TBI

Traumatic Brain Injury and Oxygen: Understanding the Role of Free Radicals

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In using a fictitious example, the mother of a football playing athlete takes an interest in a head injury sustained by her son. Perhaps she wanted to know why he developed certain symptoms and what sort of treatment might be helpful. Doing her own research, she has been confronted with a mysterious, often repeated, discussion about “free oxygen radicals” in the brain in relation to head injury. This post may hopefully take some of the mystery out of the discussion and even suggest a means of prevention.

Burning a Fuel Is Oxidation

The chemistry of energy metabolism as it affects the brain/body is exceedingly complex. However, in order to illustrate the principles of oxidation (burning) perhaps, it can be seen in the simplest terms by recognizing what happens when we burn (or oxidize) something such as a sheet of paper. The paper does not ignite spontaneously: some form of energy has to set it alight. When we strike a match, energy is consumed by the arm and hand of the person that does the striking. This energy is used to move the match against a rough surface and the friction causes heat energy to arise and light the match. Energy is required for each step. Having applied the flame from the match to the newspaper, we have transferred the energy and the match is incompletely burned. In each case, the match and the paper act as fuel, and the heat energy released is produced by the fuel combining with oxygen. Because of incomplete combustion, both the paper and the match are converted into ash, the leftover unburned portions.

Speed of the Oxidation

In this simple case, the heat energy is released into the atmosphere and disperses. The energy cannot be used to perform work. The same thing happens with an open fire but there is an additional factor. For example, if we blow on it, the fire burns more briskly. Sparks are produced that may set fire to the surrounding dead grass. Energy has to be captured and controlled to do work. Any form of burning, combustion, fire, or singeing (we have many words for the process) is produced by a fuel combining with oxygen. The resultant energy is used to do work. Combustion is never complete; some form of ash is left over.

In the body, we burn glucose and the term used is oxidation. The “ash” is carbon dioxide and water, both of which are partially lost in the breath.  It is the speed of the reaction that makes a difference in the rate of energy production. Singeing is a very slow combination of the material with oxygen whereas an explosion is an extremely fast reaction. Neither of them could function without oxygen. The production of sparks from an open fire may be used as an analogy for free oxygen radicals. This part of the post may be overkill, but I am discussing everyday phenomena that are frequently taken for granted.  Little or no thought is generally given to the mechanisms involved.

What Are Free Oxygen Radicals?

I have already compared them with sparks from an open fire. This means that oxidation in the body can be slow or fast and the speed of the reaction has to be controlled. Too little oxygen is as bad as too much, encapsulated as “all things in moderation”, arguably the most important philosophical annotation that has ever been conceived, since it applies to everything.

As already indicated, glucose is the major fuel of the body, particularly for the brain. The oxidation of glucose is mediated through a series of vitally important enzymes, yielding energy that is stored in the cell as a chemical substance known as ATP (adenosine triphosphate). An inexact analogy would be that a head injury acts as a form of stress that requires a vast amount of energy consumption to adapt to the injury. The rapid oxidation that follows gives rise to free oxygen radicals that are the equivalent of sparks in a vigorously burning fire. The “sparks” are thrown out of the “fireplace” in the cell and “set fire” (oxidize) to surrounding tissues, thus causing the damage. It is often difficult for people to understand that the energy required to give rise to mental and physical function is from a form of combustion induced by chemical reactions. The chemical energy has to be transduced to electrical and is the reason why we can measure the activity of a given organ such as the heart by the electrocardiogram and the brain by the electroencephalogram.

Note that oxidation does not occur spontaneously. The glucose must be “ignited” and vitamins are the equivalent of a match. Although it is a poor analogy, vitamins liberate and transfer energy. It is of course extremely important to recognize that energy is something that we cannot perceive in any way except by its effects. We cannot see heat energy but we can feel its effects. We cannot perceive the energy that drives the brain although we can appreciate the thoughts that arise from its consumption.

When we eat food it becomes the fuel that has to be oxidized, releasing chemical energy. That chemical energy has to be transduced to electrical energy to drive function. It must be stated that our bodies are constructed according to a code known as DNA. If that is imperfect, we may have “a genetic effect” responsible for disease. In addition, if the food does not contain the right fuel or does not contain the factors that ignite it, the effect is disease. The central figure is energy. Symptoms are sensory effects in the brain that indicate that “something is wrong (for example) in your left elbow”. Pain is felt in the brain, not the part of the body with inflammation. A genetic error may not initiate disease by itself. It often requires nutrient deficiency and/or some kind of stress such as an infection, trauma, or prolonged mental stress. Any one of these requires increased energy expenditure to adapt to the stress, in much the same way that a car uses more energy derived from fuel consumption when climbing a hill.

Traumatic Brain Injury

Traumatic brain injury is a significant cause of death and disability. The primary impact causes initial tissue damage which initiates biochemical cascades known as secondary injury. Free radicals are implicated as major contributors to secondary injury. Another manuscript reports a study on rats. These authors induced thiamine deficiency and found that there was an increase in free radicals in the brain. Exercise stresses body chemistry that depends on thiamine, riboflavin, and vitamin B-6. The requirements for these vitamins may be increased in active individuals, particularly athletes. Biochemical evidence of these deficiencies in active individuals has been reported, but studies examining these issues are limited and equivocal. There are no metabolic studies that have compared thiamine status in active and sedentary persons. These authors state that exercise appears to decrease nutrient status even further in active individuals with pre-existing marginal vitamin intakes or marginal body stores. Thus, active individuals who make poor dietary choices are at greater risk.

The ability of humans to respond to stresses, such as altitude, heat, trauma, surgery, or infection can be influenced by nutritional status. Hans Selye is the most famous scientist who studied the effects of physical stress on animals. He came to the conclusion that energy was necessary for the animal to meet the demands (adapt) imposed by any form of stress and that it was energy failure that was responsible for the animal’s collapse. He formulated the idea that chronic human diseases were the “diseases of adaptation”, implying energy insufficiency as the underlying cause. This suggests that the acute phase of an infection is the defensive, adaptive reaction that requires nutritional perfection to supply the energy.

Protection Versus Treatment

Currently, the only method to try to prevent brain injury in athletes is protective equipment and the statistics indicate that this does not seem to be very effective. That nutritional elements might have a protective effect on brain injury might seem like an absurd disconnect. We have repeatedly emphasized on this website that food choices are poor in the modern world. The diet for many people is laced with empty calories that challenge and overwhelm the mechanisms that govern oxidation. The vitamin content may be adequate for a well-chosen diet of natural foods but inadequate in relation to the empty calories, a state that is commonly present in young people in particular. We are well aware that measuring the concentration of thiamine in the blood, the usual and customary practice of attempting to identify thiamine deficiency is usually perfectly normal in mild to moderate deficiency. If our resolute hedonism causes us to continue making poor choices, perhaps it would make sense to add vitamins as supplements, an idea that has been castigated many times in published statements. This is because it is widely believed that “vitamin deficiency” in an advanced country like America is nonexistent. Finally, I must say something about treatment. There is some evidence that intravenous infusion of water-soluble vitamins given to an athlete that suffers from the symptoms of brain injury can be at least partially relieved. This is basically because these vitamins play a vital part in controlling the use of oxygen in cellular function. Without understanding these basic mechanisms, the use of intravenous vitamins to treat brain injury would be incomprehensible.

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This article was published originally on June 7, 2018. 

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A Personal Journey With Traumatic Brain Injury and Nutritional Therapy

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Pork and Blue Sky

My first realization upon waking up from the fourteen-day coma was that I craved pork. I was sixteen, I had no clue that I was in hospital, and the patch of pale blue sky through the small window above my head held a hypnotic beauty. Later a blonde man visited. “I feel like having pork,” I told him. For weeks afterwards, my father would choke up when relating the first words I had uttered since being run over by a car. The head injuries caused me to look like an extra in a zombie movie, and upon my submission, neurologists felt compelled to prepare my family for the worst. “We don’t know if she’s going to make it,” they cautioned, “and if she does, it could well be with limited brain function.” After this grave preliminary prognosis, my banal announcement after waking up seemed miraculous to everyone.

After the brain and head swelling had sufficiently subsided, a battery of tests and scans confirmed the diagnosis of traumatic brain injury (TBI) to the left frontal cortex due to severe concussion. There was also evidence of brain hemorrhaging, which was speculated to have been relieved by an injury that allowed for the blood to drain through my left Eustachian tube. To this day, I have a constant ringing in the left ear but without affected hearing; like with other parts of my body, the TBI turned out to be less severe than it seemed at first. Doctors considered me a ‘freak patient’ who proved the exception to most every rule in their textbooks, and were amazed. My family was relieved and grateful when I started appearing to be my old self again after a few months. Yet, for me the world was a different place after the accident

Who Are You?

I didn’t feel like ‘my old self’ at all. In fact, I didn’t know the person in the mirror and would stand for long periods in front of it, astonished at ‘meeting’ myself again. I still have no recollection of the accident itself, and it took time before I would recognize faces and remember names of even those close to me.

The Black Fog of Traumatic Brain Injury

I struggled to walk in the beginning, partly due to then-undiagnosed knee and back injuries, and needed assistance with eating, but fortunately these functions were soon regained. However, I felt socially very awkward and disoriented. I consciously mimicked others’ behavior to fit in and appear normal – a stressful and exhausting exercise, so I mostly preferred to be alone or with only my family. Another enduring change in behavior was my sleeping patterns, which had me going to bed as early as 7:00 at night, and sleeping till 9:00 the next morning. These, together with mood swings, raised my parents’ concern. I was sent to see a psychologist for assessment, but the absentminded man declared me fit and fine after about 30 minutes. Yet, to me it was like a black fog had enveloped my head in a miserable snuggle. I remember feeling simultaneously amazed and despairing that a professional was unable to spot how tired, unfocused and unhealthy I felt.

After my miraculous survival, this was unfortunately the dark lens through which I saw the world, with the feelings intensifying over time. Despite this, I functioned well. I finished school, completed a four-year Higher Diploma with distinction, and could work and fully support myself. Yet, one night when sitting on the bed in my dark flat and gazing over a sleeping city, I thought for the first time: “I wish I was dead.” It was over a decade after the accident.

The Black Dog: Depression and Traumatic Brain Injury

This memory stands vividly because till then, suicidal thinking and death ideation were foreign to me. It also marked a moment of registration that I desperately needed to feel better – death for me had brushed too closely before to flirt with. It was not going to be easy, though. I was in my late twenties, yet still excruciatingly insecure and unsure of myself in many situations. I felt like a boat aimlessly adrift on life’s ocean, and often didn’t have either physical or psychological energy to follow through on new endeavors. I had one or two close friends, but still I avoided social gatherings, and romantic relationships were difficult to navigate at best. I was furthermore assailed with feelings of worthless, and my mantra was a helpless “I can’t…” It was undiagnosed at the time, but by now Horace’s proverbial black dog (depression) had joined the black fog.

Enter Nutritional Therapy

My first breakthrough came when a friend gave me a bottle of yellow, strong-smelling supplements, suggesting that it would help with stress. It colored my urine, and caused the brain fog to lift momentarily for the first in a very long time. The relief was indescribable, and I guess it could be said that that excellent B-Co-and-herbal supplement launched my journey of conscious healing from traumatic brain injury. I’m happy to add that I haven’t looked back since, so to speak. I will proceed to discuss some of the nutritional therapies I had found most helpful over time, but the list is by no means exhaustive. Also, I’m not a medical doctor, so especially in the case of grave illness, a qualified health practitioner be consulted before any complementary medicine is taken.

As with all things – better the quality, better the outcome. I strongly advise investment in well-researched and reputable supplements for optimal results.

Beautiful Bees

It is well known that the eight vitamin Bs are central nervous system (CNS) and brain nutrients par excellence. Deficiencies are associated with mental disorders as serious as dementia and schizophrenia, and I can recommend taking a good vitamin B-complex for especially depression and fatigue due to prolonged stress. Interestingly, pork is rich in vitamin B1/thiamine. My clever body had known what it needed. Vitamin B6/pyridoxine is also known for its anti-inflammatory effect on the brain. As mentioned, taking the vitamin B-Co-herbal supplement for the first time was CNS bliss! However, without a certain magical mineral, the relief and energy vitamin Bs offered were unsustainable.

Magical Magnesium

Magnesium is crucial for proper cellular function and vitally important for the central nervous system’s healthy functioning. A deficiency can cause everything to go out of whack. Mineral deficiencies have multiple causes, and for me it was prolonged, covert stress due to TBI, and estrogenic birth-control pills. The first dose alone caused me to feel as vital and alive as one would, jumping in cold water after years in a sweltering desert; it was magical and shocking! Magnesium supplementation is contraindicated for those with severe renal impairment.

Ooooh-Mega-3

Omega-3 is a fatty acid that the body doesn’t synthesize, and deficiency is caused by an over-consumption of Omega 6 foods. Severe lack of omega-3 can cause chronic inflammation which, in turn, can result in a host of serious health issues. Supplementation has proven its worth in treatment of many diseases, including depression, bi-polar disorder, ADHD and dementia, and there is strong evidence of its neurorestorative properties for treating traumatic brain injuries. Diabetics and persons on anti-coagulants or medication for cardiovascular diseases should take omega-3 supplements only under medical supervision. I found supplementing omega-3 in the form of a high-quality fish oil or cold-pressed flaxseed oil to be soothing and mood-balancing.

Homeopathy-happy

Despite its reputation as a scientific pariah, homeopathy is worldwide exceedingly popular as a natural treatment, and holds a special place in my heart. For me it was first to point to a causal link between traumatic head injuries and depression, and there is evidence of its efficacy in treating mild TBI. For me, the remedies helped immensely. Only qualified homeopaths can diagnose patients and dispense homeopathic remedies, which are always patient-specific.

The Edge Effect

Dr. Eric Braverman and his PATH clinic for brain health are controversial and often get bad press. I cannot vouch for either the good doctor or his clinic, but I believe that following the supplement and dietary advice in his book, The Edge Effect, saved me from a sure breakdown during a period of catastrophic and prolonged stress. Through questionnaires, Braverman determines a person’s temperament according to the actions of four neurotransmitters. Based on the results, he provides a list of temperament-specific supplements and diets as means to maintain mental balance and neural health. The ketogenic diet prescribed for my Acetyl-choline temperament is one I naturally gravitate to, and it’s also one on which I maintain a good weight, feel the most energised and think the sharpest. Braverman, in addition, claims that his diet and supplements slows down brain aging.

Growing Older: Dementia, TBI, and Nutrients

The astute reader would have noticed that ‘dementia’ popped up several times, a brain-degenerative disease usually associated with older people. It deserves mention because there is evidence that TBI elevates risk for developing dementia. Nutritional therapy works preventively against brain aging, and can sometimes even reverse age-related symptoms. It can usually be started with good effect at any age, but is not a magic bullet. An elderly person should never be given supplements without consultation with their doctor first, and it is especially important to discern when home care becomes necessary. My father was recently diagnosed with vascular dementia, which is hereditary and, if anything, this spurs me to take even better care of my precious grey matter. It certainly deserves it, given its hard work on this journey healing from traumatic brain injury.

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Mamas! Don’t let your babies grow up to be…

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Traumatic Brain Injury and Contact Sports

In football, hockey, rugby, wrestling, boxing and other physically grueling contact sports, one has to be a bad ass to survive. The impulsive, aggressive behavior of the male jock is in many ways an accepted, even expected, part of the culture of sports. Heck, even the poor academic performance of some athletes is a running joke at many universities.

What if the impulsive and aggressive displays by these athletes is not cultural but a result of head injury? What if the ‘dumb jock’ wasn’t always dumb, but was made so as a result of repeated blows the head? What if the negative behaviors commonly attributed to male jocks everywhere are legitimate symptoms of traumatic brain injury? This is very real possibility.

Traumatic Brain Injury in Athletes

Repeated blows to the head cause a condition called chronic traumatic encephalopathy or CTE. The early symptoms include all of the same behaviors commonly attributed to male athletes such as: irritability, impulsivity, aggression (explosivity), depression, poor attention and concentration, short-term memory difficulties and heightened suicidality.  In younger athletes, traumatic brain injury symptoms look a lot like those associated with  Attention Deficit Hyperactivity Disorder (ADHD).

As the disease progresses, aging athletes can experience gait disturbances, Parkinson’s-like tremors, dementia, severe cognitive deficits and impulse control issues. In many cases, affected athletes are even misdiagnosed with early Alzheimer’s. It appears that the all-too-common and often mild head injuries, normal in many athletic endeavors, may be more dangerous than most recognize.

New Research: From the Brains of Men

Researchers from Boston analyzed the brains from a cohort of 85 deceased, male former athletes (n=64) or ex-military (n=21) with histories of repeated traumatic brain injury and compared those to control group of 18 healthy brains with no history of traumatic brain injury. The findings were remarkable. Fully 80% of the athletes’ and military brains had evidence of CTE.

Brain damage with Traumatic Head Injury
Stages of brain damage with repeated traumatic head injury. McKee et al. 2012.

Visually, the brain tissue of those with CTE showed a progression from focal tau-protein tangles (tau is a protein associated with Alzheimer’s) to gradually more distributed tau-protein tangles with the more severe cases of CTE.

Should you be Concerned?

In a word, yes. With boys and girls participating in contact sports at earlier and earlier ages and with the increased training schedules and pressures to perform faced by many high school athletes, the risk for permanent brain damage is high. Recognize the early, mostly behavioral and often subtle signs of traumatic brain injury.

 

This article was published previously on Hormones Matter in December 2012. 

5 Things Not to Say to a Stroke Survivor

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Before I had a stroke at 28 from hormonal birth control (you can read my story here), I didn’t really know what a stroke was. And I certainly didn’t understand the implications or ramifications of what it meant to have an “insult to the brain.”

I knew I had physical and mental limitations, that I needed to learn how to walk again, to put on my socks, to bathe myself. But they also told my family that I may have an entirely different personality. Can you imagine? You wake up one day, have a brain injury, and your personality is completely different? And would you be able to recognize how your own personality had changed or would it be something people would whisper about when they thought you weren’t listening? My sister must have been particularly worried about my personality. I remember one morning she had to butter my biscuit for me after I had tried unsuccessfully several times. “I’ll butter your biscuit for you for the rest of your life,” she said. “I’m just so glad you’re still in there.” At least most of me was. That is to say, I still had my struggles with who I was and who I had been. But really, who doesn’t?

The interesting thing about surviving a stroke is learning what you can and cannot do. To others, even others that are informed about brain injuries, you may look so similar to your pre-stroke self that they take for granted you are the same. But you may not be.

So as a public service announcement for Stroke Awareness Month, here is a list of 5 things not to say to a person who has had a stroke (or any brain injury).

1. “Hold this.”

The disconnect between mind and body when you have a traumatic brain injury is a constant surprise. The first time they handed me the receiver to talk on the telephone, I held it backwards. One time I put a Cheeto in my ear instead of my mouth. When my mother asked me if I wanted to put on some lipstick, I took the tube from her, put it on my lips (or near them), then put the cap back on the raised stick of lipstick, crushing it. In the ICU, when they had me brush my teeth and rinse with a paper cup of water, the nurse instructed me to spit the dirty water back in the cup. I nodded. “Of course,” I thought. Then I promptly swallowed it. One of the most surprising things, and this was long after I’d been discharged from the hospital (and if I’m being completely honest, even now sometimes), is how things get lost in my left hand. I can literally be holding my keys in my left hand and be looking around the house for them.

But it’s not just the things in my left hand. Sometimes I will stand before a trash can with a pen in one hand and a tissue in the other and tell myself, “throw away the tissue, throw away the tissue, throw away the tissue.” Then I always have to bend down and pick the pen out of the trash.

2. “Lift your leg.”

During my rehabilitation, I was a bit of a challenge for my therapists. Most stroke survivors have damage to either the right or the left side of the body. But the damage from my stroke went down both sides of my brain and consequently affected my left arm and my right leg. One of the exercises the physical therapist asked me to do was to raise my left arm while all on all fours. I did. Then he asked me to raise my right leg. I did. “Raise your right leg,” he said again. So I raised it again. “Kerry, raise your right leg,” he said, like I might not have realized he was talking to me. “Right leg. Right leg,” my mom added. “I am raising my right leg,” I said, exasperated. What is wrong with them? I wondered. I looked behind me with complete certainty that I would see my leg raised. Of course I didn’t, but I did catch an expression on my mom’s face. It was the same expression she was wearing when we played Boggle in recreational therapy and I only found a few words. It was the same expression she wore when I smashed her tube of lipstick. It was an expression that seemed to say she wasn’t quite sure who I was.

3. “Write this down.”

A day or two after I got out of ICU, my mom asked me if I thought I could still write. You would think after the sock incident, I might have had my doubts. But I’m clearly a slow learner, because I said, “Sure, I can.” She handed me a notebook and a pen. I recently found that notebook, the picture is above. (My mom would continue to lovingly document these little milestones, just like she had when I was a baby.) When I wrote that, I thought I had done a pretty good job. And considering what my brain had been through, it was amazing I could even hold a pen. But when I look at it now, it breaks my heart a little bit. I’m so lucky that I write flawlessly now. Just kidding! My writing, while mostly legible and mostly on the lines of the paper, is still a mess. Until a few weeks ago, I didn’t even realize that messing up every third word, leaving letters out, adding letters where they don’t belong—that isn’t just how everyone writes. After a highly scientific study of asking a few of my friends, it seems that’s not normal. The first paper I wrote in graduate school, I typed the words male and female as “mail” and “femail.” Every. Single. Time. Even when I would remind myself, it still came out wrong. To this day, I have trouble with homonyms but I usually catch the mistake before I send the email or publish the story. But sometimes I don’t. I hope you’ll bare with me… haha.

4. Glare at them when they park in a handicapped spot.

In fairness, glaring at someone is not saying anything to them, but so much of communication is nonverbal that I had to include it. After my stroke, they gave me a temporary handicapped decal for my car. And while I may have looked relatively normal, I assure you I was not. I couldn’t walk long distances. I found any remotely crowded place to be extremely stressful. I had to sit down halfway through a trip to the grocery store. Day-to-day things that used to be easy were difficult and frustrating. But even more frustrating were the looks that people would give me when we parked in handicapped parking. One woman glared at me in such obvious disgust as we got into our car. She waited to comment until we had closed our doors so I didn’t hear what she said, but I’m pretty sure she heard me when I rolled down my window. As my husband sped quickly out of the parking lot, I hung my head out of the car and yelled, “I had a stroke!” at the top of my lungs. Not one of my finer moments, to be sure. The lesson that remains, and one even I frequently have to remind myself of, is that you really never know what a person is going through just by looking at them.

5. “My (insert friend or relative)’s experience was much worse than yours.”

A few months after I got out of the hospital, I was at dinner with friends when a woman I had just met (a friend of a friend) was surprised to learn that I had recently had a stroke. “My grandfather just had a stroke,” she said excitedly. “But his was way worse than yours. He’s still in the hospital.” Of course, what she meant was that I looked like I was fully recovered while he was still having visible problems. And of course, she probably didn’t mean to be dismissive. But it really bothered me. I had a massive stroke. I didn’t just have blood clots in my brain (an ischemic stroke, which accounts for 87% of all strokes). I also had bleeding in my brain (a hemorrhagic stroke—a much less common and far more deadly stroke). In my mind, I had actually survived two strokes. Yes, I was extremely lucky and I know my recovery was nothing short of miraculous. But that didn’t negate what happened to me nor what I was continuing to deal with. This woman knew nothing of my struggle to get to dinner that night, nor the struggle of the months before (and certainly not of the subsequent years), yet she made a value judgment on what had happened to me based on her grandfather’s experience. As human beings, it’s natural for us to draw comparisons and to find patterns. After all, common experiences and sharing stories are the major ways we connect to one another. And when you are interacting with someone who has had a traumatic brain injury, or any health crisis, it is completely fine to ask questions. But then just try to listen.

If you’ve ever had a health crisis, and many of us have, what have people unwittingly said to you? Or have you ever put your foot in your mouth when dealing with a friend or loved one’s health crisis? I know I have! Leave your answers in the comment section below.

Real Risk Study: Birth Control and Blood Clots

Lucine Health Sciences and Hormones Matter are conducting research to investigate the relationship between hormonal birth control and blood clots. If you or a loved one have suffered from a blood clot while using hormonal birth control, please consider participating. We are also looking for participants who have been using hormonal birth control for at least one year and have NOT had a blood clot, as well as women who have NEVER used hormonal birth control. For more information or to participate, click here.

A Day in the Life of Alexis Wolf: Six Years After Gardasil

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Alexis is now 20 years old. Six years have passed since her first injection of Gardasil. Life has changed drastically since then. After the Gardasil vaccine, Alexis developed encephalopathy, Traumatic Brain Injury (TBI) and a horrible seizure disorder that has yet to be controlled. Read the first part of Alexis’ Gardasil journey here.

Post Gardasil Brain Injury

Alexis’ brain injury post Gardasil is in the frontal lobe. This part of the brain controls so much of who we are. This has left Alexis with the mental capacity of about an 8 year old. She gets very confused easily and struggles with short term and long term memory so she requires constant supervision with frequent redirection on everyday tasks. Her skill level of preparing meals for herself and daily personal hygiene is almost nonexistent. She can no longer take showers due to the danger of having a seizure and falling. I have to help her take a bath and make sure she gets clean. I have to assist in washing her hair to make sure it gets clean. I also have to get her clothes ready for her. She can usually dress herself with little assistance.

Post Gardasil Bowel and Bladder Problems

Since receiving Gardasil, Alexis progressively lost bladder and bowel control.  She has to wear adult diapers.  Sometimes she will put her fingers inside her anus to try to help herself go #2. Although we have discussed this with all of her doctors and with her, telling her it is very dangerous for her and everyone one else, she cannot control herself. We make her wash her hands OFTEN. I wipe things down with Lysol wipes OFTEN.

Post Gardasil Pain

Alexis has often expressed frustration, depression and suicidal thoughts as to her present life and her future. She can be swift to anger and have great mood swings. She will slam doors, throw things, spit at us and call us a variety of cuss words. She is miserable most of the time. She complains about pain constantly. We have been turned away by three different pain specialist because they review her records and tell me she is “too complex” for them to treat. The only thing she has to help her with the pain is medical marijuana in the form of tinctures and vapors. When her head hurts really badly she will hit her forehead with the palm of her hand and say “brain get better, brain get better…” She also complains about all over body aches, sharp pains in her chest, joint and muscle pain. She will tell us that everything looks scary, strange and unusual even herself. The best description she was able to give us was that it looked like the walls were melting and people looked like cartoons. I had to take her out of high school for the above reasons. Her teachers were not very patient with her and they would push her buttons so one day she hit one of her teachers in the arm. The school called the police so I took her out of school.

Post Gardasil Seizures

Alexis’ speech patterns can often digress to repetitive statements over and over. This occurs without the knowledge that she is engaged in that behavior. Her motivation level is very low due to her brain injury. Getting her to do anything is quite the struggle. Almost every task is labored and takes lots of patience from the person helping her. Often at times she will flat out refuse to move and begs to take a nap. She naps off and on all day every day. We really do not know how long she sleeps at night but we think it is no longer than two hours at a time. The seizures happen all the time and they wake her up while she is sleeping. She is usually unable to fall back to sleep, so she wanders the house and searches for food. She has horrible impulse control and she is not able to tell if she is full or not. We have to keep the fridge and the pantry locked up at all times so she does not eat herself into a coma. If she eats a full meal and then has a seizure she will forget that she has just eaten and she begs for food saying that she is starving. We also lock up her medications because she will forget that she has taken them and try to take more even though I store them in those daily dose medicine boxes. She can have many, many seizures in a day. She takes anti-seizure meds and she also has a device implanted in her chest called a VNS therapy. It is supposed to reduce or stop her seizures but so far we have not really noticed a difference. She has had it for 3 years and soon she will be due for a battery replacement that will require another surgery. The battery should have lasted 5-10 years but the doctors have made so many adjustments on the therapy levels that the battery only has a few months left of power.

Alexis having a Seizure in 2010

Six Years and Counting

In the past six years we have had to deal with many people who do not understand the side-effects of the Gardasil vaccine. We have been accused of horrible things. We have had to endure being investigated by Child Protective Services, Adult Protective Services, police, detectives and more. Family, friends and neighbors have turned their heads and left us behind. Alexis’ father has not spoken to her in two years and all the help he had once offered is nonexistent. The government services that should support Alexis and her brain injury are bogged down so she is on a waiting list of over 40,000 people. I was told she MIGHT get services in 2019 when her name comes up next on the list. The way things have been going it is possible that all money and services may dry up and go away before her name even comes up.

Alexis’ inability to live independently will require lifelong care and assistance. I worry all the time about what will happen to her when I am no longer able to care for her. Every day new challenges arise so I can never put down my guard. I have been told by at least two doctors that I should look into some sort of institutional assisted living facility, but I cannot wrap my mind around that just yet. Life is quite different than it was six years ago, before Gardasil. Six years ago Alexis was a normal 14 year old. Starting to wear make-up and get interested in boys…working hard in school and enjoying honor roll. She had her whole life ahead of her and now she spends every day in a living hell filled with pain and misery, begging to be better, begging everyone to pray for her.

Six years ago, before Gardasil, life was very different.

Alexis Wolf before Gardasil
Alexis Wolf, age 14, before her first Gardasil injection.

 

Alexis Wolf after Gardasil
Alexis Wolf, age 20, six years after Gardasil.

 

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Menopause, Migraines and My Empty Nest

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While growing up three things I never thought about were migraines, menopause and having an ’empty nest.’ What I did think about were the clothes I wore to school, whether or not I had the “in” purse, how not to get my period in school and how my hair looked. When I had a migraine it was around my period and I was able to tend to it with over-the- counter medications. As I got older, my thoughts turned to my education and career goals. At some point I assumed I would get married, but only after I was set in my career. Nowhere in my ‘plan’ were children included – I just wasn’t going to have any. After high school I went to college to pursue a degree in music education. But as I’ve come to find out, life rarely goes according to any plans I’ve set.

In the middle of my sophomore in college as a music education major, I discovered I didn’t have the patience to teach music to a classroom full of squiggly little children. This confirmed my feelings that motherhood wasn’t for me. My new major in music business would be a great start in become a manager of an orchestra, or at least that was the plan. My college internship at ICM Artists (now Opus 3 Artists) in New York City was an amazing experience and my plan was set in action. But somewhere along the line I met Michael and my world turned upside down. We fell in love, graduated from college and got married. After my internship I came right home and got married – what was I thinking?

Anyways, as we settled into our lives and careers life was very good. Michael was a math teacher and I was in music administration. Suddenly after four years of marriage, my biological clock starting ticking and I wanted a baby. Soon after our beautiful daughter Sarah was born and motherhood became my new career path and passion – I was now a stay-at-home-mom. Five and a half years later, our wonderful son Samuel was came along and our nest was complete and together we raised our two gems. Motherhood and migraines seemed to be manageable during this time.

But once again, my life abruptly changed when I sustained a traumatic brain injury or TBI. You can read more about my history here. Somehow my family muddled through the chronic pain I battled and still do but no without the support of a husband. It was too much for him, so after nearly 25 years of marriage my role as a wife was over. Two things that remained constant in my life were migraines (which increased dramatically since I fell) and motherhood.

Motherhood is something I took (and still do) very seriously and went about in a “traditional” manner. My job was not to be best friends with my children, rather their mother who went about setting limits and boundaries with patience and love – most of the time. My children often heard “I’m not interested in what Bobby and the rest of your friends are doing, YOU aren’t allowed to do that.” Difficult decisions were made on a daily basis they didn’t like. For example, no PG-14 rated movies until they turned 14; no sleep over’s unless I’d already been to the house and knew the parents; shorter curfews compared to their friends, you get the picture – I was pretty strict. When my 18-year-old comes home at his assigned curfew I always get a good night kiss no matter what time it is. This way I can “see” and “smell” any signs if he has made any poor choices. So far, so good.

But the thing is Sam graduates from high school this June and is off to college in the fall. Even in chronic pain, motherhood has always been my primary function. I felt it’s important to raise children who would become respectful, independent, loyal, compassionate and loving adults, which they both are. When Sam leaves for college this fall, is my role of mother finished? I feel like I’ve been working on a ‘project’ for 23 years and its coming to an end. It feels like I’m about to make the final presentation for this project, and then, it’s over. Is this what an ’empty nest’ feels like? A glorious ‘project’ that is done? Within the last three years my role as a mother and a wife feel like they have been ripped from me. I’m thrilled that my children have made it through and turned out “OK” after surviving a crummy divorce and elated they are both starting new chapters in their lives. But this emptiness I am starting to feel is totally unexpected.

So here’s the thing – how do I fill my nest and figure out who am I now? Where to start -how does a disabled woman in chronic pain redefine themselves after being a stay-at-home-mom for 23 years? There are plenty of mothers who go back to school and find a new full time career or go back into the career they had before they became mother, but that’s not me. Battling chronic pain each day and taking it one day at a time may be the path to stay on for the moment. Because other than that, I really have no clue where to go from here.