This will be brief.......... We leave the house tomorrow morning to drive to Ohare, get on a plane and join Sarah, Tim, Alexander and Isaac in Orlando for a fun filled couple of days at Disney World. I won't have another posting until next week. Let me say so long for a few days by expressing that though I wasn't a huggy kind of guy in my previous life, but my present incarnation has the urge.. no, the need to hug more. I have this notion that energy flow is stimulated better through contact and empathy than through projection and telepathy. So, if you want an embrace, look me up, if you don't, try to avoid confrontation. I do, however, need as much energy as I can get my hands on, and I'm afraid of hugging the life out of my wife and kids and grand kids, so please, spare me not. I promise to ready the Right Guard-- until later, enjoy the weekend. Tracy
Wednesday, August 31, 2011
Tuesday, August 30, 2011
About my medical help
I've written about how my diagnosis was executed (interesting word) quickly and with aplomb. In a matter of days, I knew exactly what was wrong with me. No doubt. My sombrero is lifted to the efficiency of my doctors' clinical determinations.
Now, let's talk about follow up. I was diagnosed with ALS on March 15 of this year. Three weeks later I visited the Illinois Neurological Institute on Randolph in Peoria, which apparently houses the local MDA something or other. ALS sufferers number too few to have their own group, so we are lumped into the MDA under the presumed category (I'm just guessing here) of Misc. Neuro. These are good people. The staff consists of social workers, nutritionists, occupational therapists, physical therapists and a host of "ists" I can't remember. In early April, we (Amy, Nick, Gus and yours truly) participated in a "meet and greet" with most of them. They came in, explained their specialty, left some pamphlets on wheel chairs, breathing apparatus, feeding gizmos and various illuminations of defeat and despair . They upset Amy more than me because I thought they were all full of shit. I mean, all I had was a twitchy arm! Gimme a break! Not me.
Well, now, near September, things are a little less deniable. I might need advice from a physical therapist so I put in the call.
I need to emphasize that after my April get together I was set up for a visit on Aug 16 or so. That visit has been put back to mid November. I was told the doctor had over booked. Good thing I don't have a rapidly advancing, incurable neurological disorder that eats muscle tissue and destroys motor neurons!
I have had exactly 3 conversations with an INI nurse since April. One to get in contact with my staff MDA nutritionist, who is excited to have me as her first ALS patient, the second to find out my Aug. appointment had to be scrapped due to a scheduling conflict, and third to request a meeting with the staff MDA physical therapist, who probably has as much experience with ALS patients as my nutritionist. Oh boy. Can't wait. I'll probably hobble in and crawl out.
All this just to tell you what? If I had complained about every little twitch, I might've had an audience more often, but I've figured it all out on my on. They want to help, but they can't. They will address my disabilities as they manifest, but they really don't want to hear from me, they really don't want to see me and they certainly don't want to field my questions because they haven't a clue or a reply. They are only there to provide me with devices of mobility, respiration and digestion as my body weakens. That's all good and fine, but the bulk of their consolation is equivalent to a pat on the back and a sad smile.
So I take what I need and I steer clear of the INI unless I have a problem they can solve. Don't misunderstand, I think the people at the institute are great. They care about all their patients. They just can't fix them. Or me. So I fix myself, dammit!
Now, let's talk about follow up. I was diagnosed with ALS on March 15 of this year. Three weeks later I visited the Illinois Neurological Institute on Randolph in Peoria, which apparently houses the local MDA something or other. ALS sufferers number too few to have their own group, so we are lumped into the MDA under the presumed category (I'm just guessing here) of Misc. Neuro. These are good people. The staff consists of social workers, nutritionists, occupational therapists, physical therapists and a host of "ists" I can't remember. In early April, we (Amy, Nick, Gus and yours truly) participated in a "meet and greet" with most of them. They came in, explained their specialty, left some pamphlets on wheel chairs, breathing apparatus, feeding gizmos and various illuminations of defeat and despair . They upset Amy more than me because I thought they were all full of shit. I mean, all I had was a twitchy arm! Gimme a break! Not me.
Well, now, near September, things are a little less deniable. I might need advice from a physical therapist so I put in the call.
I need to emphasize that after my April get together I was set up for a visit on Aug 16 or so. That visit has been put back to mid November. I was told the doctor had over booked. Good thing I don't have a rapidly advancing, incurable neurological disorder that eats muscle tissue and destroys motor neurons!
I have had exactly 3 conversations with an INI nurse since April. One to get in contact with my staff MDA nutritionist, who is excited to have me as her first ALS patient, the second to find out my Aug. appointment had to be scrapped due to a scheduling conflict, and third to request a meeting with the staff MDA physical therapist, who probably has as much experience with ALS patients as my nutritionist. Oh boy. Can't wait. I'll probably hobble in and crawl out.
All this just to tell you what? If I had complained about every little twitch, I might've had an audience more often, but I've figured it all out on my on. They want to help, but they can't. They will address my disabilities as they manifest, but they really don't want to hear from me, they really don't want to see me and they certainly don't want to field my questions because they haven't a clue or a reply. They are only there to provide me with devices of mobility, respiration and digestion as my body weakens. That's all good and fine, but the bulk of their consolation is equivalent to a pat on the back and a sad smile.
So I take what I need and I steer clear of the INI unless I have a problem they can solve. Don't misunderstand, I think the people at the institute are great. They care about all their patients. They just can't fix them. Or me. So I fix myself, dammit!
Monday, August 29, 2011
A postscript.......................
Briefly, the previous post probably complicates what should be simple observation, and for that I apologize. I read the post several times before I hit "enter", breaking with my tradition of sending immediately and then smacking myself for missing so many edits. My change in procedure should have been seen as a red flag. I seem to have let too much out of the bag that is my mind. I am not squeamish and I am sure footed as I stumble upon my continuously changing road of discovery, but my interpretation comes off as harsh and clinical. I assure you that my attempt to put to post my inside self is a practice in process, never mastered. I will occasionally post in this manner in order to come closer to sorting out my thoughts, and hopefully my pathetic two finger keyboard technique will begin to properly translate reality (mine) to your screen.Please bear with me and take no offense.T.
Adaptation and Evolution
Adapt or die. In my case it may be better put as adapt and die. This holds true for us all. We can adapt all we want and we are still going to die. For me, the adaptation is slightly more urgent and the dying part exists on a sliding scale with little control. I hear used and I use myself the cliche term "it is what it is", all too often. Now I realize the term carries about as much relevance as "God works in mysterious ways". Neither do me any good and both dismiss the mindset that adaptation through free thought or will as fruitless. To me, fate is what you make of it and nothing more. The notion that my life, past, present or future, has been, is or will be pre-determined by any source is ludicrous. It doesn't take Darwinian theory to comprehend the evolution of the mind. We all, whether afflicted or not, evolve internally, rationally and behaviorally. The generally accepted term that evolution is blind, traveling a path of existence or extinction works as well in the micro world as in the macro. We change our minds continually, we progress through the various environs of our lives dealing with influences that shape our psyche, that form our personalities, that develop our persona. How we adapt to the various challenges presented determine our survival. If our course is embedded with elements of pre-determination or fate, our decisions are weighted with the futility of our lack of control, and our resolve is diminished as a result.
I know things happen for a reason, but the reason need not make any sense and certainly need not be fair. I'm certain I did not contract ALS for any reason other than chance. Likely my odds were elevated due to a complex combination of circumstances, but given these conditions, I could well have never picked up the disease. My situation is unfortunate, but it makes no sense to me that I was "fated" to find myself afflicted or that "someone" worked a mystery upon me that will be revealed to make sense at a later date or another existence. It is ridiculous to believe for an instant that God plucks the wings from an occasional fly, or gives ALS to an occasional guy and the justification of such acts is as weak as "He has a plan". Save me from this kind of reasoning. Remember- God didn't give me ALS. We needn't credit him with human calamity and try to justify his reasoning- we create our own calamity. We must solve our own problems. We follow our own evolutionary process and it will travel it's course toward continued existence or extinction. We are at the helm of our own ship traveling to our own destiny. God may have put us into the water, but we steer our own course.
Apologies for my diatribe- I probably have more time to think about this stuff than most readers. Many people feel they have made up their minds about existence. I forever search. Many people limit their study to information supporting their beliefs. I do not. Many people feel they know the real "truth". I do not. Truth as a term is the most "subjective" subject in the universe. No two are alike. We all search for the truth and we never find any "one" universally accepted version.
In case you didn't know, I have ALS. 50% of us don't last 3 years. I expect to be joining with the other 50% and hanging around awhile to harangue readers with my haranguing. Assume that over time I will provide varying accounts related to my experiences with folks who claim to have the way to cure me. Also expect blunt, to the point assessments of their strategies, their presentments, their success rates and their shortcomings. While I certainly appreciate all the advice I've received so far, I have yet to find any direct correlation between the advice and a cure. I continue to study what I can. Those who put their faith in whatever notion they possess must realize the faith must be in me. I have faith, to be sure, but my faith lacks the encumbrances or complications of most, and is likely sprinkled more heavily with statistics than with hope.
Contrary to what you may think, this is not a downer post for me. I am beginning to weed out the peripheral clutter in my life that induces confusion and indecision. I am beginning to see the tunnel, if not the light. I know where I'm walking and I can explore my path with my new vision. Indecision for me is worse than a wrong decision. Indecision gets me exactly nowhere. Indecision leads to apathy. Fear. I am not afraid of dying. I fear nothing on the account of death. I don't want it, ever, but I long ago made peace with myself. I owe no more than this. I will never accept death, and my history proves it's hard as hell to kill me, so I see myself traveling this road for years.
I appreciate all the thoughts and prayers and support for me, and I hope your outpouring is as medicinal for you as for myself. If you believe in the energy, in whatever form, maybe I can glean some it's power, but by and large, I'm walking alone down that tunnel, and whether I see the light at the end will ultimately be up to chance.
I know things happen for a reason, but the reason need not make any sense and certainly need not be fair. I'm certain I did not contract ALS for any reason other than chance. Likely my odds were elevated due to a complex combination of circumstances, but given these conditions, I could well have never picked up the disease. My situation is unfortunate, but it makes no sense to me that I was "fated" to find myself afflicted or that "someone" worked a mystery upon me that will be revealed to make sense at a later date or another existence. It is ridiculous to believe for an instant that God plucks the wings from an occasional fly, or gives ALS to an occasional guy and the justification of such acts is as weak as "He has a plan". Save me from this kind of reasoning. Remember- God didn't give me ALS. We needn't credit him with human calamity and try to justify his reasoning- we create our own calamity. We must solve our own problems. We follow our own evolutionary process and it will travel it's course toward continued existence or extinction. We are at the helm of our own ship traveling to our own destiny. God may have put us into the water, but we steer our own course.
Apologies for my diatribe- I probably have more time to think about this stuff than most readers. Many people feel they have made up their minds about existence. I forever search. Many people limit their study to information supporting their beliefs. I do not. Many people feel they know the real "truth". I do not. Truth as a term is the most "subjective" subject in the universe. No two are alike. We all search for the truth and we never find any "one" universally accepted version.
In case you didn't know, I have ALS. 50% of us don't last 3 years. I expect to be joining with the other 50% and hanging around awhile to harangue readers with my haranguing. Assume that over time I will provide varying accounts related to my experiences with folks who claim to have the way to cure me. Also expect blunt, to the point assessments of their strategies, their presentments, their success rates and their shortcomings. While I certainly appreciate all the advice I've received so far, I have yet to find any direct correlation between the advice and a cure. I continue to study what I can. Those who put their faith in whatever notion they possess must realize the faith must be in me. I have faith, to be sure, but my faith lacks the encumbrances or complications of most, and is likely sprinkled more heavily with statistics than with hope.
Contrary to what you may think, this is not a downer post for me. I am beginning to weed out the peripheral clutter in my life that induces confusion and indecision. I am beginning to see the tunnel, if not the light. I know where I'm walking and I can explore my path with my new vision. Indecision for me is worse than a wrong decision. Indecision gets me exactly nowhere. Indecision leads to apathy. Fear. I am not afraid of dying. I fear nothing on the account of death. I don't want it, ever, but I long ago made peace with myself. I owe no more than this. I will never accept death, and my history proves it's hard as hell to kill me, so I see myself traveling this road for years.
I appreciate all the thoughts and prayers and support for me, and I hope your outpouring is as medicinal for you as for myself. If you believe in the energy, in whatever form, maybe I can glean some it's power, but by and large, I'm walking alone down that tunnel, and whether I see the light at the end will ultimately be up to chance.
Friday, August 26, 2011
I could be wrong, but........................
Every so often I marvel at my father in law's wisdom. I would be better served to take seriously the gems he occasionally tosses my way. Actually, he throws them scatter shot and the smart people clamor for all they can get. Following is an example of his generosity:
Beer is the perfect food.
I kid you not. This statement holds more relevance for me than for others. Strange as it seems, many evidences prove the statement to be true. Before you teetotalers (tea?) get on your tall ponies, sip your caffeine laden hot drinks and consider this: Beer is a homeopathic remedy. Let me repeat this. Beer is a homeopathic remedy. Unless you are on a gluten free diet, (I hear there are gluten free beers, but they must be awful), a decent beer has it's share of barley, wheat, hops (don't really know what a hop is, but it must be a good thing if it's found in beer) and a variety of other natural ingredients. Beer is also made with good water. Lot's of times from a mountain stream.
I doubt beer guys run years of lab tests on their products. Why would they limit their product testing to a handful of volunteer guinea pigs when the entire human race is available to form an opinion? If the beer tastes good, guys will buy it. If not, the brew ends up following the path of that god awful skunky Pabst flotsam called "Red, White and Blue".
Now it must be said that too much of a good thing is bad, so drink responsibly. Anything in excess is, well, excessive.
I can hear you disbelievers getting on about how beer consumption is harmful because it can cause distention, or "beer belly". While this phenomenon occurs often, I consider it a minor side effect, and so you know it, I already have a beer belly, not from too much beer, but because ALS weakens my gut muscles and allows for more sag. That revealed, I don't give credence to such an argument against a beer.
One last thing- Drink REAL beer. Drinking a lite beer or a 55cal beer or any kind of boutique flavored beer with low sodium or low fat or low anything is like consuming children's chewable aspirin for a headache. You're just not going to get the job done.
Beer is the perfect food.
I kid you not. This statement holds more relevance for me than for others. Strange as it seems, many evidences prove the statement to be true. Before you teetotalers (tea?) get on your tall ponies, sip your caffeine laden hot drinks and consider this: Beer is a homeopathic remedy. Let me repeat this. Beer is a homeopathic remedy. Unless you are on a gluten free diet, (I hear there are gluten free beers, but they must be awful), a decent beer has it's share of barley, wheat, hops (don't really know what a hop is, but it must be a good thing if it's found in beer) and a variety of other natural ingredients. Beer is also made with good water. Lot's of times from a mountain stream.
I doubt beer guys run years of lab tests on their products. Why would they limit their product testing to a handful of volunteer guinea pigs when the entire human race is available to form an opinion? If the beer tastes good, guys will buy it. If not, the brew ends up following the path of that god awful skunky Pabst flotsam called "Red, White and Blue".
Now it must be said that too much of a good thing is bad, so drink responsibly. Anything in excess is, well, excessive.
I can hear you disbelievers getting on about how beer consumption is harmful because it can cause distention, or "beer belly". While this phenomenon occurs often, I consider it a minor side effect, and so you know it, I already have a beer belly, not from too much beer, but because ALS weakens my gut muscles and allows for more sag. That revealed, I don't give credence to such an argument against a beer.
One last thing- Drink REAL beer. Drinking a lite beer or a 55cal beer or any kind of boutique flavored beer with low sodium or low fat or low anything is like consuming children's chewable aspirin for a headache. You're just not going to get the job done.
Thursday, August 25, 2011
TDP43 and the new stuff.......................
I promised to report on the news of a breakthrough in the identification of a culprit in the degeneration of motor neurons due to an overload of glutamate. I could go into chemical detail here but would prefer to simply state that while I am hopeful this discovery expedites the process of procuring a cure, the simple fact remains that the new development holds equal significance to the identification of TDP43- years ago. Identifying a defective amino acid is a start, however it is clear that a) developing a chemical cocktail designed to correct the error, b) determining the cocktail is not toxic, c) testing the cocktail on mice, d) affecting improved glutamate production controls, e) testing the cocktail on humans, f) moving to phase 3 in human clinical studies, g) confirming a substantial improvement in ALS patients, substantial enough to warrant an FDA fast track to approval, and h) finding the drug at Walgreen's, is a decade of hard work and bureaucracy. I won't be holding my breath, but I will try to get into a clinical study group and offer to take the pill or shot or IV without reservation or hesitation. If anybody out there has pull in this matter, start tugging. My motor is running.
Here is food for thought. What if herbal tea combinations, adjusted to an individual metabolism, providing a biological balance , coupled with an organic diet and detoxification, had a positive effect on our body's auto-immune system and gave it the strength to halt or turn back the march of ALS? Why do we assume remedies must be chemical in nature? If our bodies are designed to heal naturally, and we cleanse ourselves of artificial product, why can't we correct the anomalies naturally? I have no idea if homeopathic remedies or concepts are sound, and I know why- with billions of dollars spent on cancer research, heart disease, stroke, etc., I can find very little money provided for the research of ANY natural solutions. Doctors will caution us that charlatans run amok in the fringes of health and cure, but they speak from a pulpit of ignorance. They spent no school time on alternative consideration. I propose the ALS Association, the MDA, the Alzheimer's Association, the Parkinson's Association and others promote the funding of research onto varied paths. It seems ridiculous that ALL of these organizations put their eggs into one basket, a basket that hasn't hatched a cure in decades. It is time to lend credence to alternatives. Give the sufferers more choices. Focus on health and cure rather than a pill, a side effect and a statistic.
Here is food for thought. What if herbal tea combinations, adjusted to an individual metabolism, providing a biological balance , coupled with an organic diet and detoxification, had a positive effect on our body's auto-immune system and gave it the strength to halt or turn back the march of ALS? Why do we assume remedies must be chemical in nature? If our bodies are designed to heal naturally, and we cleanse ourselves of artificial product, why can't we correct the anomalies naturally? I have no idea if homeopathic remedies or concepts are sound, and I know why- with billions of dollars spent on cancer research, heart disease, stroke, etc., I can find very little money provided for the research of ANY natural solutions. Doctors will caution us that charlatans run amok in the fringes of health and cure, but they speak from a pulpit of ignorance. They spent no school time on alternative consideration. I propose the ALS Association, the MDA, the Alzheimer's Association, the Parkinson's Association and others promote the funding of research onto varied paths. It seems ridiculous that ALL of these organizations put their eggs into one basket, a basket that hasn't hatched a cure in decades. It is time to lend credence to alternatives. Give the sufferers more choices. Focus on health and cure rather than a pill, a side effect and a statistic.
Getting ready for a trip, no, a vacation
Yes I am! Yes we are! Now that Rachel is home from the Baltic, reality knocks and Orlando, Disney World, Sarah, Rachel, Nick, Tim, Alex, Isaac and I will be converging. Oh, Amy is planning on attending as well. Forgot.
This is a trip 4 months in the making and I consider it the beginning of our "world traveler" phase in my ALS journey. I must say, though, that since my March 15 diagnosis, I have been to Chicago a few times, Dallas twice, South Haven once (thank you, love you Claire), East Peoria at least a dozen times, Pekin a few, Morton at least once, Tremont for a drive thru (not shooting) Quad Cities 3 or 4 times and Avanti's on Main St. too often to count. I'm sure I've been to a few gas stations along the way, a drive up, a drive in (no) and a deli, but by now you don't care.
You might care to know we leave Sept. 1 for Florida and return Sept. 4 (I do have a home alarm system hooked into..... well.............nothing but a loud horn). We travel to Auburn, In. for food, family and fun around the 10th of Sept., we drive to Crusen's on War Memorial to catch Nick, his band and Paige DeChausse of American Idol fame, then Rachel and I board a Qantas flight to New Zealand for two weeks. At least that's what I'm aware of so far. I tell you this because it is ever more apparent that I must compress my bucket list in order to allow more entries for the upcoming months and years. If you're wondering how we can afford these travels, we can't. These great trips are fully funded by the best kids on Earth. My kids. They never cease to amaze me. My wife has provided the genetics allowing them to be the best children ever, and those of you who know them have no doubt. I am blessed with everything.
I have only one goal next weekend at Disney World and that is to get Alex to barf on the Mad hatter Teacup ride and enjoying it. Life just couldn't be better.
This is a trip 4 months in the making and I consider it the beginning of our "world traveler" phase in my ALS journey. I must say, though, that since my March 15 diagnosis, I have been to Chicago a few times, Dallas twice, South Haven once (thank you, love you Claire), East Peoria at least a dozen times, Pekin a few, Morton at least once, Tremont for a drive thru (not shooting) Quad Cities 3 or 4 times and Avanti's on Main St. too often to count. I'm sure I've been to a few gas stations along the way, a drive up, a drive in (no) and a deli, but by now you don't care.
You might care to know we leave Sept. 1 for Florida and return Sept. 4 (I do have a home alarm system hooked into..... well.............nothing but a loud horn). We travel to Auburn, In. for food, family and fun around the 10th of Sept., we drive to Crusen's on War Memorial to catch Nick, his band and Paige DeChausse of American Idol fame, then Rachel and I board a Qantas flight to New Zealand for two weeks. At least that's what I'm aware of so far. I tell you this because it is ever more apparent that I must compress my bucket list in order to allow more entries for the upcoming months and years. If you're wondering how we can afford these travels, we can't. These great trips are fully funded by the best kids on Earth. My kids. They never cease to amaze me. My wife has provided the genetics allowing them to be the best children ever, and those of you who know them have no doubt. I am blessed with everything.
I have only one goal next weekend at Disney World and that is to get Alex to barf on the Mad hatter Teacup ride and enjoying it. Life just couldn't be better.
Wednesday, August 24, 2011
Trying out a cane today
I applaud anyone out there who has mastered (yes, mastered) a cane. Before seriously considering it's use, the cane I found in my garage served more as a martial art weapon, more like an umbrella as wielded by the guy with the derby in the Avengers series (you know, with the "hot" Emma Peel). Funny how I don't know his name. Anyway, since my cane doesn't have a blade tucked inside for swordplay, and my condition may be calling for it's practical use, I am putting aside the combat and setting it to use. (that's pronounced ' yoos').
Easier said than done............ Let me first explain that I am feeling no pain. It doesn't hurt to walk and I don't fear falling as yet but my left leg reacts as if commanded by Colonel Klink and my right is simply confused all the time. Imagine clapping and your left hand misses your right 80% of the time- you'd likely hold your left stationary and smack it with the right. Well, I've found I can't walk using such strategy. So I attempt two legged coordination with one doing a Waltz and the other performing a Samba. Believe me when I say it looks as funny as it sounds.
The purpose of a cane varies with the needs of the carrier. For me, I need a stabilizer for my left leg. I cannot hold the cane in my left had due to diminished strength, so I use my right and try to place the cane down as I lift my right leg (by present account my good one), which sounds backward, no doubt backward in the world of cane etiquette, but which acts as another support for my left. If you feel this is confusing in theory, jump on my mule and put it to practice! It's like patting your head, rubbing your stomach and whistling Dixie while chewing gum! If I get the rhythm right, move out of my way, but if I should falter or have to stop, it's like watching a one legged unicyclist. I am sure that to begin with, I will appear mentally handicapped as well as physically diminished. I fear any conversation with me might confirm the former, so my plan is to simply smile and nod and continue on my way.
I play this out as comical because it really is funny- in a demented way. I know it looks silly, a little sad, and on occasion, quite pathetic, coming from where I've been, but the bottom line is I have places to go and I will travel by any means necessary to get me there. By they way, snickering is acceptable, but outright laughs will earn you a whack on the head. Until again, T.
Easier said than done............ Let me first explain that I am feeling no pain. It doesn't hurt to walk and I don't fear falling as yet but my left leg reacts as if commanded by Colonel Klink and my right is simply confused all the time. Imagine clapping and your left hand misses your right 80% of the time- you'd likely hold your left stationary and smack it with the right. Well, I've found I can't walk using such strategy. So I attempt two legged coordination with one doing a Waltz and the other performing a Samba. Believe me when I say it looks as funny as it sounds.
The purpose of a cane varies with the needs of the carrier. For me, I need a stabilizer for my left leg. I cannot hold the cane in my left had due to diminished strength, so I use my right and try to place the cane down as I lift my right leg (by present account my good one), which sounds backward, no doubt backward in the world of cane etiquette, but which acts as another support for my left. If you feel this is confusing in theory, jump on my mule and put it to practice! It's like patting your head, rubbing your stomach and whistling Dixie while chewing gum! If I get the rhythm right, move out of my way, but if I should falter or have to stop, it's like watching a one legged unicyclist. I am sure that to begin with, I will appear mentally handicapped as well as physically diminished. I fear any conversation with me might confirm the former, so my plan is to simply smile and nod and continue on my way.
I play this out as comical because it really is funny- in a demented way. I know it looks silly, a little sad, and on occasion, quite pathetic, coming from where I've been, but the bottom line is I have places to go and I will travel by any means necessary to get me there. By they way, snickering is acceptable, but outright laughs will earn you a whack on the head. Until again, T.
Tuesday, August 23, 2011
For automatic e-mail notifications.............
Briefly,
If you want an automatic (apparently "automatic" is within 24 hours of my posting), scroll down, enter your e-mail address in box and submit. If this works for you, e-mail me at tracyboettcher@gmail.com and let me know so I can remove you from my list. Thanks, see ya! or not
If you want an automatic (apparently "automatic" is within 24 hours of my posting), scroll down, enter your e-mail address in box and submit. If this works for you, e-mail me at tracyboettcher@gmail.com and let me know so I can remove you from my list. Thanks, see ya! or not
Another day, new conviction
Going to sleep at night proves to be my most difficult task. I can read until my eyes fall heavy, yet sleep comes grudgingly. During the day I can, and do keep myself busy, therefore distracted from my ailment. Only when I fail to accomplish a task due to my frailty does my condition surface. I'm still learning to deal with my creeping deficiencies. I'm still attempting to wrap my mind around the realities I'm experiencing while refusing to believe I can't knock out the wheels propelling me in a direction I have no interest in. (preposition? bad me). I can deal with my problems if I ignore them in spurts. I can swat the psychological mosquito. I can find a distracting activity to help me forget. When I need to sleep, though, I cannot distract. I can only feel the disease coursing through me. Try as I can, the fasciculations are physically evident. I can see them, I can feel them, damn it, I swear I can hear them! Everywhere from time to time, elsewhere all the time. It's like having a biological Pacman running amok under the skin.
I would never write such a downer if I couldn't follow it with a pick-me-up. I have tried an anti-depressant (a couple months ago) and found that I abhor chemical means to mask pain and suffering more than I thought. I still have a full bottle of the stuff and won't likely pop another one unless I become insane, at which point I'll probably be more dangerous to myself than any pill could ever be, so it won't matter my actions anyway. With that thought as a backdrop, I have had some success in compartmentalizing my emotions, thoughts and perceptions- with Amy's significant help- to the point where I can essentially meditate at bedtime, or any time, putting redundant, destructive thoughts out of my mind to help me cope, or, in this case, to sleep. I have had sessions with those other than Amy who have their own version of this phenomenon, referring to it as enlightenment, (tweaked Buddhism?), Mind-Body work, Freudian influenced therapy aided by hypnosis, yin/yang............... I now understand what works for me, and am beginning to implement it as often as I can. While I feel considerable stress every day, I am able to minimize it through relaxation and meditation. I need it to be understood that the primary influence for me and the real life catalyst is Amy. She listens best. She knows me better than anyone. She speaks the truth even when I am defensive and in denial. She reads me like a book and exhibits total comprehension. Where others provide snippets of help, Amy provides the mother lode of support. Her heart is the key and that key opens up all the options I have that were previously locked up in my thick skull. She can get past my pit bull cognitive consciousness and has carved out a relationship with my sub-conscious. I feel this is just a beginning and our journey is upon a long, rocky road, but I now have help in navigating my future- our future.
The bottom line here is this: I feel more optimistic and excited about life today than I did yesterday. If this feeling holds on long enough to get emblazoned in my mind, I can ride it forever.
One last note: I have moved on from the sadness I've felt for those who follow my plight. It now makes me happy and humble that so many care for me and support me. I can now smile at the thought of you all instead of cry. A great turnaround for me.
I would never write such a downer if I couldn't follow it with a pick-me-up. I have tried an anti-depressant (a couple months ago) and found that I abhor chemical means to mask pain and suffering more than I thought. I still have a full bottle of the stuff and won't likely pop another one unless I become insane, at which point I'll probably be more dangerous to myself than any pill could ever be, so it won't matter my actions anyway. With that thought as a backdrop, I have had some success in compartmentalizing my emotions, thoughts and perceptions- with Amy's significant help- to the point where I can essentially meditate at bedtime, or any time, putting redundant, destructive thoughts out of my mind to help me cope, or, in this case, to sleep. I have had sessions with those other than Amy who have their own version of this phenomenon, referring to it as enlightenment, (tweaked Buddhism?), Mind-Body work, Freudian influenced therapy aided by hypnosis, yin/yang............... I now understand what works for me, and am beginning to implement it as often as I can. While I feel considerable stress every day, I am able to minimize it through relaxation and meditation. I need it to be understood that the primary influence for me and the real life catalyst is Amy. She listens best. She knows me better than anyone. She speaks the truth even when I am defensive and in denial. She reads me like a book and exhibits total comprehension. Where others provide snippets of help, Amy provides the mother lode of support. Her heart is the key and that key opens up all the options I have that were previously locked up in my thick skull. She can get past my pit bull cognitive consciousness and has carved out a relationship with my sub-conscious. I feel this is just a beginning and our journey is upon a long, rocky road, but I now have help in navigating my future- our future.
The bottom line here is this: I feel more optimistic and excited about life today than I did yesterday. If this feeling holds on long enough to get emblazoned in my mind, I can ride it forever.
One last note: I have moved on from the sadness I've felt for those who follow my plight. It now makes me happy and humble that so many care for me and support me. I can now smile at the thought of you all instead of cry. A great turnaround for me.
Sunday, August 21, 2011
A series of disturbances, funny in retrospect.........
Before I get into this, today I received an article proclaiming a breakthrough in the understanding of a source of ALS. I will research all available information and get back to you.
Some lines of thought point to trauma as a possible cause, or at least a contributor to the onset of ALS. With that in mind, lets explore my past, focusing on those incidents I can recall involving my cranium or any other body part involved in mayhem. I need it to be known that not once have I ever lost consciousness, broken a bone (that I know of) or spent the night in a hospital. I've taken only two ambulance rides, separated by 35 years, but never visited an ICU. I have never been declared dead and have never been given mouth to mouth after near drowning. I have, however, cracked my skull numerous times and have the remnant scars of dozens of stitches and staples. Let me explain. Don't fear the following- none of these atrocities proved to be fatal. I have never awakened in a morgue.
In somewhat reverse chronological order, as I recall:
Several years ago, maybe 2006, we were building a house. Wait. No. I am not writing a book here. I refuse to frame these incidents. If I ever write a book, you can buy it and read it, complete with fleshed out scenarios, scene description and body. For this, I strip it down to skeletal. So, I stepped across the corner of a stairwell, containing no stairs yet, but for some reason, my left foot stepped into air, I spun clockwise and dropped horizontal, back first into the hole. A 16' 2x4 spanned the opening where my head was to travel, so I broke it in half (with my head) on the way down, forcing my chin to my chest long enough to avoid bouncing it as I lit on the concrete 12 feet below. My landing was basically flat on my back, with my hammer under my right hip, which proved to give me the most lingering problem with this mishap. I bled like a stuck pig from my lacerated scalp and for a minute, after I filled my flat lungs with air, I thought I broke my back. As is me, I put all my body parts through the ringer to see if they worked. Hurt like hell, yes. Broken, no. Jim, (best working partner and friend in the world), looked down and asked if I was okay. I said something stupid and he called 911. An ambulance came, the EMT's checked my blood pressure, pretended to listen to my assessment of my condition and gurneyed me into the van, where they checked my blood pressure a second time because the first test was normal, and it had to be wrong. I tried to explain that this was not, in fact, my first rodeo. Again they pretended to listen as they duct taped me to a sheet of plywood. The rest of this is boring, so I go to another fiasco of common sense and caution.
I'm on a roof, some 14' off the ground, I'm cutting excess roof sheathing from a gable end while Jim is behind me, nailing. The saw is in my left hand and I am sawing down from the ridge. My weight shifts off center of the sheet I am sawing from and on (figure that one out) and the inside of the sheet rips free of the nails, catapulting me, teeter totter fashion, off the roof. Head first. Clutching the saw in my left hand, traveling feet in the air and lighting as follows- first, my outstretched left arm pile drives the saw into the ground. My arm bends upon impact and the right side of my forehead hits a stack of plywood, skidding the top sheet off and wrecking my glasses, followed by my lazy right hand and then my body, ending up in a heap. For some reason, I jumped up immediately without a second thought and bound up the ladder onto the roof, where I found Jim nailing away. He thought I just climbed down. I was somewhat pissed at the fact that nobody saw me go down. Kind of like the tree in the forest thing . Follow? I finished out the day and had a sore shoulder for a week. No doctor visit seemed necessary.
So, we're finishing up the day and rolling up extension cords and the like when I grab a cord that runs to a second floor window opening, but I find it's snagged on something and won't release. Being who I am, I tug and whip and tug to no avail, but will be damned if I'm going to put a ladder up just to unhook it so I give it one giant heave ho and the cord rockets from the opening and the end cracks me over my right eye at 100 mph, raising a knot the size of a small turtle. Went home after that..........
A ways back I was sliding joists out to build a floor system and the joist I was standing on gave way, sending me head first into the basement. I was very happy the concrete had yet to be poured when my head impacted 8 inches of pea gravel. I'll never forget that sound....
Way back I was turning up a jack post with a screwdriver when the bastard screwdriver broke and I punched myself in the face as hard as I could (you can't make this stuff up).
In '85 I dropped a circular saw blade 1-1/4" into the top of my thigh, missing the femoral artery by less than an inch. I needed some 40 stitches and a 16" long drain tube (I took both stitches and tube out a couple weeks later in the shower)- missed a canoe trip and 3 days work.
This one? At home. I am safe nowhere. Our bedroom is on the third floor. The stairs down follow a U shape. Find a door at the bottom of stairs. Find me, in a moment of anti-clarity, deciding to jump into the hallway- from the landing above. I crack my head on the header over the door and project myself into my daughter's bedroom across the hall- on the fly. I only tried this once.
Still in the house: So I'm taking a shower, you see, and the old tub had a nasty bolt or screw protruding from the drain, and while I'm washing my hair, I slip. My right heel is punctured by the screw and as a reflex reaction I propel myself upward, only cockeyed, and my propulsion shoots me out of the shower backwards, the shower curtain acts as a body condom and envelops me as I crack my head on the vanity and yell bloody murder. Amy comes running and finds me, naked of course, flooding the bathroom and hugging the toilet. She begins to laugh so hard she actually snorts.........................
As a kid, (chronology just left the building) I had more than my fair share of "neck up" injury. Could be I picked up ALS in grade school; I am a slow learner, ya know. When I was 5 or 6, I clothes lined myself on electrified barbed wire while running through a barnyard, dashing into the farmhouse bleeding from the neck and scaring the wits out of my mom and her friends; later that summer I found myself playing in a 100 year old corn crib (in the same barnyard)- I would run up the slope of corn, turn and slide down. For some reason that escapes me, I decided to turn and jump instead, blasting my head against a huge wooden cross member, knocking me (more) senseless. I guess I forgot that day when I lit from my stairwell landing years later. As I stated, I'm a slow learner. I guess some things I never learn.
In 8th grade I was on the playground flipping a football around with my friends, eventually going out for passes, catching most, when with a full head of steam and my head turned right to look for the ball I clocked an aluminum light pole full on, raising a bump over my left eye so tall I could see it as I stumbled to the office. Realize, in those days nobody called a doctor, as was the case here.
Along with these small episodes could be added other, lesser injuries, such as 4 stitches in my head to close a wound caused by a swung belt terminating in one of those giant 70's buckles during a fight when I was 14, or burying a utility knife into my thumb and having to tug to remove such, or smashing my thumb so bad I heated a needle and plunged it into and through my thumbnail only to get IT stuck as the needle cooled down, or when I rolled a circular saw over my right thumb deep enough to expose the tendon below, or driving a microwave into a cabinet and nearly de-gloving my middle finger, or bouncing my head in my garage trying roller skates for the first time, a similar fate with ice skates to follow.....
You get a pattern here? If ALS can be encouraged by trauma, I've done my best to bring it upon myself. If not, the fact I've survived all these years leads me to believe the disease may hobble me, but will not put me down. I figure Dr. Death has tried his best, and failed. I remain a hard nut to crack, and, more importantly, impossible to extinguish. I'll be pecking till the cows come home.
Friday, August 19, 2011
Walking on Eggs With a Cane
Not exactly, not yet, but soon, I fear...............
I have a hard time accepting any of this ALS journey. To begin with, I am not the type of person to lay down my arms (I know there's a double entendre lurking here), and give up a fight. In fact, I am quite the opposite. All obstacles before me represent challenges I am ready to meet. I have lived my life to do battle. I cannot conceive of any other way. I've written before about this. I will perform redundancy again and again (snicker), because I continue to return to the same subject, the same debacle. I feel I'm taking on shrapnel as I forge (blindly) toward my enemy. My wounds are accumulating as I push forward, hands (hand) outstretched in search of the neck of ALS. I feel the heightening frustration, the ever chaotic frenzy of my own juggernaut flashing ground to snatch the jugular of the disease as I get tripped and pirouetted by it's constant barrage upon my body. I have no idea what I'm doing. I am blind and yet I thrash out. I trouble the thought that this is what will steer me to my demise. I worry the idea that this is what ALS wants. I cannot relax, as the relaxation feels like lost time, resignation. A deep breath feels like a sigh of relief and I am relieved of nothing. A pause in the onslaught seems a waste in time.
I am not exhausted yet. I have energy to take me forward, but I need to better assess my course. I never ran away before. A small part of me says to deny the existence of ALS will weaken it's resolve when it is not a factor to me, but the better part of me says it will creep up behind me if I turn my back. I know I can't run away, ALS has seen to that.................
No, I'm not yet wielding a cane, but soon I must cross that chasm of embarrassment and take up help. I need to keep driving toward my own goals and shed my encumberments and fight my fights. It appears I will someday move up from infantry to artillery.
OK, so I write and I write, and I drone on and on, ad nauseam. When I started this blog a little over a month ago, I figured only a few would ever read it. As it has developed, the blog has apparently collected more morbidity drawn readership than I would have thought. Now, folks are reading this with barely a clue about me. Tracy Boettcher. 53. A nephew with more insight than I'll ever have put out the suggestion I tell about myself pre-ALS. I plan to do so. In droplets. Small bites. Why? Because while I need to outline the life of a guy who has contracted this shit disease, I needn't bore readers with any more than would interest them concerning why a guy like me looks at this thing the way I do. A brief history in time to deliver a connection between what I have been and what I am now. So, I will be posting my gratuitous version of life as I have lived it in order for you to better understand why I would be very much pleased to continue it for quite some time.
I have a hard time accepting any of this ALS journey. To begin with, I am not the type of person to lay down my arms (I know there's a double entendre lurking here), and give up a fight. In fact, I am quite the opposite. All obstacles before me represent challenges I am ready to meet. I have lived my life to do battle. I cannot conceive of any other way. I've written before about this. I will perform redundancy again and again (snicker), because I continue to return to the same subject, the same debacle. I feel I'm taking on shrapnel as I forge (blindly) toward my enemy. My wounds are accumulating as I push forward, hands (hand) outstretched in search of the neck of ALS. I feel the heightening frustration, the ever chaotic frenzy of my own juggernaut flashing ground to snatch the jugular of the disease as I get tripped and pirouetted by it's constant barrage upon my body. I have no idea what I'm doing. I am blind and yet I thrash out. I trouble the thought that this is what will steer me to my demise. I worry the idea that this is what ALS wants. I cannot relax, as the relaxation feels like lost time, resignation. A deep breath feels like a sigh of relief and I am relieved of nothing. A pause in the onslaught seems a waste in time.
I am not exhausted yet. I have energy to take me forward, but I need to better assess my course. I never ran away before. A small part of me says to deny the existence of ALS will weaken it's resolve when it is not a factor to me, but the better part of me says it will creep up behind me if I turn my back. I know I can't run away, ALS has seen to that.................
No, I'm not yet wielding a cane, but soon I must cross that chasm of embarrassment and take up help. I need to keep driving toward my own goals and shed my encumberments and fight my fights. It appears I will someday move up from infantry to artillery.
OK, so I write and I write, and I drone on and on, ad nauseam. When I started this blog a little over a month ago, I figured only a few would ever read it. As it has developed, the blog has apparently collected more morbidity drawn readership than I would have thought. Now, folks are reading this with barely a clue about me. Tracy Boettcher. 53. A nephew with more insight than I'll ever have put out the suggestion I tell about myself pre-ALS. I plan to do so. In droplets. Small bites. Why? Because while I need to outline the life of a guy who has contracted this shit disease, I needn't bore readers with any more than would interest them concerning why a guy like me looks at this thing the way I do. A brief history in time to deliver a connection between what I have been and what I am now. So, I will be posting my gratuitous version of life as I have lived it in order for you to better understand why I would be very much pleased to continue it for quite some time.
Wednesday, August 17, 2011
Time to get technical
Throughout the last month or so I've posted a variety of moanings, mush and bewilderments (to me, anyway), and it has occurred to me I have failed to spell out the chemistry of ALS, at least as well as the scientists can define and as little as I can decipher with a high school chemistry education. Keep in mind that grasping the few straws collected by experts only fuels the fire that is ignorance of the cause, and in knowing, for example, that uncontrolled glutamate production essentially drowns upper motor neurons provides no intelligence for such. Simply put, if you observe a bleeding cut, and determine, yes, the cut is bleeding, your observation tells you nothing but result. What caused the cut is still a mystery. Case in point: I have ALS, we know what it's doing to me, we don't know how it got started and we can't stop it. Nutshell analysis.
If you don't care for this stuff, I welcome you to read another post or hang up for now. Even I find this to be a little too clinical to want to write, and I don't really grasp a lot of it, but I need to screw down my thinking cap and peel off what I do understand so as to better read my enemy. Here goes:
The following is gleaned from a paper I found entitled: Glutamate Transporters and the Excitotoxic Path to Motor Neuron Degeneration in Amyotrophic Lateral Sclerosis (ALS) credit- Emily Foran, Davide Trotti
From the abstract:
Responsible for the majority of exitatory activity in the central nervous system (CNS), glutamate interacts with a range of specific receptor and transporter systems to establish a functional synapse. Excessive stimulation of glutamate receptors causes excitotoxicity, a phenomenon implicated in both acute and chronic neurodegenerative diseases (e.g., ischemia, Huntington's disease, and ALS).
From me:
I read, simply, as I am simple, that glutamate acts as a conductor of signal flow regulating information transference, in my case, as related to motor neuron synaptic timing involving voluntary action (my muscles). An overabundance of glutamate effectively destroys the functionality of the motor neuron and ruins any connection or signal to the muscle.
I have, in front of me, 21 pages of documentation that likely requires a PhD to really understand, and I am not even a P. If anyone would like to tackle this paper, which requires me to Google every third word, then try to find it here: http:/www.ncbi.nlm.nih.gov/pmc/articles/PMC2842587 I will continue to apply my pea brain in order to learn more on the subject.
I am very sorry for my lack of continuation on this technical description of ALS. My feeling is that knowing what the smart guys know about ALS is to discover how little they know. Ya know? I need answers to questions and nobody has them. All this information leads me to understand how little is solved year to year involving ALS. I am certain very few studies are being conducted involving herbal remedies, yin, yang, nutritional variations, mind/body, hypnosis, meridian balance or anything else outside the box since it's unlikely any grant money is available for such studies. Shame. Meanwhile, I will continue to absorb all I can comprehend- as little as that is.
If you don't care for this stuff, I welcome you to read another post or hang up for now. Even I find this to be a little too clinical to want to write, and I don't really grasp a lot of it, but I need to screw down my thinking cap and peel off what I do understand so as to better read my enemy. Here goes:
The following is gleaned from a paper I found entitled: Glutamate Transporters and the Excitotoxic Path to Motor Neuron Degeneration in Amyotrophic Lateral Sclerosis (ALS) credit- Emily Foran, Davide Trotti
From the abstract:
Responsible for the majority of exitatory activity in the central nervous system (CNS), glutamate interacts with a range of specific receptor and transporter systems to establish a functional synapse. Excessive stimulation of glutamate receptors causes excitotoxicity, a phenomenon implicated in both acute and chronic neurodegenerative diseases (e.g., ischemia, Huntington's disease, and ALS).
From me:
I read, simply, as I am simple, that glutamate acts as a conductor of signal flow regulating information transference, in my case, as related to motor neuron synaptic timing involving voluntary action (my muscles). An overabundance of glutamate effectively destroys the functionality of the motor neuron and ruins any connection or signal to the muscle.
I have, in front of me, 21 pages of documentation that likely requires a PhD to really understand, and I am not even a P. If anyone would like to tackle this paper, which requires me to Google every third word, then try to find it here: http:/www.ncbi.nlm.nih.gov/pmc/articles/PMC2842587 I will continue to apply my pea brain in order to learn more on the subject.
I am very sorry for my lack of continuation on this technical description of ALS. My feeling is that knowing what the smart guys know about ALS is to discover how little they know. Ya know? I need answers to questions and nobody has them. All this information leads me to understand how little is solved year to year involving ALS. I am certain very few studies are being conducted involving herbal remedies, yin, yang, nutritional variations, mind/body, hypnosis, meridian balance or anything else outside the box since it's unlikely any grant money is available for such studies. Shame. Meanwhile, I will continue to absorb all I can comprehend- as little as that is.
Monday, August 15, 2011
About My Wife
Most of you know her, but only I really know her. 37 years of hand in hand, heart in heart. She is the embodiment of all that is pure in the world and I'm the lucky stiff she fell in love with.
I am most certainly not the easiest guy on the planet to have as a husband. Add ALS and we find out who has the meddle to carry the load while I swerve from self pity to defiance to frustration to sorrow. She is one amazing woman.
Shall I count the ways? Need I? Publicly, she has organized multiple fund raisers over the last couple of months that could easily stand as examples in education of how to run a successful fundraiser. She has communicated with numerous doctors, healers, holistic gurus, therapists and idea men for hours and days assembling concepts for me to consider. This is public. I cannot come close to maintaining her pace and diligence. I dare say when Amy sets her mind to a project, it will either happen or explode upon her impact.
Privately, though, she does her best work. With me. She is tireless in her efforts to fix me. I tell ya, if there were ever a cure that involved staring at me while I sleep, drilling her will into my cranium, then I would be well today. I swear I can feel the daggers the next morning.
Consider the pressure on her. Consider the weight upon her shoulders. The stress. My disadvantage is dwarfed by her burden. I want so much to snap my fingers (on my right hand, of course) and solve all her problems. I want to feel the heal. I want it to be her because she gives her heart and soul every waking second to making me well.
Amy is a healer. Not a parlor trick mesmerist (though you can learn a lot reading of Mesmer), but a healer who can make people feel better simply by enforcing their ability to help themselves. She is a hypnotist, but I've learned the perception of such is usually flawed. She works with folks to help them find their own healing powers. She is a catalyst for self awareness and I can say I've never heard a client cluck like a chicken. She puts herself out there with whole hearted fervor and an overdeveloped sense of empathy. Boy, am I lucky.
So, if ya know her, you know what I mean, and if you don't, get to know her and you'll witness it yourself, and I promise you'll never be the same.
I ride on hope and I pray it has a strong back, but I am led by determination, by grit and by love, shouldered by Amy, and I know I can count on her to lead me true, wherever that truth lies.
I am most certainly not the easiest guy on the planet to have as a husband. Add ALS and we find out who has the meddle to carry the load while I swerve from self pity to defiance to frustration to sorrow. She is one amazing woman.
Shall I count the ways? Need I? Publicly, she has organized multiple fund raisers over the last couple of months that could easily stand as examples in education of how to run a successful fundraiser. She has communicated with numerous doctors, healers, holistic gurus, therapists and idea men for hours and days assembling concepts for me to consider. This is public. I cannot come close to maintaining her pace and diligence. I dare say when Amy sets her mind to a project, it will either happen or explode upon her impact.
Privately, though, she does her best work. With me. She is tireless in her efforts to fix me. I tell ya, if there were ever a cure that involved staring at me while I sleep, drilling her will into my cranium, then I would be well today. I swear I can feel the daggers the next morning.
Consider the pressure on her. Consider the weight upon her shoulders. The stress. My disadvantage is dwarfed by her burden. I want so much to snap my fingers (on my right hand, of course) and solve all her problems. I want to feel the heal. I want it to be her because she gives her heart and soul every waking second to making me well.
Amy is a healer. Not a parlor trick mesmerist (though you can learn a lot reading of Mesmer), but a healer who can make people feel better simply by enforcing their ability to help themselves. She is a hypnotist, but I've learned the perception of such is usually flawed. She works with folks to help them find their own healing powers. She is a catalyst for self awareness and I can say I've never heard a client cluck like a chicken. She puts herself out there with whole hearted fervor and an overdeveloped sense of empathy. Boy, am I lucky.
So, if ya know her, you know what I mean, and if you don't, get to know her and you'll witness it yourself, and I promise you'll never be the same.
I ride on hope and I pray it has a strong back, but I am led by determination, by grit and by love, shouldered by Amy, and I know I can count on her to lead me true, wherever that truth lies.
Correction, once again
I must post here in order to make a correction in my verbiage found previously. While it sucks to be me, as I said, this statement only holds true for me, within the deep recesses of my mind, and should not be allowed out. I misinformed the public and suggested they take on the thought, make it a statement and move on. Well, stupid is I. My life could not be better were it not for ALS, and ironically, it is better because of ALS. I have reconnected with people I'd previously suspected I meant no more to than an acquaintance. I have been wished well by a plethora of folk who barely know me. Support has been incredible. I have transitioned from that macho male figure who bemoaned admitting love for those outside family to recognizing it's universality and embracing the term, using it and believing it and living within it's enfold.
I know, I said no mush. Sorry. (not really). What I actually mean is, while it sucks to have ALS, life as I am experiencing it, with all my friends and family, could not suck less. I am ever lucky and ever grateful for that.
Now that I've found my kinder, gentler voice, and have found a pathway to a calmer, less combative demeanor, let me say I love you all. I cannot limit this to those who have been active and forthcoming in their support. I extend my sentiments to all those out there who cannot process well my situation; those who feel uncomfortable even thinking of my plight. I extend my feelings of gratitude to those who find it impossible to approach me, who don't know what to say, what to do, how to act, for these apprehensions alone are evidences you care, and this is enough for me. Know I love you too.
I know, I said no mush. Sorry. (not really). What I actually mean is, while it sucks to have ALS, life as I am experiencing it, with all my friends and family, could not suck less. I am ever lucky and ever grateful for that.
Now that I've found my kinder, gentler voice, and have found a pathway to a calmer, less combative demeanor, let me say I love you all. I cannot limit this to those who have been active and forthcoming in their support. I extend my sentiments to all those out there who cannot process well my situation; those who feel uncomfortable even thinking of my plight. I extend my feelings of gratitude to those who find it impossible to approach me, who don't know what to say, what to do, how to act, for these apprehensions alone are evidences you care, and this is enough for me. Know I love you too.
Saturday, August 13, 2011
Realizations and adjustments
In a couple days it will have been five months since my diagnosis. A whirlwind of events and emotions, visitations and correspondence has stigmatized my way of life. I, who have, since I was very young, been in charge of virtually everything, am now finding myself bombadiering from week to week, looking for that elusive control I executed in a previous existence. I say stigmatize because my past life's destinations and accomplishments, decisions and failures were of my design. I ran the show. With work, with family, with finances- with all- I was indestructible. I suppose we all get our comeuppance. Mine appears to be ALS. I'm beginning to realize, resisting all the way, that my former resolutions no longer work for me, and that if I continue to re-enlist my control reality, ALS will beat me down and sweep me out the door. If I don't release- and that's not to pay lip service, but to embrace- my instincts to control, I will have no choice but to sleep forever in the bed of my making. I need to trust. I need to evolve mentally in order to accept change in my life. So far, the cracks in my psyche are small and my mind refuses to adapt, but inroads are being forged and little by little I am absorbing the outside influence necessary to turn around on this highway to hell. Strangely, the harder I try to facilitate the change, the more resistant I am to do so. I work at and I work at it and I work at it and I now understand that this is my un-doing. Throughout my life I always pushed and look where it's got me- I need to work at not working at it. I need to release the tension and make a u-turn. Tough for me, because I've always met my problems head on with battle in mind. It's a hard concept for me to simply turn around on them and bear them no credence.
I am having physical difficulties and they are manifesting themselves incrementally throughout my body. I can no longer write with my left hand without much difficulty and my left arm is weak enough that instinct tells me if I fall to my left, I'm going down without a hand out to break the fall. My shoulder can take the impact, my arm cannot. My right hand and arm are now the Alpha, and while I do have fasciculations there, they have yet to manifest in weakness or lack of dexterity. My legs are, however, feeling the change. My right leg is the stronger of the two. My left is relatively pathetic. I limp off of the left not because of pain or discomfort, but because my joints and muscles react in poor timing. On stairs, my knees, both of them, bounce and vibrate, wiggle and shake at each step. I can manage all of this as long as I move a little more slowly and carefully. I don't find myself particularly fatigued with this extra effort, though I haven't really put it to the test yet. Two days at Disney World should act as a good barometer of my capabilities and an assessment as to how I'll hold up in New Zealand later in September. My speech seems to be maintaining its typical "low talker" status, though I feel I could be developing some slur from what they call "lazy tongue". All the more important I continue to communicate from this electronic pulpit.
So far, I see no need for help devices such as cane or walker, wheelchair or voice box. I need to stymie the progress of ALS as best I can and accept help and support without resistance or embarrassment. Don't feel sorry for me. I cannot get better on the back of pity. Simply accept that it sucks to be me and go on. Only positive thoughts. In conclusion, let it be known I believe that which is put in ones' head remains there forever, and in knowing this, I curse the professionals who told me last spring there was no cure. I continue to beat that thought into oblivion. Unfortunately, oblivion is still in my head.
I am having physical difficulties and they are manifesting themselves incrementally throughout my body. I can no longer write with my left hand without much difficulty and my left arm is weak enough that instinct tells me if I fall to my left, I'm going down without a hand out to break the fall. My shoulder can take the impact, my arm cannot. My right hand and arm are now the Alpha, and while I do have fasciculations there, they have yet to manifest in weakness or lack of dexterity. My legs are, however, feeling the change. My right leg is the stronger of the two. My left is relatively pathetic. I limp off of the left not because of pain or discomfort, but because my joints and muscles react in poor timing. On stairs, my knees, both of them, bounce and vibrate, wiggle and shake at each step. I can manage all of this as long as I move a little more slowly and carefully. I don't find myself particularly fatigued with this extra effort, though I haven't really put it to the test yet. Two days at Disney World should act as a good barometer of my capabilities and an assessment as to how I'll hold up in New Zealand later in September. My speech seems to be maintaining its typical "low talker" status, though I feel I could be developing some slur from what they call "lazy tongue". All the more important I continue to communicate from this electronic pulpit.
So far, I see no need for help devices such as cane or walker, wheelchair or voice box. I need to stymie the progress of ALS as best I can and accept help and support without resistance or embarrassment. Don't feel sorry for me. I cannot get better on the back of pity. Simply accept that it sucks to be me and go on. Only positive thoughts. In conclusion, let it be known I believe that which is put in ones' head remains there forever, and in knowing this, I curse the professionals who told me last spring there was no cure. I continue to beat that thought into oblivion. Unfortunately, oblivion is still in my head.
Wednesday, August 10, 2011
Off the track and filling a bucket
OK, so far you've heard me go on and on about ALS. I'm aware of the title of my blog. I have a self imposed duty to continue plowing and loading material on the subject until I run out of things to say. The truth is, I'll likely pile it up on this site long after every reader out there has had his fill. It has become apparent that a juggernaut is now in place, and my mind will (and needs to) segue to topics other than ALS. For those blurts of print, the bored and friendless may go to Randomless Observations at daddyboettcher.blogspot.com for relief. I will be your friend, provided you wholeheartedly agree with me on all fronts. If not, I really don't care much. (actually, I do)
Writing for me is now a necessity. I know the words will continue even if they stay forever buried in a Word document. (apropos). Maybe some day I'll write a book. For now, I lack the continuity to assemble a pamphlet. A work in progress.
On filling a bucket: This is not a bucket list. This is a bucket calender. My family is unbelievable. I dedicate too much print to me and give them next to none. I'll probably continue to do this because I can't be smarmy and sarcastic, judgmental or skeptical when I write about them. I don't want to short out my keyboard with tears. I would rather you assume the mush as it's easier than for me to relate it. Truth is, If I didn't have my family and boatload of friends, I might have joined Lou Gehrig already. My family lifts me up simply with their existence. The fact they like me and care about me moves me forward.
Oh, my immediates: Nick- Chicago, Rachel- somewhere between Copenhagen and Helsinki, Sarah, Tim, Alex, Isaac- Dallas, oh, yeah, and Amy- always within arm's reach.
OK- Here's my to do list for the next 2 months:
August 25, Rachel comes home to see me for the first time since my diagnosis- we will be joined at the hip from the moment I see her.
Sept.1 Amy, Rachel and I drive to Chicago, pick up Nick, get to Ohare, fly to Orlando, meet up with Sarah, Tim, Alex and Isaac, check into some kind of Buzz Lightyear hotel and spend 3 days at Disney World.
Sept. 17- Amy, Rachel and I drive up to Crusens on War Memorial Drive to catch Nick and his DriveTrain band play, joined by and featuring singer Paige DeChausse, a season 9 American Idol contestant who made it to Vegas.
Sept. 19- Rachel and I drive to Ohare, fly to Los Angeles, then fly to Auckland, New Zealand for 2 weeks of hopping from the north island to the south, doing? does it matter? It's New Zealand, do you need ask?
Sept 4, Rachel and I get home so we can schedule the next 3 months.
Can you say "silver lining"?
Writing for me is now a necessity. I know the words will continue even if they stay forever buried in a Word document. (apropos). Maybe some day I'll write a book. For now, I lack the continuity to assemble a pamphlet. A work in progress.
On filling a bucket: This is not a bucket list. This is a bucket calender. My family is unbelievable. I dedicate too much print to me and give them next to none. I'll probably continue to do this because I can't be smarmy and sarcastic, judgmental or skeptical when I write about them. I don't want to short out my keyboard with tears. I would rather you assume the mush as it's easier than for me to relate it. Truth is, If I didn't have my family and boatload of friends, I might have joined Lou Gehrig already. My family lifts me up simply with their existence. The fact they like me and care about me moves me forward.
Oh, my immediates: Nick- Chicago, Rachel- somewhere between Copenhagen and Helsinki, Sarah, Tim, Alex, Isaac- Dallas, oh, yeah, and Amy- always within arm's reach.
OK- Here's my to do list for the next 2 months:
August 25, Rachel comes home to see me for the first time since my diagnosis- we will be joined at the hip from the moment I see her.
Sept.1 Amy, Rachel and I drive to Chicago, pick up Nick, get to Ohare, fly to Orlando, meet up with Sarah, Tim, Alex and Isaac, check into some kind of Buzz Lightyear hotel and spend 3 days at Disney World.
Sept. 17- Amy, Rachel and I drive up to Crusens on War Memorial Drive to catch Nick and his DriveTrain band play, joined by and featuring singer Paige DeChausse, a season 9 American Idol contestant who made it to Vegas.
Sept. 19- Rachel and I drive to Ohare, fly to Los Angeles, then fly to Auckland, New Zealand for 2 weeks of hopping from the north island to the south, doing? does it matter? It's New Zealand, do you need ask?
Sept 4, Rachel and I get home so we can schedule the next 3 months.
Can you say "silver lining"?
Monday, August 8, 2011
Getting on the wagon
What causes ALS? Guesses abound, answers are non-existent. What cures ALS? Guesses abound, answers are non-existent. Maybe.
With any disease known to man, we become aware of exceptional circumstances. In some cases the cure comes as a spontaneous event. Obviously, no event is really spontaneous, so by the lay of the term, a precursor to the cure had to have led to the occurrence. Basically, SOMETHING had to happen for the disease to go bye bye.
Consider me a skeptic. I'll likely say no and then defend my position by berating the thought. No to this, no to that............................. no to most everything. Well, I'm still skeptical, but I am also learning that the answers to my questions cannot be found inside my periphery. Imagine all the remedies that "help" slow or stop or reverse ALS. None of them work. Believe me. None- individually. Any combination may help. Some combinations should help, and out there in the universe of hopeful remedies lies the combination that WILL work. For me. Not for the ALS guy in room 12. Just me. So I travel this road, I pick up some herbs, I collect broccoli, I read a Krishnamurti pamphlet, I explore my childhood- before conception, after-, I meditate, I pray, I attempt to draw energy from the masses, I pound the vitamins and I continue to search for that ever elusive answer.
Have no doubt, this is a race, and I have recently been proven a slow starter, bogged down by skepticism-, but no more, say I. I am releasing the encumberment of my doubt, my negative attitude, my limitless pessimism. I've always had my own agenda- in life, with family, regarding my health............................ I need to and I intend to release these harnesses and will lift every stone, open every door and explore every possibility I can discover to out run ALS. Keep in mind I will continue to force my way forward and strive for the enlightenment I must have. I know that those who say we are on the road to death from our birth are wrong. The cup is full no matter how little fluid remains. I am in a position where I have been told the likely cause of by death, and when I can expect it. I know better. My cup is full- it just has a little hole in it. Now......... I need only find the proper combinations of changes and enhancements, the proper mentality, the proper balance of mind and body- to fill that little hole.
With any disease known to man, we become aware of exceptional circumstances. In some cases the cure comes as a spontaneous event. Obviously, no event is really spontaneous, so by the lay of the term, a precursor to the cure had to have led to the occurrence. Basically, SOMETHING had to happen for the disease to go bye bye.
Consider me a skeptic. I'll likely say no and then defend my position by berating the thought. No to this, no to that............................. no to most everything. Well, I'm still skeptical, but I am also learning that the answers to my questions cannot be found inside my periphery. Imagine all the remedies that "help" slow or stop or reverse ALS. None of them work. Believe me. None- individually. Any combination may help. Some combinations should help, and out there in the universe of hopeful remedies lies the combination that WILL work. For me. Not for the ALS guy in room 12. Just me. So I travel this road, I pick up some herbs, I collect broccoli, I read a Krishnamurti pamphlet, I explore my childhood- before conception, after-, I meditate, I pray, I attempt to draw energy from the masses, I pound the vitamins and I continue to search for that ever elusive answer.
Have no doubt, this is a race, and I have recently been proven a slow starter, bogged down by skepticism-, but no more, say I. I am releasing the encumberment of my doubt, my negative attitude, my limitless pessimism. I've always had my own agenda- in life, with family, regarding my health............................ I need to and I intend to release these harnesses and will lift every stone, open every door and explore every possibility I can discover to out run ALS. Keep in mind I will continue to force my way forward and strive for the enlightenment I must have. I know that those who say we are on the road to death from our birth are wrong. The cup is full no matter how little fluid remains. I am in a position where I have been told the likely cause of by death, and when I can expect it. I know better. My cup is full- it just has a little hole in it. Now......... I need only find the proper combinations of changes and enhancements, the proper mentality, the proper balance of mind and body- to fill that little hole.
Saturday, August 6, 2011
Stress? What stress?
As is generally accepted, stress is a killer. It destroys motivation, happiness, marriages, relationships with our families, our self esteem, our bodies. Stress is an internal conflagration that can drive a person to any of a number of calamities. Stress is also a part of life. Likely, and paradoxically to my above statement, in some form, stress promotes motivation. I suspect the lack of ALL stress eliminates ALL motivation. A radical view, I know, but one worth considering. I'd imagine all stress is gone when you die. It's the getting there that proves so daunting. Don't misinterpret. While I don't fear dying, I certainly plan to avoid such a conclusion as a remedy for ANYTHING.
I've mentioned before that some believe stress in my life has played a part in putting me where I presently find myself. While I can agree to a point, I beg to respond that of all the human creatures on this planet, my stress level has to be very low on average. I have a wife who is more to me than the sum of relationships concocted on this Earth. My children and grandchildren are beyond amazing, my friends are more numerous than I imagined: In a nutshell, I have lived a charmed life. I intend to continue to do so. While stress has played a part in my life, the rewards heaped upon me far outweigh the sacrifices others have said I've borne. So don't believe for one second stress gave me ALS: it may have played a small part, but I can't credit any cause that deserves little.
A new development: I absorb salvos thrown at me, armed with good intentions, and I find their frequency has increased as of late. I also find myself taking the hits without retaliation because I have come to realize that those firing the shots sometimes are more damaged than I. They cannot help themselves, and they truly believe what they say has merit, but they are ignorant of my own views. They make suppositions without information. From me. How do I think? What is appropriate? What should I believe and who's dictating such? Don't expect me to forage in the realm of God too deeply here. That is a conversation best made with two parties. Don't underestimate, however, how much I think about the subject. I can say I experience no stress at all when pondering my considerations. This is for sure. I have no guilt or fear here. I have no choice, which can also be perceived as I have no need to choose. I have my structures, though. I will say, in that world, judgment should be the ultimate sin. I would never sit in judgment over my children and I believe no father should. No father. Worth repeating.
I believe in the power of numbers. A million Chinese beat a hundred Marines every time. If ALS has an army of a billion, it is still defeatable. Recently, I've had conversation concerning the definition, use and value of energy. We all, hopefully, know the definition of potential energy. Maybe less universally known yet more important to conceptual reasoning is that energy exists everywhere. In it's basest form, energy can be described as everything. Energy can neither be created nor destroyed. When a plant dies, the energy continues to exist. I believe it to be a very complex consideration that energy can be directed outside the body. I want to think that based on some scatter shot evidence that a collection of efforts toward a single cause, (in this case, me, thank you very much) can affect change. Call it prayer for some, meditation for others, a crossing of the eyes and scrunching of the forehead for still others, for likely the energy projected is blind to belief, motivation or prejudice. It happens because it does or it doesn't because it doesn't. Complex thought, simple conclusion. Because we don't really know, we really try. Why not? Why limit any help to that which falls under a particular belief system. Just throw it out there without hesitation and without strings attached. Don't suppose conditions. Don't impose conditions upon me. Just do it. I'll take all the help I can get.
I've mentioned before that some believe stress in my life has played a part in putting me where I presently find myself. While I can agree to a point, I beg to respond that of all the human creatures on this planet, my stress level has to be very low on average. I have a wife who is more to me than the sum of relationships concocted on this Earth. My children and grandchildren are beyond amazing, my friends are more numerous than I imagined: In a nutshell, I have lived a charmed life. I intend to continue to do so. While stress has played a part in my life, the rewards heaped upon me far outweigh the sacrifices others have said I've borne. So don't believe for one second stress gave me ALS: it may have played a small part, but I can't credit any cause that deserves little.
A new development: I absorb salvos thrown at me, armed with good intentions, and I find their frequency has increased as of late. I also find myself taking the hits without retaliation because I have come to realize that those firing the shots sometimes are more damaged than I. They cannot help themselves, and they truly believe what they say has merit, but they are ignorant of my own views. They make suppositions without information. From me. How do I think? What is appropriate? What should I believe and who's dictating such? Don't expect me to forage in the realm of God too deeply here. That is a conversation best made with two parties. Don't underestimate, however, how much I think about the subject. I can say I experience no stress at all when pondering my considerations. This is for sure. I have no guilt or fear here. I have no choice, which can also be perceived as I have no need to choose. I have my structures, though. I will say, in that world, judgment should be the ultimate sin. I would never sit in judgment over my children and I believe no father should. No father. Worth repeating.
I believe in the power of numbers. A million Chinese beat a hundred Marines every time. If ALS has an army of a billion, it is still defeatable. Recently, I've had conversation concerning the definition, use and value of energy. We all, hopefully, know the definition of potential energy. Maybe less universally known yet more important to conceptual reasoning is that energy exists everywhere. In it's basest form, energy can be described as everything. Energy can neither be created nor destroyed. When a plant dies, the energy continues to exist. I believe it to be a very complex consideration that energy can be directed outside the body. I want to think that based on some scatter shot evidence that a collection of efforts toward a single cause, (in this case, me, thank you very much) can affect change. Call it prayer for some, meditation for others, a crossing of the eyes and scrunching of the forehead for still others, for likely the energy projected is blind to belief, motivation or prejudice. It happens because it does or it doesn't because it doesn't. Complex thought, simple conclusion. Because we don't really know, we really try. Why not? Why limit any help to that which falls under a particular belief system. Just throw it out there without hesitation and without strings attached. Don't suppose conditions. Don't impose conditions upon me. Just do it. I'll take all the help I can get.
Thursday, August 4, 2011
If you're in the vicinity.........................
If you read this blog, and live in or near Peoria, and possibly have difficulty posting comments, whether you would rather remain anonymous, or you would simply like to see an ALS guy in person, I will be attending the Tower Park Music Festival in Peoria Heights Saturday night to watch my son Nick and his band "DriveTrain" headline at 8:30. I will be there much earlier to catch the other acts as well. Stop by. Don't expect a wheelchair just yet, but don't expect to find me doing laps that day. Buy beer and food- Mayor Mark Allen and Peoria Heights have been very good for the Boettcher clan over the years and the Park vendors will always welcome the business. Free admission.
Wednesday, August 3, 2011
Acupuncture, TCM, Stem Cell Research and Wishful Thinking
Time to tell you what I've been doing besides sitting around sulking over my condition. Early on, I got advice from other ALS sufferers (These are people I have yet to meet. I am nowhere near ready to witness a crystal ball future in the flesh. I have yet to hear of a cancer patient healing upon visiting another) who, upon hearing of my diagnosis, suggested I quit my job right away and live my life as if there were no tomorrow. Any offer resembling advice practical for my situation was non-existent. I hope to one day enter an ALS clinic and offer a chance at a cure. Unless I lose my mind in this debacle, I have full intentions to work as long as I can, doing whatever I can and digging in mentally until I crack this nut. I have been so pre-occupied with finances, rolling visitations and emotional Screaming Eagle's (roller coaster reference) that my efforts at healing have taken a back seat. Well, no more. I am now going to explore the world outside my neurologist's office. I've done some scouting, you see...........................
Acupuncture-
I have had several sessions with a great Dr. Zhang, lately in the Quad Cities. Not only can he slow the fasciculations for a while, but he's a chiropractor as well as a massage therapist as well as a neurosurgeon in China. He can give me temporary relief here and knows the head of neurology in Bejing, China, and has been instrumental in helping us weed out the bogus clinics there practicing TCM.
TCM- (Traditional Chinese Medicine)
We have explored options in China involving TCM, and are still looking for a clinic with published records showing success in the treatment of ALS. Dr. Zhang feels stem cell treatments must accompany TCM for any long term benefits. Incidentally, TCM comprises the remedying factors of acupuncture (twice daily), massage (Chinese version) and varying herbal remedies. The typical TCM treatment duration is 2 months (In China). We are still considering this a potentially viable course of action.
Stem Cell Research-
Not a lot to report yet. Treatments in Mexico simply load me up with billions of cells for the disease to munch on. Like pouring water into a pail with a hole in it. (18K an injection). Other countries still experimenting. Problem is, a stem cell is a perfectly palatable morsel for glutamate gone wild.
Other- in the works- hypnosis, self-hypnosis, energy healing, pot, past life regression, radical detoxification, acupuncture directly related to yin/yang , meridian balance, Chi Kung brain washing (the good kind), visiting Orlando with family (Sept. 1) Visiting New Zealand with Rachel (Sept 20)- the list will never stop. WISH ME WELL.
Acupuncture-
I have had several sessions with a great Dr. Zhang, lately in the Quad Cities. Not only can he slow the fasciculations for a while, but he's a chiropractor as well as a massage therapist as well as a neurosurgeon in China. He can give me temporary relief here and knows the head of neurology in Bejing, China, and has been instrumental in helping us weed out the bogus clinics there practicing TCM.
TCM- (Traditional Chinese Medicine)
We have explored options in China involving TCM, and are still looking for a clinic with published records showing success in the treatment of ALS. Dr. Zhang feels stem cell treatments must accompany TCM for any long term benefits. Incidentally, TCM comprises the remedying factors of acupuncture (twice daily), massage (Chinese version) and varying herbal remedies. The typical TCM treatment duration is 2 months (In China). We are still considering this a potentially viable course of action.
Stem Cell Research-
Not a lot to report yet. Treatments in Mexico simply load me up with billions of cells for the disease to munch on. Like pouring water into a pail with a hole in it. (18K an injection). Other countries still experimenting. Problem is, a stem cell is a perfectly palatable morsel for glutamate gone wild.
Other- in the works- hypnosis, self-hypnosis, energy healing, pot, past life regression, radical detoxification, acupuncture directly related to yin/yang , meridian balance, Chi Kung brain washing (the good kind), visiting Orlando with family (Sept. 1) Visiting New Zealand with Rachel (Sept 20)- the list will never stop. WISH ME WELL.
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