Resources & Inspiration for Life with Brain Injury

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Survival Tips for the Holidays with a Brain Injury

by Linda W. Arms

With an injured brain, the holiday season can burden us with more fatigue, more stress and perhaps some sad emotions.  We may remember how our lives used to be before our brain injuries, but we have to move on and appreciate our lives today.   We can look back with fond memories, but we can also build new ones that don’t require us to overdo during the holidays.

We will be able to enjoy ourselves much more if we prepare ourselves for the holiday season.   Here are some tips that work for me since my brain injury:

  1. Pace yourself – don’t commit to more than you can successfully handle.  Don’t overdo the shopping, the cleaning, the cooking or other activities.   Give yourself a quiet day before going to that party or dinner.  Take a nap, or just lay down and rest.   Do everything in moderation.
  2. Say “No” – sometimes it’s better to turn down large family get-togethers because of all the challenges of interacting with people, the noise, and making your way around all the people.   And then, of course, we have to remember that when we overdo it one day we have to pay for it the next.
  3. Get organized in advance – Write things down to help you remember what you need to do.    Maybe add when you need to do them by.    Why burden your brain by trying to keep it all in your head?
  4. Prioritize – only do what is important.   There are probably things to do that you can put aside until after the holidays.
  5. Ask for help – with the shopping, the cooking, the cleaning, or whatever else it is.
  6. Keep things simple – simplify the decorations, the gift giving, the meals and everything else that is part of the holiday season.   Find ways to enjoy the holidays with quieter moments.   The added decorations and lights can add to our fatigue because they are visually stimulating which the brain has to process and sometimes not very well.    Many of us have visual processing problems so all this added visual stimulation wears on us.
  7. Eat properly throughout the day to nourish your brain so it can do a better job for you. Drink recommended amounts of water, our brains need it.
  8. Determine how to get where you have to go before you leave – I like doing this the day before so I can study the Google map and try to think about it for a while before I go out on the road.  I even do a “street view” in Google Maps so I can be familiar with the area I’m travelling to.  Better yet, have someone else drive.
  9. Determine how much time you need to get there – Give yourself some extra time since stressing causes an additional load on our brain which we want to avoid.  Write down what time you have to leave, what time you need to start getting ready.   I have trouble with time and remembering the numbers.   I write it down so I don’t have to re-think this 10 times before I go.
  10. Determine what you need to take with you and what you are going to wear – Doing this well ahead of time saves that last-minute pressure that makes it difficult to function if you have a brain injury.
  11. Determine, in advance, your way out of the social situation or other activity if things are not going well for you.   You may need to find a ride home.   You may need to leave early before the dinner is over.   You may need to cancel before you even leave the house.   It’s good to let others know that you may have a problem and that you just have to escape before you can’t function well enough to get yourself back home safely.
  12. If you’re going to a new place for dinner, study the menu on the Internet before you go.   I found it very hard to focus on a new menu and figure out what to eat when I just couldn’t keep up with the busy restaurant environment and people at the table talking to me.   It’s easier to decide in advance if possible.
  13. Try to get a table in a quiet, less busy part of the restaurant.   I often get a table away from the hub-bub and I sit facing the wall so I don’t have to see the movement in the restaurant.   I sometimes asked the waiter to turn down the music.

The idea is to save brain energy so you can have a good time.    Enjoy!

Thanksgiving_dinner

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Holiday Challenges With a Brain Injury

by Linda W. Arms, November 5, 2013

We are now in the middle of the holiday season which can challenge those of us with an injured brain.    It is a time when so much more is expected of us than most other times of the year.    We along with our loved ones, friends and caregivers should all remember that it’s best to simplify so we can enjoy things more.     It’s been nearly 9 years since my brain injury and I’m doing much better but I have to remind myself to keep things simple instead of doing  all the things I “should” do, or the things I did before my injury.

This season brings so many more demands on our brain.   We have to do a lot of extra things such as buying gifts, putting up decorations, doing more cooking and interacting with more people at social events.   We have to maneuver around very busy stores, and the entire holiday hubbub on the roads and parking lots.   The holidays can also be an emotional time because we might think back to our past selves when we could do so much more.   We might feel our loss even more and feel that familiar grief.

Brain injury survivors and caregivers should take extra care during this time for rest, finding quiet spaces and doing less of what is expected during the holidays.   Those of us with a brain injury probably are much more settled and can enjoy this time better if we don’t have ALL those decorations, especially flashing or moving lights all around us.   They are overwhelming for our poor brains to process and contribute to sensory overload.   Plus its a lot of work to put up so many decorations and take them back down.  I put up just a few decorations and I can feel a strange anxiety of having those extra things to look at as I process my surroundings.

You also need to learn to say no to some things.   I’ve turned down large family get-togethers in these past years because of all the challenges of interacting, a lot of noise and making your way through the groups of people.   And then, of course, we have to remember that when we over-do-it one day we have to pay for it the next.

Ask for help.   Instead of doing most of the cooking for a special meal, make it pot luck.   Everyone contributes a dish or two.   Instead of running to a lot of stores for gifts, buy online.   Reduce the amount of gift giving.   Many people are happy to opt out of gift exchanges or to cut back from earlier years.

Simplify the decorations, the gift giving, the meals and everything else that is part of the holiday season.   Find ways to enjoy the holidays with quieter moments.   Keep it simple and you’ll enjoy it more.     And remember More is Not Better

Glowing Christmas Tree in Snow

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12 Tips for Getting through the Holidays with an Injured Brain

by Linda W. Arms

As the holiday season gears up, we need to remember to take care of our injured brains so we can enjoy the season more.   We need to prepare ourselves to make it through the holidays without too much more fatigue or stress. We need to be ready for that party, dinner, driving to an unfamiliar place, or something else we may not often do.   Here are some tips that work for me since my brain injury:

  1. Pace yourself – don’t commit to more than you can successfully handle.  Don’t overdo the shopping, the cleaning, and the cooking or other activities.   Give yourself a quiet day before going to that party or dinner.  Take a nap or just lay down and rest.   Do everything in moderation.
  2. Get organized in advance.    Write things down to help you remember what you need to do.    Why burden your brain by trying to keep it all in your head?
  3. Prioritize – only do what is important.   There are probably things to do that you can put aside until after the holidays.
  4. Ask for help – with the shopping, the cooking, the cleaning or whatever else it is.
  5. Keep things simple – simplify the decorations, the gift giving, the meals and everything else that is part of the holiday season.   Find ways to enjoy the holidays with quieter moments.
  6. Eat properly throughout the day to nourish your brain so it can do a better job for you. Drink recommended amounts of water.
  7. Determine how to get where you have to go before you leave.   I like doing this the day before so I can study the Google map and try to think about it for a while before I get on the street.  I even do a “street view” in Google Maps so I can be familiar with the area I’m travelling to.   My TBI resulted in me losing the map of where I’ve lived for the last 30 years and not having a good sense of direction anymore.
  8. Determine how much time you need to get there.   Give yourself some extra time since stressing causes an additional load on our brain which we want to avoid.   Write down what time you have to leave, what time you need to start getting ready.   I have trouble with time and remembering the numbers.   I write it down so I don’t have to re-think this 10 times before I go.
  9. Determine what you need to take with you and what you are going to wear.   Doing this well ahead of time saves that last-minute pressure that makes it difficult to function if you have a brain injury.
  10. Determine, in advance, your way out of the social situation or other activity if things are not going well for you.   You may need to find a ride home.   You may need to leave early before the dinner is over.   You may need to cancel before you even leave the house.   It’s good to let others know that you may have a problem and that you just have to escape before you can’t function well enough to get yourself back home safely.
  11. If you’re going to a new place for dinner, study the menu on the Internet before you go.   I found it very hard to focus on a new menu and figure out what to eat when I just couldn’t keep up with the busy restaurant environment and people at the table talking to me.   It’s easier to decide in advance if possible.
  12. Try to get a table in a quiet, less busy part of the restaurant.   I often get a table away from the hub-bub and I sit facing the wall so I don’t have to see the movement in the restaurant.   I sometimes asked the waiter to turn down the music.

The idea is to save brain energy so you can have a good time.    Enjoy!

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We Are Imperfect Customers

by Linda W. Arms

This is a different kind of post but wanted to share with you.   I’m sharing this with many customer service providers and groups via LinkedIn and other sites.   Here it is:

 

Our Imperfect Customers

How do you view your customers?    Are they like you?     Are they at the top of their game as you might be?    Probably not.     We have many imperfect customers who need special attention or, at least, an awareness of their challenges.   I used to always see my customers as having similar cognitive abilities as I and my co-workers.     After suffering a brain injury 8 years ago, my views have changed.    There are millions of people in the United States who have cognitive impairments so you might take a second look at who is your customer.

Those of us with cognitive impairments travel, shop, visit web sites, visit business offices, talk on the phone, drive …. you name it.   For many of us, we do it with great difficulty.   When we’re done, we are often exhausted.    For example, just doing a simple thing like grocery shopping was a tremendously difficult task.    There were days I would decide not to go, or I’d walk into the store and right back out again because it was too overwhelming;  other times I’d fill my cart with an item or two and then just leave it and go home; or after shopping, I’d go home and nap for 2 hours.

I spent over 25 years in a customer service role providing a variety of financial and information technology services to a wide range of customers.     As a manager of a help desk and other I.T. services, I was always looking at “who is my customer” and “what do they need”, trying always to improve their experience with our services.      I looked at our Help Desk customers in terms of their role in the organization and their different needs (engineers, administrators, highway maintenance workers, etc.).    I saw other sets of customers based on how they accessed the organization’s network (hard-wired, dial-in, VPN, etc. ) to work with various applications.     There were other types of customers also but I never considered the cognitive health of those we served.

There are many people like me whose cognitive abilities have been affected by trauma, disease or other causes.     I look fine and have since my accident but in the early years of my recovery my cognitive abilities were greatly affected.      Impaired cognitive abilities cause problems with awareness, perception, reasoning, ability to focus, memory, judgment and many other things.    Since every injured or diseased brain is different, there are many symptoms.    Our brains control everything in our bodies including the ability to walk, see, talk, comprehend written and/or spoken communications, perform math calculations, make decisions, balance, move our hands, hear, and the list goes on and on.    Most of us have problems with the speed at which our brains process anything.    The world moves and speaks way too fast for many of us.   Many people with an injured or diseased brain have problems with our visual systems.   Some of us have problems with sounds where we become overwhelmed by too many sounds, too much volume, and sensitivity to certain types of sounds.

How Many of Us Are Out Here in the United States?

  • 1,700,000 people suffer a traumatic brain injury each year
  • 800,000 people suffer a stroke each year
  • 70,000 people are diagnosed with a brain tumor each year
  • 30,000 people suffer a brain aneurysm each year
  • 5,000,000 people live with Alzheimer’s
  • There are many others with diseases that can affect cognition including Parkinson’s disease and Multiple Sclerosis
  • There are many who live with an acquired brain injury due to anoxia, bad drug interactions and other things that damage the brain
  • One in 5 veterans returning from the recent wars has a brain injury

The Challenge of Phone Calls

Interacting on phones can be very difficult for those with cognitive problems.    There are many steps that our brain needs to process when we make a call and we can easily become overwhelmed.   First we have to find the phone number and dial it.   Next, we have to comprehend the automated message or what the person on the other end is saying.   Our brain has to process the accents or dialects of the person.   We have to try to adjust to the speed of their speech.   Our brain has to work harder when the person is not speaking clearly or there are distractions we hear in the background.   We may not be able to keep up with the speed at which the information is coming to us.   Unfamiliar terminology throws us off.   Complex sentence structures overwhelm us.   Sarcasm and innuendo may not be understood.

The Overwhelm of Stores and Offices

Walking into a store or office can be overwhelming with a cognitive impairment.    We may be having problems with balance so as we walk in, see and process our relatively unfamiliar surroundings, we are immediately thrown off.   Our brain is working overtime to address just the balance issue.

Then, there are so many things in the establishment that we see and our brain has to process.    Fluorescent lighting is more difficult for our brains to process adding more to the overwhelm we are feeling.    Next we have to find what we are looking for, we have to scan objects, make decisions.

We have to interact with the office worker or clerk who may be speaking way too fast for us, or mumbling, or speaking with an accent.     Constant interruptions throw us off.   Everything becomes more difficult.   When someone asks us a question, it may take us a few moments to respond.   Many times, because we have not yet responded, the person asking the question will not pause for very long before asking again and trying a different approach.   Not good – we need some quiet moments to gather our thoughts and get them out our mouth.   Constant talking interferes with our ability to think.

The Get-Me-Out-of-Here Web Sites

Busy, busy web sites are everywhere.    People with injured and diseased brains have loads of issues with these web sites.    Remember many of us having problems processing visual input.   Our brains have to process the words we see and comprehend their meanings.   Our brains have to process the moving components on the page.    We have to process the choices we need to make from the menus.    We have to process every bit of it just like a computer processes every step of a routine.

Flashy sites with many graphics and moving components are everywhere.    It seems that the flashier, the better, but not for many for us.   We have problems with many types, sizes and colors of fonts covering the pages.   There are actually fonts that are easier for our brains to process but it is usually not a consideration when a web site is built.    Sites with dark or brightly colored backgrounds can be very difficult to look at and visually process.

My brain injury caused problems with visual processing.   I could not look at some sites without getting dizzy, almost nauseous.   I could not look for more than a few moments.   When I did stick with it, trying to find or understand the content was painful.   I could not think because of the visual effects of the web page.    There was one site I did visit fairly often but it had a moving graphic which I covered by taping paper to my screen.

As you can see, I am now a different kind of customer.    I look fine.   I’m much better than a few years ago but I still have problems, like with that young man yesterday who spoke too, too fast and actually made me feel dizzy and not see straight.   I had to ask him several times to repeat himself.    My brain just does not take in the information that quickly.

I now see that there is a whole different set of customers that I never considered that deserve some acknowledgement.   I am one of them.   We use your services.   We buy your products.  We visit your web sites.    We use your help desks.   We pay you money.    Perhaps you can learn more about those of us with cognitive impairments so you have more awareness of our needs.    There are so many of us, the imperfect customer.

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Preparing for the Holidays

by Linda W. Arms

As the holiday season gears up, we need to remember to take care of our injured brains so we can enjoy the season more.   We need to prepare ourselves to make it through the holidays without too much more fatigue or stress. We need to be ready for that party, dinner, driving to an unfamiliar place, or something else we may not often do.   Here are some tips that work for me since my brain injury:

  1. Pace yourself – don’t commit to more than you can successfully handle.  Don’t overdo the shopping, the cleaning, and the cooking or other activities.   Give yourself a quiet day before going to that party or dinner.  Take a nap or just lay down and rest.   Do everything in moderation.
  2. Get organized in advance.    Write things down to help you remember what you need to do.    Why burden your brain by trying to keep it all in your head?
  3. Prioritize – only do what is important.   There are probably things to do that you can put aside until after the holidays.
  4. Ask for help – with the shopping, the cooking, the cleaning or whatever else it is.
  5. Keep things simple – simplify the decorations, the gift giving, the meals and everything else that is part of the holiday season.   Find ways to enjoy the holidays with quieter moments.
  6. Eat properly throughout the day to nourish your brain so it can do a better job for you. Drink recommended amounts of water.
  7. Determine how to get where you have to go before you leave.   I like doing this the day before so I can study the Google map and try to think about it for a while before I get on the street.  I even do a “street view” in Google Maps so I can be familiar with the area I’m travelling to.   My TBI resulted in me losing the map of where I’ve lived for the last 30 years and not having a good sense of direction anymore.
  8. Determine how much time you need to get there.   Give yourself some extra time since stressing causes an additional load on our brain which we want to avoid.   Write down what time you have to leave, what time you need to start getting ready.   I have trouble with time and remembering the numbers.   I write it down so I don’t have to re-think this 10 times before I go.
  9. Determine what you need to take with you and what you are going to wear.   Doing this well ahead of time saves that last-minute pressure that makes it difficult to function if you have a brain injury.
  10. Determine, in advance, your way out of the social situation or other activity if things are not going well for you.   You may need to find a ride home.   You may need to leave early before the dinner is over.   You may need to cancel before you even leave the house.   It’s good to let others know that you may have a problem and that you just have to escape before you can’t function well enough to get yourself back home safely.
  11. If you’re going to a new place for dinner, study the menu on the Internet before you go.   I found it very hard to focus on a new menu and figure out what to eat when I just couldn’t keep up with the busy restaurant environment and people at the table talking to me.   It’s easier to decide in advance if possible.
  12. Try to get a table in a quiet, less busy part of the restaurant.   I often get a table away from the hub-bub and I sit facing the wall so I don’t have to see the movement in the restaurant.   I sometimes asked the waiter to turn down the music.

The idea is to save brain energy so you can have a good time.    Enjoy!

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Abandoned????

by Linda W. Arms, DATED 11/15/2013

Were you very dependent on others after your brain injury?     Did you need assistance, support and care from others just to get through each day?    For some of us, it was an extreme dependency because we were flat on our backs.   For others, like me, we moved about but everything was difficult.    We needed someone to cook for us, to clean, to drive us to appointments, to keep us stimulated when we rather just hide in a hole.    We needed someone to help us make decisions, to resolve problems, to take care of personal business, to read something and interpret the meaning for us….so much dependency on others to live our lives.     Life on our own was almost unthinkable.

As we improve, we begin taking on more of life’s tasks.   Sometimes we don’t do them so well and need to be rescued.    Often our caregivers watched over us as we tried to do things and stepped in to help.     Sometimes we just couldn’t continue with the task because it turned out to be too taxing.    How many of you started a meal, or another task, and just had to stop in the middle of it because it became too overwhelming.    Who helped us out when we failed?    Our caregivers.

Our caregivers are loved ones, friends, volunteers, professional service providers and others.    They are desperately needed during our many difficult days with our injured brain.   As we get better we depend on them less.    They begin withdrawing from their role.   They go back to work.   Back to their own lives.   Move on to others who need their help.    It is all to be expected but still in some way, at some point, we may feel abandoned.

After my brain injury, my husband and daughter stepped in and took over my life for me.   Things were taken care of around me.   They told me when to eat, they cooked, and they did the grocery shopping.    They handled conversations with people when it was too overwhelming for me.   They did the thinking for me.    I was always so, so tired.   I slept 14 or more hours every day.

As time went on, months, even years, I slowly started doing more.    They went back to the lives they were living – to work, to school, to socialize with other people.    At some point in my recovery, probably around year 3 or 4, I started thinking, “hmmm…. well what about me?    Here they are being very normal people and they have a life outside the home.    Mine was gone.  The life, as I knew it before my injury, was in shambles.    Most of the time I didn’t care because I didn’t have the energy for much, and most activities outside the home were overwhelming.     But still, there were times I felt left out.    As time went on and I continue to improve, I think even more “what about me?”

Like many of you, after a brain injury, we have to start rebuilding our lives.    That is where I am at these days.    I’ve been working on it actively now for about a year.    I’m sure there are many of you in the same position as I am.    Perhaps we all have felt a bit like we’ve been abandoned by the people who took care of us.    But it is normal and to be expected that they move on with their lives and it is what we, with the injured brain, must also do.

 

pexels-photo-333989 (1)

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More Is Not Better

by Linda W. Arms, dated Sept. 15, 2013

After a brain injury, more of many things, is not better.   It is not better to see more things around you;   it is not better to be given more choices; it is not better to have more things to do; and it is not better if someone tries to explain something to you in multiple ways so you can get what it is they are trying to tell you.    After my brain injury I definitely want less of most things.   I can do so much these days but I have definitely lost my edge.    Some of you have lost even more, so I expect you don’t enjoy more of everything either.

For most aspects of our lives, it is better to simplify and remove the multiples of things we don’t need.   This could mean simplifying things around the house by removing the clutter.   Remove things that you rarely use from your closets, cabinets, shelves and drawers.   Having to look at so many things requires your brain to work harder.     Make it easier on yourself by relocating things you rarely use.

Having too many choices is overwhelming.   If somebody told me you can do A, or B, or C, or maybe D; it just made my head spin.    I couldn’t and didn’t want to think about each possibility and make a decision as to which option I preferred.     It felt like torture.

Having many commitments of your time and energy is also too much for many of us with a brain injury.    Just knowing that I have many things on my “to-do” list is often overwhelming for me and causes the brain fog to set in.   I can only focus on a few things at a time.   I have a big to-do list but I pick just a few items to put on a daily/weekly list.     I don’t look at the big list on a daily basis.   It’s more like once every week or two.

Words – too many words – can be so fatiguing.    Sometimes people feel they need to keep talking to us to explain things over and over and in different ways so we understand.    For me, I just want simplicity and a slower speed when people speak to me.     I sometimes feel I’m drowning in the words that are coming at me, causing fatigue and frustration.   I have had various people speaking to me who were much too talkative and they are close to me so they know my problem.    They speak way too fast, using too many words making it so uncomfortable for me that I now refer to it as “brain rape”.

Of course, there are things I want more of, like chocolate, but overall I want to enjoy life at a slower pace, with less noise; less clutter;  less electrically produced light;  less fast, complex talking; less crowds; less movement around me; less choices and so on.    I expect that as time goes on, I’ll be able to handle more of things.    During the last 7 ½ years, I’ve slowly increased my abilities to handle more.   It just keeps getting better.

Source:  http://notoriousbig-river.tumblr.com/post/43170184610

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Caution! Caution! Brain Injured Drivers!

by Linda W. Arms

I just drove behind a car with the sign “Caution! Caution! Student Driver”.     It reminded me of when I started driving after my brain injury and how slowly and cautiously I would drive, just like the student driver I was following.    I expect many of you have been in this same circumstance after your brain injury.

There have been a lot of us out there on the road.    Does that make you comfortable?    Driving is a challenging activity for many people after a brain injury.  In fact, many of us were not to drive until some time had passed and we were functioning better.   What about the people who haven’t been getting treatment after their “mild” brain injury but are dealing with cognitive challenges while not really aware of their impairments or are just “dealing” with it?

No one had to tell me not to drive.  It was very obvious to me that I had a severe problem.   My reaction time was slow.   I had a number of visual disturbances.   I wasn’t coordinated.    It was hard for me to focus.   I couldn’t remember my way around.   Everything was a distraction.   I also had problems with PTSD so any loud sound, sudden movement, or something unexpected left me shaking, in tears and made me want to shrink into a dark hole.    Obviously, I was better off not being behind the wheel. Usually, if I had to drive for more than 20 minutes, my eyes would water constantly, something that happened when I was fatigued.

When I started driving again I sometimes had a weird sensation that I was nothing but a giant eyeball looking intensely at things before me.   I know my hands were gripping the wheel and my jaw clenched because my teeth would hurt afterwards.    All my energy and focus was on the act of driving.    I’m glad those days are behind me.   I drove as little as possible back then because it took too much of my limited energy.

After a brain injury, many activities that were part of our everyday life are very difficult or impossible.   Driving is one of those things.   It is extremely important to know when you are not capable of driving.    Ask your doctors, your family members, and others who know you well if they aren’t the first to tell you not to drive.   Be sure to ask yourself.   I knew many times in some of the earlier years that I should not be on the road.   There were just bad days were the brain injury symptoms were especially bad.

Since my brain injury I’ve often thought about other people who get hit on the head or have some other event that causes a brain injury.    In the first couple hours or so, you might not have too many symptoms other than some pain or other minor problem.   What happens when these recently injured people get behind the wheel for a long drive, or the pilot who goes into the cockpit and starts his flight; or the engineer getting into the train to travel cross county?   What happens when the effects of the injury set in?    Makes me want to ask the captain of the plane if he was hit on the head recently!    We just don’t make a big enough deal of it when our head is injured!

So be safe.   Think about how you are feeling before you get behind the wheel.   Are you rested?  Can you focus?   Does your vision feel off?   You may just be having an off day and you can drive tomorrow.   You can also ask for a ride.

Here are some links to useful resources about Driving with a Brain Injury:

Driving after Brain Injury:  Issues, Obstacles, and Possibilities from Brain Injury Association of America

Driving After Traumatic Brain Injury from BrainLine.org

Driving After Brain Injury from Minnesota Brain Injury Alliance

 

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The Brain Fairy is Always Lurking

by Linda W. Arms

After a brain injury, every day brings constant reminders that our brain is not working well.    For many of us, everything becomes a challenge.    Every movement we make, speaking, seeing, reading, counting, driving, cooking, cleaning, walking, hearing, thinking and so much more becomes difficult.    Nothing  feels normal.   With these challenges, we become even more fatigued and less able to do the things we are trying to do.   It becomes a vicious cycle that we cannot move out of.    Slowly as we get better, we start experiencing a “new normal”.

I think our “new normal” is a combination of us forgetting how it used to be, and that we have actually gotten better.     We also adapt by changing things around us and how we do things.   We stop doing certain things because it just isn’t possible or isn’t that important for us to spend the energy on.    We become much more functional and after a while we don’t think about our brain injury every single day.     Sometimes it takes years to get to this point.

Many of us don’t want our brain injury to define us so it is important not to constantly think of ourselves as “damaged” or that we can’t do something.    Sometimes we have to redefine who we are and what our life is to be.   Maybe we can’t do that job we had before.    Maybe we can’t climb mountains.   But there are other new and different things we can do.

Living with our “new normal” is fine and works most of the time.    Sometimes, however, the brain fairy comes back for a visit.   The brain fairy that causes all that trouble but also heals things in our heads is always lurking in the background.    Sometimes that visit brings back many symptoms we thought we’ve overcome.      A frightening experience like two large dogs barking, running and jumping at you causes you to have that sense of visual discombobulation or you feel unbalanced; your mind goes blank and the fog returns or something else just isn’t feeling normal again.

Sometimes, the brain fairy returns for a longer visit such as when you are faced with big life disturbances such as family problems, money problems, illness or other things that weigh heavily on you.    The stress, the emotions, and the mental work required to deal with these things is more than your injured brain can deal with.   Symptoms return, fatigue sets in, everything becomes much more difficult.   It is a time to step back and take care of yourself.    It is time to ask for help.    Remember the early months or years after your brain injury when you did nothing much other than try to heal.   You rested more, people helped you more, you did less, you put less things on your “to do” list, you didn’t do some things you used to do.

For whatever reason the brain fairy returns to you, remember it will pass.   Sometimes it is a short visit.   Sometimes you don’t know when it will end.   But remember that eventually it will get better again.   Pace yourself.    Be patient and good to yourself in the meantime.

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Brain Injury and the Vision System

by Linda W. Arms

Brain injuries often cause many problems with our vision system.   I’m not talking about a problem with the eye itself but about the work our brain does to allow us to see and interpret what we see.   Problems with our vision system cause or worsen many of the symptoms associated with brain injury such as fatigue, cognitive problems, balance problems, and coordination.    In all the testing and rehab efforts, our vision system is often overlooked and as a result, we continue to struggle to improve.   In my case, the problems with my vision system started being addressed after about 6 months but the final rehab effort did not occur until my 4th year into rehab.    I had a number of problems with my vision and I suspect they had some of the biggest impacts on the difficulties I had in functioning.

Damage to our visual systems cause problems such as:

  • Difficulty with eye movements
  • Double vision
  • Sensitivity to light
  • Reduction of visual field
  • Problems when shifting gaze from one thing to another
  • Difficulty focusing
  • Problems reading and comprehending what is read
  • Visual mid-line shift
  • Sensitivity to visually busy environments
  • Problems with walking and balance

If you are having problems like this, your brain must work extra hard to get you through your tasks which then causes even more fatigue.   Frequently a full comprehensive vision exam is not performed on people after a TBI and these problems are not identified.   I know I had to keep pushing to get my “eyes fixed”.   I went to 3 different specialists who each worked with different parts of my vision problems.    Today I only have the “discombobulated” sensation occasionally thanks to the various therapies.    I still cannot look through binoculars without my head wanting to shake.    I’m not perfect but a heck of a lot better than I was.

Testing for these vision problems is not routine after a TBI.    It is important to find someone who specializes in diagnosing and treating vision problems that result from a brain injury.    The military recently added these specialized tests in their polytrauma centers for TBI, however, testing is not the usual protocol for most TBI patients who do not end up in one of these types of centers.

The Center for Neuro Skills provides a good overview of visual problems associated with TBI:

http://www.neuroskills.com/brain-injury/post-trauma-vision-syndrome-1.php

http://www.neuroskills.com/brain-injury/post-trauma-vision-syndrome-2.php

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