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.