Resources & Inspiration for Life with Brain Injury

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Cooking is a Cognitive Challenge

by Linda W. Arms

Many of us used to think that cooking was a fairly simple task.   I thought so before my brain injury.   Even though I was very busy with a demanding job and other things in my life, I enjoyed cooking.   I was never one to follow recipes.   I preferred getting ideas from meals I ate in restaurants and looking in food magazines.   I liked to create my own things and made many complex dishes for my family and guests.

I don’t really care to cook that much anymore.    It was one the things I immediately stopped doing after my brain injury because I didn’t have the physical or cognitive energy.    My family took care of cooking for me, including the shopping and the cleaning up.   I just couldn’t do it.    I was very weak at the beginning.    My motor skills were off.    Stirring and other rotating hand motions made me nauseous and dizzy.    My vision had a number of problems that weren’t yet fully diagnosed.   The tasks involved in trying to cook a small meal were too overwhelming for my brain to process easily.

I just didn’t cook.   It was just too hard and it made me feel worse.   I tried many times to at least help by doing a few tasks but often that was too much for me.   We just don’t realize how much is happening when we cook something.    You have to decide what ingredients and dishes you need.   You need to wash and cut things up.   You need to figure out the order and timing of things.  You need to use motor and visual skills as you use utensils and do other cooking tasks.  You need to use memory.    You need to process things and sounds that are around you in the kitchen; you need to tune those things out and focus on what you’re doing.   I’m sure that’s just a small part of it.   But you get the idea.   Lots of stuff happening for our injured brain to process.

Over the last years I slowly expanded my cooking activities.   I would do easy things at first.   Someone in my family would help by cutting things up for me.   Someone was also always standing by to save me.   They also were quiet while I cooked.   They knew that any talking; or having the TV or radio on would cause too many problems for me.   I had to have silence and no distractions while I cooked.   S..l..o..w..l..y  over the last seven years, I am doing more cooking and even talk at the same time!   It sounds silly but that’s how it is.   I expect some of you can relate.

I don’t really enjoy cooking that much anymore.   I still have to approach it differently than I did before.   It’s a lot more work.   I usually always burn one part of the meal.   It’s kind of a joke these days.    I’d like to also thank my husband for stepping in and cooking many of our dinners these days.   He’s become a wonderful cook!

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mid section view of a woman cutting vegetables

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Why is Eating So Much Work?

by Linda W. Arms, Feb. 7, 2013

After a brain injury, everything seems to take so much energy out of you.   One of our most basic needs, nourishing ourselves, can be a lot of work.   Obviously cooking involves a lot of cognitive activities but even eating can be challenging.    After my TBI, it was difficult to sit at a table and eat.   I would often eat part of my meal and be so exhausted that I would have to lie down.

Think about everything that is going on at the table while you’re eating, especially if others are with you.   Another person is moving their hands to pick up the fork, cutting with a knife, moving food to their mouth, reaching for a dish of food…   They are picking up glasses to drink.   They talk.   Maybe a radio or TV is on in the background.   There are plates, glasses, napkins, and other things on the table and all around you.   All of this is being processing by your injured brain.    On top of all this, you have to feed yourself.   All those little actions that have to be handled by your brain.   Can you see why it’s exhausting?

I had visual problems after my brain injury that took a few years to be resolved.   It was very uncomfortable for me to sit at the table and eat. I wasn’t particularly hungry and then adding the stimulation of being at the table was too much for me. Even my own hand movements of eating and cutting the food were too much visual stimulation.   I would sometimes feel nauseous from the hand movements.    For some reason, clear glassware on the table caused a problem for me also.   I think my brain couldn’t quite figure it out, looking through it or whatever but the more there was on the table the more difficult it was for me to look at it.

I also had a sensitivity to sound and light.   Think of the sounds at the table that your brain has to process.   Bright lights around you add to the level of stimulation.   I used custom fitted musician earplugs to muffle the sounds around me but, unfortunately, having them in my ears while eating did not work very well.   The sound of me chewing was very loud which was disturbing.   The chewing sounds would also drown out anything someone was saying to me.     I knew I had to eat but the experience was not comfortable or enjoyable.   I’d eat a bit and then take a rest.     This is a lot for an injured brain to deal with just being at home where your surroundings are familiar, imagine the additional burden when you are out at a restaurant!   Just remember it gets better as your brain heals.   Know your limitations, and try to control your environment to keep things that trigger your symptoms from taking over.

 

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Shunned

by Linda W. Arms

People with brain injuries often feel they are looked down upon, avoided, ignored and just not accepted by other people.   We are probably right in feeling that way sometimes.   I know that for several years after my injury I did not feel worthy or at the same level as other people.   In fact, I never went back to the office I had worked at for over 18 years.   I avoided contacts made by the few who tried to reach out to me.   I was almost ashamed to show myself and interact with those people because I was not as capable as I was before.    I expect many of you had similar experiences.

At about 18 months after my injury I started going to water aerobics due to a recommendation from my physical therapist.   It was challenging at first between the loud music and trying to figure out how to keep up with the instructor and a pool full of mostly women aged 65 to 80-something.    I immediately knew I had to wear ear plugs to tune out the music and the shouting of the instructor.    The older ladies asked my name and talked to me a few times at the beginning, even in the locker room when I didn’t have my ear plugs in.   I had problems communicating with them.   Too many talking around me or at me, I couldn’t always respond.     Often when I did respond they were already on to something else.   I was too slow in gathering my thoughts and getting the words out of my mouth.   Sometimes I misunderstood what they said and sometimes I said things that were kind of stupid because I did not understand what they were saying.   After several visits I mentioned I had a brain injury.    I think they just all gave up on me.   I just started getting looks and getting ignored.    They stopped talking to me.    I think perhaps they also thought I was unfriendly.    It was hard to listen to understand, say something useful, have a smile on my face, keep my balance, block out the distracting sounds and movements around me and do whatever else it was that I was trying to do, like get dressed, or open my locker.

After a while we just ignored each other.   I didn’t have to try to keep up with the elderly ladies and they didn’t have to deal with me.    I’m happy to say that the instructor was always very nice to me.   I still see her at the pool and she always gives me a friendly “hi”.   I’m doing better now; I don’t do the water aerobics and moved on to other things.    I expect if I did I could interact with everyone quite well.   I have much more confidence now to talk to others and most don’t realize I even have a brain injury.   I’m lucky, I know there are many who never get back to the point of doing this well.

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K.I.S.S. – (Keep It Simple Sweetie) – Part 1

by Linda W. Arms

This is for family, friends, caregivers and the many people who are part of providing medical services to those with brain injuries.    First of all, thank you for your care and concern during our journeys from our brain injury event to where we find ourselves today.   It is not easy for you either since you probably have to do a lot more because of things we aren’t able to do.   You also have to have an extreme amount of patience.   It is not an easy job.   We want you to understand us but sometimes it hard to know ourselves.

Comprehending what is said to us is a big problem for many of us with a brain injury.   The words coming at us often don’t sink in for a variety of reasons.   This makes it difficult for us to understand what is being said and it can be very fatiguing and frustrating.   Once we’re “brain fatigued” everything else is difficult until we have a chance to recover.

Here are some very friendly reminders to make communication easier for us:

  1. Speak slowly – my injured brain has to hear the words and also process them.   My brain can’t keep up with what’s coming at me if words are coming too fast.  I have to make my brain work a lot harder to keep up with a fast pace (sometimes I don’t even try).
  2. Speak clearly – it takes a lot more brain processing to hear the words when someone is mumbling or speaking towards a different direction so sound is not coming straight at us.   Someone with a brain injury may have to spend a lot of brain energy just to hear the sounds let alone process what the words mean.
  3. Get to the point more directly without meandering into other side topics  – The injured brain may have problems remembering what was said 60 seconds ago especially if unfamiliar topics are being discussed.   We are trying to keep track of the conversation but if there is a roundabout presentation of the topic of discussion we will often get lost.   I have found myself trying to remember what seems to be important points but the speaker is going off in other directions.   My poor brain is working hard just to remember those points as other words are coming at me that don’t seem to be part of the main topic.

Simple

Find out more about making communicating easier in my other posts:

Part II of K.I.S.S. – “Keep It Simple Sweetie”

Part III of K.I.S.S. – “Keep It Simple Sweetie”

 

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One Thing At a Time – Being More Successful with an Injured Brain

by Linda W. Arms

A while back, I came across an article “10 Steps to Mindfulness” by Leo Babauto.   As I was reading it I realized it had many good tips for people in general but especially those with a brain injury.

After a brain injury, many things are difficult or impossible to do.   Instead of constantly attempting to do things as you did before and fail, realize that it’s best to focus on one thing at a time.   You will be more successful and be less frustrated.   After my TBI, I really did not have much choice but to approach everything slowly and methodically.   My brain did not allow me to do any more than that.    I realized that having 1 or 2 tasks (besides getting up, dressing, showering and eating) was often more than enough in one day.

Even today, I have to often step back and remove the multiple tasks I have before me.   I select a few that are most important and concentrate on doing them well.   When I have too much on my plate, I become easily overwhelmed, fatigued, clumsy and cannot move forward successfully.   Here are the first two steps from Babauto’s article:

  1. “Do one thing at a time. Single-task, don’t multi-task. When you’re pouring water, just pour water. When you’re eating, just eat. When you’re bathing, just bathe. Don’t try to knock off a few tasks while eating or bathing or driving. Zen proverb: “When walking, walk. When eating, eat.””
  2. “Do it slowly and deliberately. You can do one task at a time, but also rush that task. Instead, take your time, and move slowly. Make your actions deliberate, not rushed and random. It takes practice, but it helps you focus on the task.”

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It’s Your Choice

January 6, 2013

I just read an inspiring article I want to share with you.   First, I’d like to highlight this quote in the article.   It is from Brad Snyder, who was blinded in Afghanistan. “Choice — that word means a lot here,” said Snyder, 28, a former Navy bomb-disposal expert. “‘Choice’ puts everything on a level playing field. Each of us faces a plethora of daily choices — when to get up, what to eat for breakfast, what to say to your family before leaving for work. You can choose to be positive. Or you can choose to be a victim. “You can choose to move forward with grace. Or you can choose to succumb to negativity.” Please read the rest of the article, it is really good:   Alive Day – MSNBC.com

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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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The Gift

A while back,  I received an inspiring message from a friend.   It was a YouTube video by Louie Schwartzberg, an award-winning cinematographer and innovator in the world of time-lapse, nature, aerial and “slice-of-life” photography.   After watching the video it reminded me of “the gift” I was given as a result of my TBI.   I’ve shared a link to this video later in this post.

Nearly 7 years ago I suffered a traumatic brain injury.   Like most of you, I’ve had many problems as a result of the injury.   The accident took away things I can never get back.  On a personal basis many things are gone.  Professionally I lost everything in terms of income and my capabilities. The accident took away things I can never get back.   I keep improving, even now, but I don’t want to lose “the gift”.

Prior to the accident I could never have enough to do.    I was very driven and always wanted perfection in what I did and the people around me.    On January 15, 2006 my world changed but I was also given a gift that I am grateful for.    With much despair after the accident I worked hard to get better and I learned many things that are important.

For the first few years my thinking capabilities were very difficult.   I could describe it as cotton balls muffling everything in my brain, muffling my thinking; or as muddiness where the thick murkiness slowed everything in my head.    My view of the world became very telescopic.   I could only focus on a very small piece of what was before me.   Since my brain was now not cluttered with a million other thoughts, I saw the world very simply and was able to connect to the quietness and beauty of nature.   I could let the beauty of what I was seeing or feeling into my relatively empty brain and really experience it.

I learned to see and feel the quiet and healing of nature.   I watched butterflies, stared at flowers, felt the breeze, smelled the soil in my garden.   I enjoyed very simple things.   I saw and experienced many things most people around us are not capable of in our busy world.   I watched the blur of activity of other people racing around in their lives and I thought “they are not really living”.    They do not see our world.   I could not see or feel our world before my accident.   Although, in rare times, I stopped for a split second and saw the glimpse of a beautiful flower it was a fleeting, shallow experience.

As a result of TBI, I can truly feel and appreciate the beauty and comfort of nature.   I love viewing the nature around me, inhaling it, feeling it throughout me.   I love the silence of nature and am comforted by it.    I can sit and enjoy the sky, the birds or flowers or just feel myself exist and feel connected to the world around me.

It is a wonderful experience that I can now have as a result of my TBI.    I hope all of you can find a gift that you were given as a result of TBI and be grateful for it.

Let me share with you the video that inspired me to write post.   Once you are redirected to YouTube you will need to click on the video to start it.

http://tedxtalks.ted.com/video/TEDxSF-Louie-Schwartzberg-Grati