Not a good start

Dec. 31. On I pad. Last night I had a heart attack caused by many blood clots in both lungs. 1 large clot found behind my left knee. I am in icu at Methodist im stable or I ouldnt write this I'll get back don't fret

Back to the present

All canoeing adventures aside, Dillon said it best, 'and now the times they are a changin', faster than I would like. Despite my months of focus on a healing state of mind, I am beginning to understand that, regardless of my resistance to do so, I must now focus on the bleak future I may face. I cannot deny that I am apprehensive, however I can deny that I believe that the worst case scenario is in the cards for me. My curiosity always wins out, so I've watched many a video, read many an article and listened to many a person detail the horror and complications of advanced ALS.


I wouldn't call myself an optimist. Neither would I see myself as the opposite. My philosophy tends to lean towards the concept that my future is what I make of it. I am, given my situation, definitely, a proponent of quality over quantity. Any considerations pertaining to the level of treatment, the dynamics of such treatment and the extent of its application will be mine. Soon I must choose the road I will travel if I continue toward this worst case scenario, also plotting when and where I exit. There are financial considerations, there are familial considerations and there are emotional considerations to be applied that require me to decide sooner rather than later. My choice, however, will be made based upon how I feel I can cope with whatever decision I make. Once I reveal, I will not waver from my plan, and everyone will be able to relax and enjoy my company.

Yes, we are moving to Dallas in the spring, to join my daughter, Sarah, and her family, including her hubby, Tim, and my grand sons, Alex and Isaac.  Rachel, already establishing her photography business here, will also be taking her talents to Dallas. Nick, now living in Chicago, will soon be touring around the country in some fashion and we will likely see him in Texas as often as in Peoria. Keep in mind that our transition south in no way impedes our efforts to visit our many friends and relatives here. It's not like I'll need to take time off work.






Besides the obvious reason for us to choose Dallas, there are several considerations, including the fact that I'm probably a couple of months from not being able to navigate stairs safely. I can't expect anyone to catch me if I pirouette out of control. Winter snow and ice will be a major problem when transitioning to and from the car. Again, I don't want to put anyone in the position of having to catch me. Add to my winter woes here is the potential for the inevitable scenario whereby I step gingerly into the cold, hob down a few steps and realize I really, really have to pee. In my condition, there is no way on God's green earth I'm going to make it inside and to the toilet in time.

What is all the fuss?

Me, I have to live with the cards I've been dealt. My only chance at a positive resolution is to bluff my way past ALS. I've written many a post identifying my concepts regarding mental and physical activity designed to help thwart the progress of my disease. To date, I have no idea as to whether I've had any success at all. Back in the spring a cold blooded fish of a neurologist in Chicago told me I wouldn't be walking by Christmas. My plan was to set up an appointment in December, stroll into her office and (figuratively, of course) kick her in the ass. Well, while I can slowly rise from my chair and slowly, awkwardly, with trepidation, hobble a handful of steps, the only way I could (not figuratively) kick her ass would be if she were to lay on the floor, face down, while I laid beside her, on my back, Amy lifting my right leg, positioning it over her backside, letting it loose, burying my heel in her rump. Somehow, I can't see this scenario playing out with the effect I had desired. As a consequence to the feared play by play, I never made an appointment. Her loss is that she will never know what it is like to share an office floor with a stud like me. I suspect on her best day she drops the bomb on a patient and on her worst day she does the same. I win my battle with her by simply failing to add diversity to her life. Small victories- they all add up. In this case, my victory was obtained through inaction, the best kind these days as action is so difficult.

I am all about experimenting. My only concerns include my disinterest in throwing up, my abhorrence of acute pain and my fear of incontinence. I receive almost daily e-mails from the St. Louis chapter of the  ALS Association. Nowadays, I simply open them, skim the content and discard them. Not one communication offers a single suggestion for remedy. Fundraising positively trumps treatment and imagination. I understand the need to raise money, the need to raise awareness, but, to me, a handful of researchers scouring the world for alternative treatments might be more productive than a car wash designed to raise a few thousand dollars to fund research on the effects of certain chemicals on rats  infected with ALS. We've been running the same game since Lou Gehrig.

Think about this------ consider the last 100 years. We have gone from the Wright brothers to interplanetary travel. We have gone from Einstein to quantum mechanics. We have gone from Henry Ford to, well, Ford. We have gone from Alexander Graham Bell to Verizon. We have gone from a mechanical adding machine to the ipad. Technology, physics, engineering, aeronautics, transportation, communications and the like have transformed the planet while Western medicine, which views alternative and holistic measures to be archaic, has failed to advance at a rate comparable to other technologies. While the focus and design of Western medicine, for the last century, has been chemically based symptom treatment, the rest of the medical community, a larger family, has the resources of centuries of approach to healthy living, natural remedy solutions and philosophies and wealths of alternatives not considered by its counterpart. I'm not saying that either concept for health holds the key to unlocking the mystery of ALS, more so the Western medical researchers are looking under the pharmaceutical tree while the rest of the world is searching the entire forest. Meanwhile, I drink my herbs and continue to keep my feet in front of me, digging into the soil while clawing for anything that may increase my drag.

I'd better get busy

The longest stretch between posts has just passed. Family is still here and I want them to stay forever. So much having been taken for granted over the years has been supplanted with a realization of what is really important that I have trouble absorbing the impact. I see much in a different light, maybe not so bright, but clear as day. 

I could detail our holiday here but I feel Amy would be the better choice to weigh in, what with her syrupy, down home verbiage, her honest and happy approach and her heartfelt ruminations. I might be inclined to skewer the experience with macabre sarcasm, normally clever, here maybe inappropriate.

  

As for my health- the general subject of this string- I wish I were in stasis, but I can't seem to get my hands on a flux capacitor. I am tired of and generally disappointed in daily assessments. This complicated week I have lost the consistency required for an effective battle against ALS. Today I plan to get back into a practical rotation- Wet cell, meditation, Chinese herbal treatment, hypnosis, honey water, garlic, pine nuts........... each possibly a part of the solution, together, hopefully, a big enough piece to produce a positive effect. I'd cross my fingers if it were currently possible. 

Last week, I hinted at the prospect of our moving. Today I am letting the cat out of the proverbial bag. We are moving to Dallas in the next few months. My assignment throughout this winter is to avoid slipping on ice, cracking my skull open and spilling my brains over the snow, creating an artwork of red and gray, simultaneously relieving me of the only vestige likely to remain of myself if and when ALS takes over all that is left. I joke, in poor taste I know. With my nearly extreme lack of balance and diminishing strength, falling badly looms large. I, however, believe that EVERYTHING is a laughing matter when the opposite is negative or depressing. It is ALWAYS funny until someone loses an eye, so.......... until I actually fall and bash my brains out, everybody has my permission to laugh their asses off. 

Little sleep, too anxious

Soon the sun will be up and I'll have been awake for an hour or so. Family from Dallas arrives noonish and I can't wait. This Christmas is special. I'm excited and fruit dog (this term was coined by me some 20 years ago and means melancholy). A reveal: this may be our last Christmas in Peoria. 

I missed my calling this year. I should have kept the beard and bleached it white. Since picking up ALS, I have picked  up weight. All in my belly. I was told I'd lose weight. I was told to eat a lot. Add fat to my diet. Put mayo on everything. Leave it to the medical profession to get it wrong on nutrition. Never did they ask what I did for a living. Had they posed the question, they would have found out I burned more calories in an hour than the average middle aged man burned in a day. Once I quit working, as I followed their directions, my pant size had only one way to go- up. Now that the gut is staring me in the face, it's tough to get rid of it when I cannot exercise as I should. One consolation- It doesn't matter much that I can't see my shoes, I'm unable to tie them anyway. It's all good- I have a lot of big shirts. If you see me, feel free to call me a slacker. I'll recognize the sarcasm.

If you read my last post, you can see I don't give a darn about diet. Truthfully, most days  I do. Christmas time calls for exception. I'll set the Jazzy at a higher speed to burn more calories.

This week we received a month's supply of special herbs from China. We found a handful of clinics in China that have had some success in treating ALS patients- or maybe not. Rather than jump a plane to experience TCM, we bought herbs used in their treatment plan. If I show any measurable improvement that can be attributed to the tea, I plan to start learning Mandarin. I started the tea yesterday. Worst tasting crap ever ingested. Smells like chicken soup. Tastes like chicken shit, only worse. I guess Kids will be here in 4 hours. Can't wait. Whoa! I need a shower! Amy? whatever doesn't kill you makes you stronger.

Enough with ALS

Tomorrow, Sarah, Tim, Alex and Isaac arrive in Peoria and the Christmas season officially begins. I want to set aside all unnecessary conversation about my predicament and revel in the holiday. If I had a vote, I would change the name from Christmas to Family Day because I find the medicinal effect of my kids, their kids, my friends and my extended family to carry the day- Somehow, I think God would have it no other way.

This year all my kids are home. This year, more than others, will be about the kids. My niece is providing us with her beautiful new daughter to fawn over, Alex is old enough to remember this year and Isaac is no longer the baby he was last year, but a little man. The change in him, to me, is extraordinary. I expect nothing less than happy mayhem .

I cannot commandeer the kitchen as I once did, but my influence will be visible. On tap this weekend shall be- as an appetizer at Suza's- a crock pot of my personal best chili, toppings to include cheddar cheese and sour cream, adorned with Frito's Scoops for, well, scooping. At home, Christmas day, the opening bell will announce my Egg Breakfast Extravaganza. The later rounds shall offer a bone in spiral cut ham with my secret pineapple/orange attached glaze weep, cooked in and later slathered on. The championship rounds shall consist of- leftovers.

I expect to offer rides on my wonderful Jazzy both days. The only requirement is that you think I'M COOL. I promise not to bite. I will do my best not to break any ankles.

Let's lighten the load

I can only philosophize for so long while trudging through the muck of my situation. Lately, the muck has been running deep and stinky, filling my nostrils with caustic attitude, my neck sore from holding my face above it all. I gotta get out of this place.................


Let's go back 21 years. Sarah is eleven, Rachel is nine and Nick is seven. Summertime. I decided to take the kids canoeing. In Missouri. On the Current River. By myself. Nick can't swim a lick. In hindsight, Amy was nuts to let us go. The kids are still alive so you know this story has a happy ending.


I'd canoed the Current before, with a bunch of guys, a bunch of beer and with a bunch of inappropriate intentions. Our usual was to pick up canoes at Aker's Ferry, ride a bus up river, put in at Baptist Point and float back to Aker's the first day, put in at Aker's the second day and float, slowly, to, I think, Pulltide. I don't know how many miles exactly, but a healthy trip for two days. I figured me and the kids could move faster than a bunch of gravel bar loitering boat drunks (and I mean that in a good way- some of those guys are still alive and might stumble upon this post), so I planned to set up camp at Pulltide and run the river from Baptist in one day. Despite me in a canoe with a seven year old potential anchor and the girls in another canoe for the very first time, we actually managed to hit camp before sundown. Surviving the trip was fortunate for everyone- surviving unscathed did not prove to be an option.


If my recollection proves faulty or if I forget something, expect my kids to weigh in and set the record straight.


In the interest of expediency, I will jump to the insanities and heights of irresponsibility fair to heap upon myself. We can all laugh now, remember, because nobody's dead. I am going to limit this narrative to 3 episodes:


Episode one- Sarah and Rachel hit a half submerged fallen tree while navigating a long fast curve in the waterway, over turning and overturning, allowing the river to fill their canoe with all of the force of the flow, jamming their ride against the tree and engaging all their hair within the branches- a fortunate development as the canoe left from under them and abandoned them hanging. I somehow remember a heroic rescue by me. I almost crapped my drawers.


Episode two- We pulled over to an area where we could jump into deep water from about 20 feet above. Nick had no interest in even looking over the edge so he stayed with our boats. Sarah and Rachel followed me up to the launch pad. Sarah has no fear, so I jump first and she followed. Rachel couldn't even get herself to look down. We climbed back up and tried to coax Rachel to jump. There was no convincing her. After some more cajoling, challenging and teasing by Sarah, we both realized Rachel would never jump. She remained at least 30 feet back. Sarah plunged for the second time. I looked back at Rachel, shivering with  fear and turned toward the river to see that Sarah was safe when Rachel screamed bloody daylights and flew full speed past me and off the cliff. She hit the water mid-river, swam across, stood and waved. I almost crapped my drawers.


Episode three- Another cliff, this one higher at 26' (you ask how I know how high? I brought a tape measure) with faster water underneath and a harder climb to the top. Rachel and Nick stayed back cross river. Sarah and I crossed and climbed. I wanted Sarah to go first. She never hesitated and leaped out. I watched her hit the water and go under. I waited but she did not surface. I panicked and jumped  wide of where she submerged, came up fast and scoured the surface. No Sarah. I was afraid I'd miss her if I ducked under to look. Thoughts spun out of control. I might even have looked for blood. After what seemed like an hour had passed, she popped out of the water about 50 feet down stream. I barreled over  and yelled at her; she looked up at me, unperturbed, and simply stated "One of mom's flip flops fell off and she would kill me if I lost it, dad. Sorry." I almost crapped my drawers.


We all made it to the camp alive, I grilled hot dogs and we discovered the biggest danger of the weekend: the campsite toilets. And, again, I almost crapped my drawers.

Maybe a clarification.....

maybe vast confusion, maybe neither.

Every morning I unfold like a pair of rusty pliers, my muscles and tendons feeling like death clenches. When I finally summon enough strength to swing to a sitting position, usually with a friendly push from Amy, I rock back an forth to find my center of gravity lined up vertically over my knees and I push straight up. Once standing, I stretch again, careful not to strain too much and blow out a calf or thigh, my right leg performing a perfect thumper impression. I step cautiously toward the dresser, gain purchase, step to my left and grab my robe from a hook on the inside of the open closet door. As I slip my  left arm into the sleeve, my body reminds me  why I got up in the first place. A mad dash to the bathroom looks more like a blind man being chased by dogs. Once relieved, my day really begins, such as it is, such as they are.

Yesterday I wrote about fear and I touched on death, on dying. I probably elicited a cringe or two when I  broached the subject of afterlife using terms like judgment and halos and pitchforks. My intent was unintended. I have no interest in questioning anyone's faith, belief or religion. I have my own faith, and while it would seem unconventional to many, I'm of the belief that all faiths are unconventional. I prefer to strip faith down to it's essence, discarding any rules of engagement, all distracting proclamations and directives. Whatever I believe is my property. I'm not looking to sell it to anybody. I feel that everyone on earth is seeking the understanding of what is truth, each on a different path, all  paths leading to the same end. No matter your faith, the real conclusion and discovery will be the identical. To quote, I think, Yogi Berra: "Wherever you go, there you are!", or, if you prefer, Jim Morrison: "Slip on through to the other side".

Fear

I've rarely mentioned fear. Put yourself in my shoes and ask yourself if fear would be an emotion to deal with, and if so, what would you be afraid of? Pain? Increasing disability? Creeping paralysis? The loss of privacy, of dignity? Frequent muscle cramping, spasms? Losing the ability to swallow without aspirating food or liquid into the lungs? Requiring access through your gut into your stomach (something like the gas tank filler on your car), a shorter route food depository? A one inch tube sewn into your trachea to enable you to breathe? Losing the ability to speak due to an afflicted tongue, a paralyzed palate? Core weakness requiring a back and neck brace to remain upright in a specialized wheeled device? Massive loss of musculature, hyper metabolic digestion? Lowered auto  immune system? Complete quadriplegia? Infection? Blood clots? Pneumonia? Death? Judgement day? Eternal nonexistence? 

You can hypothesise, but you cannot know. I couldn't tell you how you might consider fear any more than you can understand mine. 

My fears? To my core, none of the above. I consider it seriously peculiar that fear is not one of the emotions I must deal with and rail against. Don't get me wrong, I am cautious when I stumble near the edge- after all, I don't want to crack my skull, I don't want to complicate my already complicated life- so I remain wary. 

I follow no process to ward off fear, I am simply not afraid. I figure if this stuff creeps up and grabs me, even day by day, I will be able to adjust to it all, day by day, essentially fielding the volleys as they come. As horrendous as ALS is, the disease gives me time to deal with its symptoms. If everything were thrust upon me at once, my coping methods would be overrun and I'd likely panic. 

Most interestingly, I do not fear death. I do not believe I will be judged and placed based upon the kind of life I have led. I'm not looking to discover a gold ring over my head or feathery wings behind me, or for that matter, horns or pitch fork (how did a farm implement become a tool of hell?). For me, I don't know what happens when I die, and furthermore, I don't care. With the life I've had, I don't need to think I'll be going to a better place simply because I can't imagine being away from my friends and family would be more fun. So dying is a downer, I don't expect to do so, and living will be the option I take as long as it's presented to me. Living is a sure thing. Dying, I know, is also a sure thing, but one that needs to be put on top of the procrastination basket. After I'm dead, nothing is a sure thing. I  suppose, lacking the fear of the unknown, seeing death as an unknown gives me no basis to be afraid.

From all I've read, ALS simply constricts people like me, hoping to squeeze the life out. I can play it a couple of ways- I can tighten my gut and fight or I can exhale and slip from its grasp. I'm beginning to lean toward the latter.

Another day, another story

I have a morbid fascination with the goings on within my body. It is difficult to define the particulars without a control with which to compare. I'm really not interested in discovering the extent of symptoms of other ALS sufferers simply because I would rather learn mine through my own experience without external influence. My journey must be virgin. I would rather be blind to the possibilities, my brain uncluttered with the angst of the paths of others. I've had enough negative imprints to shrug off, those informing me of my mortality and my fate without a visual imprint of where I might end up. Mystery is much more inviting than probability or statistics. For those not afflicted, likely also many of those who are, knowing what's coming would be the preferable track. Problem is, nobody can guarantee the progress and those who claim to know are charlatans, damaging anyone they delude, afflicted or not. If I'm told I'm going to get punched in the face, I brace for the shot and take it on the chin; If I'm told I might suffer an assault, I can devise my defense knowing getting hit is not a forgone conclusion.

Breathing, swallowing and talking

I am, I am and I do. Breathe. Swallow. Talk. A lot. All the time. Hopefully not borrowed time. So far, ALS has been sated with the consumption of my arm and leg muscles. It has reveled in attempting to trip me up and eat into my stability and confidence. I am determined to continue to skirt the abyss and push myself beyond any expected capability,  all the while knowing I'll likely hurt those around me more than myself if I crash and burn. I need to push myself both mentally and physically lest I fall into a chasm of resignation. I will walk with risk, always ready to "trip the light fantastic" whatever that means, likely not stumbling over a Tiffany lamp. If my fingers continue to curl, I will continue to force them straight. If my knees buckle, I'll pretend I'm dancing. If all else fails, I'll flail around seeking to grasp anything stable and pirouette one handed to the floor. Funny it is that if I lean even slightly in any direction I run the risk of becoming a human juggernaut, propelling and accelerating until I either dive bomb to the ground or halt at an obstruction. If I eliminate the potential for pain and injury, the visual imagery is hilarious. I might have to label myself the "bumbling ALSer".


A tough realization is that now, with my condition, I cannot be a protector, relegated to the ranks of those needing to be protected. I have spent my whole life protecting: physically standing up to any kind of aggression, handling any financial dangers, foisting my verbiage upon those who intended to insult or upset my family, bucking the cheaters and con men. While I can still deliver a potent tongue lashing, I am helpless if things become physical. Adding to my dismay is that I've been involved in Taekwondo for 24 years as a student, teacher (15 years), 5th degree blackbelt master (7 years) and would now loose a battle with a Ziplock. If the house is burning, figure on roast Tracy for dinner, because I'm not going anywhere fast. I have to accept that two years ago, I could outrun my entire family, whereas now my 18 month old grandson can dust me (unless I fell on him and got back up quickly to finish the race before he recovered and whipped my ass). All is not lost, though, as I am apparently still adept at hurling sarcasms and demands, crossing every line of civility and reason, often as a result of my frustrations with my limitations. Don't for a minute believe I see this as a positive development. All is not lost only because I still have the fight in me to be cantankerous. My wife, inundated with a million new duties and responsibilities, takes the brunt of my ass holeness (crude, sorry). I have designated her protector general manager, while Rachel is bodyguard emeritus. I am a king on a Jazzy, demanding everything of my minions. I intend to make myself a fair king, a just king- one who rules from his roost with a kind gesture and soothing words for those who care for me. All I need now is to find the source for a personality transplant.


All kidding aside, I've come to a point where I must weigh my words better, careful not to alienate myself from others. While I will never accept fate, I must accept reality. Meantime, look for me at many public functions, either hobbling, rolling or stretched out on a borrowed gurney. In the next few weeks, Nick will be performing in Peoria and I don't want to miss feeling the pride that temporarily drowns out my ALS.

I hope you've prepared........

I am home from Florida and back at it, although not at the Cyberpower super computer designed to withstand the most graphic heavy gamer use available. That PC piece of crap is presently fried green tomatoes. I switched my Logitech keyboard to my always functional, always reliable 8 year old Apple G5, knowing deep in my heart that my PC experience is not a rare event, but the price you pay for the price you pay. I erroneously thought that my PC would have been too embarrassed to crap out when residing right next to a fully functioning Mac that is old enough to be its grandfather. I am convinced, now experienced with both platforms, owning a Samsung net book slow junker as well as my PC desktop, that any criticisms of Apple are borne out of jealousy, inexperience or ignorance. My guess is that those hard liners would rather suffer through ownership of three $800 trashcan worthy HP's than one $2,400 long lasting, faster Mac. I could do without the aggravation.

Enough about the nonsense. OH, maybe not- my loving Kindle is apparently out to a permanent lunch. It might be caused by my reading selection, now lost- Steve Jobs. Don't it figure.

It's time to explain why we found ourselves basking in the sunshine of Naples, Florida this past week. We have friends (I am ever thankful for them all), in this case, friends who have a beautiful 3,800 square foot home on a canal in Naples, a vacation home replete with a pool, outdoor spa, indoor Jacuzzi and myriad amenities. They simply handed us the keys and said "have fun", which is what we did. I plan to put Amy at my desk to describe an amazing week. Look for it.

About my condition:

It still sucks to be me. Of course, it would suck a lot more if not for all the love and support I receive, but it still sucks. I feel it necessary to update my condition at least each week because I read changes in my physiology nearly every day. Sadly, these changes are not for the better.  My capacity to function physically is partially measured by my capacity to cope. I am much less steady than a month ago. My fingerprints can be found on every surface within reach. So far, no prints can be found on any floors, nor can be found any clear footprints since my walking mimics what you do to mix up a deck of cards. When fingerprints are found on the floor, you will know I've splatted. Likely, only right hand prints will be visible since my left refuses to cooperate. Nose prints may also be available, sorry for the blood. I have a hell of a time lifting my left foot high enough to enter a car. Usually, Amy guides it over and shoves my butt into the seat. She is very good at levering me- into a car, a bed, a chair, a couch, the pool, the bathtub, the shower; I lever myself onto the toilet, just in case you were wondering- and I know you were wondering.  Drying myself off after a shower is highly ineffective, posing a definite problem when dressing- try pulling tidy whiteys up wet legs with one hand. Hell, I have enough problem finding the leg holes without snagging a toe. Socks can stay in the drawer. A shirt? As long as one is close by, the pits don't stink too bad (especially the right one, usually a near miss with the deodorant), and very large, I'll slip it on. By this time I am so exhausted that the idea of walking melts down to riding in the chair. I need two hands to drink coffee, one weak, one worthless, both burned. My left shoulder screams for steroids as the weakening continues to wreak havoc with my tendinitis. My feet are beginning to swell as I approach a more sedentary life. If I could walk more I would, but I know those around me see me as an accident waiting to happen. In my case, a big one. Other than that, I continue on as jovial as ever as I prepare for Christmas, even donning a big belly and exhaling a hearty "oh! oh! oh! You want more? I'll give you more. Tomorrow.

Still in Florida

It's not cold, it's not raining and it's not snowing, it's not windy (though a breeze flows), it's not hot, it's not overcast and the pool feels splendid. I have a lot to tell, however the positioning of my laptop keyboard will not allow me to type for very long. When we get home, expect a tsunami of posts- until then, please enjoy a break from my drivel.

I'm still around

This is the longest span between posts since the inception of my blog, and is to be the shortest. I failed to explain that we are in Naples, Florida for a week. I'll get back soon.

Emotional sources

Before I get involved in the emotional roller coasters attached to traumatic events, illnesses and calamity, let me explain to you my position and belief when it comes to the association between my psychological issues and those physical, in this case ALS.

I have determined, and conclude that there are no experts in the world when it comes to ALS. Neither modern Western medicine nor ancient Eastern medicine really have much of a clue as to the origins of the disease or how to treat it. My need to visit my neurologist is fairly non-existent. I know what's going on, I'm dealing with it as best as I can, and until I get a phone call from him expressing a new, effective treatment course, I will manage my own method, thank you very much. I am not deluded into thinking I can do this by myself; the support I need is already in place, and it does not include doomsayers and warners. I believe I'm smart enough to ready myself for the worst case scenario, all the while ignoring it as I deal with the steps I take day by day. I am my best expert. ALS is a disease that can be identified only through an individual, case by case study. A scientist or doctor can study it, log his observations, make his report and come to his conclusions, but unless he has the disease, he will never really understand it. Even if he's afflicted, he will only have the information pertaining to his own version. Also, keep in mind that a clinical scientist hasn't a clue how to analyze the emotional trauma, which leads me to...............................................

Schools of thought vary in their analyses of heightened emotional activity related to ALS. Some feel ALS is the culprit responsible for emotional distress. I say yes, though indirectly. If I had terminal cancer, the cancer would be the culprit. If I broke my neck and ended up a quadriplegic, the accident and it's result would be the cause. Lesser trauma, coupled with pre-existing issues might well produce even more emotional dysfunction. The only way to analyse emotional issues is through the patient, in this case me, and his ability to set into motion mechanisms helping him to cope. Identifying and compartmentalizing emotional causes has nothing to do with any specific disease. Labeling and generalizing outbursts as ALS symptoms is simply inaccurate. It is easy for me to blame everything on the ALS. It is also wrong.

As personal testimony and experience tell me, I can easily tell you that my escalated emotional discomfiture can be divided into two groups.

Group #1: Casually, I'll explain- an example- I may be watching television and during a scene involving angst, sorrow or reconciliation, joy, or most other scenes emoting any kind of human interaction, a phrase or visual cue will cause me to tear up. These are trigger moments. I instantly take the bullet that forces me to envision a familiar comparison to my  own life, my own situation. These incidents are not long lasting. I see them as little releases. I see them as good for me.

Group #2: Expressed emotional release based on realization- I might struggle at something, become frustrated and break down as a result. The trigger here is usually related to my incapacitation, my diminishing abilities. I might forge foolishly into the dark, "worst case scenario" of my future and feel sorry for myself. In any case, I feel this is not particularly medicinal for me, possibly necessary.

I find myself easy to read. I can assess my condition  better than anyone equipped with all the standardized information printed. I don't care if a doctor or a care giver or a shaman or a priest or anybody else out there has dealt intimately with a thousand ALS sufferers, they do not have the ability to understand my version of the disease, they can all only work to  help me cope. A human cannot tell a centipede how he feels until he walks a mile in its hundred moccasins. I am the centipede.