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.