brain injury supportTag Archives

Holiday Survival Tips for People Living with Brain Injury

by Linda W. Arms

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

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

Pace yourself – don’t commit to more than you can successfully handle. Don’t overdo the shopping, the cleaning, the cooking or other activities. Give yourself a quiet day before going to that party or dinner. Take a nap, or just lay down and rest. Do everything in moderation.
Say “No” – sometimes it’s better to turn down large family get-togethers because of all the challenges of interacting with people, the noise, and making your way around all the people. And then, of course, we have to remember that when we overdo it one day we have to pay for it the next.
Get organized in advance – Write things down to help you remember what you need to do. Maybe add when you need to do them by. Why burden your brain by trying to keep it all in your head?
Prioritize – only do what is important. There are probably things to do that you can put aside until after the holidays.
Ask for help – with the shopping, the cooking, the cleaning, or whatever else it is.
Keep things simple – simplify the decorations, the gift giving, the meals and everything else that is part of the holiday season. Find ways to enjoy the holidays with quieter moments. The added decorations and lights can add to our fatigue because they are visually stimulating which the brain has to process and sometimes not very well. Many of us have visual processing problems so all this added visual stimulation wears on us.
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.
Determine how to get where you have to go before you leave – I like doing this the day before so I can study the Google map and try to think about it for a while before I go out on the road. I even do a “street view” in Google Maps so I can be familiar with the area I’m travelling to. Better yet, have someone else drive.
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.
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.
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.
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.
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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The Paradox of Adaptation: Navigating a New Normal After Brain Injury Recovery

by Linda W. Arms, Nov. 14, 2023

I’m sure all of you have done a lot of thinking about how your brain injury has affected your life. For some of us, the impact has been a devastating change to who we are. While others have experienced smaller changes, especially after many years of recovery. We start living a new normal but what is that really? Is it a good thing or a bad thing?

It’s all a very peculiar thing, this journey of recovery after a brain injury. At first, every small victory feels like a monumental triumph, a step closer to reclaiming the life you once knew. Yet, as you gradually approach a semblance of normalcy, a realization dawns upon you – you’ve adapted your life in countless ways to accommodate the ever-present effects of your brain injury.

I’ve reached a point in my recovery where, on the surface, it seems like I’ve reclaimed my old life. I’m content with where I am, relishing the sense of familiarity that comes with routines and a semblance of normalcy. I’m engaging in social activities, hiking, traveling and other things I did before the injury. On the outside, things seem almost unchanged. But beneath the surface lies a subtle yet profound truth – my life has been crafted and adapted to accommodate the lingering impact of my brain injury. For many activities, I spend a lot of time meticulously planning so I will be more successful or more able to enjoy an activity. There are other things I just don’t do anymore.

Gone are the days of effortlessly entertaining a roomful of people or enjoying myself at a live music event. No longer do I find myself navigating bustling, noisy environments with the ease I once did. Activities that were once part of my life, such as skiing or cycling, now feel like distant dreams, shrouded in the worry of potential risks and setbacks. Even the simple act of spending too much time in an overstimulating environment can trigger consequences, leaving me having to work harder to concentrate or process complex information.

It’s a paradox – while I may have regained a sense of normalcy, it’s not the same normalcy I once knew. I’ve had to reshape my life, recalibrate my expectations, and learn to embrace a new set of limitations. But is this adaptation a sign of progress or a subtle acceptance of defeat?

I’ve pondered this question a lot lately, with the conflicting emotions that accompany this newfound understanding. On one hand, adaptation represents resilience when faced with adversity. It’s a reflection of the unwavering spirit that refuses to be defined by limitations, finding solace and contentment in the small victories of everyday life.

Yet, on the other hand, it’s an acknowledgement of the sacrifices made along the way. It’s an acknowledgment that the life I once envisioned is no longer within reach, that certain activities and experiences are forever relegated to only memories. It’s a reminder of the fragility of human experience, the delicate balance between acceptance and the unyielding pursuit of a life that once was.

So, is it good or bad? Perhaps the answer lies in the acceptance that it’s neither. It’s a nuanced, complex interplay of resilience and adaptation, a testament to the extraordinary ability of the human spirit to forge a new path even when the old one seems forever lost. It’s a reminder that in the face of adversity, the victories often lie in the ability to redefine our understanding of normalcy, finding solace in the beauty of a life that has been molded and shaped by the trials we’ve endured.

It’s okay that things aren’t the same as they used to be. I’ve learned to find joy in the small things, and in the activities of my life that go well. I greatly appreciate the progress I’ve made and my ability to do things I thought I could never do again. I am grateful for this. Yes, I acknowledge my life does not include some things I used to do and that’s OK. I have more time to devote to things I can do and have found some new interests as well.

So, if you’re going through something similar, just know that you’re not alone. It’s okay to adapt and plan. It’s okay to take things slowly. What matters most is finding happiness in the little victories and in the journey of making the best of what life throws at us.

brain aneurysm, brain injury, brain injury inspiration, brain injury support, brain tumor, life after brain injury, living with brain injury, stroke, stroke survivor

A Brain Injury Often Damages Our Vision System

by Linda W. Arms

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

Damage to our vision system cause problems such as:

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

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

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

Neuro-Optometric Rehabilitation Association – Health Care Locator

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

Click on image to view an enlarged image:

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

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

brain-605603_1920

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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

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:

Pace yourself – don’t commit to more than you can successfully handle. Don’t overdo the shopping, the cleaning, the cooking or other activities. Give yourself a quiet day before going to that party or dinner. Take a nap, or just lay down and rest. Do everything in moderation.
Say “No” – sometimes it’s better to turn down large family get-togethers because of all the challenges of interacting with people, the noise, and making your way around all the people. And then, of course, we have to remember that when we overdo it one day we have to pay for it the next.
Get organized in advance – Write things down to help you remember what you need to do. Maybe add when you need to do them by. Why burden your brain by trying to keep it all in your head?
Prioritize – only do what is important. There are probably things to do that you can put aside until after the holidays.
Ask for help – with the shopping, the cooking, the cleaning, or whatever else it is.
Keep things simple – simplify the decorations, the gift giving, the meals and everything else that is part of the holiday season. Find ways to enjoy the holidays with quieter moments. The added decorations and lights can add to our fatigue because they are visually stimulating which the brain has to process and sometimes not very well. Many of us have visual processing problems so all this added visual stimulation wears on us.
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.
Determine how to get where you have to go before you leave – I like doing this the day before so I can study the Google map and try to think about it for a while before I go out on the road. I even do a “street view” in Google Maps so I can be familiar with the area I’m travelling to. Better yet, have someone else drive.
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.
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.
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.
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.
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

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12 Tips for Getting through the Holidays with an Injured Brain

by Linda W. Arms

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

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.
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?
Prioritize – only do what is important. There are probably things to do that you can put aside until after the holidays.
Ask for help – with the shopping, the cooking, the cleaning or whatever else it is.
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.
Eat properly throughout the day to nourish your brain so it can do a better job for you. Drink recommended amounts of water.
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.
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.
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.
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.
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.
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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Linda Arms

November 4, 2014

Life with TBI, My Story

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abi, brain aneurysm, Brain fog, brain injury, brain injury inspiration, brain injury support, brain tumor, cognitive, cognitive difficulties, cognitive overload, cognitively challenged, concussion, head injury, life after brain injury, living with brain injury, sensations after brain injury, stroke, TBI, visual problems after brain injury

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.

What does a brain injury feel like_

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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.

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.
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.
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.
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.
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.
Make your phone call from a quiet location that is free of distractions.
If you can, make notes during your conversation to keep you on track with what you are learning and what you need to ask.
If the person is speaking too quickly for you, ask them to please slow down.
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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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

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

Click on image to view an enlarged image:

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

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.

Added 10/5/18:

It’s been a few years since I originally wrote this and I have improved even more. Friendships and relationships are still different in that I am choosy with who I spend time with since I still have some limitations and issues. Some people just use up a lot of energy, and some activities or environments use up a lot a energy. So now I find that for some people I spend time with, I choose our activities carefully so there isn’t a double-whammy on my energy reserves. I also avoid scheduling my time where I have 2 energy draining events on consecutive days. I want to enjoy myself but I don’t want total exhaustion at the end of the day that carries into the next day. I’ve met some great new friends in the last couple years and enjoy their company so I continue to make progress in re-connecting and enjoying my time with other people.

“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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Updated October 6, 2018

Published January 29, 2014

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More Is Not Better

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

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

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Taking Back Control After a Brain Injury

by Linda W. Arms – March 2013

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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Why is Eating So Much Work?

by Linda W. Arms, Feb. 7, 2013

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

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

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

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

pexels-photo

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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:

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).
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.
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.