I promised...........................

The good stuff.
While there is nothing good in having Lou Gehrigs disease- not a thing- there are realizations that appear, apparently borne out of the perception of terminality. (This may not have been a word before, but I present it as MY word (you are free to use it). I know, I know, LIFE is terminal. Save me. Try to think in real terms and avoid cliche. Whether I live for a month, a year or a decade, I currently possess a lethal Pacman chomping on my muscular system fueled by loads of glutamate powered motor neuron destroyers, bent on serving me up for breakfast, lunch and dinner.
That's bad. Good? I feel I've taken steps to slow down the dining process. Temporary relief has been brought about through hypnotism. At first, it seemed my stupid cognitive (conscious) mind ran roadblocks through a combination of control freak dementia and then through the process of trying too hard and wanting it to work too much. Both figured to waylay any real progress through communication with my subconscious. We've (when I say we I refer to my awesome wife, Amy, whom I trust to my core and who hypnotises me almost daily, mostly when I don't know it, likely with more success than when I stupidly intervene) had success on a few occasions when relating to "controls" or simply my perception of my brain control panel. I see the mind as the user and our brain as the computer capable of performing only the tasks for which it's been designated. Our cognitive abilities and our conscious mind can be considered metaphorically as the surface of a ball, while the duties and responsibilities of our sub-conscious mind represent the area within. You may say that the brain initiates involuntary action, and this likely is true, but the brain must be tasked to initiate everything, such as hitting F4 on your keyboard to begin a process. An area of thought is that my mind might have had cause to hit control z at some date, altering the processes that prevent human error in the brain's communication regarding enzyme controls monitoring glutamate production. The easy solution would be to revert back to before the perceived anomaly occurred and prevent the "switch" being toggled that gave me ALS. If a single incident triggered this crap, a single correction might do the trick. The key is to try, nothing lost with failure. Our conscious mind is fooled and deceived, tricked and influenced at every turn. We accept preposterous concepts without question, we agree with notions brought forth by others, by environment, through guilt, fear, hope and envy without researching the roots of the perceptions. We determine our course of action with emotion and apprehension, influenced by our history, our lives and our surroundings. Our sub-conscious mind, through literal interpretation, must filter these cognitive confusions and guide our body through it all. This is why we find physical manifestations connected to stress and trauma. This is why there is a distinct connection between what we are physically and what we are mentally. Don't put all your money on the notion we are what we eat, put the serious dough on the concept that we are what we think. If stress figures into much health malady in the world, (and it does), eating a hot dog and affecting your auto-immune system likely plays a small part in the potential for disease. I'll later touch on nutrition, as I believe good nutrition as an ALS combat tool is valuable. Finding a source or cause requires my looking behind my eyes. Ultimately, the onus is on me to beat ALS. I am determined to do so. All the outside help- family, friends, drugs, nutrition to balance the body and allow my auto-immune system to devote ALL it's armies in the battle, those devoted to pray, to direct energy, to help with words, with actions, with love- provides me with the confidence, the weaponry, the guile, the conviction and the power to eradicate this intruder. All support is needed and appreciated, but at the end of the day, only I can walk in my moccasins, and only I can muster up the energy to get the ship righted.

A correction and descriptive clarification

In an earlier post I misspelled fasciculations. For this I am sorry. The primitive spell checker provided by this blog site didn't have the word..
By the way, fasciculations are described, and can be witnessed as muscle twitches; in my case, constant in my left arm and sporadic throughout my body. The little critters in my left arm, on a good (bad) day, are easily visible through a flannel shirt. I might even invest in a bikini-clad dancing girl tattoo just to be cool. She could be fat to begin with- as my arm gets skinny, so would she. (darkish humor).
A brief explanation of fasciculations: not all ALS clients are so privileged to have them. Described from my perspective, it's like having a thousand tiny demonic mice clamoring to exit my skin and disburse my being into the universe, leaving me a paralyzed husk (with a functioning brain) Too macabre? To me, too funny.
If any of you readers are curious enough to venture out to Tower Park in Peoria Heights Sat. Aug. 6 (Nick @ 9pm), I will be there to show off my twitching. It's not gross and it doesn't hurt. I promise. You can, for a dollar, touch my arm...............................

Little things (and not so little things)

So I droned on in the last post. No, you're wrong. I DID drone on. I know, I wrote it, then a few days later I read it. I find it terribly important to proof my posts within 2 weeks of posting. This way I can put can objective eye on the passage followed by putting the cat back in the bag before the whole world reads it. I consider this the absolute summit of procrastination- works for me.
So.... little things, fascinating, that I bet you hadn't thought of:
I don't use my left hand/arm like I used to. That you've gathered, I'm sure. Some obvious deficiencies are obviously obvious. I can't wave to my fans unless I introduce the Miss America wave. If you don't know what that is, ask somebody who does. It's too complicated to explain. I couldn't write well before, cursive is ancient history, printing passable. Now I literally can't write. A sluggishness and tension makes it impossible. It's a good thing my signature is a mere scribble- that skill is lingering on awhile. Another occurrence previously undefined in my knowledge base, is that the fingernails on my left hand grow unchecked. With normal work of the type I've done over the years, my fingernails have remained worn down, only occasionally trimmed in ragged fashion by my teeth. I can't chew the nails on my left because I can't manage to twist my wrist and maintain position of my digits well enough to do so. Maybe I need to enlist in a manicurist.
A bar of soap in the shower. Suddenly, slippery has taken on a whole new meaning. Consequently, my right armpit requires more deodorant than the left. You do the mime and figure it out.
On a more serious note, I need to convey that since I was diagnosed with ALS back in march, I've played the denial card as long as I could. I thought that if I could keep the symptoms under wrap, out of sight, hidden, then they weren't really symptoms. Well, while denial is a wonderful thing, it's usefulness lasts a very short time. On May 22, Amy (my wife whom everyone knows and who will be prominently displayed and credited in Godlike proportions forthwith) put on an epic fundraiser at Luthy Botanical Gardens, and I actually felt guilty that those out to see me didn't find me limping, stuttering or otherwise diminished. I almost didn't feel worthy (that's for another discussion). Now, as I slip (just a little) I am terrified that my symptoms DO show. That I DO limp or walk funny or favor my right side. So far, stuttering hasn't manifested itself, and in my case I find it doing so highly unlikely, since I'm never at a loss for words and very rarely hesitant or undecided. APPEARING screwed up right now trumps BEING screwed up. Now people will feel sorry because I LOOK pitiful. If this admission is a little hard to read, I do not apologise. I warned you way back, warts and all. (No, I don't have warts).
I promise to begin telling of our efforts and successes in dealing with ALS in upcoming posts. There is an upside to this continuing narrative. We have had success with hypnosis. Acupuncture. Energy healing. Conversation. More to come. Soon. Promise.

Symptoms

The time of onset, or physical manifestation of ALS likely falls short in identifying the source, the cause or even the beginning incident, if a single trauma, whether physical or psychological, or an accumulation of lesser events. I'd use the term"theory" if the considerations for cause contained enough data to support themselves, however most concepts are mere guesses. It is thought that a combination of stress and physical trauma over a long period of time coupled with an assumed pre-disposition for ALS increases it's potential for fruition.
I can't tell you how I got ALS. I can tell you that the neurologists I've worked with have no answer. Unfortunately, since their expertise lies in medicating my symptoms, for which there is no VIABLE medication, and providing me with a death sentence of 2 to 5 years (for which I have no use), their influence over me is virtually nil. They can't speak of alternative possibilities, such as holistic remedies, Chinese Medicine, acupuncture, hypnosis, medicinal marijuana, mega dosages of vitamins, nutritionally sound diet, yin/yang, past life regression, stem cell research outside the United States, massage therapy, acupressure, reflexology, energy healing, psychotherapy..................... need I go on................................... because their education, coupled with the Hippocratic Oath, added to the FDA approval barricade and malpractice concerns preclude them from either having the knowledge base or the freedom to make any suggestions. The words out of the mouth of Neurologist/ALS specialist Dr. (Ms.) Rowen hired to give me a third opinion-"the problem with Chinese medicine is that it doesn't cure you, it only makes you feel better...............you won't likely be walking by Christmas". This comes from a medical community offering one drug- Rilutek- that may give me an extra 3 months (is that 3 months walking and talking or 3 months a quadriplegic drooling from a feeding tube and filling a bed pan?) with the only side effects being liver failure, fatigue, cramping (more than normal?), etc., etc., @ 900 bucks a month. By and large, the medical community has been very kind in offering me help with my future needs as I travel my course. The problem is, I'm looking for a map to steer me elsewhere, and they haven't a single copy.

Finally, my symptoms. Around Christmas, I found it strangely difficult to swing a hammer over my head. My left arm felt weak and I had lost some flexibility as well. Since I'd had tendinitis in my shoulder years ago, had jammed the same shoulder tumbling off a 14' roof about 6 years ago, and had used my left to do most everything in my construction world, I didn't think it was anything serious. Months prior to this, I'd had some pain so I figured it was the awkward, over the head position that caused my problem. A week later, I found myself dropping plywood sheets due to a diminished grip. I also noticed my muscles twitching (now known as faciculating), also only in my left arm. January and February I worked around the problem, and in early March, I made an appointment with my soon to be retired doctor, thinking I had a pinched nerve. I learned a lot about what I didn't know in the ensuing weeks.
Briefly, this is how my symptoms have progressed to today: For a while, and during my first EMG, the twitching and ALS manifestation was almost entirely in my left arm. On occasion, my forearm constricts, like rigor, and I need to pull it out of it's rictus. No real pain...... a couple weeks later, at the time of my second EMG, the twitter action had cropped up in my gut, my right arm, and in my left leg. Not 24/7 like my left arm, but on occasion, like a burst here and there. Today I get bursts everywhere on my body. In early July I found myself walking funny. Again, no pain, but a jittery feeling. Almost bouncy. On steps, my knees bounce and roll. (I apologise for jumping tenses- some of this stuff comes and goes and so does my sense of then vs. now). Sometimes I limp, as my left leg is worse than the other. If I jump a couple of steps, my knees buckle. I am slower than I like. Partial paralysis makes it hard to write anything legible and virtually impossible to lift more than a newspaper. My right hand and arm have taken over the Alpha slot. My right is still strong, but I know it's not forever.
These things going on are unacceptable. I refuse to succumb to this. I will prevail, so don't jump the gun and start praying for my eternal soul........................

Me, in better times...............

Ending a long weekend, ready for some R&R, however strides must be taken to catch up

I'm still functionally retired, though the weaning process will take a while. In writing this sequence of ALS related events, I've told you before and I reiterate: Chronology is not my strong suit. Truth be told, if I were to put to print all that happens to me AS it happens, the emotional turmoil of my mind would unfold on the screen like a Jackson Pollack painting, and I'd likely scare off the majority of my readership. The concept of "tell it as it happens" is no one's friend. Getting something off one's chest best be saved for the therapist. Better to step back, take a breath and assess my emotions before I write of my personal Armageddon.
Look forward to some positives. All is not strictly gloom and doom. My situation could be a lot worse. I've learned that the world I'm connected to contains a multitude of friends and a contingent of family who've come to me in droves. People I care about, but likely short changed over the years. My reciprocal talents leave much to be desired. I have now opened my eyes to the surprising realization that I've impacted many people in ways I never knew. I am humbled by them all. I am sad that I took lightly some of these friendships and that it took ALS, and all the faithful, caring, loving, great people out there to bring things to my (meager) attention. I seriously appreciate, and will continue to appreciate the amazing efforts of my friends and family. I want all to know that I am stronger and more resolved today than I was yesterday. Quality of life certainly trumps quantity. I believe this and I live it.
OK, let it be known that only rarely will I get mushy like this. When I do, my writing devolves into cutesy passages and overused cliches. I'm more into the grit. I'm more into the complexities of the mind, the experiences of my situation. The general understanding is that ALS works on your muscles through motor neuron degeneration due to a loss of control in the production of glutamate, and that the brain is not corrupted (are they kidding?). I'm telling you it's all connected. Mind. Brain. Function (error) More on the physics of ALS soon to come. Break out your chemistry books to refresh.

Today I made a decision

About 90 minutes ago I made the decision to retire from carpentry. This does not mean I am giving up contracting, it means that I'm not likely to strap on a nail apron, cut a rafter, lift a wall or do anything related to that which has sustained me and my family for 35 years. It is a sad day for me. I simply lack the physical ability to do the work. At some point I will post a few pics showing off a few of the projects Boettcher Design, Construction can be proud of. Look for more as I add to this post. Sucks to say goodbye to something I've loved for so long.

If I Get...............................

too clever with this thing, please shoot me down. Sometimes I smudge my sarcasm to the point where it barely resembles any message I am trying to get across in the narrative. There is a fine line between clever and convoluted and confusing and my ancient high school education fails to point out when I run astray. There is also a fine line between writing intelligently and writing because one thinks he's intelligent. While I'm no dummy, I could sit on the lap of most people I know and feel perfectly comfortable. So, don't assume I'm writing intelligently because I'm intelligent or I'm writing as if I'm intelligent, or as if I think I'm intelligent. I write because I NEED to write. I write because I want to tell you things, and I write because I want you to know I'm no dummy, but intelligent? I don't know. I know chimps are intelligent. (and they can't write)

Let's back track a little

EMG- Some kind of archaic ALS testing device designed by the Marquis De Said during one of his otherworldly visits to a Hogwarts (timely reference with no particular relevance) spell class. The test is used to determine anomalies in motor neuron timing, muscle reaction and evidence of hypersensitivity following a signature pattern unique to ALS. Simply put, the test procedure begins with a 2 pronged fork, electrically charged at intervals and brought in contact with various points of flesh, designed to elicit a response such as "oh, shit!" or "WTF!" or tears, or moans, and finally, agonized resignation. This is the easy part (think- peeing on an electric fence), and lasts a mere hour. In order to avoid a mis-diagnosis, we come to part two. I like to call it "Stab me with a needle 'til I die and blame it on the ALS" test. You need a big ass sewing machine needle attached to a length of baling wire and inserted into a device that records an audio signal and provides a visual on a computer monitor within my eye shot. Let me watch the doctor (or under skilled Chicago gang refugee intern- I'll get to test #2 Chitown later) repeatedly stab my arm (about 80 times), read the outputs and note the increased activity as he washes the needle through my muscle striations. Imagine the needle as an oar in the water, then pull a j-stroke- you surely get it. Conduct this test for a few hours. Piece of cake. (Cake a year old, stowed in a tin box in your basement, rancid, furry, delicious).
So, March 16, 2011 was the day of my confirmation in Peoria. Little did I know that an EMG in town pulls no weight with the big, bitchy, neurotic ALS experts in Chicago. Little did I know that a Peoria EMG serves only as a preamble to the body of work that a big time Chicago EMG has to offer..... stay tuned for "EMG, the Untold Story" If only someone had told me.... things would have gone much differently.

Way back when.....................(redux)

 I know this is probably cheating, but I wanted to re-post this writing to see if there were any significant changes in my attitude over the months- by your view. When this was written I had very few symptoms, and now- well, you know the answer. Many probably haven't read this. Anyway, I present the past.

I was diagnosed with ALS March 15, 2011. The next day, I took a painful EMG stab test (more on that later) over a 7 hour period and gained ( not in a positive way) confirmation of my diagnosis. On March 17, I put to paper my initial thoughts. Following is the text reproduced from a Word document as it originally appeared:


This Is A Story of Descent


3-17-11 The first signs likely went by as aches and pains related to the job. A sore arm, an occasional cramp, frequently a kinked back. If I reflect, I might conclude that a first alarm, albeit minor, was having difficulty retrieving my wallet from my pocket.
I’m sure this story has been told before. Often. Likely better written. I don’t know if I’ll even make it to the end of the page. Could be I’ll feel rushed, get distracted or just plain fail to get back to it. I know if I stop for a while and return, I’ll lose the continuity of my thoughts and emotions and the reader will think someone other than myself had continued. I can assure you, only I can tell my story however poorly it proceeds.
I’ll begin with an irony. Keep in mind that irony can be funny, it can be frustrating, and it can be sad- it most certainly is ironic. About a week before “the bomb” was gently administered, I was perusing on line, searching out ailments most closely related to my symptoms which, at the time felt injury or wear and tear related. I told Amy (a prominent figure in this adventure of discovery) I had found a match to my distress. I showed her. I read the symptoms to her. She asked what I had. I said ALS. She said “you don’t have ALS”. We both laughed. How ironic. The joke’s on me. Like the song.
I will be jumping around here. Back in time, forward. A segue here or there. I have no interest in wasting time I don’t have worrying about continuity.
Let’s jump back. 33 years. A brief stay. As a young carpenter I developed numbness in my left (hammering) hand. I went to a hand guy who diagnosed me with Carpal Tunnel Syndrome. In those days the procedure for correction was to cleave the palm of your hand and take six months off work. Yeah. Sure. No way. So I lived with it all these years. Turns out I don’t have CTS. Unless I cured myself (back to that later), I never had it. Always get a second opinion. Anyway, the ensuing years have landed me on my head a few times, on my back, on my ass…… I’ve cut myself, sawn myself and even stabbed myself. I’ve clocked my head with a hammer, a screwdriver handle, the end of an extension cord, smashed my finger, my thumb, dropped plywood on my big toe and cartwheeled off a roof a few times, into a basement a couple of times. No broken bones, no fatalities. I even managed to build a few houses.
3-21-11 I don’t think I’m going to follow through with this diatribe with any real diligence. I’m afraid it will develop into a discourse on self-pity. As of now, the central effect of the disease is in my left arm, but I can feel it infiltrating my body like heavy syrup, slowly filling my limbs with degeneration. Though I’m acutely aware of my condition, there is no denying its development. Part of me is in denial, but as this thing progresses, the denial will fade and the realization will take on a life of its own- a monstrous life- and I can guess that my sadness for those around me will be replaced by the sadness and then fear, panic then terror, for myself and my condition.
Part of me wants to uproot and go away from all that I have. I think about letting my bills hit the trash can unpaid, drop my current jobs, dump the house, sell the cars, grab what money is left and live the high life while I can, but I have Amy, and I have responsibilities regardless of my condition, and I can’t leave her to wallow in all the complicated mess I’d be leaving. I don’t know how forgiving my creditors will be. I don’t know what the insurance will cover. I don’t know how long this disease will allow me to live. I don’t know how long I will be able to write my name (with either left or right hand); I don’t know how long I will be able to walk, to talk, to breathe.


If you're reading this, you made it through the rantings of a guy who faced an unknown future. A guy who googled ALS, who accepted the bleak prognoses of a dozen Western Medicine (read it as pharmaceutical driven) sites. A guy who had been given all the tools to agonize over his apparent quick exit from this world. Keep in mind it is now 4 months later, and rest assured, I am still one bad ass hombre even with a weak left arm and shaky legs. Forthcoming find what has transpired since that nuke was dropped on my head back in March. Prepare to be educated on ALS, on denial (and how to use it), on who to listen to, on who to blow off, on who to TELL off, on what to believe, on God, on energy..............
I feel I'm in a unique position to give a perspective not often found. Read on, and thanks.

After a lot of soul searching...................

This is my first post since coming to grips with ALS. While I haven't time to dive deep this morning, let it be known that the posts will be coming your way. I promise not to entrench you in gloom and doom, but to be fair, I must be honest, and I must relate events, emotions, victories and defeats as they have come and as they arrive. The research, the symptoms, the complexities of our lives. I tend toward the dramatic (I've been told), but rest assured I will be accurate- no thought or emotion veiled- sometimes clinical. There will be no spoiler alerts. Once you enter my blog, all will be revealed, warts included. Ciao