About Brain Injury

“Are your eyes covered? I need a drink.”

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“Are your eyes covered? I need a drink.”

This is what my wife asked me last night as I was in bed. It seems absurd. Yet with brain injury it makes perfect sense, and it well illustrates what families with a brain injured person do all the time to accommodate their brain injured member.

I’ll break it down for understanding. If light changes suddenly, unexpectedly, my brain short circuits. I’m done. In that instant, I no longer have the brain energy to ignore the constant vertigo. I instantly need help to walk or I have to slump to the floor. Thus, before anyone turns a light on or off, regardless of where I am in the house, they announce it, give time so I can cover my eyes, and then turn it on. This has become normal for us.

“Are your eyes covered? I need a drink” was my wife’s shorthand for “I’m turning on the kitchen light and getting water, watch your eyes.” Just part of normal life with brain injury that most folks never see or understand. After all, a light going on or off makes no difference to them.

Brain Injury Patients’ Bill of Rights

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So we know, and our doctors know, we hold them to a high standard of care, expect them to treat us as chronically injured in need of long term care than does not harm us and that we are not faking or exaggerating what our brain injury does to us any more than someone with quadriplegia does their disability, I propose we begin having the doctors we see sign this Brain Injury Patients’ Bill of Rights and if they do not that we go to doctors who will.

Thoughts? Suggestions? Ideas for changes (what should be added, removed, etc.?)?

Brain Injury Patients’ Bill of Rights
We the brain injured name, assert, and require rights which by common decency ought not require statement or demand but which the current state of common medical practice requires.

We have a right to be the primary person in charge of our care (or our caregiver if they are our legal guardian), to make the decisions regarding what testing is best, if any, and under what circumstances that testing will occur so that it will not cause us harm.

Every brain injury is different. You may have seen one or ten thousand people with brain injury before you see me, but not one of them has my brain injury. Do many of us have many things in common? Absolutely. But the brain is the most complex organ in our body, controlling everything about us, so any combination of things can be scrambled. Do not make assumptions about my brain injury or its effects or my capacity. Ask me or my caregiver. We can answer whatever questions you have. You are a partner in our care, not a dictator or judge.

Brain injury is physical harm done to organic matter in our brain. We have a right to be trusted regarding our experiences and challenges and successes and needs and symptoms rather than to be presumed to be faking or exaggerating, or treated as if our issue is psychological. We have unseen physical damage. Because of this, things unseen or not realized by you can deeply harm us. This is not psychological, but use responding to protect ourselves against real harm that we really pay a price for. Respect and trust that. For example, you may not even hear the HVAC system that is pulsating and exploding in our brains. So what? We do and it has a torturous effect on us.

Once brain injury is established by means of objective testing or scans, we are to never again be treated as if no one knows the source of our symptoms. We are to receive accommodation so we have access to medical treatment without needing to recover for days from the overwhelming of our brain by stimulus others may not notice or other issues specific to our brain injury.

We require your inquiry toward understanding and patience along that journey rather than judgement at what seems odd, out of place, objectionable or otherwise wrong in your perception. Just as blind people may cross a cluttered room in the complete dark while a seeing person would stumble, so can people with brain injury who have learned to adapt do amazing things. Rather than question the brain injured person’s integrity, be amazed at their resourcefulness, ingenuity, and inquire by what mechanism they have made progress to perhaps others can as well, in the same way you would admire the blind person who has learned to navigate their world.

This document is not legally binding. It is, however, morally binding. By signing it, you the doctor I hope to see, agree morally with the above rights. This is not about liability, it is about with is right. If you can not sign it for any reason, please tell me and I’ll be on my way. If you choose to sign it, thank you, and I look forward to working with you for the best care possible for my brain injury.

Signed by Doctor:______________________________

Date: ___________________

This Brain Injury Patients’ Bill of Rights is created by Patrick Jones of www.MindYourHeadCoop.org and may be freely distributed.

Our Medical System: Acutely Brilliant, Chronically Inept

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Therapy and recovery for chronic issues looks vastly different than therapy, care, and recovery for acute issues. Part of my therapy is doing all I can away from the invasion of mechanized sounds, either in my Sanctuary Hobbit Hole or in the wilderness. I have far more capacity there than I do after 30 seconds wherever you are right now, which due to scents and sounds alone would reduce me to needing assistance to walk.

If you have an acute medical issue, bones sticking out for example, our medical system is brilliant and providing the care you need. However, if you have a chronic, long term medical issue, such as brain injury, our medical system is no only inept but often harmful and incapable of recognizing either, blaming you instead. Let me explain…

When I first found my current main doctor (a rehab doctor familiar with brain injury), I was excited. First, he believed me (so many doctors despite brain scans clearly showing the damage to my brain, did not). I eagerly tried his recommended drugs. They wholloped me and I learned that at least my brain is too sensitive to the effects of drugs to find them helpful rather than harmful.

Drugs. That was it. That was his arsenal against brain injury. My disability insurance company required me to see him less as the permanency of my disability was clear, so I ended up usually seeing him for 3-5 minutes a year. I would excitedly tell him whatever I was doing that was helping (going barefoot, diet changes, creating a sanctuary, etc.). He always seemed surprised when I’d mention the HVAC system being hard on me.

Did he inquire to learn more about how what I was doing might help others with brain injury? No. Was he interested in learning why these things helped me? No. Here I was, discovering foundational things that help brain injury (I believe most of them help chronic issues in general universally, including brain injury), and he has yet to see it as anything other than the weird things I do that help me and me alone. Seriously?

What happened to the eager medical doctor who yearned to know more about how the human body actually works and in the face of a wall of inability to offer anything helpful sought to learn more about God’s natural law and how to help people? Fiction, perhaps? So rare, it is more rare than my neurological vertigo, which is less than 1% of vertigo, and no one I’ve ever met understands it.

What helps me? Foundational things. Things that help my body help itself. Longterm, slow working, persistent, diligent things that nurture and promote recovery and capacity. Rather than run headlong into the wall of what I can’t do, I focus on what I can do, figuring that in doing those things far more often and paying minimal price for doing them, I will end up pushing the envelope in other ways, and slowly build neural connections. My therapy is what I eat (high fat, low carb. See “Grain Brain”). My therapy is running through the forest for a long time, activating my body’s natural healing mechanisms inherent to endurance activity, which includes natural levels of the same things found in illegal drugs (in a dose and form I know my body can handle and won’t harm my brain). My therapy is popping out from my Hobbit Hole sanctuary to play with my children for the 5 minutes that I can. When the problem is acute, the best therapy is head on. However, when the issues are chronic, the best therapy is focusing on what can be done, being sustainable, nurturing, healing and recovering. That’s how we recover long term.

Yes, it is incredibly odd that I can run for hours without food or water on the slopes of Pikes Peak but could not walk unassisted out a doctors office after being there for 30 minutes yesterday. Yes, to many ignorant folks, many doctors included, I no doubt seem uncooperative because I refuse to be in an environment harmful to me, though they do not even hear or see the things that are harming me.

The medical system is precisely the system you want to be in when you have bones protruding, or a heart stopped, or a blood clot in the brain. These people are amazing at handling trauma. If your issue is acute, these are your folks. You want them on your team.

Unfortunately, the same traits that make the people and system so excellent at acute issues are the same traits that make them inept at handling chronic ones. There is no equation for which drugs work because none of them actually are helpful, and science is showing more and more that they are likely harmful in many cases (see statins for heart care). They can’t even get basic nutrition right, believing a low fat, high carb diet is healthy. No, the anti-nutrients and lack of healthy fat is causing the epidemics we experience now. Cholesterol? Healthy. We need it. And lack of cholesterol is causal in metal deterioration such as alzheimer’s, MS, and others.

In being excellent at focusing on the broken needles and branches of the forest in their acute care, they miss the tree, let alone the forest.

Brain injury is a chronic, long term, life term recovery. Acute answers from acutely trained people are not answers at all. They diagnosed me, and they sign my disability paperwork (at least they have, we’ll see). But none of the things that have helped me have come from the medical community. And many of the things that have harmed me have.

Adrenaline and Friends Halflife

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It was only a few years ago I began to understand more fully the extend of harm to my capacity adrenaline causes and just how long it takes to leave my system. I suspect most of us with bludgeoned brains feel the effects of adrenaline and friends (there is a slew of neurochemical stuff released that no one is really sure what all it does) without even realizing it for the simple reason that we are under constant bombardment from stimulation.

Brain injury is the invisible injury and, while every brain injury is different, one very common symptom is the loss of the ability to filter out stimulation, so it hits our brains hard and full like an explosion. For me, very few things in nature overstimulate me (though I do not hang out around loud water falls often). A field of wild flowers in morning dew at 10,000 feet the summer? Amazing scents! The vanilla-rum scent of a water hole from several miles away alluring me in to the shaded niche in the scorching desert till it was a veritable symphony of scents as I ran through the surrounding horsetails with various subtle changes? Delicious.

No, it is the mechanized sounds and manufactured scents stimulations that impact my brain as weapons bento on destroying my capacity. And it works. But it does so, in part, by releasing adrenaline and friends.

Adrenaline is deceptive. At the rush of it we suddenly feel capable and able to handle the situation that triggered our fight or flight response. Do not be deceived! Get out, get away! To sanctuary!

This is, of course, the very purpose of adrenaline and friends. Fight or flight. Give us a short term boost of super power to handle the life-threatening situation at hand. But that boost is a debt against future capacity. Worth it so we can live rather than die, but when we are constantly accruing debt because of overstimulation, our functional capacity is diminished and may well be hard to recover.

In yesterday’s encounter with my doctor’s office (30 minutes, ending in a burst of TBI rage, aka adrenaline, out the office), the adrenaline gave me the capacity to overcome the deficits I’d incurred from the over stimulation (sound, scent, tactile). I was able to escape without having to be wheeled out. (Note, this gives the false impression to the ignorant observer, doctors often included, that I was making a bigger deal of the stimulation, and I really have a anger issue and need psychological help not brain injury help.). Education is essential!

Getting home at 9am-ish, I spent the rest of the day in my Hobbit Hole sanctuary, barely able to walk using the walls. Fortunately, I can often write in such a state, given a quiet enough environment, and my Hobbit Hole is newly fortified against more of the outside invasion of increased town noise, so I wrote about the experience as adrenaline coursed through me, giving me shakes, a racing pounding in my head, skull bones collapsing inward and exploding outward simultaneously, and a mind that is like a hamster on speed that can’t run fast enough on it’s little wheel.

I took my Adrenaline and friends protocol:
— 1000 mg Calcium Citrate
— 5000 iu Vit. D3
— 400 mg Magnesium Citrate
— 10,000 mcg V B12 Methylcobalamin, Sublingual
— 5 balls arnica montana 200CK
— 2 balls chamomile 12C
— Dark chocolate as desired (85% or greater)

Immediately after Bonk: Take 1 round of above
2 hours, 4-6 hours, 12 hours post Bonk: repeat.

Following day or two: take 4-6 rounds of arnica, chamomile, and B12 Methyl.

Return to aerobic, non-jarring exercise as soon as possible, even for brief periods. Aerobic = able to easily talk to someone next to you.

That protocol has cut the effects I feel from adrenaline dramatically. It still takes 2-4 days to recover from the small exposure I received yesterday. When we’ve made the mistake of continuing to car camp despite the fact that I was not doing well then was doing “magically” better (due to adrenaline), I’ve taken weeks or months to recover (generally 1-2 times the length of the trip).

At some point n the day or two after the adrenaline trigger has abated comes the adrenaline crash: I stop generating heat and can be cold no matter the temperature. I have no energy and no brain energy. I may sleep for much of the day or at least several hours (under heavy down comforters).

Then, in the days it takes to flush out adrenaline and friends, I always have a much shorter fuse to triggering my adrenaline again. So I have to lay extra low lest I dig myself into an adrenaline debt pit I need weeks or months to climb out of. That’s happened before. One big thing happens, then multiple little things kick me into the pit while I’m still recovering. The snowball effect, but with adrenaline rather than multiple concussions.

The silent price we pay for seeing doctors and being tested in environments that harm us is invisible, including to many of us because we are always paying it. To see the price, you have to escape out of overstimulation recover to whatever your actual capacity is, and then experience the sudden drop in capacity when again exposed to over stimulation. It is certainly invisible to the doctors.

I’ve found the best thing for adrenaline recovery is to use the above protocol, law low and quiet in my Hobbit Hole for several days, then emerge and begin doing aerobic activity in a quiet, natural setting.

UPDATE: It’s taken three days to reach the point that my head is no longer imploding and exploding simultaneously. It’s now in the “cottony” vacuous feeling stage. Experience says it’s another 2-4 days to recover fully, presuming my heightened adrenaline trigger doesn’t get triggered in the meantime, in which case I fall back into a deeper pit to crawl out of. Seven days of lost capacity is a ridiculously high price to pay for spending 30 minutes in a doctor’s office (and not even getting to see him) but instead be berated and belittled by him. The. System. Is. Broken.

UPDATE 2: Day four. Still feeling cottony and vacuous in the head and now unable to generate heat, so I am quite cold.

UPDATE 3: Day 13. Och! I got sucked into the quicksand pit of hair-trigger adrenaline rushes. It goes something like this. Had I been able to go two more days after day 4 without adrenaline, I would have recovered to the point that adrenaline would not be triggered by the smaller things. Unfortunately, I had to leave town and go winter camping on day 6, but a minor event in that triggered my adrenaline, causing me to come out early (fortunately, we’ve been blessed with a newly fortified sanctuary, and so the construction noise does not incapacity me as it would have otherwise). So, I am home now, and the whole family being stressed by the construction noise and debacle with my doctors has everyone on edge and little things keep happening before I recover, triggering my adrenaline rush anew and deepening the pit from which I must crawl. It is very challenging to break this cycle, and that is with understanding it.

UPDATE 4: Day 20. I’ve managed to get out on a few aerobic activities, and they are helping flush the residual adrenaline and friends out of my system. Of course, as that happens, I get the chills and crashes all over again, along with sinus activity (stuffy/runny nose). I’ve managed to not trigger my adrenaline for about a week now, so am hopeful that a few more days will see me through.

UPDATE 5: It’s is now Mach 26, 2014, and I am finally out of the adrenaline pit and I have a bit of brain cushion building up again, so I am roughly where I was when I when to the failed doctor visit 36 days ago. It took 36 days to completely recover from an attempted 30 minute doctor visit. I’ve heard harry a peep from the doctor I fired and am searching for a doctor who will see me.

What is your experience with adrenaline and friends?

TBI Torture, AKA Visit the Doctor. Something is Very Wrong Here.

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This was not like the experience I had this morning at the doctors, nor is it like any experience any person with TBI has ever had with a doctor. A picture from Dante Inferno’s outer ring of hell would be more appropriate for conveying that experience. Something must change.

People with brain injury who are highly sensitive to sensory stimulation (light, sound, touch, scent, etc.) face a horrible dilemma: be seen/tested by a doctor in an office/hospital that may very well harm them, or ask for accommodation to be seen, be scoffed at, refused, and turned away from medical care.

I know this from personal experience as well as from the experiences of the hundreds of brain injured people I have supported through email support ministry and this website. I will share my personal story here, but suffice to say the far too common response from doctors is both ignorance of brain injury and it’s realities and arrogance in denying service.

As a Catholic deacon, I used to attempt to serve at Mass at least once a year. I often took 3-4 days to recover after due to the scents and sounds (heater and air conditioning units in public building typically pulse horribly, blowing up in my brain). At one Mass, the priest forgot I could not have singing. Rather than kick in my adrenaline, I shut down. He did not notice and did nothing, but continue Mass. My wife wasn’t sure what to do (she knows now to just walk up and get me). So I stayed limp next to the altar throughout Mass. I needed months of recovery, and ever since, I have been far more sensitive to stimulation than even I was before. I have not tried to serve at Mass since.

For reasons I’ve yet to ferret out, my doctor, who specializes in brain injury, is requiring (before signing past-due insurance papers) that I see a neuropsych for 8 hours of testing and an ENT (ear, nose, throat) specializing in vertigo to determine if my vertigo is caused by ear or neurological issues and what therapies might be helpful or new. Sounds good on the surface, right? It seems reasonable to have current, objective data. But there are a number of problems:

— Why hold my insurance paperwork (and thus disability income) hostage? “Liability. Too much liability.” was his answer. Why not give me a year to get the testing done? “Too long. Too much liability!” Never mind we have a number of extenuating noise issues happening in our town now due to flood recovery that I can’t be in town for and thus can’t be tested during. Absurd.
— Simply entering most medical buildings I am greeted a wave of laundry and disinfectant scents as I approach from the parking lot. Open the front doors and I am hit by a wall of scents and the pulsing of the HVAC unit. That is with my ear plugs in and my Bose noise canceling headphones on. That’s an accessibility issue.
— Any testing, poking, prodding, and other attempts to obtain “current objective data” are most like torturous to my brain — overwhelming me rapidly.
— I have multiple tests clearly showing my vertigo is neurologically caused, not inner ear related.
— 8 hours of neuropsych testing for me is the equivalent of testing a quadriplegic with partial use of their arms ten years after diagnosis to see why they are quadriplegic and how much use of their arms and hands they have now to have current objective data. How do you test this quadriplegic? Put them in a gym, take away their wheelchair, and expect them to go from station to station to use each piece of equipment to the best of their ability — all while constantly poking them in the head with high voltage cattle prods. Torture chamber. No thank you. Come up with a better way to test me.

Today was my ENT appointment. This is what we brain injured so very commonly experience seeing doctors and how we are responded to.

My wife worked with them to find the quietest exam room while I waited in the car. She walked with her hand on my back (which helps me mitigate the vertigo in challenging environs) to get me through the foyer and waiting room to the exam room. Still amazingly loud and pulsing HVAC, that I could feel on my skin as it pulsed, blowing up in my head. But quieter than what I’d just been through.

Wait a few minutes, and they take me through highly scented hallways with various and changing pulsing HVAC fun to get my hearing tested. The “sound” room also had a pulsing HVAC opening, so was far from quiet to me. The earphones I am supposed to hear sound through creaked and popped on their own on my head, and even more so when the wires attached to them moved. Sounds and speaking at various volumes through just one ear or the other happen — all challenging on my brain, while trying to listen to the beeps over or under the HVAC, popping and crackling of the room and earphones. The doctor later told me that room is quiet (no, it is not) and that I show low frequency healing loss. I doubt it. I think the more likely cause of me missing hearing those sounds is my brain injury and being unable to filter out background noise that the ignorant, arrogant doctor thinks does not exist.

My adrenaline kicked in heading back to the exam room when someone suddenly and urgently steered me a different direction because I went into a wrong room. That was it. I was done. Adrenaline and friends kicked in and I burst out of there in a rage, like swearing up a storm (welcome to TBI rage!). All before seeing a doctor.

My wife helped me to the car, then went back to see the doctor and explain things and ask for accommodation so I could be seen. She put me on a speaker phone call with the doctor. We explained my needs and he said he could see in his offices there. I said I was asking for accommodation, so I could be seen despite my disability, that I was like someone in a wheelchair asking for a ramp. “Absolutely not the same at all,” and refused to explain why it was different when asked. He said he would not take me as a patient (whew! I don’t want a doctor so ignorant and arrogant as that) but would provide referrals so I could be seen elsewhere.

I replied “Going from torture chamber to torture chamber to see which is less torturous does not seem the best way to go about this.”

His response? “This is NOT torturous!” When I called him on it, asking him if he had brain injury, he dug in his heels even more, interrupting every attempt I made (calmly, according to my wife) to ask questions (that apparently were threatening to him). The doctor was the one hot headed and not allowing me to finish my sentences or thoughts and just kept loudly repeating “This is a quiet office! Those things are not torture!” (update, I just learned from my wife that she was escorted out of the office at the conclusion of that call. My wife, the very picture of decorum and grace, holding a baby in her arms. This is a system unable to treat people with due human dignity.)

This is not a system capable of understanding, let alone helping heal, many of the brain injuries people have. Until doctors learn what it is to listen to a patient, be compassionate, and put the patient first, treatment for brain injury will remain tortuous and possibly even harmful. This is a sad and sinful state for our medical community.

I am done paying the price for seeing doctors without the doctors knowing. I no longer accept that I must be tortured to be seen. I require accommodation to be seen by the medical system and I will leave any situation that is overwhelming to me, just as I do anywhere else.

UPDATE: It took me 36 days to recover back to where I was brain energy and adrenaline pit wise before attempting to see this doctor. See details of the recovery here.

Radically Reset Your Brain

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The best way to recover from brain injury is to enter life as fully as possible, going “as fast as we can, as slow as we must. These shifts in how we live help us access God’s engineering, which is the mechanism that helps us heal and function as much as possible, no matter what our capacity is. They are radical only in the sense that you won’t hear these ideas from most doctors or society in general. They are all based on the simple, profound idea that when we restore our bodies to the way they were meant to function God’s engineering helps us heal as much as possible, including our brain.

We are what we eat
Let’s start with diet. Perhaps the simplest way to describe the diet that has benefited me and my brain (much more stable brain energy and far fewer rage bursts, among other improvements) so significantly is I eat no processed foods, either in what I eat or what the animals I eat ate. None. The eliminates veggie oils, sugar, grains.

What do I eat? By calories, roughly 70-80% grass fed or wild caught fat, with the balance coming from grass fed or wild caught protein and safe carbs (potatoes, yams, white rice, veggies and some fruit).

In general, I eat once a day. When we fast for 16 hours or more in a given day, our body shifts into a ketogenic state, a fat burning state. Being in this regularly, daily if possible, gives our brains ketons for fuel, a fuel that is much better for the brain than glucose (sugar) for all but a small portion of our brain (which gets the glucose it needs from the body’s natural processes). So, if you can eat all your meal within an 8 hour window, then you are fasting for the next 16. THis ketogenic diet consisting of zero grain or veggie oils or sugar helps the brain heal as much as possible. I’ve been on a version of this diet for the last 6 years, and for the last 2 1/2 years on this exact diet. My brain and entire body function much better because of it.

A great source for understanding this diet, the source that helped me get onto it is the Perfect Health Diet.

Lose the Shoes
More and more studies are revealing the strong connection between our feet and our brain. Modern shoes block this connection in multiple ways. They are cushioned, which prevents the nerves in our feet from experiencing the world. They nearly always have a raised heel, which messes with our posture and our gait. They are not foot shaped, but have a narrow, constricting shape that binds our feet and prevents them from functioning properly. They usually have support of some kind, which further prevents our feet from being strong and functioning as God engineered them to.

For the last 4 years I have gone either barefoot or in simple, flat sandals or moccasins. Despite having constant neurological vertigo, I am able to run mountain trails and ride a bicycle, both of which help me recover when I am able to get out. How? A process called proprioception, in which my feet (unencumbered by the constriction and false support of shoes) tell my body where I am in space, so my brain doesn’t have to try and figure it out.

Taking off your shoes helps stimulate new neural pathways in the brain on throughout your body. Everything functions smoother.

Live on the floor
Furniture needlessly puts our bodies in positions they were not designed to be in and needlessly supports us. Cushie chairs and sofas and beds prevent us from feeling when it’s time to shift position and automatically doing so. The result is atrophied muscles, and patterns of movement that are unhealthy.

Floor live. All the time. Sit on the floor. Eat on the floor. Sleep on the floor. Work on the floor. It’s great! You always have a place to sit, because there is always floor. You will discover your body is both stronger and more limber and agile all the time.

What’s the brain benifit? Far, far less noise from the body’s disfunction. The less our brains have to overcome to interact with our own thoughts and the world, the more our limited brain energy can be spent on what we are doing, on healing, on living. We are much more free to enter life as fully as possible.

Breath Less
Most of us over breathe. At rest we should be breathing about 6 shallow breaths per minute. Breathing more than we need to ironically make our blood oxygen full by expiring out the carbon dioxide. The trouble is, we need CO2 for our cells to access the oxygen. CO2 is part of how the gaseous exchange happens at a cellular level. So when we over breathe, our blood is oxygen rich but our body (including our brain) has no access to it.

When I learned the Buteyko Method for breathing, I stopped having allergies and increased brain energy. My capacity to handle situations that overstimulated my brain increased. Why? Because my brain and entire body now had access to the oxygen I’d breathed in. The individual sessions are expensive. I learned simply by getting and reading their PDF book.

Create Sanctuary
Animals do it. They find a nice quiet place to recover, rest, and in our case as humans, create. Our recovering brains need sanctuary to heal. Yes, we need to engage the world and life as fully as possible. That’s made significantly more possible when we have a place that is distraction free, noise free, and allows us to rest, recover, or create as we need to.

Set aside a room in your home. Insulate it from noise and distractions. Give yourself space to lie down (on the floor of course). Create a desk with a kneeler to work on the computer, write, draw, read, etc.

This space is were you go when you feel your brain getting tired or when the world is bombarding you. It’s where you go to create.

Accessing God’s Engineering
There are countless other ways we can access God’s engineering and maximize our brains capacity to heal and our capacity to enter life as fully as possible. What ways have you found effective?

Snowball and “Less impact causes more damage” effects of Brain Injury in the NFL

From the Denver Post’s blog on the Denver Broncos:


On first and goal from the 2, Broncos halfback Rob Lytle, the rookie from Michigan, went off the left side, was hit by Jack Tatum, lost the ball, and Oakland’s Mike McCoy — of course, the defensive tackle from Notre Dame, not the younger man of the same name who now is the Broncos offensive coordinator — recovered and took off the other way with the ball.
But hold on…
Linesman Ed Marion ruled that Lytle’s forward motion was stopped and the whistle had blown before he fumbled. Replays, though, seemed to show he fumbled the second he was hit, before he was knocked back.
There’s a story here, and it didn’t come out after the game.
First of all, when I asked him to go through the “fumble,” Lytle asked, “What fumble?”
We both laughed, and then he explained.
“Honest to God, I don’t even remember the play,” he said. “I told you what happened to me the week before. [He was nailed in the Pittsbugh game.] So I must have had a bad concussion. I had headaches and stuff, but those were the days that you didn’t … well, it was a different era. You didn’t think anything of it. I didn’t play after that in the Pittsburgh game. They must have known enough to do that. I was out.
“But the following week, we’re down on the goal line again and we run pretty much the same play again I scored on [against Pittsburgh]. I went over the top and Tatum hit me. I can’t tell you other than what I see on film, because I was out. You get one hit, and another good hit to knock you out is that much easier, you know. I was out.
“The only thing I know that happened is that when you’re out, you go loose. The ball just stayed on my stomach. If they have instant replay, it’s their ball. But in that day there’s no way those referees could have seen that. I ended up landing on it but I was out cold. I wasn’t grabbing at it. As soon as I was hit, it probably squirted out a little bit and they were able to recover.”

As someone who has had numerous neurologists deny the fact that having one concussion increases the likelihood of having a second, which increases the likelihood of a third, and so on, AND deny that a small impact can appear to cause greater damage after a concussion, you are idiots. So many of us have paid for your stupidity with loss of brain function. If you do not know better now, in 2013, you are malpracticing. Learn your craft better. For our sake.

How Does the Sound of a Rifle Shot End Your Ability To Walk?

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One of the aims of running the Colorado Trail is to raise awareness for brain injury and how it effects those of us with bludgeoned brains. I got the question “How does the sound of a rifle make it so you can’t walk?” Excellent question! Brain injury is such a mystery and is mostly invisible that unless we ask questions and happily give answers, people will continue to not understand that what we live with and experience is real and happens because of physical damage to our brains, even though it may not make any sense to them.

In short, the filters everyone has that allow you to not get overwhelmed by the myriad of things always happening around you no longer work for many with brain injury. So flashing lights, scents, loud or sudden noises all go directly into the brain and hit it like a spear or go off inside it like a bomb.

Read here for a few ideas on how to “blindfold” yourself to experience the world like a brain bludgeoned person for a day.
The rifle was shot about a hundred yards away. I lost much of my ability to cut through my vertigo, making walking a slow going challenge, and it only got worse from there.

Spend a Day on Planet TBI

To a healthy brain this looks like a gentle kiddy ride. To a brain injured brain its a massive barrage of motion blur, flashing lights, sound axes to the head, and much, much more. Want your ticket to ride?

For those who want or need to understand what it is like (sort of) to be blind or deaf, that is relatively easy to accomplish. Block those senses. It doesn’t give an appreciation for what it is like to live without sight or sound day in and day out, but you get an excellent taste.

Understanding what someone with brain injury experiences is a big challenge. Brain injury puts us on a different planet, where sound, light, smells, gravity, thought and more are all amplified, thicker, stickier, harder, and otherwise completely different than you experience on Earth. Trouble is, we look like we live on the same planet you do, so what we experience is very hard to understand.

The following list is not as close a duplication of what daily life on planet Traumatic Brain Injury is like; however, it does come far closer than not experiencing anything. Here’s your ticket to Planet TBI:

  • Do not sleep at all the night before you begin this. Being sleep deprived mimics some of the stresses we live with all the time.
  • Wear at least one sound magnifying earbud (like hunters use), turning them to greatest amplification. Keep this in and on for all interactions. Many with brain injury experience intense sensory overload as our brains can not filter out sensory input. Things you normally ignore without realizing they are there are loud and disruptive, visually distracting, headache inducing smells, and more.
  • Wear on-ear headphones and iPod playing a type of music you find grating and stress inducing playing at a low lever (actually a medium level when amplified). Keep these in and on for all interactions. The constant barrage of stimulation we can’t filter out grates on us, much like always listening to music you hate. Also the stress of overstimulation creates difficulty not getting angry when seemingly small things happen (but to us, on our planet, they are huge weapons of attack).
  • Wear a magnifying lens over one eye (or a pair of high powered reading glasses with one lens removed). Every 5 minutes (see timer below), switch which eye the prism is over (you may need two pair for this). This helps mimic visual overstimulation very common for us.
  • Set an alarm to go off (loudly) every 5 minutes. When it does, stop whatever you are doing. Stand up. Turn around 20 times one direction, then 20 times the other direction while saying the alphabet backwards. We struggle to focus on anything we do, doing well to half task. This attempts to mimic these distractions, and show how hard it is to pick up where you left off. Also, many people with brain injury have some form of vertigo, so you get to taste that too.
  • If you’re warm, wear extra clothes. If you’re cold, wear too few clothes. Our bodies often experience difficulty regulating temperature, needing to huddle under a down blanket in the middle of a summer day, or wear shorts on a winter evening.
  • We could easily add more, to simulate a “hard” brain day (wear ankle and wrist weights, scratchy wool underwear, and more), but this will give you a taste, and we want your understanding, not your anger!
  • Live life as normally as you can until your normal bedtime, attempting to do all your normal activities.
  • End with a prayer for all with brain injury, that we be given healing and that we and our caregivers receive the graces of strength, courage, perseverance, and patience and love.

Everyone’s brain injury symptoms are different. This experience is meant to give a taste of what living with multiple deficits so common with brain injury is like. If you have a specific person in mind, you may want to ask them what they experience specifically, adding to this list to mimic some of what they live with.

Not sure you can handle a full day on Planet TBI? It’s the wimpy kiddy ride poser experience, but do the above for an hour and you’ll still get an appreciation for what someone with brain injury lives with all the time. Just make your hour at least in the afternoon after being up all night the night before, to get a better idea.

Do you have what it takes to taste what life on Planet TBI is like? There’s two ways to find out. I recommend the one that provides a two-way ticket. Grin.

Know someone you wish understood your brain injury better? Send them a link to this post, with the challenge to visit Planet TBI for a day!

Were you brave enough to ride? Share you experience in the comments below!


Doing Worse Reveals Improvements

Yesterday my youngest daughter, heading for 2 years old, short circuited me by flinging a basket in front of my face. Usually, I would “shut down” rather than enter adrenaline rush which leads to a deeper crash and longer recovery. But this time, I was holding her while standing, leading against a wall. I couldn’t just “shut down” because doing so would mean dropping her. My adrenaline was triggered because I did not shut down fast enough (it’s a very small window), and in sluggish, brain addled slow motion I thought things through.

“You’ve got to gently set her down and not fall on her. Good, now you’ve got to somehow get to the floor without falling on her or hurting yourself. Good. Now you’re crumpled on the floor, the baby is safe and it’s safe to shut down.”

I have no idea how long I lay there, unable to respond. I could not move anything. My brain was so overloaded it took a long while just to be able to open my eyes. I couldn’t move them in any coordinated fashion. I was locked in a body I had no control over. This had never happened before. This was new.

I continued to lie there. My family figured I had shut down as usual and let me lay there quietly. But it went on longer than usual.

Eventually I was able to move large muscle groups. Not fingers yet nor speech, but I could lift my hand at the wrist and allow it to drop to the hard wood floor with a knock. That got their attention.

Then we had to play 20 questions after learning the code for 1 knock is “Yes,” two knocks is “No.” I eventually wormed and was dragged back to my study, the door was closed and I received sublingual B-12 Methyl, 10,000 mg. By the time midnight rolled around I was able to talk minimally again and “wall walk” to the bathroom and to bed. I took extra Resveratrol and grape extract, which helped open my head and reduce my blood pressure, which had gone up into the lower side of high making it so I could not lie down. Then I took additional Magnesium Citrate and Calcium with some Vitamin D-3 (which I need to write about but have not yet).

This barrage of extra nutrients, vitamins, and minerals helped me recover to a point of functioning that has never been possible before I began taking them both regularly and supplemental when I “crash.”

In someone like me with long term brain injury, the chemicals that get released into the brain at such times of overload have a damaging cascade effect. These supplements help my body flush those hormones and chemicals out before they settle into place (that’s my theory, anyway).

It’s similar to a technique shown to stop the brain chemical cascade in the first hours after someone has a brain injury.

So, here I am, writing this down while I still remember it (tomorrow I won’t, without reading this). My fingers are working again. I can talk. Last time I had a crash somewhat similar to this, it took me a few days just to reach this point, then two months to recover most of my previous capacity (I am still more sensitive to some things than I was).

Because of the barefoot running, I am able to hold my daughter while standing at a wall, something I would not have done until recently. This has gone fine, until I short circuited while holding her — which revealed a flaw in my plan. I need to be doing well enough to set her safely down, and I can’t when I shut down.

People who see my wife after a long time ask how I’m doing. She says we’ve had many baby step miracles and life is much easier. But they are baffled as to how I can have so many improvements without being able to do more (from their perspective). “Pray you never lose so much capacity that you get to find out,” she tells them with a smile. That tends to leave them scratching their heads but silent.

My next step? Recover enough I can get outside for a run, no matter how short. That always accelerates my recovery.

May God startle you with joy!


Deacon Patrick’s Round the World Progress

Deacon Patrick's Round the World Progress