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More Is not Better!

by Linda W. Arms

I thought I’d shared this post again since we’re in the beginning of the holiday season. This is the time where there is SO much of everything which is often very taxing for a person with a brain injury.

Post 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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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 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, 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. Say “No” – sometimes it’s better to turn down large family get-together because of all the challenges of interacting, a lot of 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.    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.
  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 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.
  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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The Brain Fairy – Milestones

Thank you for your support and participation on my Facebook page, The Brain Fairy – Living with Brain Injury and on my website www.thebrainfairy.com    As of this month it has been two years that I have been doing this.      It has helped me in my journey of recovery.   I feel that I cannot say, or that any of us can say, a journey to recovery.   To me, that means recovery is a final destination.  I think that after a brain injury there is no end point in recovery.    It keeps going.   We can’t stop working to make progress in improving or maintaining the improved functionality of our brain especially as we also start experiencing the effects of aging.

We also can’t stop raising awareness of brain injury whether it’s due to traumatic brain injury, stroke, aneurysm, anoxia or whatever the cause.    I did not understand the impacts of a brain injury before it happened to me even after seeing it happen to people I know.    I think there’s been much more awareness in recent years due to the soldiers returning from the Middle East wars and the NFL players suffering from brain injuries.   But there’s still a long way to go in educating people about what a brain injury does to you.

About 3 years ago I was talking to my husband about some problems I had that day and I said “I guess the brain fairy just wasn’t helping me that day”.   That’s where the name of my website came from.   How our brain works and how it repairs itself is still a mystery.   Medical professionals can do much to help in recovery but there is still a mystifying process that brings our brain back to a better place after a brain injury.   For me, the “brain fairy” has been that elusive thing that has caused the problems and healing associated with my brain injury.    I do not understand how it works but slowly things have worked better in this mysterious world of my brain.

When I started the The Brain Fairy I was dabbling to challenge my brain but hoped that someone would visit and get some benefit from the information available on the site and from the posts I wrote in my blog.    My goal was first to get maybe 50 views a month on my site but I am happy that so many more people visited than I expected.   As of a couple of evenings ago, I have reached 30,000 views for the 2 years in existence.

So thank you all for your interest and support.   You have helped me make my brain get better.   Two years ago, I needed perfect silence and needed to be well rested to write anything I posted or to do any of the maintenance work on the website.   Yesterday evening after a busy day of doing other things, I wrote this, and I was listening to music at the same time.   I couldn’t have done that 2 years ago.  I have gotten so much better in this time in so many ways.

Keep visiting me and I’ll keep visiting you to share our experiences and important things to know about the brain.

Linda W. Arms  (a.k.a. Mina Kitty)

Visit me:

Web site and blog – www.thebrainfairy.com

Facebook – https://www.facebook.com/pages/The-Brain-Fairy-Living-with-Brain-Injury/288317964619749

 Email me at:  MinaK@thebrainfairy.com

 

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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Seeking the Gift  – (Bliss after a Brain Injury?)

by Linda W. Arms, dated November 4, 2014

For several years after my brain injury I felt a certain sense of peace and contentment.   Did any of you experience a similar thing?   I know brain injuries are all so different and I know it seems odd, but I feel there was a gift that came with the injury.   My brain could not handle much more than getting me through the day while in my home doing less than 5% of the things I used to do in my life.    Even though I was in a fog and knew I was just a small piece of my former self, I enjoyed a sense of bliss.

Prior to the accident I had a career, I had a social life, I had many interests.    My life was full of activity and I could never have enough to do.   I was very driven and always wanted perfection in what I did and the people around me.    It was difficult for me to relax.   I was doing yoga for several years up until the accident and it helped me find some calmness.   I read all sorts of self-help books to learn how to be more mindful and content but nothing worked.   Until I got hit on the head, that is.

I was turned “off” when the trauma occurred.    A door shut on what my life was.   My world shrank to a tiny portion of what it was.   My mind could only deal with things in the moment and only simple things.   I struggled to get through each day and often slept up to 14 hours a day.

I could only focus on a very small piece of what was before me.   Since my brain was no longer cluttered with a million other thoughts, I saw the world very simply.   My mind was often empty with no thoughts.   I learned to connect to the quietness and nurturing of nature.   I could let the beauty of what I was seeing or feeling into my relatively empty brain and really experience it.  I was living in the moment.   I did not worry.   I did not get angry (or display many other emotions).    I was at peace (sort of).

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 the brain injury, 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’s been almost 9 years since my brain injury and I am so much better.   My mind is now very active and I’m getting back to the many interests I had.   My peace and contentment have faded.   The bliss is usually not there.   But now, since the brain injury, I know what that peace and contentment feels like.   If I concentrate I can feel it for moments but it takes work.   I have to look for that gift of bliss.   I have to work on it.   I certainly know I  don’t want to lose it.   So now I’m back reading those self-help books and using other resources to help me keep the gift going.

I know my brain injury was a terrible thing for me and my family but I also found a silver lining that I will hold on to for the future and am grateful for.   Have any of you discovered a gift as a result of your injury?    Or maybe a new talent?

With peace….

 

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Having a Brain Injury (it never ends…)

by Linda W. Arms, June 22, 2014

What is a brain injury like?   It’s not like a broken leg.   It’s not like most other medical conditions or diseases.   It’s not getting old and experiencing “senior moments”.    It is very different although many people look at it as “oh, you’ll get over it” or “I have that too, it’s what happens when you age.”

A brain injury, whether from trauma, stroke, aneurysm, lack of oxygen or other cause, happens quite suddenly – out of the blue.   You are fine; everything works; your mind is active and full of ideas and dreams and thoughts; you walk about without a problem.   You can speak and comprehend what someone is saying while you cook or do something else.   You read, watch TV, drive, cook, solve problems, make decisions…..   Most likely you don’t think about your brain at all but it is what is making those things all possible. 

After a brain injury, you suddenly are unable to move about or think like you did before. Brain injuries vary in their effect on a person depending on the severity and which parts of the brain were damaged.    In many cases after a significant brain injury, your mind is blank without any thoughts unless you force them to be there.   You have to concentrate on thinking through a simple thing in your head because you lose your focus very easily.   You are in a fog.   When you try to think through a simple thing you feel like your head is full of thick mud or dense cotton that muffles and gets in the way of thinking clearly.   Sometimes it’s impossible to think even about the simplest thing, the blankness just returns.

There is a sense of other worldliness around you.   Your senses are muffled.   Your sense of presence is gone.    You feel you are not really part of what is happening around you.   You can’t experience everything going on around you.   Your view into the world around you is very small like looking through a little tube.   Your awareness is missing.   You often just stare off into space with emptiness in your head and in your eyes.

You have problems understanding what people are saying to you.   You have problems talking and explaining something you want to say.   You can’t find the words, the words don’t come out right, and sentences are hard to form.   You have few emotions, there is no joy, there is no happiness, there is no anger, there is no sentimentality, there is little except maybe some sadness and nothingness.

You have to hide in a safe, quiet place because the world is too chaotic for you.   You can’t go to stores, you can’t hear sounds, you can’t have too much movement around you before you feel so overwhelmed, you can’t see straight or walk right.   You have to move slowly because you don’t have the strength or energy, you have to be careful walking through doorways or passing by things because things aren’t really where you see them to be.   You have odd sensations in your head, you have odd tingling in parts of your body, you may not feel pain the way you used to.

You’re cold all the time, it’s hard to get up out of a chair or out of bed because you are so weak.   You are tired, always tired. You sleep and sleep for sometimes 14 – 16 hours a day.     You get up in the mornings and it takes hours to feel alert enough to function.   You sit there waiting for the disturbing sensations in your head to settle down while your brain is adjusting to being awake.    Sometimes you can’t get there… you have to go back to bed and sleep after getting up just an hour or two earlier.

You have a sense of great loss.   You are not the same.   For so many reasons, the essence of who you are is gone.    You don’t do what you used to do like work or drive or be with friends.   You almost don’t care sometimes because it’s all you can do to think about getting through the day with the chaos that is now part of your world. 

You feel fragile, broken.   You feel damaged.    How do you pick up all the pieces and make progress.

You think “what has happened?”, “did this really happen to me?”,  “is this all my life is going to be like?”  “am I ever going to get better?”, “it’s been 6 months and I’m still not better”, “this is terrible but I have to be grateful it’s not worse and that I’m alive”.

It goes on and on and on for months, for years but gradually you get better.    You make progress but it is very slow.   It takes years.    Sometimes you encounter relapses.   Sometimes you have symptoms you thought were gone but they are back because you are stressed or tired or over-stimulated or sick.

Someone very close to me recently asked me about my brain injury recovery and said, “When did it all end?”    I said, “It didn’t end”.    It never ends.   It’s always there sometimes better, sometimes worse.    There are more days now where I don’t think about it because I do quite well.    I am grateful for the progress I’ve made and most people who didn’t know me before wouldn’t know the difference.    But I know.   I remember how I used to be.   I haven’t gotten it all back but I’m still working on it.   Like so many of you with brain injuries, I realize how strong I have been to have gotten through all this and I am grateful I am doing as well as I am.   I am proud of myself and the hard work I’ve put into my recovery.   I’m sure many of you feel the same way.

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How to Be Successful When Making a Phone Call Having a Brain Injury

by Linda W. Arms, dated March 29, 2014

Many things become difficult after a brain injury.     We take our ability to perform everyday tasks for granted until after our brain becomes damaged.    Simple things become a challenge.     For me, simply frying an egg and turning it over was extremely difficult and exhausting.   A phone call was a multi-day undertaking.

Making an appointment was very challenging for me since speaking, comprehending, thinking, and processing visual input were difficult.    I would prepare a day ahead by looking at my calendar and figuring out which days I could potentially go for an appointment.   I had to consider also how I would get there since I couldn’t drive.    I would note which days and times would work.    I would write down what it was I needed to ask and the phone number.    Just this process by itself was overwhelming and left me unable to actually place the phone call.    Usually the following day I would review my notes and make the phone call.    I was often successful when I followed my process, however, if the appointment times that worked for me were not available I couldn’t think through alternate dates while I was on the phone.    I would write down the options I was given for appointment  times and tell the person I would need to call back.

Here are some tips for being more successful when making a phone call.   During the extremely challenging years of my recovery I did this to help myself get through a phone call and accomplish what I needed to do.

  1. Prepare before making the call.   What do you need to accomplish?   Are you trying to make an appointment, are you trying to find the answer to a question you have, are you trying to purchase something?   Prior to calling, write these things down so you can stay on track during the phone call.    Remember there are many things that can lead you off track like the phone menu system of the business you are calling, or the person who answers may ask all sorts of things of you before you can get to what it was you were calling about.
  2. Write the phone number on the same piece of paper that you are writing your notes on.    This way you don’t have to search for the number right before you call.    If you get interrupted, the phone number and your notes are in one place so you don’t have to go through the effort of re-thinking and locating information.
  3. Review any paperwork, like an invoice or catalog, you need to be familiar with prior to making the call.    With a brain injury, it may be difficult to have a phone conversation at the same time that you are reviewing written information.
  4. If making an appointment, have your calendar ready.   Review your calendar prior to making the call so you know which days will work for you and which ones will not.  Write down the days and times that will work or circle your calendar.     Remember there’s a lot going on during a phone conversation.    Prepare yourself ahead of time with the information you need.
  5. Prior to making your phone call you may want to look at the business’ web site to be better prepared and informed about their product, business hours, location, etc.    This may help you to know what questions to ask during the phone call.    It may be difficult to think about all these details when just calling an office and not being prepared.
  6. Make your phone call from a quiet location that is free of distractions.
  7. If you can, make notes during your conversation to keep you on track with what you are learning and what you need to ask.
  8. If the person is speaking too quickly for you, ask them to please slow down.
  9. If the phone call doesn’t end up like you rehearsed just tell them you can’t make a decision now or aren’t sure if that appointment date will work.    Tell them you’ll call back.    Give yourself time to think through the problem that presented itself during the phone call and call back when you are ready.

I still do this but can now do it right before I make my phone call.    My brain needs all the help it can get so I know that by preparing in advance I can be more successful.    What about you?   Do you have some suggestions to add regarding making a phone call with an injured brain?

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Body Song: Utilizing the Power of Sound, Music and Vibration for Brain Injury

In my last article about music as a healing tool after brain injury, I mentioned that I would share a guest blog written by Leigh Ann Phillips, a musician and sound healer.   Her music has been one of my favorites for “brain massage” after my brain injury.     Leigh Ann actually calls it sonic massage.    It helps settle my brain and ease symptoms when over stimulated.   It refreshes my cognitive reserve.   But since brain injuries are all different, you might have different types of music that provide that “refreshment” for you.    Thank you to Leigh Ann for sharing her knowledge and artistry with us to help us  understand her approach to healing with sound and spirituality.     It is a very interesting article that helps me understand why certain sounds make me feel better and how sound effects our body.   If you are interested in listening to her music or purchasing a song, you can visit her website at www.leighannphillips.com.   In fact, she generously offers some free downloads on her website.

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Body Song: Utilizing the Power of Sound, Music and Vibration for Brain Injury via the Quartz Crystal Singing Bowls

by Leigh Ann Phillips

First of all, I would like to thank Linda for inviting me to participate in this healing blog.  It is my honor to share some of my experience with music, sound and vibration.    My intention is to share experience that can hopefully assist on the journey of healing from a brain injury.  I have developed a method of brainwave entrainment primarily using the quartz crystal singing bowls as well as my voice.  I have also recorded some music that can assist in the healing process.   I have worked with thousands of people in individual sessions and groups.  A small group of those folks have had brain injuries.  Though the number of people dealing with this ailment has been small, I have learned much from working with these courageous folks.

I have never had a serious brain injury.   I have had a concussion.  That experience has definitely given me great empathy and compassion for those suffering from a brain injury.  It has given me, humbly, a taste of what it must be like to have that experience.  I can only hope by sharing some of the journey with clients and also in my personal life, that there will be at least one tool in here that can hopefully improve this condition.  Not all sounds are created equal, and yet there are some sounds that can help immensely.  The path is profound, and not always easy, but it is important to keep going, never give up, and listen to the bread crumbs of our inner knowing that allow the Higher Self to be heard in this world. 

Sound, music and vibration are not just the languages of the universe, but also the architecture of the Cosmos.  The way sound operates in the universe, between the Earth and Sun, and also the relationship with other planets, is the same way sound works in our physical bodies.  We are a microcosm of the macrocosm.    As above, so below.   

There are certain truths that we do not have the perception to see that happen all around us.  Most of us do not notice that the Earth is spinning 1000 miles per hour.  We do not even think about it.  The Earth also moves around the sun at over 67,000 miles per hour while the Earth orbits the Sun.  The Sun is also in orbit around the Milky Way galaxy.  The Sun moves around the Milky Way, taking all the planets and moons with it, at over 600,000 miles per hour.  From our perspective, we do not perceive any of this amazing movement.

Why do I write of this?   It is two-fold.  One is, I would like to explain the musical relationship of the Cosmos and our physical bodies, and how understanding that relationship can be part of being more conscious about life, our lives, and ultimately, consciousness.  Consciousness is a form of healing.  It is part of the process of healing.

Besides the musical relationship, I ask, if we are to continue having this cup of tea and conversation together, that you simply stay open.  Part of the gift of incorporating sound and music as a form of healing and the integration of mind, body and spirit, is that sound literally builds new neurological networks that connect the left (logical) hemisphere of the brain with our right (intuitive) hemisphere of the brain.  The more neurons you have firing, the more neurological networks that a person has that connect the two hemispheres of the brain, the more the perceptual doors open, allowing logic and intuition to open the perceptual doorways, allowing us to make better choices, not just the choices we have made before.  We know where those choices go.  We have been down that road.

But what gets us to where we are going is not what we know, but what we do not know.  Therefore, being open is key to evolving, and it is key in allowing healing to take place.  Too many times we make choices from our logical mind.  Many choices that are correct for us are not always logical.  Miracles literally take place each day, and miracles do not make sense.  All I ask is that as we sit here, having this cup of tea together, that you remember that tea bag that went in your cup of tea.    That was alchemy.  Making a cake is alchemy.  You are following a recipe, taking ingredients, and getting an outcome that has literally changed the composition of the original state of the ingredients.

I have seen sound do the same thing to the human body, mind and spirit.  Though sound is not visible, it is visible in the sense of how it shifts what is visible.  Sound, music and vibration can be considered a form of energetic nutrition.  Receiving a sonic massage is something that can not only shift your body, but your mind.  And since there is no separation, we need to take all of this into consideration when making choices.  Please remember there is no separation between how we live our lives, how we spend our time, what choices we make, and how we heal.  How we spend our free time is how we grow.

So with our cup of tea, let’s go back to the universe for a moment.  Let’s start with the Earth.   Many years ago, a group of Russian and American scientists went out into space together, and decided to measure the Earth in terms of sound and vibration.    They discovered that the Earth’s circumference resonates at 7.2 Hertz.  In musical terms, that is a very, very low F, an F that would be lower than any F-note on a piano.  Let me also just say briefly that you can think of Hertz as a cycle, or a wave.   If we were looking at the ocean, and counted the waves in a minute, we could describe those waves by saying cycles per minute.   Because the brain moves much more quickly, we say Hertz, or cycles per second.

Long ago, Kepler discovered that the Earth as a whole resonated at 136.1 HZ, which is a little above a middle C, and a little bit below a C#.   Do not worry about the notes.    You do not need to read music to understand this.   Basically this means that the Earth resonates at a fifth.   Anyone who has seen the movie, “The Sound of Music” may remember the song, “Do Re MI.”  The musical relationship of the Earth would be “Do Re Mi Fa Sol.”   It is an interval of music that is seen over and over in the universe, in our physical bodies, and in almost every variety of music, including classic, pop and rock.  The Sun, which is basically a huge gaseous ball, also resonates at a fifth.  There is a solar umbilical cord that connects the Sun and the Earth, and that too, resonates at a fifth.  I would like to have you imagine that music is a direction.  It can either come or go.   A fifth is more yang.  It is an interval of music that the Romans would bugle to the soldiers to get them motivated to go to battle.   It is in a way an alchemical interval of music.  It can shift the brain, the heart, and the entire physical, emotional, and mental bodies, as well as the spiritual aspects of our Higher Self.

Let’s talk about how it affects the physical body.  When we hear the musical interval of a fifth, that fifth literally shifts the harmonic rhythms of the heart, and then through the Vagus nerve literally travels to the temporal lobes of our brain and begins to slow our brain states.  The sound or music enters through the ear, strikes the eardrum, and is then transduced into neural activity in the brain.  Neural networks carry the stimulus of the sound down into the brain stem and to the medulla oblongata where it is routed into the Reticular Activating System.  This is where we now start to connect the dots to brain injuries.

The RAS is mostly a system of sensory arousal.  When a new and novel stimulus appears, it literally drives the brain into a more alert state.  This increases in the beta activity, which is a more enlivened brain state, and also activates the sympathetic nervous system.  When you are driving down the road, you are mostly in a beta brain state, and not aware of the physical body, and putting perception on what is in front of you on the road instead of what you are feeling in your body.   It is important to state, however, that the brain is never in one brain state.   Brain cells cluster together, and we can be in alpha, theta and beta all at the same time.  It is just crucial that we have enough alpha and theta brain states to bring about the states of consciousness that can enhance well-being.

When a sensory pattern is repeated, or if the timing of the sensory pattern is within certain tempos, the RAS tends to become habituated to the pattern and then decreases alertness.   Think about the times you have fallen asleep in front of the TV.  On some level you got used to this sound.  This generally increases the alpha and/or theta brain activity, and also stimulates activation of the parasympathetic nervous system.  You can think of alpha and theta as the magic window of healing.  Alpha brain waves allow the person to be aware of the external world, yet still feel the sensations of the body.  Theta is more like a lucid dream state, where the internal world becomes so real that the external world cannot be perceived, and therefore the world we are perceiving in the dream state becomes real to the body, as if it is happening in “real” time.  The brain cannot tell the difference between dreaming that the person is playing the piano or playing a sport, versus physically partaking in that activity.

When someone has a brain injury, often what will happen is their reticular activating system stays activated, meaning they are on constant alert.  Loud sounds can be challenging, and will sound louder to that person than they did before.  In fact certain sounds can become intolerable.  There is also a good chance that there can still be cortisol in the body from the trauma.  Cortisol will flood the area of trauma to numb out the pain.  Cortisol is activated when we go into a fight or flight situation.    With animals in nature, psychologist,  Peter Levine, discovered  in his studies  that animals can usually recover from a trauma relatively quickly, because they know how to release the cortisol.  Humans, however, will sometimes not be able to feel the sensations of their body, will stay in the head, and therefore will not give themselves the opportunity to release the cortisol. 

Many years ago I was in a car accident, and kind of mentally brushed off the fact that it was scary and quite traumatic.  I had done a 360-degree spin on a steep mountain pass, and the truck I was driving hit a snow embankment.  If the car had spun the other way, I would have gone over a cliff, down a mountainside, and probably would have perished.  Exactly 24 hours later, my body went into physical convulsions.  I shook for a total of five or six minutes.  I recognized at the time that I was releasing the cortisol from the accident.  It was a huge gift.  Not releasing the cortisol keeps the Reticular Activating System activated, which means that person is in a constant state of stress.

It has been a little tricky being able to use sound and music to alleviate the trauma of a brain injury.  I say tricky because often what can be challenging for us can also turn out to be a gift.  I have had my own sound healing experiences that were not physically easy in the treatment, but actually allowed the release to happen, kind of like riding out the wave of a tight muscle during a massage.  However, having an awareness of how music, sound and vibration operate in the Cosmos, as well as the different intervals of music, I would like to share with you what I have found to be effective.

Besides the musical interval of the fifth, there are other intervals of music that have a different “timbre,” a different feel, a different perspective shall we say.    The Romans knew a fifth was very yang, it gave a tour de force, a sense of movement, a direction of going forward.  It is a sound that amplifies the energy of a situation.  The same goes for rhythm.  There are certain rhythms that really move energy.  Most rock and roll is played in 4/4 time.  It allows things to really move forward.  As my friend and colleague, Dr, Dean Lloyd (http://www.acutone.com/ ),  has stated that in music, you are either coming or going.   Both of these examples, the fifth, and 4/4 time, raise the energy.  They enliven, just like the Reticular Activating System becomes enlivened when a new sound shows up on the scene.

Music can also go in another direction.  Music can also sedate, slow down and help us remember, to bring us back home.    There is something in music called a third.  Let’s go back to the Sound of Music.  “Do Re MI” is a third.  Let’s take that third and go back in the other direction.   “Mi Re Do”.  If we take that third and go back to the original note the tonic or root, back to where we came from, something magical happens.  The brain slows down, it sedates, it calms.  A similar condition occurs when we dance in a 3/4 time or listen to music with this rhythm.  This is the same rhythm as a waltz.  This particular rhythm is so powerful that in the Middle Ages it was considered a sin to sing, play or compose this rhythm of music.  It is very yin.  It is very feminine.  It is the meter of the Divine Feminine.

So let’s put this all together as far as experiencing a sound session.  Any music that makes you feel really good is music that is healing for anyone with a brain injury.  So as I share information about fifths, and thirds, please just know that music you love to listen to is doing you some good.  However, having said that, it is important to also not play the music too loudly; about 30 decibels is usually loud enough to have an effect.  That has a similar level of loudness as a loud whisper, or speaking softly.

Please remember, I am sharing tools.  There is no concrete system, there are no rules.  Whenever a therapist is holding space with sound, the primary goal is to observe the person to see which sounds are working for them.  If the person’s respiration, heart rate and brain states start to slow, then I know that the sounds are working for them.  One way to see if the person’s brain states are slowing is if you notice rapid eye movement happening, or if they state that they are seeing colors.  Rapid eye movement is indicative of theta brain waves occurring.  Seeing colors is demonstrative of the sound and music being integrated into the nervous system.   If they seem to be in a more enlivened state after a while, then they are probably done with those sounds and are ready for another form of sound nutrition.  On some level, that person knows exactly what they need.  My job is to observe, watch, and follow their body song.

As far as the quartz crystal singing bowls, one of the reasons they are so therapeutic is because of the harmonic overtones.  There are 16 harmonic overtones that the human ear can hear from one note.  They go on infinitely, but we cannot hear them all.  When we listen to the singing of a bowl, we are hearing what we call the fundamental or root note, but we are also hearing many different musical intervals of music within that one note, which are the overtones.  These harmonic overtones literally start to shift the brain states into that magic window of alpha and theta.  The root note is the lowest note.  The harmonic overtones move in an upward direction above the root note.

It is important to play them softly.  I call utilizing sound in a session a “sonic massage.” The sound literally goes through the entire body.  You can literally feel the sound going all the way through.  That is the vibration.  With a regular massage, we bump up against muscles and other tissues.  The sound and vibration are carried by something called the essentic wave.  It is similar to how massage works.  This “wave” works through touch and sound, which is why when we receive a Swedish massage our brain states slow.  It is the same with a “sonic” massage.

When playing the quartz crystal singing bowls, I find it is better to sing the bowls rather than chiming.  Singing means playing the rim of the bowl with a striker, which is made of a hard resin and covered with a suede-like fabric.   Chiming seems to activate the Reticular Activating System, unless the chiming is very soft.  We are looking for sounds, and actually vibration, that will activate the parasympathetic nervous system.  Calm, slow, soft, sweet sounds.  We are not going for dissonant sounds.  We are looking for peaceful harmonizing sounds.  Sometimes dissonant sounds can allow dissonant feelings to come to the surface.  But for this purpose, let’s stay with harmonic sounds.

Again, it is so important to literally ride the wave of sound.  Sometimes sound healing sounds are not pretty.  Sometimes they are.  Again,  in general with brain injuries, I tend to keep the sounds soft and melodious.  From there, you can expand.  It takes at least 10 to 12 minutes for the brain states to start to slow through music.  As long as you are checking in with the person, and they know they have the freedom to speak up and say what is working and what is not, then you can build a solid foundation of trust and musical healing.  As far as length.  Less is more.  It is better to not overdo it.

More and more people are enjoying the bowls not just in session work, but they are wanting to be able to continue the work in the comfort of their own home.     I have developed a line of quartz crystal singing bowls that have ancient mandalas etched on them, mandalas that amplify the energy of healing.  These are unusual-looking mandalas.  These cannot be found on the Internet.  A mandala in a sense, is frozen music.  Any geometric pattern emanates a certain kind of energy, depending on the geometric pattern.  This is a form of cymatics, but instead of sand, we are etching the patterns onto the bowls.  Emoto has shown a similar theory with water crystals.   There are several mandalas currently that have been etched on the gemstone bowls to accelerate healing.  Some of the mandalas also have a mantra that can be spoken or sung with it, which is another wonderful way to incorporate sound.  Anytime you speak or sing, you are giving yourself a sound massage from the inside out.  Again, please be mindful of what is sung or spoken.  One of the easiest ways to cause dis-ease in the body is to curse or swear.  Research has shown when you swear, you literally kill your own cells.  It is so culturally accepted to swear.  Eliminating these words, just this simple thing, can mitigate quite a bit of pain and suffering to the body, and our being.

I would like to share one more thing.  In this blog, I have shared quite a bit about the brain, since the topic has been how to treat a brain injury with sound.   I think it is very important to remember that the heart’s electromagnetic field is much larger than the brain.  In general, as a culture, we tend to celebrate our pain and suffering more than our joys and accomplishments.  It is part of our history, our ancestry, and it can be part of the human condition.  I have seen inner strength and empowerment be a catalyst for more peace and happiness to come into the lives of people.  I am not talking about the airy approach of let’s think positively.

Yes, absolutely, having positive thoughts can help.  But even that falls into the old pattern of duality, of negative and positive.  I am talking about the deeper knowing of nurturing inner strength.  Inner strength and empowerment are the roots of true happiness, and the branches of consciousness.

One simple practice that can be done is to eat your favorite food once a week, or watch your favorite movie eating your favorite food.  Or listening to your favorite song for two straight hours, to train yourself to go for the inner joy and strength, and not fall back on the old patterns of suffering.  All of these exercises will raise your consciousness and make it easier to find your own answers.

Years ago, while studying with my mentor, there came a six-month period where I was stuck in my lessons.  I just could not find the answers.  I was to look at a mandala, and explain to my mentor the purpose of the mandala.  There was nothing in the design of the mandala that was going to let me “figure it out.”   The only way I was going to get the answer was if my mind was clear, and my heart was open.  I “guessed” for literally six months.

I finally decided to sign up for a private day with my mentor, Dr.  Mitchell Gibson, fly to the East Coast, and spend the day with him and his wife, Kathy (www.tybro.com ).   One of the exercises they asked me to do was to look at myself in the mirror and look into both of my eyes.    What I saw was a split.  One eye was genuinely happy.  The other was not, and looked kind of dull and sad.  I had a duality in myself that was not letting my consciousness rise to the occasion, because some part of me was used to suffering.  As soon as I acknowledged this in myself, I decided to try the mandala again.

I “heard”  the answer to the mandala in 20 minutes.  Twenty minutes!   I had raised my consciousness to the point where I could “know” the answer within myself.  This was huge.  I tried another mandala.  I got that one in ten minutes.  I passed my lesson in a half hour.  Previously, I had suffered my way through the lesson for the past six months, and did not move forward.  By raising my consciousness, by becoming consciousness of that part of myself, everything shifted.     Yes, sometimes I still fall back into the old suffering, but I stay there for a lot less time, and my choices keep getting better.

There are more brain cells in your brain than stars in the known universe.  Each brain cell is like a seed.  That means you are a seed, and every seed is a potential.    Each one of those brain cells is a possibility.  The cells in your heart also “think.” They are very similar to brain cells.    I ask you, with your voice, your heart, your ears, your eyes, with all of the beautiful tools you have that are innately you, what is your knowing trying to tell you?

I can only imagine the journey you have been on, through this event called a brain injury.  Music, the universal language of Humanity, and the Cosmos, can be the catalyst for direct experience shifting the body, mind, emotions and consciousness.    My wish for you as you walk through the forest of ice is simple; that the crystal clear clarity come in the form of just the next step.

Wherever you are, begin there.   I trust your heart’s knowing, as you pray with your feet, and take that next step.    Thank you so much for sharing this cup of tea with me, in the alchemy of life.   It is a humbling, extraordinary journey we are taking.

Wishing you peace and blessings,

Leigh Ann Phillips

Celestial musician, sound therapist, educator www.leighannphillips.com

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Music as a Healing Tool After Brain Injury

by Linda W. Arms

After a brain injury many of us have an assortment of issues with sounds and music.    For some of us, sound becomes intolerable.  Even the sound of water splashing when a car drives over wet pavement or the sound of birds tweeting can be overwhelming.    Music may be unbearable.     Others have no problem with this and can listen to just about anything.         I could not tolerate most sounds or most music.    I did find, however, that there was certain music or sounds that worked like “brain massage” for me.   Since then I have learned that there is actually a recognized health profession that provides music therapy for that purpose or to treat cognitive, sensory, and motor dysfunctions.

It seems that music as therapy is still in its early stages in the traditional medical world.   According to Michael H. Thaut,  Ph.D., and Gerald C. McIntosh,  M.D.,  “The role of music in therapy has gone through some dramatic shifts in the past 15 years, driven by new insights from research into music and brain function. These shifts have not been reflected in public awareness, though, or even among some professionals.”  Their entire article is available (as a PDF download) in the March 2010 article,  “How Music Helps to Heal the Injured Brain”, that appeared in the Dana Foundation’s publication, Cerebrum.

I’ve spent more time recently learning about music as therapy for brain injuries and for brain wellness in general.    Gabriella Giffords, participated in music therapy as part of her treatments after a brain injury caused by a gun shot.    According to Headway, the brain injury association of Great Britain, “music therapy is often used to aid improvement in multiple areas of brain function deficit and to improve quality of life, as well as facilitating physical healing…  Music therapy uses multiple approaches to focus on different problems. For instance rhythmic auditory stimulation is thought to aid movement, musical improvisation is thought to help emotional expression, while singing, oral motor and respiratory exercises are thought to assist speech. Even simply listening to music is thought to be a potential tool in the control of pain, which is notoriously problematic to treat in some cases.”    Additional information about music therapy can be found at American Music Therapy Association.

Amy Price PhD wrote in an article for the Traumatic Brain Injury Centers, “Neuroscience reports successful outcomes with specially engineered music therapy programs. Reports of music making a difference abound in science and classical literature. In Bible days musicians were sent ahead of Warriors to maintain morale and to set the climate of victory for battle. Recently there has been much emphasis given to the Mozart effect. In some studies music has been emphasized as being able to even enhance mathematical ability.” She also discusses the “Listening Program” which offers many benefits but also “serves as a relaxing way to restore cognitive reserve and reduce the fight or flight response created by learning anxiety.”

Not only is music recognized as a healing therapy for neurological disease or injury, but the AARP references an article by Kimberly Sena Moore, “The 12 Benefits of Music Therapy”, in their brain health resource section.

Personally, I experienced a healing experience when I listened to certain music.   I could not tolerate most any other music like rock, pop, jazz or Mozart.   It felt like someone was scratching a chalkboard when I had to listen to it.   It agitated me physically and mentally; I couldn’t think at all; and it fatigued me.    By accident,  I listened to some music on a meditation CD and found that it soothed me and restored that cognitive reserve.    If I felt sensory overload or was fatigued, I would often listen to my “special music” to settle my brain, like brain massage.    I actually found great benefits from these alternative approaches to healing with music.   One set of music that helped me were the songs on Deepak Chopra’s CD called Chakra Balancing: Mind, Body, And Soul Pt. 1.    Another was a CD by Leigh Ann Phillips, Dawn Mountain, was very soothing.    Since Leigh Ann has a Colorado connection, I decided to contact her and asked her to write an article that explains her approach to healing with music:   Body Song: Utilizing the Power of Sound, Music and Vibration for Brain Injury

Visit her web site where you can listen to free downloads of her music or purchase a CD:   www.leighannphillips.com

 

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Don’t Talk About “Killing Time”; Don’t Give Up on Life

by Linda W. Arms

Since my brain injury I have become rather sensitive to healthy people complaining about being bored, not knowing what to do and are just “killing time”.      I’ve also become a bit impatient with those who have reached “senior citizen” status or are close to it and have decided to step down from living a full, active life.    Many of these people are very healthy and able-bodied and could do so much if they only chose to.    On the other hand, there are so many of us who have had an illness or injury where our options of doing anything are severely limited.   We struggle to get better.   We struggle to do the things we did before.   We struggle to do things like other people.     We are happy when we can do a simple thing without too many problems, even stirring a bowl of instant mashed potatoes!

There are people living with SEVERE handicaps and illnesses who appreciate the moments they are given and find joy in little things.    Killing time cannot be in your vocabulary whether you are healthy or struggling with an illness or injury.   Stopping activities or not living a fuller life because the age we have reached is giving up on living.    These are things no one should be doing, whatever your situation.    Those of us who have challenges and obstacles due to injury or disease need to keep looking for moments to enjoy life and participate in as many activities we can that bring us good feelings.   There are so many things out there to do or be involved in, even if its from a chair.

I recently read an article, “The 9 Essential Habits of Mentally Strong People” by Carolyn Gregoire, that appeared in The Huffington Post.    It describes habits and practices that help you get through challenges or hardships, and says that the obstacles we face is life itself.    The article tells about Jane Lotter who wrote her own obituary and left some advice to her family that said, “May you always remember that obstacles in the path are not obstacles, the ARE the path.”

I am fortunate that my brain injury was not as devastating as those of some other people I have met.   It has also been 8 years since my accident during which I worked hard to get better.  I tried doing things I did before and continued to do many of them even though it was very difficult.   Today I am much better but I keep looking for new goals to increase my level of improvement.    I want to live life.   I want colorful, rich experiences.   In my journey back from the despairing first years after my injury, I feel I have reached the mainland of living where I can participate more fully.

I don’t want to sit back and stop doing new things, learning new things because I am in my later 50’s like some of my acquaintances.    I don’t want to have spent 8 years working hard to get better after my brain injury just to sit down and watch the world go by.    I don’t want to kill time and I absolutely hate it when I hear other people who say that.   How sad!   Just think of the poor victims of the recent bombing in Boston or the shooting at the Aurora movie theater.   They lost their lives.   Their time is “killed”.    I’m sure they would like to have had the opportunity to trade places with some of the living that are “just killing time”.

A couple of summers ago I participated in a week-long camp for people with brain injuries.   I was a volunteer acting as a buddy to a camper who had a much worse brain injury than I did.   My buddy was injured decades ago at around the age of 19.   He was in a serious car accident that occurred because something in the car malfunctioned.   He was in a coma for several months.   Today he lives with a caretaker but he participates in life by going to camps and has other activities he enjoys.   He has terrible memory problems and many other cognitive problems.   BUT HE LIVES LIFE with a smile.    He is not bored.   He has a great sense of humor and outlook on life.  He does everything he can do with the cognitive capacity that he has.

Another camper I met who was truly an inspiration was a young man close to 40 who received his brain injury when he was a toddler.   He was in a coma for 2 years.   Nearly 40 years later, he is still in a wheel chair, he cannot speak, his motor skills are very, very poor.   He has to be fed or have food cut up for him.  He is always dependent on someone for everything.   When I first heard about him coming to the camp and then actually met him, I thought, oh my God!   How do you interact with someone who is so severely handicapped.   I felt so bad for him.   But do you know what; he had so much joy in his beautiful eyes and in his face when he participated in all the camp activities.   He loved music.    He loved interacting with everyone.    He often interacted using a computer that spoke for him.   His joy in these activities lit up his face.    He often had a smile on his face and laughter in his eyes.    He and I connected in the last couple days of the camp and I thought he was truly an inspiration to living a full life with whatever obstacles life has given you.

So my point is – no matter where you are at with your brain injury – keep going.   Live life, enjoy life, try new things and don’t just sit around “killing time”.   Don’t give up on life.   Be happy you’re alive.   Be happy you have options in living a fulfilling life and finding joy even if you have limitations.

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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

or

North American Neuro-Opthamology Society – Find a Provider

 

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)

 

Several excellent articles about vision and brain injury can be found at the following location:

The Neuro-Optometric Rehab Society

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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Friendships and Relationships After Brain Injury

by Linda W. Arms, January 29, 2014

After a brain injury our relationships with others change.    Very often in the first years we are too overwhelmed with daily living to give much thought to anyone else.   We devote our brain energy to getting ourselves through the day.    The little energy we have to interact with others is usually reserved for those very close to us, like our immediate families and perhaps very close friends.    As a good friend of mine told me after her brain injury, she put people away in drawers to get back to in the future when things were better for her.    I know I did this myself.   Some people are still in drawers or, without sounding rude, they have been discarded.

After my brain injury, other than my husband taking me to my office to gather my personal things, I didn’t reach out to anyone I had worked with, even those I knew for over 15 years.    I didn’t reach out to most of my extended family, friends or acquaintances.   I declined most invitations to anything.   I felt best, safe and most functional at home in my cocoon of quietness.

I put most everyone I knew away for many reasons.   Most of all I did not have the energy to interact with others.    Everything was overwhelming.    Just doing a little to get myself ready such as showering, drying my hair, and choosing my clothes were often more than I could deal with.    My body was weak and my brain was not working well.   Having to ride in a car was awful.    Trying to understand a conversation was challenging – people talking too fast, too complex, too loud, using facial expressions, gesturing with their hands, walking about as they talk, noise in the background….     It was hard, hard work for a long time.   Our brains have to process everything that is going on during that interaction and many of us just can’t do it until our brains have healed more.     When we try to take part, we quickly fade and lose more of our ability to comprehend and speak.  We become very fatigued and overloaded.    As someone once told me, your brain is then like a glass that you are pouring water into.    Someone keeps pouring in the water until it overflows.    That is what happens when we receive too much mental stimulation or input after a brain injury.   We just can’t hold everything that is coming into our brain to process.

My immediate family received most of the brain energy I had to spare in those early years.   I wanted to participate in their lives.   I wanted to take part in what they wanted to do as best I could even when it was not what I really wanted to do.   It was just too difficult.   My parents saw much less of me during the early years because I just didn’t have enough brain energy to spare.    Slowly I spent more time with them, helping them the best I could given my own limitations.

Next I started taking people out of those drawers that I stashed them in.   I started seeing or talking to people who I had relationships with that didn’t include me as a professional who had many business skills and knowledge.    I couldn’t find those skills and knowledge in the early years, they went into hiding in my brain.   I wasn’t the same person.    I wanted to be with people who knew me outside of my profession.    I started with just a couple people who could relate with what I was going through, had compassion or understood enough about how to interact with me.    There were a few people taken out of the drawers for my family’s sake but often those people were challenging to be around – they were a brain energy drain.

Slowly in the last years, I have taken more people out of those drawers and I can say I enjoy my time with them.    There are some who still are overwhelming for me and cause me to be exhausted for a day after being around them but I really like them.  There are some who I decided I would no longer include in my life because they just weren’t worth the energy I was spending on them.    They didn’t have nice things to say or our lives just took different directions.

I find I am much more selective in who I spend my time with.    I prefer being around people who are nice, have compassion and have values I can support.    After a brain injury, many of us cannot afford to use up our energy for toxic relationships or uncaring people.   We have to reserve our energy for those most important in our lives with ourselves being the first in line.     I’m still working on getting more people out of the drawers who I’ll reach out to when the time is right.    I’m working on expanding my world and the people I interact with.   I expect many of you are doing the same thing also.    We just need to remember that we have to leave enough brain energy for ourselves to stay healthy and functional.

“I don’t know what it is but I don’t find myself vibing with a lot of people these days. I realized that I’ve slowly and subconsciously filtered people out of my life who bring nothing to it. 

I no longer have the energy for meaningless friendships, forced interactions or unnecessary conversations. If we don’t vibrate on the same frequency there’s just no reason for us to waste our time…”  —  Joquesse Eugenia

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Happy “New Year”

by Linda W. Arms, dated Jan. 15, 2014

Today is the 8 year anniversary of my brain injury.    I know many of you have the date of your event noted as a “special day”.    I understand that many military veterans injured in our recent wars, refer to it as “Alive Day”.    From some of you, I’ve heard it referred to as your re-birthday, or new birthday.   Some of you mourn and wear black.   Recently, Gabriella Giffords, shot in the head a few years ago and who lives with brain injury, went sky diving on the anniversary of her injury to celebrate life.   Her Facebook message on that day sounds familiar to so many of us with a brain injury, whatever its cause.    She wrote:  “I’ve overcome a lot.   Progress has come from working hard.   Today, I grieve, I remember, and I take another step.”

And that is where I am at today.   Ironically and without having planned this, I am staying a few days with my husband in the small Colorado ski town I was visiting at the time of my accident.    I have avoided this area for the last 8 years and have slowly made peace with returning.   We decided yesterday, at the spur of the moment to come up here, forgetting about my anniversary.   I was a little spooked once I remembered I would be up here in this same place on my “special” day but I decided I had to face it.    In fact, this morning, I returned to the mountain and just looked up the hill where “The Accident” occurred.    The morning was very much the same.    There was that fresh layer of snow that had that special, beautiful sparkle caused by the morning sun reflecting off the individual snowflakes.    I remembered that often after the accident and now I saw it again on the same day, around the same time.   I wanted to cry, I felt sad and still do but I will not dwell on this.    I have chosen to move forward and make the best of things as I’ve done for the last 8 years.    It is the best thing to do.    It is what it is and cannot be undone…  

“A bridge of silver wings stretches from the dead ashes of an unforgiving nightmare to the jeweled vision of a life started anew.”  –Aberjhani, The River of Winged Dreams

“Getting over a painful experience is much like crossing the monkey bars.   You have to let go at some point in order to move forward.”  –C.S. Lewis

“We acquire the strengths of that which we have overcome.”  –Ralph Waldo Emerson

I particularly like something that Lt. Brad Snyder had to say in an NBC news article a couple of years ago.   He said, “Choice – that word means a lot here.   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.”

So as you begin your new year of 2014 and whenever the anniversary of your brain injury event arrives, remember that we have to move onward and be the best we can be.   It is often difficult.    We will have setbacks.   But as we all look back to where we came from since our injury, most of us can see that we are better.    The journey we’ve had has made us stronger in many ways.   I know when I look back and all I’ve been through, I realize how strong I’ve been.   I don’t want to forget that.    I want to remind myself about how far I’ve come.    Recognizing this strength helps me as I face new challenges in life.  

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths.   These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern.   Beautiful people do no just happen.”  — Elisabeth Kuebler-Ross

Happy “New Year” and now I will go out to enjoy the beautiful Colorado mountains by walking (or maybe snowshoeing) through the woods, enjoying life and continuing my journey to get even better.

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The Year I Ran Away from Christmas

by Linda W. Arms, dated December 17, 2013

Sometimes it might be good to get back to the very basics and have a very simple holiday season, especially after a brain injury.   So many of us are challenged by all the events around the holidays, doing what everyone’s expected of us in years past.    Many of us have to endure the big family get-togethers, or busy holiday environments.   It is challenging because our brains are overwhelmed.

Seven years ago, in 2006,  I could not face Christmas at home as I did in my past.   In January of that year I had the accident that caused my TBI.   By December of that year, I had not made much progress in my recovery.   I could not face the Christmas decorations and products that I saw in stores already in October.   I would get tears in my eyes.   The difficulties I had just in being in a store became even worse because of the emotions that my brain was having to deal with.   I was OVERWHELMED  by the thought of putting up a tree, buying presents and doing any of the things I normally did in the past, including always having a big holiday get together  at my home.   I just couldn’t face it.   It just was not possible to be who I was before.   So I, my husband and daughter, ran away.

We went to a place I used to live growing up and that I have many fond memories of.  We went to Germany where Christmas is still celebrated in a much quieter style.   We stayed in a small village.   We bought a tiny tree about 12 inches tall with a few decorations already on it.    We enjoyed some very low-key events in this village that did not allow cars on many of its streets.   I could face Christmas here.   I did not have to try to be the person of my adult past.   I took many naps.  I could not count the money to pay for things.  I could not sort out many things I used to know about being there.  I leaned on my family.   Even with all these things in my way, it is still a wonderful memory that I have of this special time when we ran away from Christmas.

Here is a picture of our Christmas decorations, a tiny tree, 2 tiny reindeer, 2 candles and not much else.    We just enjoyed the peace and tranquility of where we were.   We enjoyed just our little immediate family being together.

OLYMPUS DIGITAL CAMERA

Today, seven years later, Christmas is still much, much simpler compared to “before the accident” but I don’t feel I have to run away.   I am still getting better in small doses.  I hope all of you are finding yourself better than last year. Have a Merry Christmas!  Happy Holidays!

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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

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.    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.

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Holidays Challenge Our Brains

by Linda W. Arms

Today I noticed Christmas decorations being set up in a local shopping center, giving my injured brain moments of anxiety.    The holiday season is coming up fast.   It is a time when so much more is expected of us than most other times of the year.    Those of us with an injured brain, our loved ones, friends and caregivers should all remember that it’s best to simplify so we can enjoy things more.     Its been nearly 8 years since my brain injury and I’m doing better.    After seeing the decorations I thought to myself about all the things I “should” do but quickly reminded myself that I need to keep it simple.

Everyday can be challenging for someone with a brain injury but the holidays bring even more challenges.   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 all around us.   They are overwhelming for our poor brains to process.   Plus its a lot of work to put up so many decorations and take them back down.

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 in addition to reducing 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

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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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How to Prove Eligibility for Disability Benefits with a Cognitive Impairment

Since brain injuries are usually difficult to see, our symptoms and life challenges are often questioned.    I’d like to thank Ram Meyyappan, of Social Security Disability Help, for being so kind as to provide very useful information for those who are thinking about applying for Social Security Disability.   His article follows:

Cognitive Impairments are what is known as an “invisible” medical condition. Thus, it can be difficult to prove to the Social Security Administration (SSA) that your cognitive impairment qualifies for social security disability (SSD) benefits. The best way to do so is by providing the SSA with as much medical documentation as possible.

There are many conditions that can cause cognitive impairment. Cognitive disorders associated with an organic medical condition, which is one that has a physical root cause, are more likely to be approved for disability benefits. This is because the Social Security Administration (SSA) requires significant medical evidence in order for someone to be found eligible for SSD benefits and easier to provide medical documentation for an organic mental condition.

Types of Cognitive Disorders that may qualify for SSD Benefits

With the appropriate medical evidence, many medical conditions that cause cognitive impairment may qualify for disability benefits. The following conditions however, are a few of those that are more likely to meet the SSA’s requirements if certain forms of clinical documentation are present in your application and medical records:

  • Cerebral Cognitive Affective Disorder (CCAD)
  • Pick’s Disease
  • Stroke
  • Traumatic Brain Injury
  • Vascular Dementia

Appropriate Medical Documentation for Proving your Cognitive Disorder

Cognitive impairment can sometimes be tied to an organic medical condition through the following medical tests:

  • Functional Magnetic Resonance Imaging (fMRI) – this neuroimaging test makes it possible to clinically document changes in blood flow to different regions of the brain. With brain injuries and other kinds of conditions which commonly result in cognitive impairment, changes in blood flow indicate the advancement of disease or at least the physical presence of an organic root cause for a disability applicant’s claim of suffering from decreased cognitive function.

 

  • Magnetic Resonance Imaging (MRI) – a standard MRI can show many changes in the brain structure and physical or cognitive function. For instance, in degenerative brain disorders, MRIs conducted over time, document the progression of disease and the associated loss of cognitive function that results from that progression.

 

  • Computed Tomography (CT) Scan – like an MRI, CTs can often document the organic cause of cognitive function. In strokes for exam, a CT scan can show the location of the vascular event and the effects on the brain tissue surrounding the brain bleed as well.

 

  • Neurological Exams – physical clinical evaluations, conducted by a neurologist or other physician, can document the functional affects of cognitive impairment. When combined with other clinical evidence, the results of these kinds of exams can be instrumental in proving disability.

 

For example, cognitive impairment that is accompanied by a decreased ability to control motor muscle movements, can support the presence of an organic root cause for both cognitive impairment and the loss of physical coordination. Many forms of dementia result in both the loss of motor abilities as well as cognitive decline.

 

  • Lab Tests – while lab tests, or blood panels, do not often document the presence of cognitive disorders, they are nonetheless important in proving disability if you suffer from a cognitive brain disorder. This is because many cognitive impairments present similar symptoms to other types of clinical medical conditions.

 

Lab work can prove to the SSA that your impairment is not caused by another medical condition. This is especially important when other potential culprits for your cognitive symptoms are treatable. For example, vitamin B-12 deficiency can result in severe memory impairment as well as other symptoms. Ruling out the presence of this issue can help substantiate your claim for disability based on a clinical cognitive impairment.

 

  • Neuropsychological Tests – these types of tests can clinically document your mental function and, when conducted as a series of tests over a period of time, can also document decline in your cognitive function. These types of tests cannot capture an image of the location of a brain injury or other organic cognitive disease. They can however prove involvement of certain areas of the brain in your cognitive impairment.

The understanding of which parts of the brain control particular abilities, like language, memory, and visual processing, means decline in specific cognitive abilities point to an organic cause in the corresponding area of the brain responsible for controlling those abilities. In other words, if your language skills are impaired, then an organic issue with your brain’s language center is likely to exist. Neuropsychological test results, when combined with other medical documentation, can significantly improve your ability to prove your disability to the SSA.

Article by Ram Meyyappan

www.disability-benefits-help.org

 

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Don’t Talk About “Killing Time”

by Linda W. Arms

Since my brain injury I have become rather sensitive to healthy people complaining about being bored, not knowing what to do and are just “killing time”.      There are so many of us who have had an illness or injury where our options of doing anything are severely limited.   We struggle to get better.   We struggle to do the things we did before.   We struggle to do things like other people.     We are happy when we can do a simple thing without too many problems, even stirring a bowl of instant mashed potatoes!        There are people living with SEVERE handicaps and illnesses who appreciate the moments they are given and find joy in little things.    Killing time cannot be in your vocabulary whether you are healthy or struggling with an illness or injury.

I am fortunate in that my brain injury was not as devastating as those of some other people I have met.   It has also been over 7 years since my accident during which I worked hard to get better.  I tried doing things I did before and continued to do many of them even though it was very difficult.   I keep looking for new goals to increase my level of improvement.    I want to live life.   I want colorful, rich experiences.   In my journey back from the despairing first years after my injury, I feel I have reached the mainland of living where I can participate more fully.   I don’t want to kill time and I absolutely hate it when I hear other people who say that.   How sad!   Just think of the poor victims of the recent bombing in Boston or the shooting at the Aurora movie theater.   They lost their lives.   Their time is “killed”.    I’m sure they would like to have had the opportunity to trade places with some of the living that are “just killing time”.

A couple of summers ago I participated in a week-long camp for people with brain injuries.   I was a volunteer acting as a buddy to a camper who had a much worse brain injury than I did.   My buddy was injured decades ago at around the age of 19.   He was in a serious car accident that occurred because something in the car malfunctioned.   He was in a coma for several months.   Today he lives with a caretaker but he participates in life by going to camps and has other activities to stimulate him.   He has terrible memory problems and many other cognitive problems.   BUT HE LIVES LIFE with a smile.    He is not bored.   He does everything he can do with the cognitive capacity that he has.

Another camper I met who was truly an inspiration was another young man who received his brain injury when he was a toddler.   He was in a coma for 2 years.   Thirty-some years later, he is in a wheel chair, he cannot speak, his motor skills are very, very poor.   He has to be fed or food cut up for him.  He is always dependent on someone for everything.   When I first heard about him coming to the camp and then actually met him, I thought, oh my God!   How do you interact with someone who is so severely handicapped.   I felt so bad for him.   But you know what; he had so much joy in his beautiful eyes and in his face when he participated in all the camp activities.   He and I connected in the last couple days of the camp and I thought he was truly an inspiration to living a full life given whatever limitation life has given you.

So my point is – no matter where you are at with your brain injury – keep going.   Live life, enjoy life, try new things and don’t just sit around “killing time”.   Be happy you’re alive.   Be happy you have options in living a fulfilling life and finding joy even if you have limitations.

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Frightened by My Own Shadow – A Reminder from My Injured Brain

by Linda W. Arms

One evening recently I was walking through my house and was frightened by my own shadow.    It was a big reminder of my earlier years after my brain injury when I was often frightened by things.    Often I think I could not process things quickly enough to understand what it was I was seeing.    Part of it also was that I was often hyper-vigilant as a result of PTSD (post-traumatic stress syndrome).    Whatever the cause, these responses of fear are a bit unnerving and zap some energy from my brain.   It even affects my physical energy for a few moments; there is a wave of physical weakness.

In the last weeks I’ve had many things on my mind and I am less aware of my surroundings.   A few days ago, I walked around the back of my house and saw the reflection from the water in a tiny pond that’s been there for the last 20 years.   When I first saw the reflection I was frightened because I didn’t know what it was.   It didn’t fit in with the rest of what I saw like grass, trees, and plants.   I don’t think it was a PTSD thing this time.    I think my brain could not process the visual input fast enough to tell me “it’s OK, it’s just light reflecting on the water”.

How many of you have had these experiences after your brain injury?   I remember some of my rather strange reactions that now I can even laugh about.    A couple of years after my accident, I moved my car out of the garage and parked it in the driveway.   I wanted to sweep the garage.    After sweeping for a few minutes, I looked up and saw a car in the driveway.   It frightened me because I thought “who is parking there, what do they want?”    A few moments later I realized it was my car that I had moved out there less than 10 minutes ago.

Another time I was walking through a home goods store and I suddenly saw something that really scared me and I even made some sound.   Again, a few moments later, I recognized that it was steam coming from a room humidifier that was on display.    It sounds crazy and I felt embarrassed by my reaction since there were other people around.    The incident caused me to have more difficulties getting through the store.   The scare zapped that fragile brain energy.

I’m not sure what causes these responses; only the brain fairy knows for sure.    I think in the earlier years, PTSD played a role in my moments of being frightened by something.    Today I think it’s mostly that my brain still can’t attend to too many things at once.      If my brain is busy thinking about a problem then it can’t also be processing a lot of visual input or other things it should be doing.   I have to say I’m rather disappointed that I have had this response so frequently in the last weeks but I realize it will get better.    It makes me realize I have to be extra careful doing things that require a lot of attention.   I have to remind myself to stop thinking about the problems, put them aside, and focus on what I have to do at the moment.

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

by Linda W. Arms

For many of us with an injured brain, communicating requires some extra care and attention.    We want to easily understand what is said to us without it requiring a lot more brain energy and frustration.   When we were like everyone else, comprehending what is said was so much easier and we often didn’t give it a second thought.

As my previous two posts on this topic mentioned, there is SO MUCH happening that you don’t think about.   The brain that is receiving the words/sentences is very busy as it processes all the pieces that make up the spoken communication.    At the same time, there are many things happening around us that our just part of the environment we happen to be in such as a restaurant or in an office.

Many things add to the complexity of the communication which results in more work for the injured brain to sort through and get to what is actually being communicated.    Here are a few more things that get in our way to easily comprehend what is being said to us:

  1. Distractions – there are always other things happening that distract us from comprehending the words coming at us.   Things like TV’s or radios in the background, and other people having conversations requires those of us with an injured brain to work extra hard in filtering out those other things.    It is also extra work to understand someone who is busy doing something else while they are speaking to us. Our brain is trying to focus on the words coming at us but at the same time we have to filter out the other activities the person is involved in.    I’ve had a hard time focusing on a person’s words when they use a lot of hand motions as they speak.   Even excessive facial expressions will interfere in my abilities to focus on what is said.
  2. Sarcasm, innuendo, and those other added complexities of communication – these are those things that require the listener to “read between the lines” of what is said.   We have to analyze the implications of what is said not just understand the words.    If we have an injured brain, we often just don’t get it.   We tend to take things very literally.   I’ve often felt left out when others laughed or reacted a certain way to something that was said because I couldn’t understand the innuendo or other twist on words.
  3. Words that sound like other words – an injured brain does not go down too many different paths in figuring out which word was really intended.    When my brain was far less nimble, someone said something to me about “lox on the window”.   Actually what they said was “locks on the window”.   For some reason, I initially comprehended lox (the fish) – on the window.   You can imagine my confusion which resulted in me losing the rest of what was said until I could figure out that they really didn’t mean having fish on the window.

Although comprehending what others are saying to us is more challenging for many of us after a brain injury, we have to remember that those “normal” people are just speaking like they always did and like we always did.   They can help by paying more attention to how they are speaking to us and what is going on around you.   We, with the injured brain, need to keep challenging ourselves to help improve our ability to comprehend.    We can’t isolate ourselves.   We can’t expect our loved ones, friends or caregivers to turn into robotic style speakers.    It does get easier.    Now after 7 years I actually understand things much more easily and I actually get most of the sarcasm, innuendo and other things.    Now I can look back and actually laugh at how I reacted (or didn’t react) to things that were said to me.

See my earlier posts with tips on communicating with those of us with a brain injury:

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

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

 

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