Resources & Inspiration for Life with Brain Injury

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A Brain Injury Often Damages Our Vision System

by Linda W. Arms

Brain injuries often cause 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.    According to the Neuro-Optometric Rehabilitation Society, around 50% of brain injuries result in problems with our vision system.     If you have had a brain injury, you have a good chance of having visual-related problems that in turn result in fatigue; and problems with cognition, balance, and coordination.    I’ve had several issues with my vision system with improvement being a work in progress still today after 13 years.    I can tell you these have had a major impact on my abilities to do things that I could easily to do before my injury, but I’m happy to say things are so much better today and I don’t notice too many problems on a daily basis like I used to.

You will most certainly have a variety of problems if your vision system is not functioning properly since we use nearly half of our brain for vision-related activities.    After a brain injury, our vision system is sometimes overlooked and as a result, we struggle to improve.   In my case, the problems with my vision system started being addressed after about 6 months and I was in some type of vision rehab therapy, of and on, for nearly 12 years.

Damage to our vision system 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
  • Problems with motor skills
  • Dizziness

If you are having problems like these, your brain must work extra hard to get you through your tasks which then causes even more fatigue.    A full comprehensive vision exam is frequently not performed on people after a brain injury and these problems are not identified.   I know I had to be persistent to get my “eyes fixed”.   I went to 3 different specialists who each worked with different parts of my vision problems.

I believe it is very important to visit an optometrist or ophthalmologist who specializes in neurological vision care.    After my TBI, I visited two optometrists that did not have this specialty since I thought things were under control although I still had some problems.    I didn’t return to either of them because I felt they did not understand the neurological issues.    In fact, one doctor became very impatient with me when I told him a number of times I could not do some of the visual tests he was asking me to do – it just didn’t work.    After that visit, I’ve made it a point to only see a neuro-optometrist for any type of vision care.    You can find a specialist in your area by visiting the following page and scroll down to a box where you can locate a provider:

Neuro-Optometric Rehabilitation Association – Health Care Locator

The following chart, intended for children’s development, shows the components of the visual system and helps me see how they interrelate.     Source:   http://lynnhellerstein.com/the-developmental-vision-model/

Click on image to view an enlarged image:

Developmental-model-color (1)

 

The Center for Neuro Skills also provides a good overview of visual problems associated with brain injury:

https://www.neuroskills.com/brain-injury/vision-and-brain-injury/

brain-605603_1920

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A Brain Injury Can Damage Our Vision System

by Linda W. Arms

Brain injuries often cause 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.    According to the Neuro-Optometric Rehabilitation Society, around 50% of brain injuries result in problems with our vision system.     If you have had a brain injury, you have a good chance of having visual-related problems that in turn result in fatigue; and problems with cognition, balance, and coordination.    I have several issues with my visual system that I am still trying to resolve after 8 years and I can tell you these have had a major impact on my abilities to do things I was easily able to do before my injury.

You will most certainly have a variety of problems if your vision system is not functioning properly since we use nearly half of our brain for vision-related activities.    After a brain injury, our vision system is sometimes overlooked and as a result, we struggle to improve.   In my case, the problems with my vision system started being addressed after about 6 months and I was in some type of vision rehab therapy for nearly 4 years.    In the last several months, I started noticing problems again with vision and having that discombobulated sensation that I thought was gone.    I’ve had to start vision therapy again to help correct the problems that seem to have resurfaced although I suspect some of the problems never completely disappeared.

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
  • Problems with motor skills
  • Dizziness

If you are having problems like these, your brain must work extra hard to get you through your tasks which then causes even more fatigue.    A full comprehensive vision exam is frequently not performed on people after a brain injury and these problems are not identified.   I know I had to be persistent to get my “eyes fixed”.   I went to 3 different specialists who each worked with different parts of my vision problems.

I believe it is very important to visit an optometrist or ophthalmologist who specializes in neurological vision care.    In recent years, I visited two optometrists that did not have this specialty since I thought things were under control although I still had some problems.    I didn’t return to either of them because I felt they did not understand the neurological issues.    In fact, one doctor became very impatient with me when I told him a number of times I could not do some of the visual tests he was asking me to do – it just didn’t work.    When I noticed more vision problems recently I made it a point to find a neuro-optometrist.    You can find a specialist in your area by visiting:

Neuro-Optometric Rehabilitation Association – Health Care Locator

The following chart, intended for children’s development, shows the components of the visual system and helps me see how they interrelate.     Source:   http://lynnhellerstein.com/the-developmental-vision-model/

Click on image to view an enlarged image:

Developmental-model-color (1)

 

The Center for Neuro Skills also provides a good overview of visual problems associated with brain injury:

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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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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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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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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