Cruise two

Every morning we had room service, including a custom smoothie made specifically for me. Our Filipino room attendant was great. He first misunderstood our request for a commode chair and brought us one of those things that you place on the toilet seat to raise it up to ADA compliant height. It slid around and would have proved disastrous had I tried to sit on it. We explained that it was not what we needed, detailing as best we could the concept of a commode chair, to which he responded excitedly "with the hole in the bottom! ".

We found what we needed upon returning to our room later that day. It even had wheels!

Okay. So it was high enough that when I sat on it my feet dangled. The back of my legs compressed under the weight and hurt like hell. The seat was a full foot over the maw of the toilet. I had to prop my feet on my wheelchair to ease the pain. As an added bonus, the commode chair and the toilet did not line up. This proved more of a problem for Amy than for myself. Consequently, we used the chair for its designed purpose only once.

At home we have a commode chair in our shower. It has no wheels and is the perfect height for its customized job. It is now a shower chair. We don't need it for our toilet, which is ADA compliant and has a bidet seat.

We used the wheeled contraption in the shower on the boat. Since my wheelchair can't get wet, we substituted it for an upside down garbage can with a towel draped over to pad my heels. If you ask why we didn't use the fold down shower seat you must be forgetting the important difference between the two appliances. I take my hygiene VERY seriously. So does Amy.

I promise to get out of the bathroom with my next post.

Cruise one

Cruise. Thank you all for making this a reality. Despite obvious challenges, we took full advantage of everything the ship had to offer, of course considering my limitations.

The service, especially for my particular needs, was no less than spectacular. Our stateroom, located at the front of the ship on deck twelve, boasted a twenty foot wide, floor to ceiling array of panoramic glass panels tilted thirty degrees, top out, offering an unequaled view of the Gulf, eighty feet below and stretching to the horizon.

The bathroom smelled like oceanic fish and used diaper flotsam, but after two days the odor kinda grew on you as familiarity crept in. I venture to say that our activity never made it worse. I suspect any masking of dead fish and spoilt diapers is an improvement no matter the vehicle.

The scent never wafted from the toilet area.

Note to ship designer : never install a grab bar behind a tankless, wall mounted toilet. I now sport a permanent depression below my shoulder blades and an annoying tendency to hunch forward and stare at my junk.

Now that I've managed to put visions of (not) sugar plums in your heads, (or did I?), I will continue after Christmas.

Prelude to our adventure

Before I share the details of our cruise, I offer a tidbit on health in general and Diabetes in particular.

This realization is both tragic and informative, as it touches not only on the present calamities inherent within our medical community, but the misguided inferences evolved from generalities accompanying diagnosis.

The requisite dietary change demanded of ALS sufferers is contrary to the health of the patient and in no way defines any benefit, either by structure or content. No nutritional paradigm is offered other than to limit protein consumption. The primary task of the program is to put on weight and keep it on. Any kind of poundage at any cost. This plan, coupled with less mobility and less exercise, (a natural assumption upon the dim diagnosis we all receive), is the perfect recipe for diabetics. Apparently, the doctors have conversed and concluded that the tradeoff is ultimately beneficial to the patient. As a result, the incidence of diabetes in ALS sufferers is significantly higher than in the general populace.

I was never diabetic pre-ALS. I was never obese. I was always physically active. Six months after my diagnosis I became diabetic. It all makes sense now. I made an effort to gain weight. I topped out at 225 pounds in November of 2011, having gained 25 pounds, a delight to my Peoria doctors. Of course, it sucked, but I was convinced that a fat ALSer is a healthy ALSer no matter the cost. After all, since ALS would strip weight from my body as it inevitably killed me, more unhealthy flab would take longer to consume, thus giving me more time to flail (that's a joke) in my increasingly useless shell.

My sugar was elevated so I started taking Metformin. I kept most of the weight on because I was told to. Upon moving to Dallas and enlisting new doctors, I was again informed that a fat ALSer made for a happy neurologist. For two years I managed to tip their scale at around  210 pounds.

A year ago, after two years of clinic, after two years of trials, after two years of pointless encounters with people of hopeless expression.... I quit going. I told them to call me if they stumbled across anything constructive. So far, no calls.

Okay, I'm getting typically far too long winded.

It turns out that Metformin has been eating a hole in my gut the whole time. Two months ago my GP switched my medication to Junuvia, the worst shit money can buy. I took it for two weeks and then told Amy that I was through with it. I was never diabetic until the doctors told me I was. They were dead wrong. If anything, they moldered my brain into believing something just to fit their preconceived notions.

I wonder what other notions they have designed for their patients?

Since dumping all diabetes medicine, my blood sugar readings have been the best in three years. Figure that. Thursday I tell my doctors. They won't be happy and I love that.

By the way, I'm rolling around at 170 pounds without a gut ache for the first time since arriving in Dallas.

Don't believe everything you hear from your doctor, your priest or your congressman. None of them are immune to standardized assumption.

Amy said I only took Junuvia twice. I believe her. It seemed like two weeks. I'm also fairly certain I've misspelled the product, illustrating my disdain and punctuating my apathy.

Gratitude

In less than a week Amy and I set off for Galveston and board the Royal Carri-bean ship "Navigator of the Seas", setting "sail" for Cozumel, Grand Caymans and Jamaica. The cruise is considered an ALS excursion. Exactly what that means is yet to be learned. I'm extremely appreciative of all who contributed to our fundraiser, effectively making this trip a reality.

I'm also in awe when I think of how brave Amy is as she not only cares for me singlehandedly every day but manages to find adventure for us on a regular basis while tirelessly researching alternative remedies for my condition. She both literally and figuratively lifts me up. She is stronger than anyone I know. I regret every time I give her shit.

Thanksgiving was great. Intimate. The Evans family celebrated in El Dorado, Arkansas this year. Home was where we stayed. Joining us were Rachel, Nick and Paige. As a surprise of epic proportions, Mary, Aggie and Albert drove from Peoria and ate Turkey with us. I'm really lucky.

If the stars properly align I will continue to post while on the ship.

Do you realize that my family (my kids) have drastically altered their lives just to be near me? Do you realize that Sarah and Tim have taken us into their home? It all amazes me. I have no right to be crotchety.

Ya know what?

It's about time I wrote some truth.

All my life I felt invincible. I wasn't afraid of anything. This notion was always backed up by my antics. I skydived from 14,000 feet several times. I bungie jumped Spiderman Style over a rock laden Illinois River shore. I cliff jumped 46 feet into a small pond on a hillside in Oahu. I rafted the Royal Gorge. I took my three young children far, far down the Current River without help. The fact that I didn't hesitate to subject my kids to my foolishness speaks reams for my character.

I believe that all changed on March 15, 2011. I was convinced I had met my Kryptonite. For the first year I tanked. By the time I celebrated the first anniversary of my diagnosis I was three months bound to a wheelchair. Ever since I have been digging in my heels as ALS drags me down the hardscrabble hill.

I've come to realize this :

I'm afraid of not seeing Rachel get married, have kids. Ditto Nick. I'm afraid of Asa not remembering me. I'm afraid of those I love dying before me.

I'm afraid of ending up in a Hoyer sack suspended from a ceiling track system and being mistaken for a pinata. I'm afraid of a feeding tube. I'm afraid of wearing out my wife.

I fear falling, the cold, the heat, a stuffy nose, drowning, choking, mosquito's, bees, wasps, hornets, dogs, the sun, exhaustion, aspirating, beer, not being able to eat, itches, not being able to breathe....

I miss : my mom, Peggy, Nana, Grandpa, Polly, Big Mama, a host of other relatives and friends who have gone....

I long to : roughhouse with my grand kids, drink a hot coffee, climb a ladder, cook on Wednesday nights, make love the old fashioned way, walk on my hands, hug, wash my own ass, walk on my feet, wipe my own tears, use the remote, drive, ride a bike, dance poorly, talk shit, laugh properly, chew my fingernails, teach Taekwondo, build a house, change a diaper, pay some bills, sit in a regular theater seat, feed Amy for once, order pizza, do a pull-up, tackle Mason, play a video game, coach basketball like I did at Fr Sweeney, kiss like the French, chop veggies, argue with my family, use a bathroom alone.......

Don't get me wrong, I'm very grateful for what I have!

There are, ya know, two sides to every coin. (unless, of course, you count the edge, where, incidentally, you will find me).

Sometimes it's tough to reflect.

Figure this out

I propose my own incarnation of the new zeitgeist of the future, consisting exclusively of the verbal architecture that comes from within my certainly addled mind. This proposition is dependent upon my ability to sustain a palatable cultural identity lying parallel with a confluence of the multitudes of varied cognition of reasoning adhering to foreign brain matter. The single deprecation to my proposal lies in the unfortunate inability for society to comprehend the workings of my grand design of cultural nirvana imbued with phantasmagorical physical and psychological ideologies previously aired only in my subterranean subconscious.

The prospect of an altered existence lies dormant throughout our universe, only. Exploration beyond our limited reality is the single path to discovery of the truth. Salvation can be found without the restrictions of time or matter. Energy is everything and has no name, no identity.

This post has nothing to do with ALS. Or does it?

Think, Tracy, think, you idiot!

What on earth keeps me writing this blog? I read back, and for the life of me I can't figure out the sense in continuing the thread. I find a patchwork quilt of uninspired ramblings that don't come close to identifying my situation as it is. I make shit up off the cuff because I find it easy, occasionally blundering into some claptrap that actually makes sense. This only proves that if you dig through enough poop you're bound to find some coin.

I'm now committed to more forethought and consideration before I vomit words and phrases from my brain to my eyes to the pages of this blog.

I say, good luck with that, Tracy. Good luck changing your modus operendi. Good luck trying to be smart instead of clever. Good luck trying to be attractive rather than an attraction. Good luck trying to be anything better than smarmy. Good luck trying to be sincerely devoid of sarcasm.

If I succeed in transforming myself into that which I am not, I will have made my own rebirth a reality. Even though I can't remember my first excursion through the birth canal, I'm fairly certain of two things : It wasn't pleasant and I don't care to take the journey again. As a result of this sentiment, I'll not be changing myself after all, thus making this post even less relevant than most of the others. If you want me in my right mind, go back a couple years in the archives. Otherwise, tolerate what is left. (play on words)

Picture this

This is a picture of me in ___________. Oh, this is funny! ___________ of Asa. Look at this -  ___________! And this - ___________! And this? When was ___________ taken? Who does this ___________ remind you of? I need a copy of ___________. ___________ is adorable? What on earth is ___________? Is that ___________ legal? What a big ___________. Who took this ___________? Why would anybody pose like that for a ___________? Those ___________ s could be in Playboy.


Knock yourself out, Rachel.

Pictures or no? I lobby you

Rachel is instrumental in the process of distributing my blog posts. She constantly finds time within her busy life to finish the process of getting my words out there. That alone is too much for me to ask.

As to whether I'm sensitive enough to stop here? I'm too self indulged to not push my luck.

Rachel is a world class photographer, having extensive experience in medical, forensic, portrait, nature, sports and wedding photography, yet there are no pictures on my blog posts.

If this changes, you will know I got my way. If not, powers beyond my control have prevailed.

This was originally intended for Amy.

I'm going to tell you exactly what I think. While you read about everybody else, I read about myself. I may appear to disconnect by watching television or play on my computer, when in fact I find that my separation from introspection not only helps put things into proper perspective but allows me to relax my mind. With this method I can function without the blinders of obsession.

Every day I speak to my self. Every day I attempt to believe that ALS is nothing more than an arbitrary collection of symptoms brought on by a combination of events in my life that manifested as a collective destroyer of my body. Whether I cracked my head too often or my childhood was less than perfect or my adult life was fraught with stress has contributed as cause, the bare fact remains that this disease is PHYSICAL in nature. In my experience, no amount of quality nutrition or supplemental elixir is going to grow my muscles back when the motor neurons that caused them to function are dead. No amount of bio magnetic treatments have, despite a doctor's claim of otherwise, produced a single observable muscular improvement, despite over a year of dedication to the process. It does feel good, though.

Instead of determining whether a cup is half empty or half full, I focus on the question of why do we even consider the statement at all. We should ask ourselves why the glass is at half capacity in the first place. It's like being stabbed and debating whether the blade is half in or half out. The argument doesn't address the issue at hand. Consider this: while I do what I can to address my disease, the monster remains in the room, the knife remains inserted and my glass is missing fluid. Any assessment beyond that is irrelevant.

I'm aware that this is nothing more than a rehash of some previous post. I'm just stuck on the subject of this never ending gobstopper blog.

To be accurate, I've learned how to cope with my ever present monster. Without my support group I would never have known today. Or yesterday. Or this year. I'm still looking to kill the monster, but peripheral wounds just seem to piss it off. I've yet to find the heart of the beast. I'm not going to say "trying" because someone told me if I merely "try", my subconscious would wait until I "did"it to identify with the statement. So I won't try. Stupid? Yup. Anyway, I'll try it, which completes the circular reasoning that seems to be consuming my life.

This disease blows chunks

A short reminder. I will be celebrating four years of living with ALS, officially diagnosed on the fifteenth of March, two thousand eleven. I celebrate my tenure because the alternative would be in memoriam. Being alive is, in my situation, worthy of a party every day. Two years ago, when we found out my daughter, Sarah, was pregnant with her third child I hoped to last until the birth. After Asa was born in June of last year, I vowed to survive a while longer. Upon learning for a fact that Nick and Paige were moving to Austin, I promised myself to live a little bit more. Seeing the boys every day and doing my best to impact them enough for them to always remember me, driven by my insecurities and self doubt, I find myself almost obsessed with the obligation to stay on this earth.

Looking down the road toward events large and small as motivation is in no way a guarantee that I will fulfill everyone's hopes of seeing me alive for the foreseeable future. To be quite honest, each day has its anguish and each day ALS reminds me of its presence. The best way to explain this phenomenon is to put it in terms of percentage. Before the disease intruded into my life, a good day rated 100%. Now a good day rates 25%. A low ebb droops to maybe 12% and at 10% I would rather be dead. Most days I have moments or more where I approach my all time lows. Maybe the weariness that accompanies several years of struggle has lowered my numbers. Almost every day brings ups as well as downs. They serve to balance each-other.

I'm not trying to depress you. I've my hands full duking it out with the beast within myself. Love and hate create the perfect storm of bipolar condition imaginable taking frenetic flight in my head. A maddening Whirlwind of Disaster!

But enough about me. How are YOU doing? I'm A okay for a lifer. I will continue on for as long as I can. What other choice do I have? Answer me that. The last thing I want is to disappoint.

Mornings on the ranch

Mornings, those with showers.

Every morning is panic mode for me. The instant I wake up three things happen. One. I must pee. Two. I must be moved. Three. I must say to Amy, "UP! ".

Amy does her best to : wake herself up, get the urinal, pull me to my back, uncross my legs, uncross my left arm, raise my head by elevating the top of the bed, positioning the urinal between my legs, pulling my right leg toward her, seating the urinal, pulling my right hand from beneath my right leg and waiting for me to activate my bladder. So far, we have done without the handful of "in and out" catheters still basking in a cabinet. (In case you are curious, no, I don't sleep naked as a rule but I do wear boxers simply because the search and grasp aspect of the job is far easier than if I were wearing tidy whities). So, after my deposit has been completed, Amy prances into the bathroom, jug in hand, and gloriously dumps the pee in the toilet, rinses the bucket and flushes. Said bucket returns to its home under the sink.

To get me out of bed in the morning requires ten times the diligence of getting me in at night. I'm generally in a breathing panic and trying not to snort snot all over my wife, I'm weak and stiff and shaky and clonising with my left leg. Amy is tired and groggy. She must first strip my shorts and boxers and then hoist me up by pivoting my prone, stinky naked body to an upright, sitting position by grabbing my legs with her right hand and cradling my head and shoulders with her left arm. I spin up and she directs my shaking feet to the disk. She has already pushed the tv against the wall and guided my Permobil near. She braces her knees against mine, reaches under my arms and pulls me to a stand. I manage to lock out my legs while she dips her shoulders and hooks my chin, where I lean my full weight on her. She spins me, plops me in my chair, puts my feet on the pegs, knees again on mine, grabs the left armrest, pulls it down, places my elbows on the armrests, grabs my shoulders, pushes my legs with her knees, pulls with her arms and slides my behind back in the chair.

Amy drives my naked ass into the bathroom. She blows my nose. She dips my electric toothbrush in a cup of salt laden baking soda. She brushes my teeth. I rinse, choking, and she again blows my nose. And again. Again.

Amy brings in the disk and places it on the floor of the shower in front of my commode chair (the one with a hole in the seat). She rolls me into the shower and lifts me using the aforementioned method, spins me and lowers me on to my shower seat. She backs up the wheelchair, turns and spreads my legs so I won't fall over, grabs the hand held shower head and turns it towards the shower corner, turns the faucet on and waits for the water to warm to the preset temperature, sprays my leg to confirm and then places head in cradle, aimed at my chest.

The advantage of having your wife as your caregiver when being aided in the shower is perhaps obvious, perhaps not. Okay. She gets in with me, dressed like me.

Washing me is tough work. Amy gives me a better shower than I ever gave myself. She washes my hair, face, pits, body, nether regions, she trims my nails, she shaves me, all for my health and pleasure. She is my one and only. She finishes by brushing my locks, drying me and deodorizing me. I'm wrangled into my chair. She gets dressed. She gets me dressed. She sticks me for my blood sugar and PT/INR tests, sometimes weighs me and wheels me into the bedroom while she pretties herself for the day.

Particulars may change from day to day, but I see this as a fair representation. More later. Please forgive my grammatical atrocities.

More?

If you want more of the moment descriptions of our routine in life, just say so. I'm willing to share it all. Except maybe the gross stuff. Maybe. Your own peril.

If I get well enough to walk with help, we might buy a Tesla. Never mind we have no money, income or credit. Small obstacles for brilliant minds. Now we just need to find some smart people.

The Eyegaze is funky today, gotta go.

What its like to sleep with me

What is it like to take care of me?

Let's just talk about bed time.

In order to get me in bed, Amy must first spread the satin sheet (for easier sliding of my carcass) upon my bed. Then she folds a cotton sheet and places it across the bed precisely where my butt will land. After bringing my wheelchair close to the side, near the head of the bed, she pulls the spinning disk from beneath and places it under my foot pegs. She then retracts the pegs and lowers the front of the chair until my feet come in contact with the disk. Amy then pulls my upper body forward and removes my shirt. She places my favorite pillow at the spot where my head should plop. Next she reaches under my stinky armpits (she must wash the stank from her forearms several times a day because natural deodorant doesn't work worth a shit) and lifts me to my feet where I lock out my knees and struggle to straighten my back, occasionally successfully, more likely drooling down her back as my head droops over her right shoulder. She then spins me counterclockwise until my back is to the bed, where I slump into a sitting position. With one hand holding me upright, Amy uses the other to navigate my wheelchair out of the way. She then lets loose of me with a little nudge toward my pillow while at the same time grabbing my legs with her free hand and twirling them onto the bed. I am flat on my back and can't breathe well due to the pressure on my lungs, so I suck shallow rapid wisps of air until the motorized hospital bed raises. Amy repositions my pillow and pulls me forward to relieve my chest constriction caused from sitting up.

Now I'm in bed. My eyes are light sensitive so Amy must turn off the fan light immediately. The Dyson table fan must be pivoted toward me. The TV must be pivoted toward me.

Preparing to sleep. I must begin by sleeping on my right side. To acquire this position Amy must first raise the bed rail then use the folded sheet under my ass (yes, I said ass) to pull me to one side. She then crawls on the bed, hooks her left arm between my legs, pulls my right arm clear, hooks her right arm around my shoulder and rolls me. She takes my left hand and inserts it between the bars of the bed side rail where it hangs limp. She forces a second pillow beneath my head. Next, she reaches under me, locates my hip bone, and pulls my body in such  way as to spin me into a more comfortable position. She places a pillow under right hand and arm to prevent hyperextension. She places a sheet over me.

That position lasts for about an hour and a half if she's lucky.

I need to be on my back (sort of). In quick order, I need to be rotated, my left arm must be removed from over my chest and gut, my feet must be uncrossed, one of the pillows under my head has got to go and the head must be raised. A pillow must be placed on the right side of my noggin in order to prevent it from lolling and squishing my already sore ear (from being bent over as I lay on my right side). I last in this position about a half hour. Then I must go back on my side. Sometimes I try my left side. Rinse and repeat all night. Sometimes early mornings are better. Oh, once I wake Amy, urgency and anxiety set in like a freight train. Pain comes in a close third.

Also, I wake Amy nearly constantly with an itchy nose, an itchy head, a hair in my mouth, a sore hand, hot feet, a serious need to pee (which takes forever lying down), my pillow pulled down under my head, gut ache, head ache on occasion and sleeplessness.

I'm a handful. The rest is for anotha day.

Amy, Amy, Amy!

My problems are taking a toll on Amy. Please inundate her email - amyboettcher@gmail.com  with verbal or oral accolades for her tireless devotion to improving my health. You can also flood her Facebook account with spontaneous gratitude and love. Many of you know her, but I live through her and can tell you that nobody can absorb the breadth and depth of her courage, her unfaltering and enduring love for me and her dedication to bringing me back to life. I often have trouble keeping eye contact with her because I feel so bad to have put her in such a position. She says "suck it up, buttercup, I ain't goin' nowhere", and wipes the crap out of my beard. I just wish God had given her an easier way to shine as bright as her soul. Anyway, please give her kudos because I can't talk a lick.

Yes, hopefully

Feedback and new interest abound since the ice bucket challenge ran it's course and made the world aware of ALS. Though most of the money raised will only fill the coffers of traditional study, constricted by the parameters set forth by the FDA and AMA, the word is out and bit by bit the less known and lesser funded concepts will be able to be infiltrated into mainstream research. The fact that virtually nothing has made more than a minor impact on the disease in over eighty years should cement the notion that we need to look elsewhere for treatment and cure.

I'm aware that cures will come out of the woodwork. I'm aware that most of them are bullshit. I'm also aware that none of them have science behind them because scientific study costs money. Its about time the powers that control what is worthy of funding begin to investigate based upon anecdotal evidence, expanding the case studies until the markers become more than incidental, more than coincidental, more than orphan in scope. The fact that people are actually improving should be the first line of offense. Find them all and create an environment from which scientists may forge new methodology for their efforts.

Friends afar

This week marks three years since Rachel and I made our epic trek to New Zealand. I still appreciate the hospitality of Raed and his cool family. They represent all that is great about the country. I also want to put a shout out to a Swedish couple we met at an island cookout. I can't recall their names, but remember talking about their next destination, Australia, where the wife would be incorporating her work into the holiday before they headed home. We also talked about the "Girl With the Dragon Tattoo" trilogy. Something about the scope and tenor of our conversation has led me to believe we would have grown to be great friends had the circumstances been suitable. They likely saw me stumbling around and gathered that I was messed up (yes, even back then). We told them about my condition. I hated doing that. It always felt like an excuse rather than an explanation in those days and I have always hated the awkwardness of the aftermath. They took it with style and grace. I gave them my blog title, thinking of it as just a minor gesture. As it turns out, I believe they follow it to this day. So does Raed. I salute these friends who would be friends in any world circumstance. Salut.

Family

Weekly, maybe. I've lost some steam lately. I'll try to give you something.

Let me tell you about Sarah and Tim, my daughter and son in law.

Back in the summer of 2011, after the reality of my condition had entered everybody's mainstream, Sarah and Tim footed the bill for a weekend in Orlando (Disneyworld). The whole family, including Rachel and Nick, flew in, us from Peoria, Nick and Rachel from Chicago (I think) and Sarah, Tim, Alex and Isaac from Dallas. We had a blast. The first day I walked from morning to night, ending up so weak that when I sat down on the ground I lacked the strength to get back up without help.

The next morning I could hardly walk at all. We had another long, fun day ahead of us, and I couldn't bear to miss it. I stubbornly hobbled to the bus and through the entrance. After much distress, much crying on my part and Incredible embarrassment it was decided that the only way for me to make it through the day was to rent a geriatric scooter. The young girl who helped us asked which of our youthful clan would be riding. When I stepped forward her her voice became louder and her words came slowly and with hyper-enunciation. Apparently in her mind I was automatically feeble minded and deaf in addition to being feeble afoot. How embarrassed can one get? As the day progressed, my shame waned and I began to accept the situation for what it represented. Still, we all had a blast. One thing I now realize.... It was a precursor to my rising interest in electric propulsion.

Move on down the line a little ways. Talk had already begun about moving to Dallas. We were resistant. Sarah was persistent. They were renting a nice house, but it would not accommodate all of us. We didn't want to force them to move on our account, at which time Sarah said Tim would get a job in Chicago so they would be closer to us. By fall, it became clear that Dallas was more practical for my condition. We were moving south.

Sarah and Tim were left with the unenviable task of finding a house with either an in law's quarters or a wing that would accommodate our needs as well as theirs.

They found the perfect place.

We are all together because of the sacrifice of my family. We are all near each-other because that is what everybody wanted. If not for the efforts of my kids, I would be long gone. I could never be so strong.

The short of it

Snippets are so much easier than real content. That's why I spend more time on Facebook than my blog. Of course this must change. It will. Tomorrow.

Hey do!

When you look back at earlier posts on my blog, you will find many stories about my youth and several about my kids, my wife and the shenanigans we played.

Now I move to the present, where lie the crazy antics of my current living environment. Hang on. It has its whoop-de-doos!

Me, Amy, my daughter Sarah, my son-in-law Tim, my three grandsons Alex, Isaac and Asa and, for a time, Rachel, in one house, yes. This is my view of my life. This is truly the best way to live. It is about sacrifice, chaos, confusion, love, sorrow and family. It is why I live today.

If I were alone to contemplate my past, to ease my soul, to forgive myself and others, to reduce my stress and to regain my composure I would lose it all in an instant if not for the presence of my family.

To say that ALS is emotionally actuated, stress perpetuated and psychologically damaging is only partially correct. While stress and depression can cause physical symptoms, the physical systems can also cause stress and bring on depression. Both sequences are equally damaging. If I'm having a good day and my swallowing becomes labored or my neck becomes problematic or my fasciculations increase, my stress increases. The physical elements of ALS are not merely responses to mental breakdowns but tangible identifiers of neurological malfunction, naturally exacerbated by the stress and depression it generates. The result is a pendulum arcing between physical and psychological distress.

The cure remains uncertain, not completely identified. The pieces of the puzzle are known to all, but all are not attempting to solve the same puzzle. There is no one community of effort. Either/or  will never assemble a cure. The answer lies beyond the grasp of individuals. Only a unified and unbiased congregation possesses the tools necessary to crack the case, to find the pieces, to solve the puzzle.

Next post will reveal what a wonderful life I have.

Some serious stuff

Before I grant requests for historical imagery from my past life, I want to clarify the complicated nature of ALS and the vague thinking of those who claim to have the blanket solution to all neurological disorders.

It is no coincidence that modern or ancient science has consistently fallen short in efforts to solve the riddle of neuro malfunction of all kinds. The quest to eliminate symptom has failed chiefly because the search for cause has fallen from favor in the medical community due to short term demands for immediate answers. The conclusion of professionals quickly devolves into a non-sequitur of fatal proportion.

To apply a piece of duct tape to a gas leak only solves the temporary problem, as the leak is the result of a source issue not addressed. The dilemma here is that while the duct tape stops the leak the reason and identification is sent to the back burner of scientific investigation.

I'm wary of everything. While I'm interested in nutritional improvement, I don't want to confuse feeling better with getting better. The distinction is enormous in scale.

Visqueen over a leaky roof does not repair the leaks. It only prevents water from penetrating. I don't want to live the rest of my life with a bag over my head.

The solution to ALS is not going to be found through general means. There must be specific answers to the questions yet to be asked. Find the leak. Find the source. Turn off the fucking valve!

No doubt some success will become of the "Shoot at everything" approach, but I prefer a more exact solution. I'm not going to wait around, though. I'm not.

Lunch at your expense

Yesterday I deleted a potential post. The statement was bold and accusatory on several levels. I rarely ever hit the clear button, but after Amy's comments regarding the content, I dumped the entire post.

Sometimes I sling my writing from common decency onto the dungheap of blame and fraternization. I get pissed off at so many smug, self righteous do gooders claiming to have all the answers without having a clue as to what I go through every single minute of every single day. Pikers!

Crap! I didn't mean to go there!

Soooo! While I'm changing subject, what do you think I should write about? What do you want to read when you open this blog? I can write about anything, but I'd kinda like to get off the depressing ALS thing for a brief time.

I can, and will bullshit. It is the fertilizer of creative writing. I'm fond of languishing in the stuff. So, pour some sugar on me and wait for the flies. Draw up a chair, clothespin your nose and bleat your request. I'll try to serve your desires. Keep in mind the longer you wait the more rancid the dish.

Brief note

How can I be expected to continue writing about ALS after over three years of nonstop postings? You'd've (is there such a thing as a double contraction, Sarah?) thought, after first imagining and then living the ascending symptoms of the disease I'd've (Sarah?) grown weary of the subject.

I am weary, yes. As long as I write I am only that. If I stop writing, weariness is the least of my problems. If you're worried, welcome to my world. Sometimes I marvel at my continued existence. When I don't, I don't. There is one consistency : if I write, be it here or Facebook or email, I live. When the writing stops, I'll've (Sarah?) stopped.

In all honesty, I'm not counting the days. I'm counting the years.

Critters and such

Do I feel anything? I'm more aware of my surroundings than I ever was before ALS. Inwardly, I'm acutely aware of every itch, tweak, numbness, twitch, murmur, full bladder, intestinal gurgle, bowel activity, fasiculation.......

Flies. Often one lands on my long straw and crawls upward as I'm drinking. Flies land on my leg, my hand, my face.....  I can't move enough to encourage them into flight. The tickling is terrible.

Mosquitoes : when I see them land, I'm witness to their blood fest. They stick, suck and turn crimson. I feel everything. Once, while I waited in the van, a mosquito lit upon my knee, engorged itself and popped.

Wasps : never stung yet. One landed on my nose and crawled across my mouth, pausing to investigate some spittle at the corner. I, of course, remained perfectly still and silent.

Birds : bird shit hit me. I didn't flinch.

I have no control issues. I never wear a diaper. No feeding tube. Bib? Yes. I'm unable to chew with my mouth closed. I can't spit. Drooling is purely gravity. I don't inhale fluids if I concentrate. My diaphragm is a pussy.

Commotion makes it almost impossible to eat, but ear splitting tv or music is no problem. Go figure.

People, kids or adults, crying or mad, upset me terribly. I'm more apt to cry than to laugh. I laugh at inappropriate times.

If it weren't for Amy, things would be bad. With her and family things are great. Better to live for a known future than to die and enter an unknown one.

Ice bucket and other things

Our little video contribution to the viral ice bucket challenge isn't likely to follow into viral land, but we hope it helps to put our appreciation out there. In my opinion, if this challenge had never existed, and a simple plea to donate to ALS research had been released instead, that people would dismiss the plea as generic and common, thus garnering nearly no attention and little money. The imagination of the creators of the challenge have proven the power of creativity of a concept in fact brings people together for a cause rather than relying on individual donations devoid of unification for a cause. The last sentence is a structural nightmare, but I'm not changing it because, despite it's crappiness, it gets my point across just fine. The grammar police can lift me out of this chair and kiss my boney ass. Only those who ignore content really give a shit and by their own reaction they are missing my more relevant message I'm trying to deliver, whatever that is.

To and for Rachel : I never use run on sentences. The sentence is designed to be short. Like good poetry. Yep. Dogs with short tails carry less crap. A short Beard is less apt to carry critters. Short is good. That being established, I say:

If, in the minds of intelligentsia around the globe, a single thought or consideration, proposal, belief or hypothesis were to be found as universally agreed upon, without room or cause for prejudice, bias amongst all the souls of earth, inherently neither good nor evil, most obviously faith neutral, binding all humans to its perfect storm of reason, a cultivation of common structure compatible with all forms of neural anomalies, agreeable to even the most demented, palatable to the most callus of arbitrarians, the most scholarly scholars, the megalomaniac of megalomaniacs, the most egocentric egos, the narcissistic, the em-paths, the Atheists, the agnostics, the theists of all kinds, it would have to be the last day for our civilization as we know it, and the first day of a new age.

Whoa! Wasn't that an exercise in excess? The sorry truth is that my mind has always been at home with such calamities of thought. Sometimes (not nearly always), I try to keep my metaphorical peculiarities and awkward vocabulary choices in check so as to not render my readers befuddled at my befuddlery. Even so, I love everything conceptually and structurally wrong, imagining all the red ink adorning my assignments if I ever went back to school and turned this shit in. I'm sure I know what I mean, and its the teacher's educational job to figure out what that is. I'm sure I would be one lousy student.

Sure. The word above used too often. Read anything. A pattern always emerges. The words of description repeat themselves. Sometimes the effort to diversify turns things to crap. Spontaneity works best for me. I never rewrite anything and I rarely shitcan something I've started. Whatever comes out makes the cut. Poor you.

This is reality

Nobody has my perspective. As much as I appreciate all those who praise my appearance as a positive contrast to what they expected, those who pray for me and view my condition as testament to the power of faith, to those who see me as somehow heroic, I am only a man fighting an uphill battle against formidable odds both physical and emotional. I'm ultimately nothing special. Amy is special. She is the one who deserves all the accolades. She should have crowds surround her and hug her and kiss her. She fights for my survival every second of every day, scouring the Internet and making every effort to locate individuals across the globe for people who may help me, all constantly interrupted by my immediate needs, which are many.

I'm not going to say that nothing will work for me. I don't exclude belief or chemicals or therapy or prayer, but, in truth, none are going to succeed individually. Not medicine, not exercise, not diet, not God. No single modality is nearly capable of solving my core problem. No amount of wishful thinking on your part will succeed. Only my wish may seep into my subconscious and render a change for the better. Conversely, my negativity may strike with equal impact, leaving me static or worse.

This is no fairy tale of any proportion. The route, whatever the outcome, is grueling and painful. While my body fails me more each day, my mind must endure the calamities of random thought infused with the battle of depression and the machination of my overactive imagination.

I'm certain of few things. For one, this is a bitch. I want to live without ALS. I'm not so sure I want to live with it, but I'm not Robin Williams and don't have his option. I'm in no position to demand anything, but I demand everything, all the time. I'm luckily unable to speak so as to avoid opening my big trap and make people's life more miserable when around me. I'm certain that I'm no hero, more a victim, garnering sympathy I don't deserve.

So, please continue to pray for me, offer other means of consideration and hope for the best. Knowing it makes you feel good helps me feel better in my heart. If only my disease lied there.


I will share with you the only perspective I know, the perspective only I know. Beneath the surface I'm much more vulnerable, having been subjected to hopes and disappointments of all kinds. I've concluded exactly nothing with any surety. Everything is threaded with doubt. I'm on task, but without the necessary confidence to select a combination that will hopefully see ultimate success.

It's about faith. I'm trying to believe. I'm just not so blind as to see it. Yet.

Exposure of sorts

I remember most of my dreams, and most of them are fabrications of my work life and my failures at my jobs. The problems or compromises or miscues or outright neglect or ignorance plays over and again in my sleeping mind. Having my thoughts constantly bombarded with the urgency of the next payday compromised my projects to varying degrees. I see this perception of failure as a constant in my sleep state, all the while knowing that in reality I rarely failed at work. It is my subconscious that dwells on my failures, bringing them to the front, dismissing my successes as minimal. My core fear is that by and large I am a failure. It is my large and evil problem. It likely has its hands in my present condition. ALS has been a path to escape my fear of failing.
      My anguish extended to all aspects of my life. Financial, emotional, relationships, responsibilities, friends and family - all mechanisms of my life, all affected by my mindset.

    Today I live with the weight of my actions. Today I want to give back everything I took away from those around me and I can't. I've set the wheels in motion and I can't find the brakes. I see everything crumbling around me and I now realize that I am a piece missing from my present environment. If I could contribute my skills and emotions, I could possibly reclaim a sense of success and accomplishment I lost long ago. I can now see that maybe I am needed.

I hope this self-rationalization helps me in my dreams.

This is difficult for me.

Back home post

We're back from vacation and I'm ready for the next. Maybe New Mexico. Maybe the Tesla plant in northern California. If I were in failing health, these trips would not be possible. By most accounts, I should be home bound, have a feeding tube, be incontinent, get sponge baths, drink thickened liquid, suck down pureed food, night air volume aid, have bed sores, suffer from swollen feet, have leg flaccidity, drool uncontrollably, be considering being vented and preparing to succumb.

I'm not controlled by any of this shit. None of the above applies to me. If I drool, it is because I want to drool, usually down Amy's back as she helps me to stand or as she gets undressed or while eating kimchi or sushi.

The world needs to be a smaller place because I want to see it all.

I plan to write more. You plan to read it. I intend to become your pastime.

Our trip to Illinois

This is a notification intended for all concerning our travels these next two weeks :

without boring you with the driving details,

July 28- Springfield, Missouri, Lamberts for dinner, hotel unknown

July 29- Springfield, Illinois, hotel unknown

July 30- Naperville, Illinois, drive into Chicago to see Paige and the Reverent Few at Lincoln Tap Room, drive back to Naperville, hotel Candlewood Suites

July 31- Naperville, Illinois, stay, go see Paige and the Reverent Few at Potter's Place, hotel Candlewood Suites

August 1- Drive to Peoria, hotel Paradise, nap, eat, go see bands at the Tower Park Music Festival in Peoria Heights, including Headliner Paige and the Reverent Few at 9pm

August 2- Eat lunch at the Silver Dollar on Prospect at 2:30pm, watch bands at the Tower Park Music Festival, including Headliner DriveTrain at 9pm

August 3- Meet family at 3pm, go to Meadows Avenue Tap in East Peoria at 7pm for open jam

August 4- Rest

August 5- On road home, Lamberts in Sikeston, Missouri, hotel unknown in Memphis, Tennessee

August 6- drive home

Band members :

Paige and the Reverent Few -

Paige Dechausse - vox, percussion
Nick Boettcher - lead guitar, vox
Dina Simone - bass, vox
Rob Gould - drums

DriveTrain :

Nick Boettcher - lead guitar, vox
"Funky" Brian Quinn - bass, vox
Rob Gould - drums

Nick and Paige hail out of Austin, Texas, while Brian, Rob and Dina currently live in Chicago, Illinois

I'll be the guy with a hat.

A break

I'm planning a break from this blog while I focus on meditation and healing. I'll be back.

Program ho!

The battle to conquer is complicated by the need to cope. An enduring war requires the fortitude to maintain a semblance of self worth. Only a gratitude for what I have can propel me to what I want. My consistent betrayal of what I've been told by my diagnosers is evidenced by my condition. I continue to continue, continuously.

When I prevail, the community will automatically ask "where is the science? ". My reply will automatically be: " apparently outside of your comprehension".

My new health mentor has me on a program. Suffice it to say that the program is not easy. It is the Deana Protocol on steroids. Aggressive. As much spiritual as physical, as much nutritional as psychological. He has claimed that as long as I follow the program I will be out of this chair by February. I believe him. It is up to me. I already feel different.

Today we have been married for 37 years. If you wonder who "we" are, you don't read my blog much.

If all goes well, we will celebrate many more.

I'm counting on this because I only got her a lousy volleyball this year.

When I get well, regaining my ability to articulate, I will. Bet on it. You think I do now? Just you wait! I'll be back!

Here at reality

Idiosyncratic happenings. A poor explanation for the wormy details of my poor self.
I'm learning about emotion and how my disease plays on all of its parts. All of my influences, both to and from, both self and environment inflicted, good and bad, serve to alter the climate for all who stray within my vicinity, yours truly included.
Love may be a highway, but sympathy is a minefield strewn with the corpses of those who have fallen prey to the reality of the human condition.
On less cryptic terms: those of us under the duress of physical and psychological deconstruction make lousy bedfellows, lousy conversationalists and lousy friends.
In other words, I'm not good at being the object of sorrow, pity or empathy. Best concern yourselves from afar. My close up blemishes, behavior and moanings tend to grow as a blight, seeming perpetual in nature to those nearby.
Nobody is safe. Not even Amy. As I grow more anguished, she grows more fatigued. As I try to comprehend the course of living salvation, she uses all of herself to guide me. When I hurt, she keeps her tears contained. When I hurt her, she simply hurts.

So, find your proper distance. Feel for me, sure, but don't feel me. The fire is too hot. Even with my dependency, I hurt the ones I love. I don't want to survive if I must tread upon the husks of those who saved me.

This is why I must heal myself.

On a cheerier note, we have our family reunion in Austin this weekend. For most of you who cannot find the words to respond, just know that I care more for you all than I do for myself.
Self is overrated. We are nothing alone. Even so, I hold firm in my belief that I am the answer to my destiny. I must simply listen to others in order to follow the right path. I'm working on that.

Slim

So much of my text contains content confusing even to me, I'm sure annoying to many, even derogate to some. I see these posts as a better lens through which to view me. I'm too often dark. I peak in sarcasm and avoidance during these comments. I'm sure some expect my mind is traveling an identical path as my body, simply the next victim of my stalker.

Damn!

I live by the grace of Amy. She is grace.

I promised a lighter post. I guess I lied. Besides, I don't have a lighter!

Here I go!

Today I'm of the belief that if I don't find a way to completely change my way of thinking I will certainly find myself at the bottom of the hill I've been descending the three and a half years since my diagnosis.
No small task lies ahead of me, no guarantee attached, as I piece by piece disassemble each and every thinking mechanism inherent within me for the entirety of my life and reassemble the parts into a living design, leaving remains of anger, frustration, fear and disappointment upon the cutting room floor.
I must force myself to accept the validity of mantra, forgive many, forgive myself, forgive my father and begin to build up faith and trust in a modality, the likes of which escape my concepts of reality, a system based on the spirit rather than the systematic workings of a logic driven brain.
Thus I must segue from my current course and venture into a new universe devoid of all familiarity, the unknown chakra center of spiritual dissemination for my health and happiness.
I'm simply out of options. My present course is too easy to visualize. It ends badly, terribly.
I want what I don't have. It is not what I had before. I want what I never had. I want what I should have had. Simplicity of thought, of need, of love, of cherish and trust. I'm looking for the mindset that I never had.
I want to feel again. I want to face my fears and laugh. There will be no more competition, no more angst, no more anger.

This is the only way I will survive. This is the only way I wish to survive.

Barely readable

Insidiousness prevails within me. No matter what I do, the worm that is Gehrig burrows throughout my insides at a relentless crawl. From my idiotic diagnosis in March of '11 until this very moment, with all certainty beyond and with obstacles strewn along its path until the ultimate disaster ensues, I remain witness and cultivator to and of the grand daddy disease. I am nonplussed, at least. I'm severely pissed off, more accurate.

What am I doing? All I can handle, less than I should, as much as I can understand, not nearly as much as my wife. She is constantly on point with nutrition, detoxification, exercise, belief, hope, faith, love, nurture, joy, forgiveness, therapy, education, spirituality, loyalty, interaction, social involvement and communication. I pull up a distant second, proving pathetic in my inability to absorb even a small percentage of her insight, no a modicum of the concepts of many of her array of attributes. I am in a sea without shoreline, sinking with the weight of my mindset, trying to sprout gills of hope and serenity, all the while anchored by my shortcomings of imagination.

On the other hand, I continually search for the mechanism that eludes me: That device enabling those who have won their battles, those who have walked from the sea, those who can look back and relish the escape they have made, those I might join on the beach.

I've become part of Reddit. Look for me under ALS.

My neck is weak. I need a horseshoe pillow.

Tomorrow I write on a good time. Share this blog with those who want to read my story and I will write until I'm blind.

Hiya

I've been too busy working out for the upcoming "Walk for ALS" event coming to Dallas. All of us afflicted will be in the running for slowest time. I'm sure to win with a guaranteed crossing of the finish line : never. All that aside, I refuse to finish "dead" last. I would prefer to live to not run another day.

So. I'm still around. My wife is still beautiful and under-appreciated, my family is fabulous and my friends are still a caring lot. I hope to see many in August.

I'll write more when I feel like it.

Yuk, yuk, yuk!

I don't know. I don't know. Why me?

I'm not certain of much. One thing is certain. Short sentences rock. Here's how:

I feel everything. Always. I'm anything but paralyzed. Don't stick me. That hurts. I can't talk. This doesn't mean I'm dumb. I have retarded digestion. Again, not dumb. I can't walk. I would. My arms are not useless. They are counterweights. If I itch, oh well. If I hurt, oh hell. If not for Amy, oh no. My skills? Naught. My dependency? All in. The kids? All around. You assess my condition. I won't. My neck grows weaker. I require yet more support. My future? God, don't ask my doctors! I'm supported by everybody, everything. Gravity is my enemy. I have no weapons of self destruction. My weight is Amy's burden.

See what I mean? My problem is this:

my thoughts are long, combining, intertwined vexes of complicated mechanisms luring me to and fro through a slowly swirling vortex of lateral convictions, constantly conflicting with any singleness of coherent expression.

Say that in five words or less, smarty breeches!

I correct myself. Short sentences suck.

Not much

Illustrating the same old things over and over again is getting, well........ Old. That's why I occasionally inject a fight or a childhood memory or an observation of no relevance to this blog. Sometimes I make up stories. I'll always let you know what is real and what is not, though you're unlikely to be confused over which is which.

I'll tell you this about me: I've got too much to contribute to my universe. I'm equally inept when it comes to dying as I am at living. I seem to float in a Catholic style purgatory, streaming from side to side, looking for a nonexistent door. I can't seem to figure out anything that works. I'm in a race where nobody is moving, leaving no clues as to which direction to run.

Forty one percent of us lose cognitive ability. It might have found an entrance to my brain. I can only hope any dysfunction I'm experiencing in extant from birth. Sorry for the worthless post. I just don't have it today.

An eventful summer

I've jumped around before and I'll jump around again.

Today I tell you about an encounter I had with a belt buckle when I was fourteen.

No, it was not attached to my dad's belt. It made its way into the back of my skull, having arced through the air fastened to a strop of cow hide after the whole of the weapon was stripped from the Levi loops of my seventeen year old shit for brains delinquent assailant.

Let me start at the beginning.

Briefly : We lived in Pierson Hills, a new FHA housing project in Peoria off west Nebraska. We didn't live there for but a year. During that time I attended Sterling grade school, eighth grade, played JFL football, delivered the Journal Star with my best friend, Mike, ran my forehead full speed into an aluminum playground light pole while trying to catch a football (probably the primary reason I had trouble catching anything thrown at me since) and a zillion other things that will come back to me like they always do.
Okay, so its summertime, early evening. I don't recall what day of the week, but if I were to guess I'd have to say Saturday. (I'm going to drop names because its exactly true as I recall, and the only bad guy and his family don't likely read this stuff and I don't care if they do ; in fact, I'd be more than a little flattered, willing to battle any lawsuit they might manufacture at my expense).

Envision this. I'm going to shotgun events because they occurred in high speed buckshot impaction mini-sequencing.

Moment :

the TV is on. I'm lounging on the floor. My mom is on the couch. Salim, my awesome step dad, is there and my uncle, Adel, is in the room. Someone is at the door. I get up, open the door, see somebody through the screen, hear him say something about how I told his brother I could kick his ass (total bull), followed by a fist firing through the screen door, lighting on my face and knocking me onto my butt into the living room.
Cliff's description :
i got up
pursued
caught him in the courtyard
we scuffled
his name was Stetler
he was one violation from St. Charles
his dad attempted to get in on the action
Salim put an end to that
Stetler was not winning shit
Stetler backed up
Stetler pulled his belt
he swung on me
i got hit a good one
blood everywhere
my white tee shirt turned red
he had lit my fuse
he struck out
i caught it
i pulled him in
my knees went to work
he doubled over
he let go
he ran
his mother jumped on my back
i shrugged her off
i gave chase
he escaped into his apartment
i ruined his screen door
the police took me to Methodist Hospital
the Ambulance took Stetler to St. Francis Hospital
i got four stitches
he got his ruptured appendix removed
i got interrogated
he got incarcerated

what did I learn from this? Stand back from the screen door. I'm sure a lot more happened ; i was slightly engaged.

Family

The expanse of days between my posts can be explained. I'm not in the mood to reminisce. I'm going to take time to consider my condition and my future, determining how I may improve both my outlook and my prospects. I am planning to reinsert myself into my family and end the disconnect.

I need to thank Sarah for bringing to light what I must consider.

An ALSer we know has not communicated for some time and has decided to quit living by summer's end. I need to think on that.

I must get back to what's important.

Glendale Heights - a start

Glendale Heights :

for a few months during the beginning of my fourth grade year of school we lived in a predominantly Italian American populated townhouse style housing project. It was here that I:

got hit by a car driven by a middle aged bleach blond bartender. It was a darkish blue Ford Mustang, dirty, maybe a '67. My bike, a tall three speed, was pretzelized by her front end, committing me airborne from dead stationary as she left the pavement to slap my sorry ass pot to top over her hood, up her windshield, across her roof, down the trunk and into the ditch. I should've charged her for a car wash. The human chamois, I'm. I carried my dead bike home.

got hit in the testicles by a speeding football at the hands of a big Italian kid.

got dragged, kicking and screaming, by dad, to the barber shop to get what little Dippety Do styled hair I had mowed down to a crew cut, requiring me to wear a stocking cap at all times possible.

That's all I got for today.

Back on line

Invisible forces. The cruel underlying germs of degeneration that seem to have permeated my body and mind continue to do damage to both. What people see doesn't begin to explain all of the effects of ALS. I continuously battle unseen challenges as I sit, silent. Let me explore some of these lesser known attributes of the disease. I say lesser known because I'm fairly certain that most victims as impaired as I don't have the stubborn drive to communicate at all costs the pedigree of full blown Lou Gehrig's Disease.

I'm unable to :
control my breathing between my mouth and nose, causing a problem when blowing, coughing, inhaling, exhaling, chewing, swallowing and talking.
Swallow completely, which causes constant concern when eating.
Swallow naturally, which makes the act "on demand" only.
Control clonising in my legs, brought on by a bump, mental agitation of any kind or as a sign of a more serious problem.
Enjoy eating like I used to.


The list of minor annoyances and frustrations seems to be endless. I feel as if I'm slipping, ever so slowly, down a decline strewn with twitches and thatches of added complications and discoveries, certain to blur any view of my end game, certain to confuse my motivations, always smoking the path to my destiny. I'm a mute runner who cannot run, now blind as well.

I find it too difficult to expose all of my little defects in one writing. I must sprinkle a few at a time so as not to overwhelm myself. Over time, with enough information, perhaps a paradigm can be assembled from which others may better understand the inner struggles of an ALS junkie such as myself.

Every swallow must be premeditated. Every breath must be calculated. The leading killer of us is related to respiratory issues. As my diaphragm weakens, I am able to take in less air. Eventually, I will not be able to breathe on my own. I have chosen not to be put on a ventilator. Let's hope my stubbornness extends to physiological function.

In order to avoid negative reviews, I'd like to say that today I'm happier than yesterday, hopefully not as happy as tomorrow and certainly happier than last year.

Expect me to get back to my childhood memories.