Mind Your Head Co-op

caregiving

It was only a few years ago, around 2010 or so, after living with brain injury for eight years, that I began to understand more fully the extent 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.

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Best Therapy: Enter Life as Fully As Possible

Entering life as fully as possible is the best therapy possible for healing our brain. This website offers tips and approaches quite different from what you may have heard from your doctors. This is because the medical world focuses on acute care, demanding rapid results, and it does not understand long term healing and living with a chronic brain injury.

If you wish to love life and simultaneously maximize the healing of your brain this approach may help you as much as it has me.

God's Engineering

A powerful way to maximize healing of chronic healith challenges like TBI is to remove any and all clutter preventing our bodies from functioning at their best. Go created us wonderfully, and this includes amazing engineering and functionality – but what we eat, wear, how we move, and how we sit and sleep deeply impacts our body and brain functionality.

These articles may be helpful...

What we eat can heal our brain (or harm it).

Exercise helps heal the brain

Prayer helps smooth the way

Floor Living Aids Brain Function and Healing

Understanding Brain Injury

These articles will help caregivers, family, and friends better understand brain injury and what your loved one is going through (if you have the brain injury and wish family and friends understood you better, send them the links!).

Family and Friends’ Guide to Brain Injury

Spend a Day on Planet TBI

Brain Budgeting

TBI Anger and Over Stimulation of the Senses

Connect with Others

Sharing the journey with others who understand is critical. If you are on Facebook, search for TBI groups. There are some excellent ones (and some less than, but you'll weed them out quickly).

If you prefer email (I find it far less “noisy” and brain draining), I'd love for you to join one of the email support groups I moderate. These links will bring you there:

Brain Injury Alliance of Colorado (BIAC) Email Support Group: for both caregivers and survivors.

BIAC Caregiver Support Group: for caregivers only

Grieve Your Loss

We have lost a lot. Grieving our loss is a critical way of freeing us to move forward, whatever that looks like for us now.

As Fast As I Can, As Slow As I Must!

To enter life as fully as possible we need to learn balance. Push too hard and we need a lot of recovery time, go too slow and we languish, miss out on life and don't make new connections because we aren't pushing our boundaries.

Focus on What You Love and Can Do

In the accute phase of healing, doctors focus on what is hard for us to do. This often means a lot of recovery time. As we enter the chronic phase (to varying degrees, likely for the rest of our lives), we need to shift to focusing on what we love to do and on what we can do.

What are you passionate about? What do you love to do? Write? Draw? Run? Play? Sing? Dance? Whatever it is, what part of it can you do, right now, with the capacity you have? You never know what you'll discover and/or heal tomorrow because of what you do today.

The idea is simple. When we love something, we want to do it and find ways to do it. When we do things in a way we can, we discover new avenues to do more in ways we couldn't have if we frustratingly focused on what our incapacities are.

I've found I do more, spend less brain energy, recover faster, and celebrate the joy of life more by focusing on what I love and am passionate about.

Rather than bashing into a brick wall over and over trying to do what you can't (for now), do what you love instead and eventually you'll discover the wall crumbled.

Sanctuary

Create a sanctuary – a room where you can focus on what you love without distraction. This may mean soundproofing, simplifying clutter, changing out fluorescent lights to incandescent full spectrum ones, and more.

Set up your indoor activities so you can do them in your sanctuary.

When the world overwhelms you with barrages of sight, sound, smells, tastes, and touch, escape to your sanctuary to recover.

When your TBI anger flares, go to your sanctuary to avoid saying things you'll regret later, and start recovering. This post on TBI anger, and this one on adrenaline halflife may be helpful.

I have days where I can't get out of my “hobbit hole” at all. Other days, I'm in and out, spending five minutes with my wife and kids, and an hour or two recovering. Because my hobbit hole is so stimulation free, even while recovering I can create (write, draw, etc). As I write this, I'm actually a week in to recovering from an adrenaline crash.

Portable Sanctuary

When I do need to go out into the world, I don my armor. Ear plugs and noise canceling headphones are my main armor. Others find sunglasses (even glacier glasses, which block the sides) helpful.

This Crazy Approach Works!

Focusing on entering life as fully as possible while going “as fast as I can, as slow as I must” helps our brain heal. Through discovering and living this approach, I have been amazed and blessed by how effective it is. Despite my many challenges (I test 3rd percentile in short term memory, easy derailing of thought and focus), and constant neurological vertigo, I spend wonderful time with my wife and daughters, write, pray, engage in theology, and I even have learned how to (by going barefoot) run and bike mountain trails and back roads. True, I can't attend or serve at Mass or join my family when they go elsewhere (the overstimulation of the laundry scents, flashing, barrage of noise, and other over stimulation mean I have to shut down and escape after thirty seconds, and then need a week or so to recover), but the quality of life we experience as a family is dramatically higher because of this approach. I pray you find it does the same for you!

May God startle you with joy!

#caregiving #howto #advocacy #Godsengineering

Raw, Primal Protective Reflex

TBI anger is unlike any other kind of anger. It taps into our primal instinct to protect ourselves, like any wounded, cornered animal, with a burst of adrenaline. This is the source of the raw, primal strength, energy, focus, and coordination. Once it hits, it can not be stopped, only redirected in a safe direction.

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Brain injury is weird. It is weird from the inside, and, from the outside, it looks weird and sometimes people mistake weird for “fake” or exagerated or psychological when it’s actually just plain head-scrach-worthy. While every brain injury is different and effects each person differently, there is a commonality (and folks with other brain challenges like stroke, brain cancer, disease, etc, experience much the same thing, though for different reasons): we all have to learn to stay within our daily brain budget. You may have received this link from someone, asking you to understand their brain injury. You may have stumbled on it yourself, or be the person with brain injury trying to understnad what is happening and why the “world just seems so hard.” If you want to understand the weirdness of brain injury in yourself or someone you love or care about, start by understanding the daily brain budget.

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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.

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Brain injury raises a lot of questions. Some people aren’t comfortable asking questions. Other people are very comfortable knowing what they think they know have don’t see a need to ask questions (St. Michael defend us!).

There are many lists and guides out there the describe the symptoms of brain injury. There are not many that explore the weirdness of brain injury and what that does to family and friends or even bosses and co-workers. Educate yourself about the facts of brain injury, lest you be the equivalent of the person in 1853 not believing a blind man can use a stick to “see” and ignorantly proclaiming “They don’t need a stick, clearly they can see, even in the dark!”

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You and your caregiver are the expert on your brain injury

As of now, 2019, I am seventeen years into life aware I have brain injury. My eighth concussion in 2002 left with with cognitive deficits (memory, focus, attention, variable brain fatigue, sensory overstimulation, and more) and vertigo. My first concussion was 33 years ago. When I was ignorant I had brain injury, between the ages of 12 and 31, life had waves of times when it “just seemed harder” — especially in the weeks, months, and years after each concussion along the way. I unwittingly compensated — learned how to get around the deficits I didn’t know I had.

As with all of us and our caregivers, I am the expert on my brain injury and the doctors are my consultants. The doctors ran out of ideas years ago. I haven’t. And my ideas are working and helping, and they may help you also. They are not specific answers, but rather ideas that you and your caregiver together can examine and apply to your specific situation and symptoms and needs and learn together how to run forward more fully.

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