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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!

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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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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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Taking Back Control After a Brain Injury

by Linda W. Arms

A brain injury often results in us losing control of our lives. Often, because we need the help and oversight, we have to depend on others. We need help with simple, daily living activities such as getting to an appointment because we can’t drive. We need help with simple decision-making. We need help understanding what we are reading or hearing. We need the help of someone else’s brain for so much!

Our loved ones or caretakers start taking over our lives through no fault of their own. We have to lean on them for so much. They make many or all of our decisions, sometimes even for very simple matters. They answer someone’s question for us. They tell us we have to eat or have to rest or stop doing whatever it is we’re doing because they see it’s too much for us or it’s not safe to continue. We want them to do these things for us because it’s too much work or impossible to do by ourselves.

After my brain injury I felt like I instantly turned into an 85-year-old woman and a young child at the same time. I could not move fast and was unsteady. I had little strength. I needed someone to hold my hand to walk across the street, to tell me to stop what I was doing, to take a nap… I wanted someone to comprehend what was being said to me and help me respond.

As I improved, I slowly took over many things people were doing for me. I was not always successful, so I needed their help again. My capabilities were also inconsistent depending on my level of fatigue. My helpers were often standing by, watching and ready to step in. They let me try on my own. It was like being a young child who is learning new things in life. I was VERY grateful for all the help!!! Often I thought, “please, make this decision for me, it’s just too hard for me”.

In recent years, however, as I improved, I needed less and less help. It is sometimes a little difficult taking back that control over your life. Those you counted on became too used to taking over for you when you could not do something. As you improve it is often a bit challenging and even confrontational when you start taking charge of your life again. After all, you’re a big girl (or boy) now and you can do it by yourself.

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Cooking is a Cognitive Challenge

by Linda W. Arms

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

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

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

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

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

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mid section view of a woman cutting vegetables

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Why is Eating So Much Work?

by Linda W. Arms

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

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

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

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

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Shunned

by Linda W. Arms

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

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

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

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

by Linda W. Arms

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

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

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

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

Simple

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

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

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

 

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New Beginnings

by Linda W. Arms

As we begin the new year, many of us think about our lives, the year ahead and make resolutions to improve.   I think many of us with TBI have another “new beginning” each year that causes us to contemplate our lives. That time of year is different for each of us, and it is the date of our accidents that caused our TBI. It’s probably a date that brings us sadness and a little more grieving for the person we used to be, but it’s also a date to consider the progress we have made in getting better and other things in our lives that are positive.

The door on who I was closed seven years ago on January 15. Although a lot of “me” came back, I’m also very different. That difference has brought several positive traits that I am grateful for. I’m more patient and not driven to perfection. I’m much more grateful for my family and friends who stayed in touch even when I couldn’t. I’m much more forgiving of imperfections in people around me. I have much more compassion for others.   I appreciate the simple things in life, I’ve learned to stop and smell the flowers because my brain doesn’t want to be filled with all those details it was capable of handling before. I’m happy……. and sometimes frustrated.  Sometimes I get frustrated when I can’t do things like I used to but those times are becoming less each year.

I’m grateful for the progress I’ve made in the last seven years and know that I’ll see more improvement this year, even if they are small things.  I’d like to share this posting from Facebook with you as you start the new year.   I received this by accident from someone I don’t know but I related to it because of my seasons of life associated with TBI. I do not know who the creator of this is so I can not give credit but thank you to whoever you are.   Click here to view Seasons of Life – THEN CLICK ON THE ARROW IN THE LOWER LEFT OF THE PICTURE TO START THE VIDEO.  Note that there are multiple pictures in the video, it moves through the pictures slowly so some of us with brain injuries can read it.

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Brain Injury and the Vision System

by Linda W. Arms

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

Damage to our visual systems cause problems such as:

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

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

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

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

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

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

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