Tasty for some, bland for others

The appeal of my last post was probably as sporadic as my ALS. Music speaks to many, but in some cases there exists a language barrier impossible to climb. I know people who battle the "white noise" of incomprehension. Not so for me. I've been to hundreds of live music gigs, most to see and hear Nick, and while I rarely hop up and dance- fearful of my disco tendencies- I always feel the rush. I sometimes find myself scrunching my toes when Nick is shredding or Brian is thumping or Rob is banging or now, when  Paige is belting out a tune. My condition intensifies my need. 

Today I am 54. I never thought I'd be celebrating my birthday from a wheel chair- at least not this soon. Thank you to all who have, are and will wish me well. I know you mean it and I know I need it.

So.......I begin to enjoy my day, for now putting ALS on the back burner, turning the heat up to high and incinerating the sonofabitch.

Writing while listening to loud music

Stones, Beatles and Santana in my ears, drowning out any distractions with its own distraction. Right now, Black Magic Woman. Loud. Headset melting. I like it.

I am tuning in and tuning out. Now- Come Together- this is what I need to do. I need to quit focusing on my problems and cue in on my strengths. I am, really, sick and tired of being sick and tired. I am fed up with the doors of my abilities being shut. Eventually, if I don't open my mind, they will all close and I will have no where to go. Satisfaction- Stones- grew up on this song, first tune I dropped coin in a juke for was this- 1966, 1967. Berryland- Wonder Lake. I need to get back to what makes me happy. ESCAPE WITH A SMILE. A musical door to paradise. Oh, Darling- Beatles Abbey Road- my fave. If I could sing only one song in my life, this would be the one. What happened to music like this? 

I'm zoning out. Right now I don't give a shit about ALS, about diagnoses, about diets, about cures, about future, past. I am at this juncture living in the moment- Satana- Inner Secrets album- Open Invitation. I first played this on my Philips 333 turntable, powered by a Technics receiver that Nick still uses and blown through Bolivar 64 speakers- 3 way with crossovers- later bought out by JBL- loud enough to break glass. Real, uncompressed sound. If you never had records you cannot appreciate the difference. My ipod, my G5, my ipad produce great sound but not THAT great. Newer is not always better. Just heard Something- Beatles- flip side of the 45rpm featuring Come Together on side one. I had it. OK, 45s aren't hifi, I'll give you that.

Stones- Sympathy For The Devil- get out! Louder still. ALS? What's that? Gone for the moment. I tell you, this is the shit. Why didn't I think of this before? I LOVE THIS SONG- Time Is On My Side (yes it is). YES IT IS! I think music is my peyote. I can smoke it up.

Now another Inner Secrets cut with insane percussion. Nameless? Timeless.

Yes, more Stones- You Can't Always Get What You Want- boy oh boy this is truth- but the next line says you get what you need, and I need this. No drum circles for me, no soothing melodies, thank you very much, give me real music. My music therapy gets me going. My blood pumps and my heart soars.

The first song of this collection was Beast of Burden. Not much to say except I refuse to be burdened.

Now that the music is gone, the quiet is a drag. I have discovered, though, that I now have a place to go where my ALS is pathetic, where my heart overtakes my brain and gives me what I need to open myself to all the possibilities of life rather than the improbabilities of science.

I am a car

What better way to describe the disintegration of mobility than to compare it to a car? Better yet, I shall be a car. I refuse to describe myself as a particular make and model. You be the one to identify with whatever vehicle proved to be your nemesis.


I was born (manufactured) either without defect or with a predisposition for a system failure. Basically, I caused my problems or they were inevitable. Either way, through abuse or by predetermination, I have become more of a yard sculpture than a mode of transportation.


I used to run great, on all cylinders. I still do, but now my transmission fails to get the power to my wheels. My motor hums along perfectly, though providing no function other thaN to sound good. 

The key to my problem is transmission. Proper information provides for proper function. Too little information limits the amount of  function, too much provides functional confusion. My transmission, made up of motor neurons, provides all information all the time, similar to a billion sperm looking to infiltrate a single egg. Similar to a thousand swimmers trying to save a single drowning boy. Similar to a hundred lumberjacks trying to down a single tree. Too much information.

If I really were a car, the solution would be simple- call AAMCO. I could, but they don't have the Chilton's manual on motor neuron repair. Too bad. I was looking forward to spending some time on the rack.

Moving to Dallas

Not too long ago I let the cat out of the bag and revealed our plan to move to Dallas. I gave few details because they were tentative and sketchy back then. Since, plans have crystallized and particulars are available. As I've alluded to on several occasions, my daughter Sarah, her hubby Tim and their boys, Alex and Isaac live in Dallas. Since their move three years ago, Sarah has expressed her wish that we move there. Her reasons were and are many, primary amongst them that we could be closer to the kids. 

Before I was diagnosed with ALS and everything in my life changed drastically, I never gave serious thought to moving anywhere. Amy had lived here her entire life, I'd been here since eighth grade and we were both deeply entrenched in and with the community, with her art, her hypnosis, her social involvement, my business, my taekwondo, our involvement in the music scene, her friends in the art world, my friends.......while my  family can be found scatter shot throughout the country, Amy's brother and sisters, their families (in part) and her dad still live in or near Peoria. When Amy put on a fundraiser for us in May, we counted over 400 in attendance or at work. A couple months later a fundraiser held at the Silver Dollar Saloon filtered 300 people through the door- a totally different demographic from the May event. I don't mean this to sound like an advertisement for our popularity. It is apparent that if you live in the same place long enough, you get to know a lot of people. That we do. Combine all of this with the fact I'd been building houses for 26 years and Amy had been brightening the world with her art and personality all those years and the thought of quitting and moving was, well..... unthinkable.

Our world has changed. I have always thought of myself as innovative. I assumed my innovations were voluntary, but as it appears, my best  change agent was thrust upon me in the form of an incurable disease. Go figure. Part- all- of me wishes I could present this innovation through a proxy except I couldn't wish my condition on anybody- I did recently mention Manson as an exception but that might not be true- except maybe a rabid dog in the Australian outback. That said, I can now see that whether or not I brought these changes upon us, there is good here. There are positives that can be isolated and extracted from any bad hand. There is a silver lining to even the darkest storm cloud.

I know that the people we care about and those who care about us share a bond that is impervious to time and distance. I am relying on this and know it to be true. When we move, I expect to extend the envelope of our connections all the way to Dallas. Today the world is contained in a nutshell. What with Skype, Facetime for you Apple people, e-mail, snail mail, cell phones with free long distance, even this blog, a part of me remains in Peoria. A part of us remain in Peoria. We will never be totally gone.

Timeline- The movers will be pulling up to our house the last two days in February. We see the semi loaded and follow it to Dallas the next day. Today, I keep our exact destination secret. I will provide details soon. Look for pictures in the upcoming weeks. All is good. All is right.

Aftermath

A thousand years ago, at a time when my cell phone was called a mobile phone- a device that was bolted to my truck floor and wired to my horn, had no voice mail and would ring/honk incessantly until I climbed down off a roof, jumped inside and answered it- I went on a personal crusade to lose some weight and get fit. I worked out at Landmark Spa and stopped eating hamburgers. I have never shied away from lifting and pedaling, but neither have I found it habit forming, rather boring in fact, so my diligences have always been sporadic and brief. I also pushed too hard and established a level of performance so high that I lost interest very quickly. As is typical with most, if I pushed hard and lifted heavy on any given day, a couple days later my muscles screamed for mercy as the shredded muscle tissue rebuilt.


Push ahead- now I have ALS, and any kind of regiment of workout to tear down and rebuild my muscles would be both ludicrous and dangerous. Nowadays, a task as simple as walking can overwork my confused and overstimulated legs. I grow limb weary long before I become winded. I have inadvertently put this claim to the test, and the result is irrefutable and ugly. 


Wednesday I  described my experiences with the physical therapist, concluding that if I fall, I can't get up. If you recall, I  did some stair work that wore out my legs. Little did I know what damage I had incurred- until  last night at 2:45 am. In bed.

I awoke, as usual, with my struggles to reposition myself and, as usual, I needed to pry my left fist open, and as I began to dislodge my fingernails from my palm, the inside of my left forearm seized up like someone had cinched a Vise-Grips on my tendon. As a result of this pain, I tensed up from head to toe and blew out my left calf. Again. I thought my bellow and spittle would surely wake and spray Amy, but it did not. I needed her to pull my foot forward to stretch my calf.  Writhing and hollering, acting out of shock and idiocy, I made the ever so painful mistake of letting go of my left arm and swinging it toward her, instantly unhinging it and unleashing the childbirth agony (my male perception) that is so profound as to remain in my head forever, so clear that I can easily relive every such experience without effort, only to find, through the red haze, that she wasn't in the bed, wasn't in the room. Anybody who has claimed tha one pain supplants another (including me) is wrong. One pain is a note, two become a song and three is a cacophony of shit. Anyway, Amy hears me, comes running up the stairs in a panic and scoots a pillow under my left shoulder, grabs my left foot and pushes it toward my shin, relieving some of the pain. My forearm hurts no longer- or it does and I don't care- and the pain in my shoulder subsides, my calf is releasing. Amy is near tears- she can't catch a break at 3am- and I hit upon a moment of depression and defeat. Only a moment. 


I know some of you reading this are aware that I switched from past tense to present tense within the same paragraph. Let me explain: As I write, the story takes on a life and changes my thought process in such a manner as to force me to relive the experience, whereby I jump from relating what happened to describing what is happening- past description to present experience. Even though a literature teacher would argue tha this is an incorrect method, I would argue that true emotional involvement makes for better literature than pure correctness. Emotional reality, in my opinion, always trumps structural or literary rules.


All of this calamity was brought on by my efforts to tax my muscles to the breaking point- a simple task with ALS as an accelerator- and today I must lay back, keep my feet up and enjoy life. That is my plan. Oh, by the way, the remainder of last night was a sleeping/waking effort not to strain anything. Today I'm sore as hell. I learned my lesson- oh boy did I. 

Falling down is easy- try getting back up

Today, I got a visit from my physical therapist, unannounced but not surprising since I'd done a poor job of communicating with him and he is motivated and persistent. He caught me finishing lunch, and while I figured he was just checking on me, he actually had plans to run me through the mill, substantiated by his expression, coupled with his opening statement of "I don't want to make you puke, but..................". He wanted to help me work on my cardio, so we headed for the stairs. It was the first time I had been told to do stairs since high school wrestling practice. I worked it as best as I could, not exactly blowing chunks but taxing my diminishing leg muscles all the same. I do believe I would find total system failure more likely due to muscle fatigue than to exhaustion. I did some quadriceps lifts that challenged my balance more than anything else.


We did some heel walking (pathetic) and toe walking (worse than pathetic) and some toe tapping dance step exercises in the kitchen. Amy was brought in to see what we were doing and the conversation came to an abrupt halt when she remembered a question she had: If Tracy falls, how do I get him back up?

No problem, let's demonstrate. So they amble and I stroll into the living room, Amy shoo's the dust bunnies under the couch and clears the floor, hardwood, creating ample space for me to flop. The PT secures a belt around my belly and I'm ready to go..........Down. I already know what I can and cannot do, so my mind is inwardly expressing panic while outwardly I play nonchalant. Only my eyes give away my terror and only Amy sees my expression. I bend over and prop myself on the couch seat with my right hand. My left is nearly useless and acts as a fake support. I kneel down. I put my right hand on the floor and slowly collapse to the oak. I am told to lie on my back, so I extend left. Not bad. I relax myself and my right arm goes to my side. I repeat the process with my left arm, rolling my shoulder back and..... pain like an axe cut rips from my upper arm! Ten on a ten scale and NOT going away. I pull my arm up over my chest and ride it out. I'm not sure I'd volunteer for such pain if the end result were a baby boy. Amy rushes around to slip a pillow under my left shoulder, helping to relieve some stress as the PT, unsure and in shock, stands back. After a half dozen minutes I'm able to do more than moan and the ambiance of my living room returns to a normal hue. (I really see red as my blood boils with my agony). Another five goes by and it's time to get me to my feet. I enlist Amy's help to get me up on my right arm, and the PT grabs the belt and lifts, rotating until my knees are beneath me. From there, I use the couch, pushing my face into the cushioned seat and locking out my neck as a support while I put up a foot, then the other. About now I'm really glad my couch is leather rather than an old, cloth, skanky sofa, the nesting place of a thousand butts. So now I am standing, safe and sore, tired and dejected as I realize that the question posed has been answered. What does it take to get me  on my feet after I fall?  Some variation of two men and a boy- until my right arm gives out, when a hoist must come into play- scary stuff.

I am not alone

I've been writing this blog for over seven months now and just realized that while I'm certainly aware that I am not the only guy afflicted with ALS, I write as if it were so. I act as if I know something about battling the disease, but when I look back on my posts I see that while my tack changes with every breeze, I haven't a clue whether anything I've done has provided a modicum of good. I rarely consider others' battles as I devise so many tactical variances of my own. I know I'm on the first leg of my ALS  journey. I was diagnosed less than a year ago, and while my symptoms seem to be collecting within me at a rapid pace, I am still in better shape than those who have been living with the disease for years. I'm sure that many ALSers and their relatives find some of my posts at least abrasive and at most horrifying. I have a habit of letting sarcasm and humor carry the day in many writings without consideration for those living  horror far greater than mine. I am sorry if I offend or distress. My  habits are addictions- I can slather on the deodorant every morning but at the end of the day I still stink.

I have no idea how many readers out there have ALS or know someone who does. I am by no means educated enough or experienced enough to be considered as a barometer to be used to determine any plan of action against the disease. Some people live the dream, some are living in a dream, some people are living a nightmare and some create their own hell. I'm just trying to turn my nightmare the hell around so I can dream of living in a dream, waking after an astounding eight hours of  sleep to find out it was all a dream, a nightmare of epic proportions, but a nightmare nonetheless.

I am willing and able to post melodramatic, usually do and enjoy it. I like to take a sliver of stale, moldy cake, load it with a pound of frosting and serve it up on a platter. My posts are just that. ALS is a shit sandwich that I make every effort to present as edible. Tasty, even yummy. By the time your taste buds discover the nasty presence, they have been dulled by the disguise slathered upon them. As the malignancy within festers I find new ways to create a palatable concoction that cloaks the rotten depths of the subject. My war is with words, living, that  combat the subterranean disease that is ALS. Besides, if I just bitched, complained and cried, you'd have tuned out months ago.

I am grateful.......................

First of all, let me thank the folks in the Bahamas, whether vacationing or native, for joining my growing family of readers today. I wish I were there,  soaking up the sunshine and tanning this Burl Ives physique. I again thank all of my readers, accidental and otherwise. Let that be that.

Back to me. I  cancelled my physical therapy today because 1) I have a list of activities written and can perform them with Amy's help, and 2) I suffer performance stress at the thought or act of an outsider lifting my legs in bed, watching me struggle moving in a tight rotation or any other motion where failure is a distinct possibility. While I know my physical therapist is aware of my disease and its path, making rehabilitation a hope at best, I would rather hope for improvement, any evidence thereof apparent to me, be witnessed by my wife or daughter first. Then I'll call the PT.

Sleeping through the night has become a distant memory as my mobility now has diminished to the point where I cannot roll over or move across the bed without help. My grip and purchase is so weak that if I try to push my feet, they slide and I don't move. If my sheets were made of 120 grit sandpaper, I might be able to dig in. I am like a snake, whipped half conscious and thrown on a slip n slide. As a consequence, whatever position I find myself in when I fall asleep will be the position I find myself when I wake up- two hours later, sore, in need to re-group, in need to clear my mind of repetitive dreams and thoughts likely brought on by my futile, repetitive efforts to find a new sleeping position, and finally, I need to pee. This pattern of night behavior has invaded my slumber. I recently tried a sleeping pill different than the Ambien that nearly promoted night terrors only to find out the new stuff to be crap as well, keeping me awake and anxious. Another drug attempt had no effect other than to make me groggy half the next day. As a rule, I do better fighting my own demons rather than hiring a drug proxy. My present efforts, drug free, are aimed at re-booting throughout the night without succumbing to the pee trigger. So far, no accidents other than an occasional aiming issue that is apologetically brought to my attention and apologetically received. Suffice it to say that this misguidance is not the result of ALS but a pre-existing shortcoming I picked up in adolescence. So far and historically, I have refused to pee like a girl, a stubbornness now bolstered by the fact that it is harder to stand back up. Weakness has proven to have its advantages.

Today I say thank you

I started writing this blog mid July, thinking I might occasionally add a post, pick up a reader, maybe even someone I didn't know. Well, a blog stream I thought might grow short legs has proven to have giraffe genetics. I now post nearly every day, no difficult task as I pull noodles of writing from the huge bowl that is my brain, constantly  being re-noodled at a feverish pace. The primary reason my noodles turn to print is the amazing apparency (not a word, don't care, works better than "fact" which seems too presumptive to me) that people are looking for the next installment, hiccup fashion, of my saga. Some of you even like  the triviality of my youth, where ALS hadn't come in to play (or had it- could the threads of my youth have woven the fabric of my present predicament?) So I continue to extract noodles- some short, some long- and write, not coerced but bolstered by the interest proven through my readership, a surprise to me I can never fathom. 






Today I need to  give recognition to those across the globe who have read, even if only once by accident, my blog, and those who continue. With our modern technology, those of you who do not read English can still understand the words, the meaning, I hope my sarcasm isn't lost in the translation and part of me hopes you don't think I'm crazy- the other part is a realist.

Without further adieu, I thank you all, those of you who read me, maybe you know something about me even though we may never meet. Thanks to all of you in............................

The UNITED STATES
MOLDOVA
FRANCE
BRAZIL
GERMANY
SWEDEN
RUSSIA
CANADA
ECUADOR
AUSTRALIA
MEXICO
NEW ZEALAND
UNITED KINGDOM
LATVIA
ITALY
UKRAINE
CHILE
ARGENTINA
SWITZERLAND
SOUTH AFRICA
SPAIN
CHINA
VIETNAM
ISRAEL
JAPAN
SAUDI ARABIA
NAMIBIA
AUSTRIA
BOSNIA
GEORGIA
POLAND
ROMANIA
NETHERLANDS
INDIA
TURKEY
BELGIUM
MALAYSIA
TAIWAN
SOUTH KOREA
VENEZUELA
FINLAND
SLOVAKIA
COLUMBIA
HONG KONG
THAILAND


A few of you I know. A few of you I have met. All of you are my friends- friends are family- therefore, all of you are now family. Can you imagine the reunion? Thanks for being there. Thanks for giving me the motivation to keep writing-  no matter how painful it is for you to continue to read my noodles...

Core issues

Until recently, I've thought of myself as an arm and leg man when it comes to ALS,  despite having been shown through an April EMG test there was some activity in my gut. Now I   can feel some core infiltration taking place. When sleeping, I can no longer roll from my back to my right side, my left side long impossible due to my painful shoulder. If I need to turn, Amy has devised a method to roll me. As my right arm weakens, she has also learned how to lever me to a sitting position.

Yesterday I delved into my mental battles; today I focus on my physical battles.

Specifically, my remaining good arm and hand is following the course of the other. I have trouble with rotation, both ulnar and radial, my grip and dexterity are diminished. My posts are assembled now using the middle finger of my right hand only. Once I get Dragon running again I can speak the text provided the program can adjust to my now slurred, nasal speech pattern. Often with ALS, speech becomes difficult as the muscles involved are weakened. This is beginning to happen to me. I am acquiring lazy speak. I'll likely appear to be slow or dimwitted to strangers.

I find myself sagging to my left side when I sit and  my left arm is merely an appendage to carry around. While I can force myself to a standing position, walking  unaided has become a road less travelled. I am comfortable in my chair but a fish out of water when otherwise challenged. By my guess, stairs will be impossible for me within a month.

While generally my breathing feels normal, leading me to believe my diaphragm is so far unaffected, my swallowing has become strange and worrisome. I can eat and drink normally but at least once a day I might, for no reason, aspirate, even without food or liquid as a cause. I swallow, I aspirate, I cough a while and I'm OK. Something is lazy in my throat. None of this is strange  to ALS, however it is strange to my ALS.

I will soon need to be fed. I hold out hope that it will be solid food fed through my mouth  rather than puree poured down a port in my gut.

Earlier, I  challenged that I would put out there all that is going on. By and large, I have. I do spare the masses details of toiletry drama that spot the narrative but don't make the post. Funny, yes. Inappropriate, of course. Printable, always. Maybe some day I'll write a post, timeless and gross, to be archived until which time that I couldn't care less about propriety, thereby releasing it in a splat upon the world. Meanwhile, I will continue to provide a steady diet of tribe for as long as I can.

More to deal with

As ALS slowly leaches from me my abilities and function, as it draws me down, trapped in a weighted net, breathless, I discover that my distention is more than physical. I learn each day that my ability to cope is challenged by an added gravity. Suffice it to say that had I not learned to release stress in areas  unrelated to ALS, my present burden would have drawn me to the sea bed, drowned. A while back I drew a comparison between instant disability and gradual disability, wondering aloud which would be worse. My jury is still out; I can only speak of the latter. If insanity were the issue, of course I would take instant. These days I spend as much time trying to get out of my mind as I do staying within it. Much of coping is rising above the fray, separating from the over communication of my brain, disengaging from battle- none easy tasks. I'm learning- kicking and screaming- that constant battle breeds constant tension. My senses are perpetually on alert, defensive, ready to lash out to protect, hyper aware and easily spooked. Jumpy. My conversational tone reflects the same anxiety. I'm quick, lashing and irritable whenever any  situation rubs me wrongly. I am as hyper reactive externally as I am internally. Try as I may, I cannot easily adjust my responses. ALS might be cataloged as a physical disruption that leaves cognitive brain function alone, but it does not spare the mind. ALS, as insidious as it is when breaking down the body, wreaks an equal amount of havoc upon the thought processes, each being intertwined with the other.


I have formed no conclusions simply because conclusions require closure or termination. If I could draw a conclusion on a sliding scale, parallel to the slide of my ALS, it's determining meaning would change along the slide and fail to be a conclusion of any kind. Confusion. Conclusion. One in the same in this case.


I am not brave. I cry too much, I imagine too much and I fight too much. This disease has become more of an emotional battle than I ever thought possible. As well as I know how important it is to love and feel loved, to embrace all the positives surrounding me, both physically ad spiritually, I still hate my position, I still hate ALS and I hate the fact that hate taints my mind and battles the emotions that may actually help me through this thing. I never would have believed that a strong mind would be an enemy of my health and well being. I will continue to blunder through this and promise to update you on all revelations and epiphanies. Just promise me you won't hold your breath. Everything with me moves slowly these days.

Back at it

I've been a bad boy, what with leaving y'all wondering if that kiss Amy left me was the kiss of death. Again, I jest. I'm always jesting or I'm not. Sometimes I haven't a clue. 

I have some good news. We bought a used van equipped with a hydraulic side door lift that allows me to venture seamlessly into the world outside of my home. Transferring from chair to car seat is proving to be more difficult these days. I know I can still- barely- manage stairs, though only through necessity, but pivoting into a car or climbing into a van is even more difficult. Now I can remain in my power chair and get around on my own steam, leaving Amy to run behind in a panic. No longer must she push my chair, giving her more energy to push me in a plethora of other ways.. There is only so much she can do, so much I can take; My limit, unfortunately, being less than hers. On that matter, truthfully, she never fails to put me first, whether it be to test traffic at a busy intersection or to help me up out of a chair or to look me in the eye and bolster my confidence with continual positive thoughts. I can read her like a book, and while some of her reads with difficulty, much of her dialog runs long and her narrative crosses into realms beyond my comprehension, I continue to read her knowing it is all good and all driven by her heart. I oftentimes fight her, her ideology, her hopefulness and her eagerness, but in the end,  I haven't a leg to stand on- actually, neither leg is much good these days- and I am sure in time I will open my mind to her way. If you know her- really know her- then you have no doubt that my life could not be in better hands. If you don't know her, then realize it is your loss. I can be impossible to deal with these days, ALS being no excuse, and Amy will take the salvos and give as good as she gets, always, always with my mental and physical well being in mind. Without her I would have nobody to bitch at- and if you're thinking Rachel would take her place, let it be known that Rachel don't take s*** from nobody. If you know Rachel- really know her- you know what I'm talking about. If you don't know her it is your loss.

On to the stairs

So I've eaten some breakfast, taken my pill and caught up on news and sports, etc., all the while trying to keep my robe closed and what's left of my modesty intact. Since I've gained most of my weight in my gut I find it difficult to locate the proper position for the belt on my robe. Too high and it slips down and slackens; too low and my belly dislodges. I might need two belts or duct tape down the road.


I need to get back to my bedroom, now transplanted from the third floor to the second, where Amy is waiting to dress me. I can manage, usually on the fourth or fifth try, to stand up from my office chair, with help from a nearby door knob attached to a swinging door, grabbing my walker with one point two good hands. I shuffle to the bedroom where Amy is ready to dress me. Sometimes I/we shower first, but that experience will or will not be reserved for another post. So Amy dresses me and I'm ready to head downstairs. I remind her to grab my phone and i-pad (an amazing product), she does, also hoisting my walker as I wait at the top of the stairs. She goes down a few steps and helps guide my steps backwards, ever so slowly, my right hand gripping semi-securely to the rail. The landing proves challenging as I need to release one hand rail, pivot and grab the next. Once I hit the bottom (figuratively) my Jazzy is waiting and I plop down and let out a breath.

I turn toward the living room, roll up to my special table, Amy opens my i-pad folder, places my phone next to it and hands me the TV remote. Life just doesn't get any better. Then it does. She kisses me on the cheek.

Continuing my daily ritual...............

I'm back. Physical therapy was well worth the time. I already know what I should be doing, I just needed someone to emphasize how important it is. Anything to help my descending mobility to slow its momentum is good by me.


Continuing.........................I left off as I exited the bathroom, but I should have filled in a few details. I shall now. Just so you know, a walker has more than one use. I have found it to be very stabilizing when I use it to straddle the toilet bowl, the frame  coming to rest against the tank; it is also reversible for other types of toilet security. I allow the walker to envelop me as I belly up (literally) to the vanity, where I make an effort to brush my teeth and hair. My toothbrush (soft, ineffective bristles so I don't bleed to death what with thinners in my system) is on the counter, as is the toothpaste, the squeezable kind with the lid that pops open, in this case with my teeth. I can steady the brush against the counter in club like fashion with my club like left hand while I gob it up with my right. Brushing with the right hand is hard enough for a left hander like me, but when you add the fact that my right is beginning to malfunction the result is mouth mayhem. I get it done but its none too pretty.... I must open a drawer, on my left, no less, to get out a brush to tame my head nest, and since my left hand is so weak, I pivot to use my right- dangerous. I don't really know why I bother since I can't cup water in my good palm due to an increasingly annoying twist and my head won't fit under the faucet and I can't brush worth a crap in my condition anyway. My only guess is that the habit stays stubbornly aboard with the thought that now I ride a wheeled device and EVERYBODY is tall  enough to stare down on my follicle debacle. Vanity at the vanity, how pathetic. I am very close to becoming a hat man.


So now I exit the bathroom, walker driven, and head into the remnants of what once was my office, slipping into my chair at my G5 Mac, looking to my left at the carcass of my PC, dead by all standards, out of warranty and cold to the touch, topped off with two Asus monitors, tombstones really, a couple of giant black teeth reminding me of a life I once knew, however briefly, where a PC lived. I am saddened that it died so soon after its first birthday.


I sit, I check out the sports scores, I check out how the market did the previous day, I check my email, facebook and Linkdn, I skim the tech pages, I update myself on politics, look for evidence that the Occupy movement might actually have some solutions to our problems that don't involve Socialism, see what new career path Lohan has chosen, I see what new movies are coming out, I check the weather here and in Dallas.... and maybe I post on this blog. Sometimes, during all my  skimming, Rachel brews me a coffee, brings me toast and serves some kind of fruit and juice. Always do  I take my morning pill- for my near diabetes.


That's all for now- I will continue tomorrow with my staircase exploits and more. Let me leave you with one of my obtuse witticisms: I have determined that before ALS I had two legs, useful at getting me wherever I needed to be. Now, with the advances of ALS, they have been demoted to two meat cylinders, bone in. Try walking on those...

Descriptive Analysis

If you see me in person, be sure to understand that I cloak many of my symptoms by moving little and drawing aside your attention with clever speak. I find it important to present myself in the best light possible so as to relieve others' stress. Most people tell me I look great (compared to their imaginative dread), and some actually tell me I look better than they expected. Along the line I continue to recall Steve McQueen in "Papillon" as he sticks his head out of his cell in a French prison and asks the adjacent prisoner "how do I look?" to which the other prisoner, seeing him, dirty and emaciated, replies "you look good". All things are relative.


Daily ritual.


I wake up, unable to roll to my left in order to check the time on the clock, instead relying on the level of light to inform me that day has broken. My efforts to swing my legs to the floor, giving me the impetus to push to a sitting position provides a signal to Amy, who helps me rise. She gets up, rounds the bed and grabs my robe, knowing I will visit the bathroom with profound urgency. She slips the robe first over my left shoulder, helping to ease my arm into the sleeve (I need to mention that mornings I find my left arm to be partially paralyzed, my hand clenched so tightly that my fingernails are dug into my palm and that both must be manually pulled loose in order to function, none painful yet none too pleasant), then pulling it around so I can slip my right arm through the other sleeve. Now, with her help, I try and stand up. As I rise, every  morning and more, my body racks itself with uncontrolled tension as every muscle in my body locks down. I shake, I vibrate and shutter as I hope not to seize up a calf or hamstring. Immediately afterword the ALS fasciculations amp up as if on adrenaline; worms of all sizes bumping inside my flesh trying to escape. (Maybe a snip here and a cut there would allow them to leave- I jest. Oh, if it were that simple). Meanwhile, Amy ties my robe, positions my walker in front of me and moves ahead to open doors and lift the lid. I follow, ever so slowly lest I get too anxious and tumble in a tinkle sprayed heap. To date I have yet to fail in my efforts to relieve myself in the morning- though barely.


This is the extent of my daily ritual thus far. Look for a continuation from the point where I successfully exit the bathroom. Probably later today. Now I must spruce up for my physical therapist, who will be here in 20 minutes. Yee ha. I sure wish it was rehabilitative.

Each day, close study

Some days, this day, I know I must write, however lately my mind whirls uncontrollably, inundated with profusions of confusions. Try as I may, I cannot channel Occam. Nothing is simple and no narrative can be spun with any kind of focus or propriety. Some days, this day, while words flow, content and relevance remain opaque and obscured. I can only hope to escape this conundrum and excrete even a modicum of sensibility with which to produce more than the sense of bullshit contained within this paragraph.

There we go. I don't usually post my start up psychosis, word calisthenics that appear, and are, meant to bounce around in my head until any sense can be grasped. I have never in my life been able to think so much. Most of my waking hours I spent time reacting- to situations, immediate scenarios, making decisions, choosing my directives for the day.......... None of which really requires much thinking. 

Now I have all the time in the world to think. I'm not too busy to ponder. The problem is, I am not built to ponder. I require methods and conclusions to my thought. While jumbles and jumbles of ideas and concepts bounce within my brain, my only interest is in those that have practical application. In the past, it was all I had time for.

Now I can grab at the nonsensical. Why? I don't know. Maybe this is how philosophers gather their material. Too much time on your hands? Sit down and think a lot and develop a philosophy. I might be able to break from my old patterns and adopt this idea, but I worry that nobody will have time to embrace my concepts as they deal with everyday life, very much as I did before ALS took it all away. 

So I conclude this post, still unable to identify the difference between deep thought and mental masturbation or good writing and literary masturbation, most times not really caring at all. I apologise for my lethargic pessimism- it's sizing up as one of those days.

I need to reflect

This will be brief.


From the beginning of my journey, my first priority was to appear healthy, unaffected and strong. As time has passed, the only battle more difficult has been that against the disease. A couple months from now I will be celebrating the first anniversary of my diagnosis. It is almost impossible to believe that a year ago this week I was slinging roof sheathing and installing rafters. I distinctly remember having dropped a few sheets and noticing my grip was lousy, blaming it on the gloves I wore. I never in a million years would have guessed........................

I cannot dress myself, I descend the stairs backward, I need a walker to make it to the bathroom and I am elated when I find the toilet seat up.  I'm so wobbly that when visitors come by they jump to steady me or worry my movement as if I were a toddler. I know they feel bad. I feel bad for them. To witness me now after knowing me for so many years is surely shocking. My decline is steady and obvious. 


I need people not to fret. I need people to look at me and understand that we all descend as we get older. I just want to be the best at it. I've always tried to overachieve. I've always wanted to be best, first. I've always wanted to win everything. Maybe in some strange way I'm busting my ass to achieve a goal. I couldn't wait to  grow old with the rest of mankind so I found a way to lead the pack.


I don't really believe that. I don't really revel in any of my situation. Actually, I hate it all. I wouldn''t wish my condition on anyone (except maybe Charles Manson). I hate being needy. I thought having beautiful wives and children popping grapes into my mouth while I reclined in my garden would be heaven, but I now know it to be a myth. I would rather be healthy. That said, I welcome peoples' concern, their help and their support. I expect no less then an e-mail howdy do on March 15.

Money- in the not funny category

A trip back in time.

I'm thinking 1996 or 1997.

Springtime, in fact April 1st or thereabouts, some 13 years before my diagnosis, when my kids were kids and my hair had yet to turn gray. The days when pranksters ran amok and practical jokers were in their own heyday- at least this held true in MY family, for sure.

Amy was always more creative than anyone when it came to April Fools folly. I generally forgot about April 1 until it was too late to plan anything elaborate, this year being no exception, but I did manage an ill advised concoction that backfired in my face- big time. My disadvantage was multi fold. I chose a poor subject, I used poor timing, I had no support and I'm an idiot with absolutely no good judgment at all.

At the time, I was finishing up building a house north of town. Briefly: My contract was for around $400,000 and I had prepared a payout for the homeowner that would exhaust the remaining funds of the contract, leaving $40,000 still due upon completion of the project. When I presented my paperwork to the homeowner, both he and I (though I was sure he already knew) discovered that $100,000 had been pulled from the loan without my knowledge in order to pay for the land. I had no documentation identifying the transaction and throughout the project the bank never brought the $100,000  discrepancy to my attention. The sizable deficiency made it necessary for the home owner to follow the process of re-financing his construction loan, a process that would take a month. Meanwhile, I'm holding an empty bag with which to pay a hundred grand to my sub contractors. The bank, idiots for sure, MY bank to boot, agreed to float me a $105,000 short term note designed for me to pay my subs while they modified their deal with the homeowner. At this point I should have realized none of this would ever be funny to my wife. Definitely not good ammunition for an April Fools Day joke. Somewhere deep within the recesses of my brain I knew this, but given my short time frame, my compulsive nature and my all too often not latent idiocy, I pulled a boner of epic proportions.

I knew the homeowners had been planning a trip to California for some time. They were leaving the very week of all confusion and they did not sign the proper bank papers before they hit the road. Amy knew some of the score and was none too comfortable about the whole deal. She did not know about the California trip. She knew I was on the hook for 105K. I

had already dealt the dough to my guys. This was where I found out not to be clever at all. This was a defining moment for me and the definition defined is idiot. Me. Idiot.

That fateful day I called Amy, secretly preening to myself at my cleverness, and told her we had a real problem and that I didn't know what to do. I told her that my homeowner failed to sign the re-financing papers and had headed to California with a truckload of belongings. None of this was a lie, though I, cleverly, failed to tell Amy that the belongings belonged to their son, and that they were helping him to move out there. I told Amy I had to figure it all out and then I hung up the phone. I didn't call her back all day. That evening I came home to find her extremely distraught. She asked me what was going to happen. I held on to my cleverness as long as I could, and despite all efforts to feign worry, I developed a shit eating grin, losing my composure second by second. She was not amused. She was very upset and not getting answers. She was unhappily confused, irritated as my concealment became uncontainable. I could hold it in no longer and blurted "April Fool!". She just stared at me, dumbfounded. I stared back, dumb. I knew at that moment I was in deep caca. I knew at that moment that I had pissed on a line I should never have crossed. I knew at that moment I was an idiot. I didn't know at that moment but would find out very soon that payback was a bitch. I was to soon learn that what goes around not only comes around but gains momentum. Oh boy.

She was mad when I explained it all. She never for an instant thought I was clever but she was sympathetic enough not to call me an idiot to my  face. Kind of like not telling a special needs  kid he's stupid. Eventually, she let me off the hook (or so I thought).

The next day, April 1, I think, was uneventful for the most part- until evening. Amy was done talking about my indiscretion. I was safe.

That evening I attended Taekwondo class up the road- the last of normalcy I can remember about that night. My truck was parked on a side street adjacent to the school. I finished up class and exited the building in my uniform. Things went bonzo. Ten feet out the door, someone hit me with a couple gallons of cold water. I never saw who it was. I stumbled, cleared my eyes and got hit with a full bag of flower. Do you know what happens when flour hits water? I thought so. Do you know what it FEELS like? I thought not. I never saw Amy. She has forever denied involvement. She's a liar.

All guilty parties ran for the hills. I'm sure I saw my kids as they bolted. I was a pasty mess, but I couldn't be mad. I certainly had it coming. So... I headed to my truck. In the nineties I never locked anything. Since that fateful day I ALWAYS lock EVERYTHING. I didn't look too closely at my truck as I grabbed the handle to open the door. My hand slipped. I tried again. Again it slipped and I realized the handle was slathered with Crisco. You know, the paste in a can variety. All over the handle. By now, the funny was being replaced with irritation. I was, you see, cold and wet and pasty. I looked up to see "April Fool" written on the windshield with fat Magic marker. Ok, so they got me. All I wanted was to be home. I managed to open the truck door with two greasy  hands. When you think a joke is over, never allow yourself to believe it. As I pulled the door open, I discovered some evil wench had filled the entire cab of my truck with packing peanuts. All the way up to the dash they rose. I could only see half of the steering wheel. In a panic not to fill the street with Styrofoam pellets, I jumped on/in the pile and slammed the door shut. I felt like I was riding a booster seat. I had to burrow my feet down to the pedals. I started the truck. Thank God they hadn't thought of disconnecting the battery. I looked up at the writing on the windshield and hit the wipers/washer. Bad idea. Apparently the remains of the Crisco found its way to my wiper blades. Demonic children!

I found a small ungreased area in the windshield through which to peer and managed to creep home, where I opened my truck door and unceremoniously sloughed out most of the packing peanuts onto the ground. A light breeze carried them to and fro. I later found out that Amy forced Sarah outside to chase them all down and bag them. Sarah's perceived triumph over us both was expertly executed when, the next night, we found them filling our bed in place of a cover sheet, leaves dirt and all. She got the last laugh. Backtracking, when I entered the house, cold, wet, pasty and adorned with peanut ornaments, Amy met me on the porch. While she maintains her innocence to this day, I will always remember what she said between snorts and guffaws: Money- not funny category...Packing peanuts- funny category.

I will forever remember this.

A break from luridity

I don't know if luridity is even a word- my spell check just lit it up- but if it isn't, then timidity shouldn't be a word either. Or humidity or any ity word, for that matter. If a lurid story contains no luridity than a humid day cannot be described using the term humidity. 

Terminal. Ha. End? No. A junction? Maybe. I never visited a bus terminal where all the buses gathered to die. Could say, terminal describes a form of termination, though the vast number of terminals are not the last move in the game of life, but a union coupled with another destination. Every destination has its own terminal yet the tracks never end there. They neither ascend into the clouds nor descend into the ground. They simply continue on to another terminal.

Words are alive. They are spoken and embedded in our brains. Context rules the roost and delivery can kill the rooster. I know this to be a fact. A barb can do more damage than a spear. I must say here that writing short sentences feels abrupt. The dog wagged its tail. Wow. Who cares if we don't know how fast, how slowly, for what reason............. maybe I'm more comfortable in drone mode. Go figure.

This post is an exercise in avoidance. I've taken on too much lately and am having a literary migraine. Sometimes abstract nonsense is cathartic, hmmm.... sometimes abstract is sense.

Hope springs eternal? What the heck is this? If hope springs at all, it has proven itself to have sprung, or started. Last time I checked, eternity goes both ways. Speaking of such, if eternity is truly so, then why do so many people ask the question "where do we come from?" Isn't it obvious that eternity, being forever, must run into its own ass? We must be saddled up somewhere on an endless loop. Maybe God is a cowboy, and we are riding his lasso. Is this abstract enough? 

Sometimes I scare myself with my thoughts. Often they are so peculiar as to prevent me from ever posting on a blog or even scribbling on a napkin. If ALS were a brain disease I might have slipped a paragraph or two upon these pages worthy of my dementia. As it is, I gather my strangenesses, cram them into my mouth and banish them to stomach acid. I won't discount the possibility that a burp escapes my mouth and finds itself in print. I can never say never. 

If you are still reading, I have, again, drawn you across the hot coals and into my diatribe of drivel. I always have fun when this happens, and since fun is usually screened by my reality, I really, really enjoy a smirk and a giggle, even if my amusement at the thought of a hook in your mouth is nothing more than a pipe dream. Thank you

Now I get it

Simply having to deal with ALS is, well, simple- relatively speaking- unless and until you add various complications and ailments brought upon yourself due to a progressive change in lifestyle and habit. Just as a radical change in diet can cause toxicity within the body, ALS hamstrings physical activity, weakens "flat"musculature within the abdomen allowing distention, stifles voluntary movement, destroys balance centers and replaces movement with immobility. All of this, and more, set the clock upon a shorter timeline for the de-evolution of the human condition. ALS itself can kill. Respiratory distress due to weakening of the diaphragm often requires the installation of a vent. I see more danger in the complications of ALS than of the disease itself, such as (of course) heart attack, diabetes, blood clots and (outside my realm of personal experience) stroke, pneumonia, infection, etc.


Until last week, I thought myself impervious to any malady other than ALS. Now I find myself loading up on medicine to stave off issues that have no true relationship to the underlying problem. Well, maybe there is a causal relationship, but I see it as Mussolini firing at my backside while I'm trying to focus on Hitler. What comes to mind and concerns me is the "house of cards" effect. As has been illustrated time and again with those whose health is in decline, a single ailment can be dealt with well enough, but increasing system failure complicates matters and hampers treatment of any individual ill and the patient dies. I have no interest in complicating my condition, however coming off of a heart attack, discovering diabetes and learning I'll be on blood thinners the rest of my life allows for a whole new array of artificially created pharmaceutical concoctions to gum up the plans for a homeopathic solution to my real problem. I have discovered that my medical community is adept at lobbying all efforts to treat the immediate malfunctions (provided there is treatment) and for this I am very grateful, but my underlying monster lies, not in the least dormant, beneath and around any distraction ready to pounce upon me as I am weakened. This time, I stayed alert. This time, with chemicals, I survived to fight another day. This time, the house of cards took a hit and stayed up. Next time........ well, there cannot be a next time.

I could've died but I don't believe it

A worrying sign: I'm finding myself growing accustomed to needles- large and small-, discomfiture ranging from ridiculously painful throes emanating from my left arm and shoulder when contorted wrongly, leg muscle cramps of the sort I've never before experienced, massive frustration and latent fear as I navigate my home, having graduated from door frame travel to walker assisted movement. Add to these small inconveniences blood clots, a heart attack and borderline diabetes, 2 shots a day in my gut this week and a new life filled with a growing array of medications I have disdained forever and find me, well, not exactly depressed, but pissed off for sure.

 All the things I used to do have been impossibly loaded on Amy and Rachel. Worse is the fact that I will never be happy with their efforts, however noble, because I was never really satisfied with my own. I am at once incorrigible and unsatisfied, unfair and grouchy. I wake up in the morning, need help out of bed and walker myself to the bathroom, where for now, I can still manage alone,  finding out I cannot properly brush or comb my hair. Amy tries to help, but it is not me, not my hands, and try as she may, it is never quite right. I am sure most days I did a lousy job- but it was MY lousy job. I cannot clean and deodorize my right arm pit because my left arm won't reach. Amy does a great job here as it benefits her come nighttime. In the case of arm pits, unlike my hair, I have no problems with whose hand does the dirty work.

About my heart attack- I never for an instant thought my life was in danger. It took 8 hours of a radically high heartbeat for me to be convinced that there was something wrong enough to require intervention to correct. I guess some things cannot be meditated out of existence. Next time I'll know a little more of what's going on. It took a total of 36 hours- 24 of them in ICU- to bring my heartbeat under 100. After that, I was OK. I thank myself for climbing roofs, raising walls and otherwise strengthening my ticker enough to take the strain without blowing up. I could have done without the elevated blood sugar and the passel of blood clots that remain in my lungs, though.

All in all, I feel frustratedly fine today. I'm a little dismayed that the heart attack couldn't slay the ALS, but I never expected such a thing to happen. I continue through life looking for a cure, dealing with my limitations and paying close attention to everything, now to include diabetes, blood clots and diet, medication and doctors visits.

I am closing in on the entrance to a troublesome path. I am now relegated to a sitting position, whether it be a wheel chair, a couch or a bench. I cannot dress myself very well. I don't brush my own hair and a baseball cap is just not me. I can still get a fork to my mouth but many times half the food spills over on to my shirt. I've put on weight so clothes don't fit properly- though I find out clothes only look good if you walk around in them, so style takes a seat as I do- I need to be carted around, many times being pushed past all conversation like a kid in a stroller. I know what it looks like- some messed up guy with messed up hair, droopy clothes, shoes that will never wear out, a belly and a b-cup- probably deaf and simple. All the more reason for me to get to know whoever I can, setting them straight on the part about my being deaf. Another reality- aptly pointed out by my great friend Joan, who has been chair bound for years- we are at a level where all you see is butts. I can expand upon this: I see guys butts, much more dangerous than the girls. I might have to put in for a low rider wheel chair to put me nearer the level of the fairer sex.

I'm serious as a heart attack

WOW! I really tried to cook my goose last weekend. ALS as the pre-existing king of ills, a real heart attack- knocking me down for over 8 hours before I declared to Amy: " something's broken"-, a slew of blood clots, big and small, in both lungs, a large clot running flow control from the back of my right knee and the discovery that due to my relatively sedentary lifestyle I not only brought these complications upon myself but managed to allow diabetes to raise it's ugly head from my family genetics and bite me on the ass. What an enlightening few days.

Despite all that has occurred, I am now back at my computer at  home, relatively unscathed, having exited the hospital yesterday afternoon, loaded with drugs and syringes, a walker and a pile of instructions as to how I administer these products, what I should eat, how I may behave and when I visit my doctor. I find it curious and somewhat saddening that when I was diagnosed with ALS, I went home with nothing more than a sympathetic pat on the back and a casual suggestion that I might want to consider trying a drug called Rilutek, a drug that might help, that might damage my liver and that might make me feel lousy. The last information of that day included a plan to meet with all parties who would help me prepare for my trip down the  road to the end as they helped me to be as comfortable as possible, essentially tucking me in for a long, long nap. A heart attack, treatable, is a match made in heaven for hospital staff and physicians. My chart included my pre-existing ALS, though it had no impact on the immediate problem, and as a result the only conversation of such was initiated by me. Repeatedly, I had to explain to nurses, physical therapists and others the particulars of my REAL problem. Though I sound negative, I will say that my experience at Methodist Hospital was positive. I would rate the weekend at 31/2 stars.


I plan to tell all about my hospital stay, the first in my life other than the emergency room (an area I am all too familiar with), but for now, I must prepare for a road trip to look at a van with a chair lift. I'll be back soon. For you locals, I will be searching for help to build ramps out my back door. I'd do it myself, but I have this little problem......................

So far, I'm still here.

I can't get too wordy when writing one fingered while lying, half prone in ICU, wired up like a computer server, so bear with me.

Recently, I have, rather sarcastically, considered another answer to my problems, should they turn very bad. I call it the THUNDERBOLT SOLUTION. The basic premise of such is that if things become dire, rather than melting in a hospice bed, I would be quickly struck down by a stroke, a school bus, maybe even (shudder) a heart attack. Doesn't it figure that after all my efforts to slow, stop or reverse ALS, I have a heart attack, a premature one, a failure as a courier of the Thunderbolt Solution (I'm glad about that), proving to me once again that whatever doesn't kill you makes your life miserable.

I will expand on this strange brew of occurrences soon, so don't worry about me, I have too much to say to croak this early in the game.