Obviously

ALS- what I can tell you.

This particular position applies only to me insomuch as only I can attest to the idiosyncrasies of my personal experiences. Much of this information is derived from "gut" instinct and has little to do with scientific conclusions. I cannot speak for others who find themselves in similar circumstance. They must make their own beds and draw their own conclusions.

Here it is : ALS is the boldest example of insidity. Is crawls inside and systematically destroys all practical functions, one after another, taking bite after bite from the psyche along the way, leaving behind its wake a tattered and beaten shell of a human being.

Or it doesn't.

Despite the physical evidence, I'm not that person. Even if I'm completely destroyed, it is not me, but my body. What I've determined to maintain is not body, but spirit. Looking at me is not enough. You must FEEL me. This is in no way to be confused with faith, or God, or afterlife. That is an entirely different conversation best left for another time. I'm talking internal shit here, not eternal. Huge difference. Huge! You'll have to wait for my explanation. Perhaps for a long time. Don't hold your breath.

I can't do much of anything, but thinking is not even close to the bullseye of my ALS focus, and as such has remained unscathed and unaffected, which Sarah just pointed out kinda sucks. She is both right and wrong, wrong as the sword lashes forward but right when the blade returns to cut the wielder as the double sided weapon provides the ultimate reality check of a clear mind within a wrecked frame.

So, it comes to this : I'm not going to live forever. Maybe infection will kill me this week. ALS is not capable of killing me without my help. In order to do so it must kill my spirit, and it is severely lacking in such skill. I'm determined not to relinquish my edge.

FYI- I don't have Lyme disease, liver problems, anything other than runofthemill issues related to my sedentary lifestyle. I know this to be true because I'm the best informed human on the planet when it comes to me. Bet on it.

The way

Status report.

I'm currently having sleep issues (yeah, I know, you've heard this song before), that may be the result of adrenal gland fatigue. That, or a nagging gut ache. That, or a problem breathing. That, or the fact that I can't move much. That, or medicine side effects. That, or no exercise. That, or bad dreams. That, or something entirely unrelated.

Enough about me. Its always me, me, me. I'm personally Sick of Me!

There is more to that statement than you may think. In the grand scheme of all things important, being sick of yourself can mean that a change is at hand (or suicide), the latter being impossible for folks of my condition. Lets hope I can implement an improvement in my self assessment.

The gut churns and I'm calling it a day.

Ukraine! Hello!

Last week an intriguing thing happened on this blog. For the first time ever, during the course of one week, I had more reads from a foreign country than from the United States.  544 reads from the Ukraine! I'm humbled by their interest. To you in the Ukraine, thank you. Drop me an email to tell me how you found me. Tell me your story. Or just say hello. Tracyboettcher@gmail.com.

Rant part two

Part two.

I don't really have a definitive answer for what works on me. While I don't do near the research that Amy does in the hunt for my cure, I have the (dis)advantage of living with the actual disease. So far, I have seen some progress in the area of diet changes. The caveat is that without the feeding tube, installed by real doctors, all the proper nutrition in the world would not have helped me survive simply because I can't swallow much of anything any more. My weight had dropped precipitously over the past two years and now enough tube food has helped me to gain some of it back.

Without the significant help of the Dallas medical community and my insurance, I would not have :

My Permobil power chair $30000
my Tobii eyegaze computer $18000
my Roho air baffle mattress top $800
my lifting recliner $1500
my PCeye $2500
my Trilogy breathing device $2000 per month
my hospital bed $?
My medicine $1500 or more per month
my Tobii chair mount $1000
my Tobii floor mount $1000
my doctor visits $?
My neurologist visits $?
My pulmonologist visits $?
My feeding tube $18000
all medical services such as emergency room visits, admitting, blood work, home health care, physical therapy, tube food, etc. $?

From the internet:

contact with the ALS community at large. A slew of advice including :

ozone therapy
natural remedies
Lyme theory
liver failure theory
prayer theory
detox theory
cannibus oil
uv light therapy
biomagnetic therapy
coconut oil
liquid magnesium
liquid germanium
massage
probiotics
chicken bone soup
Qijong
electromagnetic therapy
biofeedback therapy
accupuncture
accupressure
stomach enzymes
liver cleanse
reflexology
hypnosis
kinesiology
Edgar Cacy treatments
past life regression
Napoleon Hill
Deanna Protocol
the healing codes
long distance energy conversations

Ok. I'm tired. So you see we gain much from both the medical and holistic communities. They both need each other, and as soon as they dump their prejudices and work together we will see the bullshit from both sides be swept away with the charlatans and the bad practitioners. Only then will there be real progress. Until then, I'm taking advantage of both parties as if the lot of them are children.

So far? I'm still sick. Dang.

Rant part one

Let me get on track with a subject that is always contentious in my environment: The culpability and intention of medical doctors.

The us vs them mentality is both foolish and self-fulfilling. It negates the credibility of an entire portion of the health community much as some doctors discard the holistic approach to health without so much as a glance at its contributions to well being. Both sides to this argument are missing the point of the discussion.

Lets first pick on the doctors. They are simply drug pushers. They are totally ignorant of anything remotely related to health. They are conspirators in a game of deception who want only to rule over and perpetuate the trafficking of legal narcotics through the continuation of disease simply for their and their supplier's profit. In short, they are all liars. The whole lot of 'em.

Sounds harsh? Try this. The doctors are dumb by the design of their education. They are bound by the Hippocratic Oath. The smart ones are all natural-paths or chiropractors. The nonsense of specialization in the medical field has splintered the core of healthcare by destroying the concept of general practition. Doctors know nothing about health. They only treat the symptoms of disease.

On the other hand : Holistic concepts don't require any burden of proof. No scientific method. No vetting process. Anybody with internet access can find something that supports their idea. Even those with no scientific education can create a website on chemical or biological effects. Anything goes on line. There are more charlatans than victims. The cure is as elusive as the truth. False dichotomies are more often used than people that know what they are. Think about that!

I'm in the middle on all of this crap.

While I'm not entirely on board with the conventional medical community, with its limited scope on practical remedies and utter dismissal of nutritional alternatives to high carbs and low protein, its disregard for mental health as a key in coping with the chronic atrocities of living with ALS..... To be continued.

Hey everybody!

Home. Time to check out my eyegaze accuracy. Not good yet. Still losing words left and right. Red dot flashes and jumps even with high level calibration status. At one time on our trip I had some clarity. Let me try to get it back. Not yet.

Back for more. No. Damn.

This is getting tedious.

Maybe it's me.

If so, I'm in serious trouble.

Before it becomes untenable, let me try to articulate something worthwhile : We will be back in Peoria for the Budweiser Illinois Blues Festival over Labor Day weekend.

We will be on the road near the end of August and arrive either the first or second of September. I'm aware this is nuts, but so are we. Every trip may be my last, so we must pack them together in order to fool the grim reaper. Is it easy? No. Is it necessary? Without a doubt.

We gained invaluable information last time up. We need more of that. We also saw so many friends and family that I'm in need of round two. One visit a year simply isn't enough any more.

To those who have been enjoying some of my recipes, look for the second of ten or more of my little cookbooks to be printed soon. To those who live in other countries and are confused by all of this local banter, rest assured that the thread will end and I will return to my former self, certainly more confusing than ever.

A special shout out to my daughter, Rachel, for perpetuating my blog, my cooking and my life. Thank her at rachelboettcher@gmail.com.

Viewpoint

While it remains difficult to write using my eyegaze with forever diminishing word prediction function, I'm determined to suck it up and plow forward until I can put something of a meaty post out there to entertain my readers.

There are many ways to look at life, the least desirable from which is the ass end of the perspective of a deadly disease. Herein I lie. It is not very appealing. I suppose the ass end of most anything has its drawbacks when you study it at close range. It is time to turn the ass around and change the view, dang it.

Until my eyegaze is recovered better this is it.

Thanks

This will be brief. Eyegaze sucks. Word prediction is dropping them like spoilt eggs.

The family and friends we have seen have made our trip great. I'm still in awe at the number of people who love me. I'm humbled and a little bit sad.

In Peoria

Road post. Driving to Peoria. Itinerary is sketchy after this week. First day of public appearance will be Wednesday, August fifth at the Silver Dollar Blues Jam Reunion around eight pm. It will be great to see all the guys who were so instrumental in giving us joy for so many years and inspiring Nick to follow his passion for music. If not for them, Nick might have worked for me swinging a hammer instead of wielding an axe.

On Friday we will be at the Tower Park Music Festival to see old friends. Nick and Drivetrain hit at nine. We'll be there around six thirty.

Saturday is day two of the Tower Park Music Festival. More music, more friends. Nick and Paige and the Reverent Few hit at nine. We will be there around six.

After that? Maybe we'll hang around for a week, a month, dunnt know.