes I like to write about my youth. Sometimes I like to write about my ALS journey. Sometimes I like to pick at the scabs of my disease. I know I should hope for the best and prepare for the worst, but there is no way to prepare without projecting all the worst case scenarios. I am no Pollyanna. I possess no blinders. I am no fool. I just choose to embrace all my thoughts, all my imagination,  good and bad. I can handle my wasabi, I can handle my demons and I will never handle a gun- just in case you were wondering.

The perks of ALS

If I were bedridden in a hospital I could say that free food was a perk, except that a long time ago, in high school economics I learned there is no  such thing as a free lunch, especially in a hospital. 


Perks. 


I am retired. I can sleep in any day I choose. I still miss building houses, I still miss teaching Taekwondo, I still miss walking, using my hands in a normal way, showering alone, (but not by much), brushing my own teeth, but the perks here involve Amy, and that is all good.


We have ordered a Hoyer lift to get me in and out of the pool.


We have begun the process to get me my own power chair, designed specifically for my needs. My Jazzy, gifted from some wonderful friends, still runs strong and will remain an integral part of my chair family. My new chair has many features covered by Medicare that will help me function better. Unfortunately, a speed upgrade that would allow me to ride alongside Amy on her bike is not one of them. 1,500.00 is  just plain impossible. We broke the bank for an elevator option that raises me 10 inches so I don't have to talk to belt buckles.


We are coming back to Peoria next week. I expect and hope to see everybody who knows I exist. Since I expect and hope to beat ALS, the bar is set high enough that all is worth longing for. I will fill in details later. 


We will be at the Rhythm Kitchen Sat the 26th at 7pm to eat and then to enjoy Nick and Paige and Co. Crash the joint and I will offer free one handed hugs. No cover, kids welcome.

Good morning, I mean

There might be a dozen ways to follow up my last post, depending upon a dozen different post revelation emotions, themselves dependent upon whether my new-found ability continues.

 Let me tell you, ALS ain't got nothing on me! A good moment is singular in nature, a good day is likely an extended elation of that moment, the next morning observes the infancy of a proof, the remaining day reinforces such proof and each day, subsequent, lays meat upon the bones of a reality. I can still stand up under my own power, not with muscle, not with determination, for these prove inadequate, but by releasing tension, letting go of anxiety, drawing down with a deep breath and opening up to an energy I never knew existed, unlabeled and unidentifiable, pure and strange.

I feel lighter of being today, and ALS has, for the time, been relegated to an annoying obscurity. Every new day must be better than  the last and ALS needs to trail behind my state of mind. Since last week I refuse to dwell. Today is the best day in a succession of "bests" and I plan to ride this energy train forever.

To those of you who know me, my recent rants are a departure from anything I've ever held to be true. It's becoming apparent I've been trying to fix myself with standard tools when I should have gone metric. My goal is to make Amy cry- with joy.

OK, OK, OK..........................

I haven't been able to rise unaided- from a chair, a couch, a stool, bed- since November. Many times, Amy falls forward in her effort to pull me up because I not only out weigh her by about 90 lbs. but lack the strength and balance to propel myself vertical. I honestly believe this to be true today. If I put forth an effort equal to my determination- which is boundless- , using all the strength I can muster, I fail miserably. Evey time. I fail without fail. I lack the strength and balance to stand up. That's it. End of story.

Two days ago, Amy took me aside. She educated me in the difference between strength and energy. Indirectly, she introduced me to  Chi. Most everyone has heard of Chi yet very few know what it is, myself included. I dare say most of the population scoffs at the very concept. I saw it as something vague and unsubstantiated, maybe legitimate, maybe not.

Two days ago, Amy sat me down- of course I was already sitting, duh!- and told me I was capable of standing on my own. I balked, but I was soon compelled to listen to her- something I should do a lot more of. (bad grammar, shut up). She made me stare at her. I did. I always do. She's otherworldly. So I stared. She whisked her hands down my sides. She told me to relax, to draw energy from the Earth, to inhale deeply. I drew in and involuntarily yawned. She   told me to stand up. I stood up. Unaided. I stood, balanced and guardedly thrilled. I sat back down, confident, and tried to stand a second time. Using all my strength and determination led only to failure. Amy pointed out that my own energy wasn't enough. We repeated her method and I stood again. That night I stood up over 20 times without assistance. I woke up at 5am and made Amy get up to witness that the previous night had been no fluke. I stood. When we awoke some 4 hours later, I stood. Don't think its easy. In order to stand I must release, I must focus, I must breathe in energy. It is the only way. If I can draw from outside my body to stand up, what else might I accomplish? Might I find energy to beat ALS where my body's strengths fall short? 

So now I focus, I stand. On to my pesky hands , to other small hings, lopping the branches of ALS until the tree is dead, allowing me to uproot and walk away.

Reveal?

I don't apologize for keeping you hanging. Just to substantiate my resolve, this particular post ends now.

Maybe a minor miracle

I've filled hundreds of pages with hope, despair, motivations, interpretations, opinion, lecture, fantasy, irony, determination, fear, insecurity, bravado, sarcasm, history..................to date, over 100,000 words, and yet I have never made a single claim even approaching any improvement in my condition. Until now. 

I would tell you what it is, but I'm too sleepy right now. I'll get back to you soon.

Lest I worried you

Though I only touched upon the surface of my current condition, underlayed with an amalgam of minor offenses, stating the obvious yet glossing over the majority, I cut my post short upon reading its content. In reality, that was not me; I refuse to give my negativity legs- unless, of course, I can use them to get around.


While I'm not a cup half full/half empty proponent I can say a baseball bat to my spine is preferred to a crack to the noggin. I'm trying to say that if I can remain clever through this, sarcastic, stupid and yes, occasionally negative and depressing, that's something, and if I lose the ability to post I will still retain the thoughts, sparing you my pathetic translation in print.

Dealing with discovery

I have yet to find a way to cope with the redundant discovery each morning that I not only have ALS but that its progress is evident and measurable. Prior to recent developments my ability to physically function has been severely limited. Now I am finding those limitations devolving into impossibilities. My communication skills, both oral and inter muscular- brain to speech, brain to voluntary action- are grinding to a halt. My cognitive skills, typical in ALS cases, remain intact. I guess I'm happy with that, though sometimes I might be better off if my senses and cognition were dulled on those "bad" days.

Using visual description, I slump more, my left arm is soft, most muscle tone and definition long gone. My left hand curls up without restraint and the web between my thumb and index  finger is hollow and without muscle or function. My curled fingers constantly sweat because I lack the ability to occasionally separate them. It has, for several months now, been impossible to offer a palm up gesture. If my left forearm were forcibly turned in such a manner I have no doubt the result would be a spiral fracture. I have never broken a bone but if I fell on my left side I am sure my arm would shatter into a million pieces. My right arm is tracking in the footsteps of my left. I  cannot rotate my wrist "palm up" and lack the strength to lift a coffee cup without it listing to the left. As is obvious, I can still pluck at  a keyboard, but I can rarely left click my mouse without right clicking as I lose independent finger function. 


I usually end my posts with a clever notion or upbeat manner. I'll try to do that next time.

 Notice Amy firmly supporting my man boob.

Spasmicity

Spasmicity. This is the proper term for a particular phenomenon found on the road traveled in my ALS  wagon. When spasmicity occurs, say, in my legs, it is impossible for me or anyone else to bend them, to pry them apart or even to move my ankles. There are only two ways to relieve the tension: Ride it out or manually uncurl the fingers on my left hand. Peculiar as it is, this "unclenching" releases stress throughout my entire body. 

Yesterday I received a splint designed to keep my fingers straight. I am still searching for a tongue splint to keep my speech straight.