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.
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