Who am I?

Over the years, at least a thousand times, I've heard the term 'you are what you eat.' If I were to believe this to be true, a glance in the mirror would expose a cow with pigs feet, a chicken beak, fish for wings, onions sprouting from my back, pomegranates for eyes and a green bean mane. I don't see that. 

I must conclude that I am what I read. 

Looking back on my reading selections dating to early adolescence I find quite possibly my own personal escape from the realities of life that might have slain me years ago. 

I am entirely convinced that reading is an essential building block of coherence and survival. 

I'm also convinced that when one stops reading, one loses coherence and skates along the edge of ignorance. I am to this point today. I cannot read like I did in the past because the sponge that is my brain cannot absorb any more. I can only hope that I have sucked in enough information to sustain me in my new ignorance. 

You might be interested in what a guy like me liked to read. This is not intended to be a boastful narrative, but a simple compilation of the hunger my brain has sated through reading. If you find this a boring post, I offer no apologies because recalling these stories brings them to life once again. I guarantee this to be a very very incomplete telling. 

I started young, reading fairly well at 4 years old, though preferring mathematics at the time. In kindergarten, while the other kids were napping, I practiced addition and subtraction, even touching upon multiplication. I found Dick and Jane stories boring, realizing now that I was looking for more than practice to identify words. In first grade I wrote my first story, about a dinosaur, known in 1964 as a Brontosaurus. I wish I still had it. 

I jump ahead to fifth grade, when I read "Psycho Cybernetics" (the power of positive thinking). Within a year I somehow found a soft porn book called "Candy" and read it secretly, huddled with a flashlight under my sheets at night. I can still recall all the sexual innuendo. After that, I snuck into my mom's bedroom and found she was reading "Helter Skelter." Once I found out she was done with that paperback, I snuck it out of the room and read it, again, under the sheets, at night, with a flashlight. I found the Manson book to be far more intriguing than the horny chick in "Candy." 

My reading appetite was severely curtailed due to the fact I had no access to materials interesting to me until I was old enough to search them out. I went through a period of several years, having read only a few classics. When I was 14 I read the unabridged "Robinson Crusoe," the unabridged "Moby Dick," and most of Jules Verns' classics. The best of the bunch, at the time, was "Lord of the Flies." 

From here I jump around a lot. Often I find myself reading a work of historical fiction and then going on a rampage of discovery, consuming all the factual information I can and comparing it to the details contained within the fiction. Case in point: Caleb Carr's "The Alienist" and his "Angel of Darkness." Another case: "I, Claudius" concerning the early Roman Empire.  Yet another case: "The River God" by Wilbur Smith concerning early to mid Egyptian society. 

The best way not to run this post to infinity would be for me to more briefly list my obsessions. 

On horror fiction: I have read every Stephen King book in existence, many excellent, a few okay, some not so great and lately rehashed stories, likely because he's addressed every horror concept imaginable. Peter Straub stuff, the unequaled Edgar Alan Poe, crap like "Flowers in the Attic," a dozen authors not worth mentioning........

How about Voltaire? How about Nietsche, Aristotle, Sir Isaac Newton, Galileo? How about Nostradamus?

I told you I would jump around, and I'm not lying.

I've read biographies out the yin-yang. John Adams, Jefferson, John Quincy Adams, Lincoln, Teddy Roosevelt, FDR, Truman, Kennedy, Einstein and many more. 

For a couple years, thanks to my dad, Gus Errion, I delved into physics and quantum mechanics, reading Carl Sagan (billions and billions), Stephen Hawking ("A Brief History of Time" and everything else he has written), Brian Green ("Fabric of the Cosmos", "Elegant Universe"). I've studied Bjork, Hubble, Oppenheimer. I got into string theory before super string theory took over. I tried to read Einsteins Theory of General Relativity, doing okay until I reached the limitations of my mathematics education. I probably know more about physics and quantum science than the average idiot. 

About religion: I have read chunks of the Bible, concluding that it is a written filibuster, cloudying a simple message with volumes of unnecessary contradiction and confusion. I've read the Koran, easily understood; worded correctly, the Koran could be inserted into the Bible as a handful of chapters, either quoted or ignored. I've read the Book of Mormon, concluding that the religion needs to remove the second M in its title. If you don't believe me, read the book. After having had to suspend disbelief during my torturous journey through Revelations, I had no more suspension left when reading Smiths' fiction. Maybe if I had read the Book of Mormon before the Bible, I would have seen things in an opposite way. I read many accounts on Buddhism, Judaisms, Hinduism, Shintoism and other, more obscure concepts. Nothing really grabs me as individually significant. Rather than putting all my eggs in one basket, I prefer to keep my eggs for when I am hungry.

Other stuff that has formed my brain: I have read "Mein Kampf", the "Communist Manifesto". I have read "Mao." I have read the awesome and difficult Shirer work "The Rise and Fall of the Third Reich." I have read Ian Rand's "Atlas Shrugged." Let it be known that reading all this stuff does not mean I agree with or accept any premises or concepts contained within these sometimes radical publications. 

I will lighten the load now. I've read, under duress, "Silas Marner," "The Great Gatsby" (excellent), "The Scarlet Letter"  and other school directed books. Later on I appreciated the oppression of my teachers. 

Best books? Mary Shelley's "Frankenstein" (Some of the best sentence structure ever.) Cormac McCarthy's "Blood Meridian," "The Road," (anything Cormac). Alexander Solzhenitsyn's "Gulag Archipelago," Brahm Stoker's "Dracula."

I am very tired of talking, so I need to truncate this post and take a nap. Don't for a second believe this to be even half of my reading adventures. I haven't yet begun to explain who I am with this post.  To be concluded at a later date.

Oh hell, I got a second wind. 

How about Isaac Asimov? Ray Bradbury? Robert Heinlein? Orson Scott Card? 

How about "The Girl with the Dragon Tattoo" series? How about "Sometimes a Great Notion"? 

How about I quit before Rachel passes out? Bye.



    

Informational content

Amy now has the ability to drive my wheelchair. Wait. I'm not sure she has the ability. She has access to controls tethered by a five foot cord. I'm not sure whether this is an advantage or a recipe for disaster. 

Today we attended ALS clinic. I was last at clinic 3 months ago. The purpose of these clinics is to assess my progress (or lack thereof). I see the physical therapist, the occupational therapist, the speech therapist, the breathing therapist, the social worker, the MDA representative, the mobility guru and my neurologist. To varying degrees they pick and poke and query and council. I can say that every individual I deal with is professional, courteous and friendly. I really like everyone there. I still believe I have the highest tech wheelchair of the bunch, though many of the other chairs give me a run for my money. I prefer to study the chair than the occupant. Much less depressing. 

I believe physically I'm holding my own, however some issues have come up that let me know that this battle is anything but won. My oxygen level, more accurately my oxygen movement, is now sub-par, basically meaning that my diaphragm and ribcage muscles are weakening and I cannot draw as much air as I should.  I have ordered a B-pap, quite unlike a C-pap, that will help me inhale and exhale more fully as I sleep. Apparently, those who use this device have more energy.  

I have lost 7 pounds and my doctor has suggested a feeding tube. By the end of the weekend I will make my decision on this matter.  

Amy and I asked my neurologist if he had heard of the Deanna Protocol, which he had, offering advice that I should not take anything that would affect my blood since I take a thinner.  As expected he saw the protocol as a scam unsupported by science.  I understand his position but plan to take whatever supplements I can without affecting my other medications. 

A good news point: my doctor is visibly excited about a new drug that shows to be effective in energizing mitochondria, specifically in the nerve cells, potentially offering a solution to nerve cell degeneration. Three months ago he mentioned it would be available around Christmas and if it shows itself as an effective product, every ALS patient would have access to it.  The announcement will be worldwide. Cross your fingers.

Merry Christmas to all the suckers who tune in to my blather. Be prepared for a massive post entitled "Who is Tracy Boettcher and What is Responsible for his Brain?"

Hate Mail

I've determined my condition to be a conundrum trapped within the Mediterranean Sea doldrums.  Any escape from the stagnancy is predicated upon my decline to the sea floor, sliding along the continental shelf searching for the Atlantic abyss beyond. 

I hate ALS.
I hate ALS (worth repeating)
I hate not being able to talk properly.
I hate not being able to swallow properly.
I hate not being able to walk.
I hate not being able to feed myself.
I hate not being able to scratch an itch.
I hate it when bugs, flies, mosquitoes and other insects land on me knowing I cannot swat them.
I hate that I cannot smoke a cigar because I lack the strength to draw.
I hate that my throat is ever in need of clearing, to no avail.

Mostly I hate that I have become that of which I have written.  I plan to republish a few posts from the past based upon their content and how eerily they coincide with today.  I also conclude that I was a much better writer a year ago when I could pluck at the keys myself. I'm just not particularly good at dictation. No heart, no soul.

Did I tell you that I hate the fact we have to consider a caregiver other than Amy? We've already interviewed a woman from Peru, Monica.  I believe she is very competent but I still hate it.

I will now end this post to say that this hate list barely scratches the surface. Imagine yourself in a box, unable to move your arms or legs.  That's how I feel. I promise an upbeat post prior to Christmas so as not to depress my readership. (A little late now, huh?)

A Quick Note

Recently, a system for relief of ALS symptoms was brought to our attention by a good friend. It is called the Deanna Protocol. The treatments are experimental and we understand that some people have seen a reduction in such symptoms as tremors, excess saliva, spasms and swallowing issues. One man found his ability to speak improved. The website for this protocol is called www.winningthefight.net.  As of Wednesday we started following the directives of the protocol. Primarily consisting of a series of supplements designed to combat symptoms, the regiment is fairly massive.

If I follow the protocol, which I'm planning to do, I will be consuming, along with my regular medication, over 1000 pills a month. The last couple of days the going has been rough as nausea and vomiting have pervaded each day so far. From what I understand, results should come soon. Not soon enough. I think I'll throw up now. Wish me luck.

Still mobile

I may only be able to move my right arm a few inches but it doesn't stop me from putting miles on my Permobil chair. Even if Amy has to guide my hand to the joystick (not what you think), I can propel at speeds up to 6.4 mph. If I had it to do over again I would have paid the extra money for the extra speed. 

I asked the Permobil dealer the highest mileage he had observed on a chair, and he said around 300 miles.  In a few months I have accumulated 152 miles without breaking a sweat. I can only assume that people die shortly after acquiring their chair. Either that or they don't get out much. 

I might mention that last Thursday Amy and I circumnavigated White Rock Lake, stopping for lunch, liver sausage and cheesies with Gatorade, before completing the trip. Amy had difficulty keeping up with me on her bike. I wore a short sleeved shirt and sweats.  She wore two shirts, heavy pants and a coat.  

A few things to mention involving my current condition: It sucks, I'm trapped, it could be a helluva lot worse. 

Life here in Dallas, despite ALS, despite missing friends and family, is great. I can't say enough about how well it has worked out living with Sarah and Tim, Alex and Isaac.  I might add it is tolerable to have Rachel and Amy lingering around too. Of course I'm kidding.  Unfortunately for her, Rachel will be leaving the household soon. She has found an awesome apartment and will be moving after Christmas. Amy, however, can't find anywhere to live, so she's stuck with me. 

A very important note: Sarah, my eldest daughter, is pregnant.  It gives me another reason to hang around. I've discovered that life revolves around events that make everything worthwhile no matter my condition. If she has a boy, she and Tim will be remaking "My Three Sons." If she has a girl, the networks refuse to give her a series.  Nevertheless, we'd like a girl. 

Sarah having a baby is a classic example of out with the old in with the new. If she birthed a dad, I'd be history.  

If I could get back any particular function, I would ask that I could scratch my own nose. My second choice would be to gain the ability to hug back.

Finally, let me wish everyone a great Christmas. I won't see extended family this year, the first time in at least three decades, but they need to know my heart and love still resides with them.   

A Slippery Slope

I likely possess more conveniences than the average quadriplegic. This afternoon I took a good look around our bedroom and realized that everything in the room served as an aid to my condition. I have a 40-inch Samsung LED 120 htz flat screen mounted to the wall so as to pivot in all directions. I sleep in a hospital bed butted up against Amy's hospital bed. I have a tray for my wheelchair. I have a tray that swings over the bed. There is a baby monitor located on a shelf over my head in case I become distressed. My bathroom is replete with grab bars, roll in shower, ADA approved toilet equipped with a Splash 1000 bidet seat that sprays, dries and sanitizes at the push of a button.  

Despite all these conveniences, despite all the help I get, despite the mobility my chair gives me I am trapped. I can only use the remote to the TV under specific circumstances. I cannot enter my bed, sit on the toilet or sit in the shower or anything else without the use of a pivot disc that enables Amy to spin me around as I lean against her shoulder. The effective distance I can reach with my right hand is roughly six inches.  The effective distance I can reach with my left is 0.  I cannot grasp anything. I cannot lift my left arm at all.  My left wrist is forever bent and seems to find itself protecting my boy parts. We have ordered a remote device for my chair so that under certain circumstances Amy can drive me. Often she needs to pull my arm into a position where I can operate the joystick. 

Amy does everything for me. She washes my face, brushes my teeth, brushes my hair, cleans my ears, my nose, showers me, applies deodorant (in jumbo amounts) and attends to plucking wild eyebrows, nose hairs and stray mustache hairs.  I wanted to grow my hair long and let the beard go but she insisted that people would think she did a poor job of taking care of me.  I got back at her by allowing her to cut my beard into a Vandyke, soon to be completed with mustache wax she must apply. I hope to get the wax in my stocking at Christmas.

Back to being trapped. I could give a list of all the things I can no longer do but it would be so long that I would lose my readership halfway through. Instead, I will give you a list of that which I can do, certainly much shorter. 

The following I can do: 
 Next to nothing.

See how easy that was?

A week ago I went to a psychic and healer. After Amy gave her a history of my life, she spent 40 minutes yawning and gesticulating, supposedly healing and reading me. Her conclusion was that I would rather be a surfer but that I felt a responsibility to family and friends that didn't allow time for my real passions.  She also sensed I was sad.  (No shit). Little did she know and less did she read that I did all the fun stuff in my life along with fulfilling my responsibilities.  Anybody who's been reading this post knows that my life was anything but a nose-to-the-grindstone drag. She asked afterwards if I felt anything, any improvements, which I did not, and told her so. She was interested in setting up another appointment (for $190 an hour) but for that kind of money I could buy enough heroin to create my own delusions. 

Someone once said Life is a Cabaret. I have no idea what that means. Actually, I do. If you're wondering, you might as well keep on doing so because I'm not telling you anything more on the subject! 

Someone once said Life is Like a Box of Chocolates, You Never Know What You're Gonna Get. Ain't that the shittin' truth. 

Someone once said Everything Happens for a Reason. They never claimed it would be a good reason.

Someone once said God Works in Mysterious Ways. I think he took the day off when I got ALS. 

Someone once said Life is a Highway.  I think I'm lost.

 

no more coffin, off to turkey

I am far away from the not-so-covert psychedelia that permeated my blog posts of the past. Let me make an effort to shorten the gap. My crystal ball is dull and cloudy, offering no more than gauze covered projections, muddied with the flotsam of an uncertain future.  

In less than a week we will be celebrating our Thanksgiving, bringing to mind previous turkey dinners in Peoria. Those were the best of times. I miss family in Peoria.  I miss cooking for them not only on holidays but every Wednesday night when we celebrated living at the Boettcher feast. 

I wish for everyone reading this to have an exceptional holiday season. When I look at a calendar I see it differently now. I have to ask myself what condition I will be in for future events. I ask myself how many birthdays I might celebrate.

I love food. I love preparing it, experimenting with it, chewing it, swallowing it and savoring the multitudes of flavors and textures. Unfortunately, I am having trouble chewing properly, finding food in my mouth that I cannot direct down my throat. I would guess that at some point, I will need a feeding tube drilled into my gut and stopped with a cork. Feeding me will be a snap. Enjoying the food will be a memory. Maybe the food can be chucked in my mouth and semi-regurgitated, pureed, and poured in my belly. As far as I know ALS does not take away my sense of smell or taste. That could be a good thing or a bad thing. 

Interesting tidbits from a functional quadriplegic: use more deodorant. A large part of keeping odors away from your armpits is motion. If your arms are basically limp at your sides, there is no ventilation with which to disperse any odiferousness. The worst part is that I cannot raise my arms for a smell inspection, instead catching a foulness that squeezed out and wafted toward my nose. In case you are wondering, this applies to all nether regions of my body. Don't get me wrong, I get good showers thanks to Amy.  

Happy Thanksgiving everybody! Wish I could be there running the kitchen. Bye.

Found my Coffin

I mean coughin'. Can't shake it. We have a doctor's visit tomorrow. My blood pressure is a bit high and my oxygen level is a bit low. I wonder if I can get walking pneumonia when I can't walk.  Hope not. 

Rachel will continue this blog post with a synopsis of the advantages to living in Dallas, including everything from the weather to pecan hunting (Amy is a pecan hoarder) to Jeeps and minivans, great eateries, music and family. I need to remind her to boast and post pictures of her Jeep. 

Before I go into another coughing fit let me tell you that I'm still here, nearly functionless yet happy to be with my family. It appears we are hosting Thanksgiving, where Rachel will don my Chef's jacket and help me prepare my unique recipe's for the feast. I've spoken little of my love of cooking, usually dwelling more on my disease than anything else. I'm sick of being sick, I'm tired of being tired, I've worn out my self-pity and I am choosing to provide a spark of positive to enlighten those around me, taking the focus off of myself. 

Go Rachel-
So... when dad said, "Let's post" this isn't quite what I had in mind.  Usually my job as his personal transcriptionist does not entail my personal thought process being conveyed to his adoring public. I know I don't have a snowball's chance in hell to living up to his literary prowess.  However, I am thrilled that he wants to speak of the good things in life.  I wish he would focus on these things for himself rather that for those around him, but it's a good start.  So without further ado, I begin my overview of life as a 'Texan.'
As winter draws near, I'm still a little confused as to how I am still wearing shorts, tank-tops, and driving with the top down on my Jeep.  We've only had a few days that have even felt like a true autumn.  People keep assuring me that it gets cold here, but I'm not sure they understand what cold is. And that's okay.  I think my mom has been comfortable for the first time in her life. The beautiful weather allows us to take advantage of the lake that lies just up the street.  Mom and dad can easily take the boys for a walk to feed the ducks, watch the pelicans, or play in the park that meets the lake.  This really was the perfect spot to settle.  The house is big enough that if they don't feel like going out for a day, it doesn't feel like they've been quarantined in a tiny room (something I, myself, have endured and trust me- it ain't fun!).  But if they are up for getting some fresh air, they can just leave the house without worry or provisions, and do any number of things within walking/rolling distance.  From live music at the bar up the street, to performances and exhibits at the Bath House up the block, even when they don't feel like taking a big trip somewhere, they are entertained.  And I have to say, in addition to the activities available in our neighborhood, I am amazed at the neighbors.  It's like a flashback to the 50's.  Ok, I wasn't around in the 1950's, but I read a lot and have a good imagination.  People care about their neighborhood and their neighbors.  They are open and kind, and have been welcoming since the moment we moved in, even though we are probably the loudest neighbors they've ever had.  They actually stop by and bring us food. Like, "I just made this and thought you would enjoy it" kind of kindness.  And I'm not talking just one particularly kind neighbor.  This has occurred with several neighbors.  I'm telling you right now, we need to up our game!  I need to get dad to look up some amazing recipe's and start returning Tupperware with yummy stuff in them to give back!  I have lived in a lot of places, but not even in my own neighborhood in Peoria, where I lived the majority of my life, did I have such a sense of community.  People wave and smile as you get home from work. They stop and say hi if they are out walking their dogs. It's the way communities should be.  All I can say is, good find on this neighborhood Sarah and Tim!! 

What else was I supposed to talk about....Oh yeah- nuts!  We have a giant pecan tree.  It is situated to the side of our driveway and its limbs sprawl over the house.  I didn't realize that pecans were such a big thing here in Dallas and the surrounding areas, but boy are they!  I see people collecting them from parks and roadsides all the time.  Mom is thrilled that she can go out and collect endless amounts just outside her door.  I'm glad it makes her happy.  The moment she realized that they were actual, edible pecans the crafter wheels started turning.  She stopped or at least lessened her rants about the cars getting pelted with whatever was falling out of the tree, and started looking at the squirrel food like it was gold.  Regardless of the fact that she knows next to nothing about the process, she has decided to collect as many pecans as she can (leaving them for nature would be a waste, you see).  She has big future plans for them.  What she didn't consider, however, is the fact that the phrase "a tough nut to crack" was probably coined in reference to these particular pecans.  The kitchen table is strewn with pecan leftovers.  An entire afternoon's worth of attempted nut cracking resulted in a disappointingly small amount of nutmeat (yes, it's really called nutmeat) that looks more pre-chewed than fresh out of the shell.  But never fear, mom has always been persistent and I'm sure she will find a way to utilize those damned nuts.

The last segment of my long-winded view of Dallas is the vehicle situation at the ole Boettcher plantation. So I wrecked the Jag, or more precisely the gal driving the Jeep Liberty who rear ended me, causing a four car pileup on the highway wrecked the Jag.  Seriously, it's like adding insult to injury, being hit by a Jeep Liberty.  I have been a Jeep fan for a long doggone time, but Liberty's just never made the grade for me.  They feel like Chryslers' version of a Jeep.  A Jeep for teachers and sorority girls, a tame version of a Jeep.  Now, I have the greatest respect for teachers and have many friends who were/are part of sororities.  However I'm speaking stereotypically here.  A stereotypical teacher car doesn't scream, "Outdoorsy, tough, rough and altogether bad ass, and oh, you're stuck in the muck- here I've got a winch and the power to pull you out and tow you home" like a real Jeep does.   Anyway, the Jag has been laid to rest, but never forgotten.  I won't say it has been replaced, but I now have a vehicle to drive that makes me as happy as the Jag made dad.  I'll give you one guess.  Yep, I gots me a Jeep Wrangler.  Awesome.  That's all I have to say about that.  To avoid getting over-emotional, I'm going to move on to mom and dad's new wheels.  October was a big month for vehicle purchases in the Boettcher household.  Our old van worked great for a long time.  A lift was put in it by Mike Leka back in Illinois.  It was a big ole full sized behemoth.  The lift brought dad up the couple of feet until he could drive into the back.  The hard part is that dad's new chair is pretty tall.  He would have to lean over and try to maneuver the chair forward without really seeing where he was going.  He would sit in the back of the van, so high up that his head scraped the ceiling.  I'm just saying, the bumpy roads were more than just a pain in the neck for poor dad.  Plus, mom couldn't talk to him, hand him anything, or really help him at all without pulling over.  All in all, he just outgrew the old van.  Thankfully, they were able to locate a minivan (much more to mom's taste) that was fully decked out.  Not only can you press one button to make the door open and the lift extend, but the van actually kneels, making it easier to board.  But wait, it gets better.  He doesn't have to duck, and doesn't scrape his scalp off trying to get in.  Once in, he gets to pull up front in the passenger seat.  I can't tell you how happy this makes me.  In the other van, dad was so far removed from everything going on- he couldn't see out the windows to know where we were, he couldn't hear our conversations to participate, etc. that he would just withdraw.  Trips were uncomfortable and sometimes painful, so he rarely wanted to go anywhere.  This new van has helped lessen that tendency. Yay!  Although sometimes I am sorry for mom- he always did have a pretty bad backseat driver issue, and that about him hasn't changed at all.  The only downside I can see is that the van is so close to the ground that you can hardly go over a speed hump without it scraping like crazy.  Does anyone know if you can put a lift kit on a minivan?
Ok, I think I've sufficiently babbled.  I hope this gives you a rough picture of what life here in Dallas is like.  I know dad feels it important to bleed some of his misery through this blog, and he feels it important to keep everyone updated on all the progress ALS is making.  Just know that we are in as good of a situation as we could have ever hoped for.  We are lucky to have so many people who care.  Thanks everybody.
Rachel

Hopes and Fears

Obviously, I hope to be able to survive ALS, whether it be through energy healing, spontaneous remission, God or by way of any means that come my way. I hear stories of survival, but they do not bolster my confidence mainly because they are not me. I don't believe that consequences in health or survival are in any way related to a plan, a mystery or fate. Those who are struck down by cancer, ALS, Alzheimer's, Parkinson's, or a million other maladies simply drew the short straw in life. I don't believe any good can come out of suffering and dying. 

So much for my hope paragraph. Now fear. Every morning I wake up after having dreamt, finding myself afflicted, unlike my dreams, where I am whole and functional. It is something like having Alzheimer's, relearning reality a day at a time. 

I have seen some change recently that may or may not have the ultimate desired affect. Spending the weekend in Austin, sitting for 18 hours over 2 days with Master Co, learning about Pranic healing gave me a view of the working concepts of energy healing. Amy is frantically studying the higher levels of such healing in the hopes of helping me. I owe it to her and myself to accept her help. 

As far as the creature comforts of my life are concerned, I do not go wanting. We bought a van that is much more practical for transportation. I can roll into the passenger seat and sit next to Amy. My eye gaze is a pain in the ass but sooner or later I will master it. 

My worst experiences are when I'm in public with people around me that I know. My speech is so poor that often I am not understood. I can't shake hands and I find it awkward at best to convey to someone my disability. Mostly I feel bad for them and their embarrassment. It's difficult to watch Alex play soccer surrounded by healthy walking adults. I take a drug called Nudexta to level my mood since ALS exacerbates normal emotions; it is beginning to fail. 

A last note for today: I am fairly certain my father reads these posts. I know he has access to a phone and I know he has my number. (309-635-1551) 

Dad, feel free to call anytime. I promise not to be working. I need to hear from you.

Briefly- More Later

Welcome to November- It has been 19 days since I last posted (fighting extinction), and a lot has happened since that fateful day. 

Amy is typing this which compels me to speak of her, surely embarrassing her yet giving me reason for my shit eatin' grin. 

This may not be funny but the truth is if it weren't for her I would either be a basket case or an urn dweller.  I kid you not.  My biggest fear, surpassing any related to ALS, is that she would A). Die, B). Get sick, C). Get sick of me, D). Find someone who can walk and talk, (good luck with that) or E). All of the above.  I jest.  She is the best thing that ever happened to me.  You learn of someone's mettle when they're put in a situation that is potentially down hill and untenable.  She rocks.  She also brushes my teeth, puts on my socks and powders my armpits with Chole residuals.  She feeds me onions, sardines, sushi, cheesies and on one occasion herring and wine sauce.  She must really love me.

I have much to say, but for now this is all I have time for.  I miss everyone.
I'll be back soon.

Fighting extinction

There is more than one reason that I haven't posted in nearly two weeks. First, I have had low energy during the day and fitful nights. A few weeks back I started taking Rilutek. I believe it's made me nauseous after every meal. So it's obvious that if I'm sick and tired, I spend too much time sleeping and holding off vomiting, always near a toilet. I cannot expect Rachel to type for me while I'm on the pot. Wrong and unsettling to say the least. 

Besides ALS, bellyache and general fatigue, another element related to my lack of posting is related to my new realizations as I travel to wherever I arrive. As much as I've tried, I cannot seem to comprehend that which may heal me. I came to the conclusion last week that my personal involvement in my health has been generally weak.  ALS is moving forward despite all my efforts to convince my subconscious that there isn't anything wrong at all. I must count on others to take up the torch and make me better.  I plan to be receptive to any modality whatsoever. Normally I wouldn't put all my eggs in one basket, but the problem here is that I only have one egg.  If I fumble, it breaks and I die. If someone else drops the egg, at least all efforts have been made to help me. 

Without going into detail, my functioning is diminishing on a daily basis, ranging from problems swallowing, chewing, breathing, sitting up, speaking - my hands are generally useless. My biggest fear is not dying. My biggest fear is also not dying, but diminishing to the point where I cannot physically interact without mechanical help. I wish there were a line I could identify that I could refuse to cross, but if I cannot initiate any physical activity, my fate is not in my hands.  

I have completed a living will that states I wish not to be resuscitated. I do not expect to be fitted with any breathing device that is designed to keep me alive by mechanical means. I'm not so hot on a feeding port in my gut either. I guess I need to cross those bridges when I come upon them.

Austin and Master Co

Yesterday Amy and I returned from Austin after a couple nights of adventure that included two visits with Prantic healer Master Co. Prantic healing finds itself under the umbrella of Qi'gong, an ancient Eastern healing philosophy and practice. 

Please google Master Co.  It's easier for you to do this than for me to go into details about his practice.

Normally, Master Co does not perform healings at his seminars, but in my case (I think my high-tech chair drew his attention) he performed a healing on me each night, lasting 15-20 minutes. He focused on my right arm and produced noticeable results as my arm was pain-free when lifted.  Amy is especially excited because now she can scrub my right pit without me squishing her hand. 

Today I can still raise my arm (with help) higher than I have been able to for the last several months. 

Master Co did not charge us a dime for the healings. He also asked that we email him a picture of me so that he can continue healings from home (California). 

A funny segue.  I find it strange that my hands, largely useless, are transforming into frog paws. My fingers, especially on my left hand, are rarely apart and never see the light of day. The sides of my fingers are lily-white and mushroom gray. When Amy washes my hands she comes across a dusty, dandruff of dry skin.  If my hands were active, the activity would have shed the skin like everywhere else on my body. I need to start checking other areas of inactivity for fallout.  If it weren't for Amy, I would be a non-walking, poor-talking shed machine. I thank God we have a good shower and a good showerer in my wife. I'm probably cleaner by her efforts than I ever was during my previous life. 

If you think I'm doing this on my eyegaze computer, I am (NOT). That is still a work in progress. I have determined that as long as I can speak well enough for Rachel to type, I will continue this modality as I practice on the eyegaze. 

Restless Nights

I recently discovered that I am the worlds worst somnambulist. Though my mind wants to walk, my body says otherwise, so I worm and I squirm and I spaz and I lock up all without the ability to even come close to exiting my bed. I guess it's a good thing I can't get out of bed because if I could, you can imagine and visualize the biological carnage as I splayed all over the floor. Funny, huh? Only if I keep it theoretical.

hell bent

My communication skills were never particularly well developed before I contracted ALS; now my abilities are finding convolution in a physical and psychological free fall, compressing out of existence. Today I must use a splint on the middle finger of my right hand in order to pluck a keyboard, holding my breath as I struggle to lift and drop for each letter. Very soon my arm will become too weak to lift. I could wax philosophical and implement  an approach more positive- and soon I will- but for now I bask in a fading light of telling, thankful and excited to give everybody the middle finger, turned, birding my disease.

With help

My eyegaze computer is a Mini Cooper trying to haul four and a half tons of verbage. In other words, pun intended, I can't get out of the driveway with such a load so I enlist Rachel to help me carry the majority of my mindset forward as I dwindle. 

I used to describe my battle with ALS as a downhill skid, feet splayed, heels dug into the turf, Fred Flintstoning in an effort to slow down, stop, climb, whatever works. I feel things have changed and I have a different metaphorical description of my journey these days. Picture a screw. Held in an upright position, this screw has been adorned with a drop of oil. I am in the oil. As gravity asserts itself, the oil begins to flow around the screw, slowly following the threads that direct its travel. Fred Flintstone doesn't help me any more. My feet don't dig in and I'm at the mercy of all. My only chance is to topple the screw and leap off, hopefully avoiding injury. I'm working on that.

This week Amy and I travel to Austin to listen to Master Co, trying to grasp his philosophy involving prantic healing and Qi'gong. I hope to have a personal experience with him. 

This is peculiar. My ability to post seems to be in line with my ability to speak. I've never had this kind of an issue before. It's possible that I'm in such a mood that I cannot successfully compartmentalize my thoughts, causing me trouble in opening the doors of my thinking. I'll try to muddle through anyway. 

Having ALS sucks, but outside of that, life could not be better. I have virtually every convenience known to man, loving family at every turn, an insanely gifted wife and caregiver. I desperately need to dump this disease so I can go on with my new life free of stress and frustration. My sole job is to be happy and carefree, consuming the love all around me as a medicine of my return. I need to forgive myself, to ask for forgiveness of those I wronged during my life and to forgive those whom I have held accountable for any negative experiences during my years as an adult and child.

I'm atypical both in the ALS world and the world at large. Most ALS sufferers lose muscle strength and flexibility, resulting in the inability to move due to flaccidity. My muscles scream. They are not interested in succumbing to the disease. I'm hoping my legs can frustrate the motor neuron degeneration, possibly causing ALS to fall away to insignificance. 

I believe Qi'gong, as practiced by Amy, has played a large part, along with massage, to alleviate most of the swelling in my feet. For the last week, we have seen a near miraculous improvement. I had a concerning mole on my right arm, looking suspicious these last few months. I can say without a doubt that between Amy and myself, over the last 3 days, having concentrated on eradicating the blemish, that we have succeeded in its elimination. Gone without a trace. Maybe my ALS can be incrementally broken down symptom by symptom. I dare hope. 

I love Rachel. I love that she is finding herself here in Dallas. If she feels better, I feel better. Her accomplishments are mine. Don't misread that last statement. Better, see it as love and leave it at that. I also appreciate Rachel typing this, even if it is embarrassing to her.

I will continue to spit out little eyegaze briefs. Until I master the system, I will try to find gaps in Rachel's schedule within which to insert myself, allowing me to assert myself. 

go go gopher

i bet the world at large has written me off when it comes to eye GAZE technology, rightfully so. Well, write me  in, all you doubters- I'm back. Don't fret, i plan to crawl out from under my rock and resurface with a whole new dogpile of juicy sarcasmic volcanic vitriole. As the rest of me functions less and not at all, my brain runs amuck.

hz

From my ipad

I would be pulling my hair out over the difficulty I've run into when posting with my eyes, but since I can't reach the follicles on my head I'll have to settle with tugging weakly on my beard. Meanwhile, I'll keep at it.

An attempt to blog sans hands

A COMPLEX Narative IS Not On the HORIZON. Maybe LESS Is Better

A new challenge each day

This is the first of many.

38ravel

n

A brief note

Here I sit trying to work out My Eye GAZE. I'm not doing so good :.  Watch : It may take me a minute to say what I want to say. Take my dentures out. Reposition me. Keep up the good work. Vb bear market for a cleaning i 'm looking for the phone number for a cleaning dallas   Vision Could you cut up my food in small pieces, please? Scratch my house is on fire and I can't get out. I live at Rearrange my appointment was it as good as they say? DONT,, Know

Cheater Post

This post is with Rachel's help. I have a long way to go on the eye gaze before I can flush out posts that would be interesting and complete. Meanwhile, I need to be honest with my readership and give an update on my condition. There is a good side and a bad side to how I feel. On the good side, Amy and I are working on energy healing with the idea of heading to California or Minnesota for treatment. Last night Amy found a guy who will be in Austin in September and she is attempting to arrange a private meeting. When Amy performs Qigong on me, I see some results.  This is all good. On the bad side, ALS is taking me apart. And I feel fasciculations in my gut and on my sides. It has already drastically affected my speech and is now affecting my ability to swallow and my ability to take in air.  This is likely due to a weakening of my throat and tongue and a weakening of my diaphragm.  

My left arm is now too weak to raise and my wrist is limp. I know how that sounds. Take it any way you want. Flaccid is a word that comes to mind, regretfully. I do thank the stars that it seems to be affecting just my left arm. 

I still plan to continue cleansing myself of negative aspects in my life in hopes that this will help me to fight unencumbered, using all the energy I can find, hoping all the time that this is not a last ditch effort. If I can find small improvements, big ones can't be far off. One can only hope. 
Thank you.

New keyboard and new challenge.

  I can't decide whether to visit a Chinese qigong master in California or a qigong master in Minnesota. Both have legitimate credentials. The guy in California works as a heat based healer while the Minnesota based guy has a more complex approach. This keyboard's action is tricky and fast. I'm hungry. See ya.

Effort resumption

Let there be no mistake- posting with eyeballs is tedious in the extreme. As of now I use a blink to lock in each letter, each comma,  each space, each...... Everything. The only shortcut I've found so far is a primitive form of word suggestion that simply brings up words I have used before. Not intuitive like my iphone or my ipad. No spell check, if I spell anything wrong, it is offered as an option. Capitalization within a sentence, such as in contractions, must be executed manually. Soon I will graduate to dwell technique, where I will choose letters by glance- no need to  blink. Scary stuff. I promise meat and potato writing as soon as I master my virtual silverware.

Hello again

I find myself avoiding my eye gaze, frustrated at myself mostly,  impatient and dissatisfied with my progress. Let that be my problem to solve. While I'm less than adept at the practice of typing with my eyeballs, I am now certainly (in my own feeble mind) an expert at sitting on my ass. So, what does a guy do when he can't walk, talk, feed himself, dress himself, groom himself, or scratch his own nose?? He gazes. That's it. So I continue on.  After all, in my life as I experience it these days is a desperate place where takeaways are a dime a dozen, any new talent is a welcome addition.

Round two

The learning curve for my Tobii eye  gaze communication device is complimentary to the curvature of the Earth. Please be patient.

I'm back (sort of)

Insidious never rests, even if I do. Not walking, not talking much, eyes ablaze, no tactile posting.

Testing, 1, 2, 3...

As you are about to realize very quickly, I'm not Tracy. I'm giving our new EYE GAZE computer a test run. Hopefully Tracy will be entertaining and informing you soon.
Stay tuned! 

Surrogate Blogger

Greetings everyone.
This is Rachel.  Dad has been traveling, then he picked up a cold, so hasn't felt up to blogging.  However, he does feel a certain amount of responsibility to his audience and has asked me to write in his stead.  I apologize for this.  You are all accustomed to his eloquence and brilliance, and are now to be subjected to my blather.  But, what can I say, life is unfair sometimes!

I want to tell you about dad, my perspective.  I could write about what ALS has done, what it has taken, but I won't.  I would rather tell you about who Tracy Dale Boettcher is, and what the disease could never take.  So here goes...

Growing up with Amy and Tracy Boettcher as parents was much like being raised, not by wolves, but by fellow children.  Laughter and fun were constant.  They wanted to play just as much, and sometimes more, than we did.  Some of my fondest and earliest memories are of dad sitting on the living room floor while all three kids jumped on him.  Wrestling and rough-housing, getting flipped around, thrown about (always gently enough that we don't get hurt, but rough enough to make mom gasp- adding an element of danger and fun).
Dad would leave the house before the sun every day,  strap his tool belt over his daisy dukes (later renamed "Molly Ringwalds" by my father) and physically construct a house in the blazing heat or bone-chilling cold, only to come home and find the energy to play with us.  I think about those parents who spend all day in a temperature regulated offices that come home and are "too tired" to spend any time with their children.  Makes me realize how lucky I was and am.

Dad not only made it to every event we had- whether it was a choir concert, a play, or a sporting event, he was often intricately involved in what we were doing.  I was lucky enough that he took over coaching my grade school basketball team.  When he started, we were miserable.  The nickname earned by our "gifted" grade schools' sports teams was the "Father Sweeney Weenies", and let me tell ya, we were earning that name.  Then dad stepped in.  He replaced the strict, super-organized coaches who were very intelligent but somehow were lacking in an essential element in creating a winning team.  "Mr Boettcher" came in and taught a bunch of fifth grade girls how to enjoy the game.  For the three years that dad coached our team, we went from a bunch of confused and uninspired group of girls, to a competitive basketball team that took to winning more often than not.  I still don't know how he did it.  I remember doing the same drills- layups, passing, suicides, and shooting.  Somehow he infused us with his love of the game.  No one dared call us the Father Sweeney Weenies anymore- because how much would it suck to get crushed by a Weeny?

There is also the intellectual side to my dad.  Surprising, right?!  He used to follow every profound or intelligent statement with "not too bad for a nail pounder."  Regardless of the fact that he never went to college, he is still one of the most intelligent people I have ever met.  Actually, most people I know who DID go to college couldn't hold a candle to his knowledge.  He instilled in me a love for knowledge and for debate.  I consider myself extremely lucky.  He taught me how to think about what I believe in.  (And yes, dad, I ended that sentence with a preposition- but I believe that I just don't care!)  I must say that it was interesting going to Catholic school for 13 years with a borderline atheist/agnostic at home.  But I feel like it gave me a better perspective than most.  When most kids came home and told dad about what the learned at school, let's say Noah and the Ark, most dad's would nod and smile and pat them on the head.  Not my dad.  He would proceed to ask us questions- not fact based, but thought provoking questions.  'Wouldn't that boat stink with so many animals on board?' 'How would you stop the lions from eating the sheep?' 'Did Noah and his family still eat meat, and if so, what animals were sacrificed to their hunger?' 'What did they do with all the poop?' I appreciate the fact that he didn't just come out and say that what we were being taught was wrong.  He made us think.  He made us come up with our own conclusions.  He allowed us to not be one of those people who are spoon-fed their information and when someone asks them about it, they just regurgitate it.  If we said something that didn't make sense, we were called on it and were called to defend our thoughts rationally and logically.  Thanks for that dad!

Ok, I think I've babbled enough. I'm going to go spend some time with the family now.  Thank you for taking the time to take a look inside my head.  And thank you for all the love and support- it means more than you can know.

Have a lovely day!
Rachel 

May be the last post for a while

Tomorrow we leave for Peoria and I won't have access to a computer on any kind of regular basis, and I also won't have Rachel to do the typing. 


Several days ago I met with a woman who hypnotized me in an effort to find a potential cause for my problems.  I mentioned that I would speak of this at a later date in order to give me time to assess what kind of effect it might have had on me.  I know she was a past life regressionist but I believe she found enough in my own life to provide potential clues as to the origin of my health problem. When considering mind-body healing it appears to be required to make contact with your subconscious. I'm not really sure what I think of this. I'm aware that the conscious mind takes care of few duties and that the subconscious or unconscious mind takes care of all the processes required to sustain life. I'm not so sure about the communication between the two. If you'd have asked me six months ago what I thought of this, I would have dismissed it as wishful thinking. I can't dismiss wishful thinking any longer. I suppose accepting this type of reasoning can do me no harm, and hopefully give me a better outlook on my future. 

I'm not so sure my subconscious was tapped during the therapy session. 

I had an experience yesterday that I need to share.  I laid down to take a nap and decided to try to access my subconscious and give him some shit about what's been going on with me. Knowing my personality, I didn't figure I'd get any reaction if I played the passive friend. Be aware that I was not sleeping and that actually falling asleep cut off the thought.  Okay, here goes: 

In an effort to find my subconscious, I found myself in a large room with a concrete wall on which was centered a large steel door. It was locked and dead-bolted. For some reason, any tool I might need materialized as was necessary.  The first tool I grabbed was a long straight steel bar with a flat end, similar to a railroad pry bar. I inserted the flat end between the deadbolt and the doorknob and pried until the gap between the door and the frame got wider, then I picked up a hatchet, available, and drove a couple of shims into the crack to hold it wide. I took the hatchet and put it on the barrel of the deadbolt, and grabbed a handy hammer, smacking the hatchet a couple of times until it severed the bolt. I picked up the flat pry bar and popped the door open with little resistance. Once the door was open I discovered another door facing the other way which was also locked. (Keep in mind anything I needed would materialize instantly.) I got in the forklift, equipped with a pivot that allowed me to turn the forks vertical, and rammed the door, blowing it open easily. 

Inside appeared to be a warehouse/factory. I saw no one. A walkway curved around to the left and I saw a white light near a door that was open just a crack. I proceeded to the door, swung it open and found a small room with a single desk to the left side and a door on the back wall to some other area, and me, sitting behind the desk. I was wearing a plaid long-sleeved shirt and looked a little thinner than my self/self.  There was nothing on the desk.  There were no pictures on the wall. The room was not brightly lit and devoid of any personality whatsoever. I looked at me and the me sitting at the desk asked, "What's the problem?" I said things were messed up and he was killing me and he looked back and said, "Everything is just fine." I said, "Take a look at what's going on" and he responded that everything he saw was from inside. I think I yelled at him then I fell asleep, then I woke up immediately and the entire scene was gone. I have no idea what this means, if anything. I've been trying to conjure up a repeat performance, so far to no avail. Who knows? Maybe I can get deep enough inside my own head to kick my subconscious into realizing he is destroying my body. I will continue on this quest until I get an answer I'm satisfied with. Shut up on the poor grammar. 


I hope it's not too hot in Peoria this week.

I need to post

In less than a week I'll be in Peoria. I find myself listing in my mind future events to look forward to, fearful that the voids in between give me little to focus on other than my ALS. If I could fill my calendar with museum visits, zoo visits, the aquarium, concerts and the like, I'd have less time to dwell on the obvious. It is apparent to me that filling my time with outside activities is much easier than experiencing my family without being able to partake in the experience. If I see kids playing in the park I have no burning desire to join them. If I see Alex or Isaac playing in the living room, all I can do is watch and cheer them on. Outside of listening and observing, my hands are tied. I need to do a better a job of integrating myself into my family and cast aside self-doubt and self-loathing.  I'm working on it.


Thursday I spent seven hours or so with a therapist with the idea of identifying issues in my past that may have a connection with my condition today. At a later date I'll elaborate on the events once I draw my conclusions as to its effectiveness, and as to whether I'm enlightened by the experience. 


Friday I visited the pain management clinic and got exactly what I was after, Percocet. To date it is the only legal remedy to my nightly pain. I now have a three month supply and plan to schedule dual x-ray shots, one in each shoulder, to hopefully help combat the pain, possibly frozen shoulder or an unrelated ALS issue involving my musculature. 


I have yet to receive my eye-gaze computer but I've been told I will receive a loner before I come to Peoria. I'll probably leave it at home unless it has a bracket for my chair. 


I look forward to seeing everybody next week.

About vegetables

I'm going to give you about as much information as you will get from a caramelized onion, translucent yet not transparent. There is no advantage in my telling you every minute detail involving that which I'm going through each day. Besides, I don't think too many people are interested in the individual scat of my daily rituals. I do, however, feel it is necessary to give credit where credit is due, and that is to Amy, who, without her daily help and love, I would find myself at the mercy of a caregiver, an option that is really not an option. 

I'm sure many out there have wondered exactly what I can do and what I can't do, and I'm going to give you some details, leaving the rest to your imagination. Let me give you an example.  I can't reach high enough to comb my hair. You can take it from there.

Each morning, Amy wakes when I do and begins a ritual including taking the splint off my left hand, physically spinning me out to a sitting position on the bed, laying out clothing for me to wear that day, slipping my underwear over my ankles, followed by my shorts, reversing a button-up shirt and pulling my hands through the arm-holes, and flipping it over my head.  She buttons the shirt and on the count of one-two-three, she helps me stand up. These days, my balance has to be a conscious effort while my tendency would be to fall backwards. She holds me by my shirt to help my balance and with my other hand pulls up my underwear and shorts. Oh yeah, before all this she takes my other underwear off.  The wheelchair has been pulled up to within six inches of my feet and with a rocking motion I transfer weight from left foot to right in order to move into position to sit. Because my right arm is so stiff and soar I cannot operate the controls of the chair, so Amy extends the foot pedals and helps me guide my hand to the proper position of the joystick. I've been getting therapy on my right and left arms and any residual pain is worse in the morning. I manipulate into the bathroom, six feet away, where Amy uses an electric toothbrush to brush my teeth, holds the water up for me to swish and spit. I can't hold the cup up myself anymore. She then dampens a washcloth and cleans my face. Finally, she pulls out a water bottle and soaks my head so she can brush my hair. My only complaint in the morning is that I come out with my hair looking a little bit like Adolph Hitler. 

She showers me. Let that be enough said. 

I have a finger condom on my joystick wrapped in a rubber-band because my thumb is weak and slips off without the extra texture and grip. I can still drive, and I keep telling myself that before this is all over I'll be driving a car rather than a wheelchair, and that car will be my Jaguar. 

Hope to see a lot of people at Tower Park. Remember, it's free! 

Hi folks, it's Rachel.  Dad's insisting that I put my two cents in... so here goes.  It's a little nerve-wracking writing on dad's blog, knowing how many readers he has, and knowing the literary excellence they've come to expect from him.  I don't pretend to have as strong a grasp on the English language as he does, hell, I can hardly spell the words I do know (God bless spell-check). No one can put together a compound sentence like Tracy Boettcher.  I'm just glad that I can help him out from time to time.  Let me just say that regardless of what this bastard of a disease has taken from him physically, it thankfully has left his mental faculties. I fear that people who haven't seen him since the pre-wheelchair days will assume he's lost his personality as well as his dexterity.  Let me tell you people, it just isn't so! He's still dad.  He's still one of the strongest, most intelligent, funniest, caring people I've ever known.  The other one of those is my mom.  Dang, I'm lucky.  Thanks to everyone for your support, emotional or otherwise.  Ok, that's all I got.  Have a fabulous day!

Sorry I've been busy

I apologize for it having been a whopping nine days since my last post. It's not that I don't have a lot to say, it's just that I don't have a lot of time with Rachel in order to get the messages out, primarily and thankfully because she is now gainfully employed and has a life outside of me. I see that as good and bad because I rely so heavily on her to help me with a million things and I lose security she gives me especially in the pool. I guess I'll just have to get by with Amy (kidding). Nobody can replace Amy.


Yesterday I received my new Permobil Power Wheelchair, which is essentially the same as the one I have been borrowing from the MDA. The difference, though, is the same as comparing renting a Ferrari and owning one.  I'm still waiting for my eyegaze computer, which will hopefully show up before I head back to Peoria in the first part of August. More about that later.


I've been messing around with different drug combinations to see what would give me the best nights' sleep and have yet to determine which way to go. I'm afraid that my options may be to get a drug strong enough to knock me out or to deal with the problems that I have without putting myself to sleep with something like Morphine. It's unlikely I'll be able to use the latter because no one is stupid enough to give me Morphine, anyway. Guess I'll try to figure out something more reasonable.


As of late, after having read the Healing Codes, I have been including a mantra spelled out in the book that if repeated time and again over 4-6 weeks may essentially cure me of my ALS. Below is my mantra:


I pray that all known and unknown negative images, unhealthy beliefs, destructive cellular memories, and all physical issues related to ALS be found, opened, and healed (fixed, repaired, dumped, incinerated, obliterated) by filling me with the light, life, and love of God (whatever). I also pray that the effectiveness of this healing be increased by 100 times or more. 


Another mantra I repeat, as spelled out in a Qigong literature:


I am perfect health.


You can imagine my elation at finding such a brief mantra, easy to remember, easy to repeat, and time effective. Nevertheless, I still say the healing code mantra dozens of times a day.

I plan to try to find an acupuncturist here in Dallas, maybe with some Qigong experience, hopefully not too expensive because my insurance doesn't cover this stuff.


I can already hear the moans and groans of the Western people who read this post and think that I am desperately grabbing at straws, but the bottom line here is drugs and physical therapy are not going to cure me.  I use the Western medicine philosophies to help me feel more comfortable as they use their concepts of nursemaiding the dying, while in reality their only help for me is in signing prescriptions for wheelchairs, eyegaze computers, wrist splints, drugs and other services not available to me in any affordable sense without their help in convincing Medicare I am a lost cause and deserve all the comforts available.


I will seek every physical aid I can find and then I will knock this disease out of my body and have a whole bunch of stuff to play with as I physically recover to normalcy.


Now, Amy and I are heading to Peoria on August 1st, spending the night in Memphis on our way north, arriving, obviously, on August 2nd. Our primary reason to come back is to get out of the heat in Dallas and enjoy the cool summer of Peoria. If you believe that, you haven't been following the weather report. You see, here in Dallas I can get in a swimming pool any time I want, the air conditioning rocks and I don't have a job. Anyway, the real reason we're coming up is to go to Tower Park Music Festival in Peoria Heights; Friday night Nick will be playing with Paige in their band, as of this Friday, still called the "Paige DeChausse Band" (that may change). I plan to be at the festival Friday for most of the music. I think Nick and Paige play at 7:30pm. Saturday, the second day of the festival, Nick's band, Drivetrain, headlines around 9:00pm. Sunday we will be traveling to Ottawa, IL for Riverfest where Paige and Nick headline around 9:00pm.


We have no particular plans for breakfast, lunch, or dinner but hope to see some people at Tower Park Friday or Saturday. Please come out and see me, I'll be the guy in the big black wheelchair lolling to the left.  Don't be afraid if I speak in tongues, all this mantra stuff is beginning to transendentalize my psyche. Oh, by the way, we have some bank business to clean up while we're in town. 

I'm tired of talking, Rachel's tired of typing, and the world has better things to do than to continue to read this blather. See ya.

Happy Anniversary

Today marks the first year anniversary of this blog. I had no idea at the time that I would even continue it for more than a month and I certainly had no idea I could be so wordy. As of this writing, I have had over 50,000 views, have written over 100,000 words and have had views in 72 countries. For some strange reason, Russia falls into second place behind the USA. 

It has been some months now since I've said anything about what we're really doing to combat this disease. That's likely because I'm not really sure about what I'm doing at this point. I'm on drugs to level my mood, to control my diabetes, to lessen my spasms, and to relieve pain in my right shoulder. I'm also on a blood thinner to prevent blood clots that would give me problems like I had New Years Eve.  Despite all these drugs, whenever I wake, whether it be in the morning or after a nap, I find myself somewhat paralyzed until I put out a monumental effort to relax myself. Before that, my hands are claws and my ever-lengthening fingernails dig into my palms. When I had this problem with my left hand only, I could use my right to pry my fingers straight and pry my thumb away from my hand. Now both hands react the same way and the task is more difficult. I have begun physical therapy on my right shoulder to increase my presently minimal range of movement in an effort to push the pain away. 

To be honest, I can't say that I have not had some improvements in some aspects of the disease.  When I concentrate in some instances I can stand up without help. This action was considered revelatory to begin with.  I'm not so sure it's as significant as I thought. I'm sure to take some shit for this statement. Sometime within the next couple weeks, I get my new chair, a Permobil Power Chair similar to the one I'm borrowing from the MDA.  Hopefully soon thereafter I'll receive my eyegaze computer. I've already qualified through Medicare for both and our supplemental insurance will pick up whatever Medicare doesn't pay. It's somewhat discouraging that all of these devices are relatively easily paid for by insurance. I guess ALS has its advantages. 

In earlier posts I had mentioned a book that I had been reading called "The Healing Codes." I'm still reading. I feel bad for Amy because I just can't get myself to plow through repetition even though I'm aware that it may be a way to combat this disease.  Both she and Rachel have finished the book and learned the methods that may help me. Essentially, the concept revolves around dealing with negative images and destructive cellular memories, putting positive experiences into play that could help clarify the responsibilities of the subconscious and to put it on the right track, prior to ALS.  Hopefully some of this will get through my thick skull and help me relieve myself of my burden. 

Soon, I will be spending a day with a hypnotherapist in order to delve into my past and try to find an identifying event that may have started all of this stuff in motion. She specializes in past life regression, something I have a hard time swallowing. If I were to even consider information from the past through other lives, the only way I could see it as even minimally possible would be if information or memory could somehow be drawn from DNA past down from generation to generation. Maybe I'll get a clue from an old uncle or great-great-great grandfather.  Please don't judge, that's been my job my whole life, and I think I've been pretty good at it. Anyone reading this can be a skeptic- I don't have that luxury. 

I need to finish this post by saying that it is really great that Rachel can type this for me, but I will also say that I have difficulty dredging my brain for the obscure and insane posts that have been found previous. Prior to my having her type for me, I could labor over the keyboard, the thoughts and odd literature could fall out of my head like a rain from the sky, whereas now, my musings are an impaction within a tooth in my jaw, cemented to bone, and absolutely obdurate, better yet, patient, waiting for that eye gaze to extract all the shit.  

I am as strange today as I was the day I started writing these posts, I just need to get back to the means of expression, the sloth-like production, the effortless spew that I've always enjoyed. Be patient with me until then while I write like any other idiot who writes, sorry to say because I have a proxy typist 

Siri doesn't work on blog posts

In the back of my mind I had the thought that maybe my new I-phone, particularly Siri, might offer some answers to questions nobody else has had.  While I still love my phone, Siri has been a disappointment. She deflects direct questions and answers with questions of her own.  I give her more latitude because she is a female. Don't ask me what female is in cell phone terms because I have no idea, unlike our Garmin, which, when set to female voice is definitely a bitch.

Siri can't tell me why I have ALS. What a disappointment.  I think because of this, I'm going to dump all of my Apple stock. Oh, wait, I don't have any. 

On a more serious note, I have found that the only way to get a good night's sleep is to take a Percocet before I go to bed to relieve pain in my right shoulder and provide a cushion between reality and sleep fantasy. My dreams are definitely better on Percocet.  While I'm not really a drug-head, there are products out there that allow me to be able to cope with all this crap. I didn't take a Perc last night and as a result my dreams were choppy and distressing, waking me up periodically full of anxiety.  Amy has to put up with me on these nights and consequently gets as little sleep as I do.  

On a less serious note, Nick and Paige played at the White Rock Sports Bar & Grill last night and killed it.  To those of you who don't know what 'killed it' means, I think it means they did good.  I managed to stay the whole night and if it weren't for my neglecting to take a Percocet, I could have slept til morning. Tonight they play in the backyard and around the pool.  I'm already distressed that they'll be leaving tomorrow morning for Austin. This blog post is a breeze with Rachel doing the typing. I spent a lot more time correcting stuff, finding it increasingly difficult to operate the mouse. Where the hell is my Eye Gaze?

 

Back Again

To begin with let it be known that I am not typing this. Rachel has been so kind as to be my proxy typist. Also let it be known that whatever I say, she writes, without interference or unasked for editing. The words will be spelled correctly because I have spell check.


Happy 4th of July (belated).

As of late it is extremely difficult for me to type because my right arm feels like it weighs a thousand pounds. Even when I get my eye gaze it will take a while to learn how to use it properly. Rachel can nearly type as fast as I think. It's freaky. I mean really freaky. 


I'm not going to dwell on what's going on with me, I think everyone pretty much knows what's happening. If I have any major developments, good or bad, you'll be the second to know.


How about I do something as stupid as to describe my house, built in 1962, when I was 4, a house I lived in until halfway through 3rd grade.  I have no idea how I can describe the architectural details with a memory of an 8 year old. I have not been in that house since then. 


Here goes: The house was a typical 3 bedroom ranch, easily found in nearly every tract neighborhood in the country. 


Third grade recollection: 


The house had a single stall garage on the left end, 8 foot wide by 7 foot tall overhead door in the front and a 3 foot 0 inch service door in the back. If you recall, at one point, on a dark day in (maybe) 1965, the overhead door was nailed shut and I helped my mom drag my dad out the service door out the back. 


The front door, generally centrally located, entered the living room to the left side, a coat closet behind the door as it swung open, allowing for a telephone niche beyond. At the opposite end of the room stood a Zenith tv. An old coffin stereo could be found against the center wall of the room, along with a handful of albums, amongst them, my favorite, Roger Williams (You Can't Rollerskate in Buffalo Herd). On the other side of the center wall was the kitchen and eating area. To the left of the eating area was an opening to a small family room, where my mom did all her ironing. Behind the family room was the laundry/mud room and entrance to the garage. The only way into the crawlspace was gained by pulling the landing away from the door. I know this because at least one time the entire family had to dive into the crawlspace during a tornado. 


Adjacent to the tv, was the hallway to the bedrooms. The first door on the right was my bedroom. The door straight ahead at the end of the hallway was my sisters bedroom. Near the end of the hallway on the left was my mom and dad's room. Coming back down the hall toward the living room was the bathroom. If we had a second bathroom, I never saw it. In fact, I'm sure we had only one bathroom because my dad let me shave with him, he using a Schick or Gillette or whatever, then unscrewed and opened up the top to install double edged blades.  My razor was identical except that it was made out of plastic and the double edged blade was made out of cardboard.  If you wonder about furniture placement, my recollection is that my mom's bed was diagonally placed. I am certain of this because prior to one Christmas, I snuck into her room and found my tricycle in the triangle behind the bed.  Being stupid, I told mom what I found.  Enough said. 

Let me continue about this house:


How about some dry boring information about what I remember of the general construction of our house in Wonder Lake. The roof was probably a 5/12 pitch, maybe a 4. Three in one shingles.  The front of the house had brick halfway up.  The siding was a Masonite product.  The overhangs were wood, likely about 2 foot wide. The original color, I think, was tan, or maybe pale green. The garden was off to the right of the house.  My dad planted a Japanese elm in the center of the front yard, most likely because it was cheap or free. I don't know of anyone who voluntarily plants elm trees in their yard.


Back inside, the entire house had hardwood floors, 1 1/2 inch wide, and probably 1/2 inch thick, typical of the times, layed by my dad. Smooth doors, ranch casing, ranch base. 


What went on: 


I distinctly remember that the favorite implement of my corporal punishment was a hairbrush. It's hard to get the feeling. Our babysitters often used the term 'keen.' This was the house I lived in when I killed the chicken and we had it for dinner. This is the house I lived in when me and my friends hauled all the bales of hay to one location only to have the farmer load them up the next day. This is the house I lived in when my dad got mad, tore the phone out of the wall and pitched it toward the tv. I'm thankful to this day for his inaccuracy. This is the house I lived in when JFK was killed. This is the house I lived in when I learned how to take care of a pony, bridle it, ride it, feed it, and after a time, hate it. Along with responsibility, for an 8 year old, comes disdain. This is the house I lived in where my mom and I witnessed lightning passing through from window to window (or so it seemed). This is the house I lived in when a tornado picked up my sisters playhouse and tossed it into the field, consequently ending up in a tree at my cousins house. This is the house I lived in when I met my first love, Ruthy, in kindergarten.  This is the house I lived in when I was little.