Living with Brain Injury

Resources & Inspiration for Life with Brain Injury

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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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September 15, 2013

Caution! Caution! Brain Injured Drivers!

by Linda W. Arms

I just drove behind a car with the sign “Caution! Caution! Student Driver”. It reminded me of when I started driving after my brain injury and how slowly and cautiously I would drive, just like the student driver I was following. I expect many of you have been in this same circumstance after your brain injury.

There have been a lot of us out there on the road. Does that make you comfortable? Driving is a challenging activity for many people after a brain injury. In fact, many of us were not to drive until some time had passed and we were functioning better. What about the people who haven’t been getting treatment after their “mild” brain injury but are dealing with cognitive challenges while not really aware of their impairments or are just “dealing” with it?

No one had to tell me not to drive. It was very obvious to me that I had a severe problem. My reaction time was slow. I had a number of visual disturbances. I wasn’t coordinated. It was hard for me to focus. I couldn’t remember my way around. Everything was a distraction. I also had problems with PTSD so any loud sound, sudden movement, or something unexpected left me shaking, in tears and made me want to shrink into a dark hole. Obviously, I was better off not being behind the wheel. Usually, if I had to drive for more than 20 minutes, my eyes would water constantly, something that happened when I was fatigued.

When I started driving again I sometimes had a weird sensation that I was nothing but a giant eyeball looking intensely at things before me. I know my hands were gripping the wheel and my jaw clenched because my teeth would hurt afterwards. All my energy and focus was on the act of driving. I’m glad those days are behind me. I drove as little as possible back then because it took too much of my limited energy.

After a brain injury, many activities that were part of our everyday life are very difficult or impossible. Driving is one of those things. It is extremely important to know when you are not capable of driving. Ask your doctors, your family members, and others who know you well if they aren’t the first to tell you not to drive. Be sure to ask yourself. I knew many times in some of the earlier years that I should not be on the road. There were just bad days were the brain injury symptoms were especially bad.

Since my brain injury I’ve often thought about other people who get hit on the head or have some other event that causes a brain injury. In the first couple hours or so, you might not have too many symptoms other than some pain or other minor problem. What happens when these recently injured people get behind the wheel for a long drive, or the pilot who goes into the cockpit and starts his flight; or the engineer getting into the train to travel cross county? What happens when the effects of the injury set in? Makes me want to ask the captain of the plane if he was hit on the head recently! We just don’t make a big enough deal of it when our head is injured!

So be safe. Think about how you are feeling before you get behind the wheel. Are you rested? Can you focus? Does your vision feel off? You may just be having an off day and you can drive tomorrow. You can also ask for a ride.

Here are some links to useful resources about Driving with a Brain Injury:

Driving after Brain Injury: Issues, Obstacles, and Possibilities from Brain Injury Association of America

Driving After Traumatic Brain Injury from BrainLine.org

Driving After Brain Injury from Minnesota Brain Injury Alliance

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September 3, 2013

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How to Prove Eligibility for Disability Benefits with a Cognitive Impairment

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

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

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

Types of Cognitive Disorders that may qualify for SSD Benefits

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

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

Appropriate Medical Documentation for Proving your Cognitive Disorder

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

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

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

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

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

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

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

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

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

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

Article by Ram Meyyappan

www.disability-benefits-help.org

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Don’t Talk About “Killing Time”

by Linda W. Arms

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

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

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

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

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

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

by Linda W. Arms

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

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

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

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

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

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

by Linda W. Arms

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

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

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

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

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

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

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

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

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The Brain Fairy is Always Lurking

by Linda W. Arms

After a brain injury, every day brings constant reminders that our brain is not working well. For many of us, everything becomes a challenge. Every movement we make, speaking, seeing, reading, counting, driving, cooking, cleaning, walking, hearing, thinking and so much more becomes difficult. Nothing feels normal. With these challenges, we become even more fatigued and less able to do the things we are trying to do. It becomes a vicious cycle that we cannot move out of. Slowly as we get better, we start experiencing a “new normal”.

I think our “new normal” is a combination of us forgetting how it used to be, and that we have actually gotten better. We also adapt by changing things around us and how we do things. We stop doing certain things because it just isn’t possible or isn’t that important for us to spend the energy on. We become much more functional and after a while we don’t think about our brain injury every single day. Sometimes it takes years to get to this point.

Many of us don’t want our brain injury to define us so it is important not to constantly think of ourselves as “damaged” or that we can’t do something. Sometimes we have to redefine who we are and what our life is to be. Maybe we can’t do that job we had before. Maybe we can’t climb mountains. But there are other new and different things we can do.

Living with our “new normal” is fine and works most of the time. Sometimes, however, the brain fairy comes back for a visit. The brain fairy that causes all that trouble but also heals things in our heads is always lurking in the background. Sometimes that visit brings back many symptoms we thought we’ve overcome. A frightening experience like two large dogs barking, running and jumping at you causes you to have that sense of visual discombobulation or you feel unbalanced; your mind goes blank and the fog returns or something else just isn’t feeling normal again.

Sometimes, the brain fairy returns for a longer visit such as when you are faced with big life disturbances such as family problems, money problems, illness or other things that weigh heavily on you. The stress, the emotions, and the mental work required to deal with these things is more than your injured brain can deal with. Symptoms return, fatigue sets in, everything becomes much more difficult. It is a time to step back and take care of yourself. It is time to ask for help. Remember the early months or years after your brain injury when you did nothing much other than try to heal. You rested more, people helped you more, you did less, you put less things on your “to do” list, you didn’t do some things you used to do.

For whatever reason the brain fairy returns to you, remember it will pass. Sometimes it is a short visit. Sometimes you don’t know when it will end. But remember that eventually it will get better again. Pace yourself. Be patient and good to yourself in the meantime.

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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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February 22, 2013

Getting Things Done with a Brain Injury

by Linda W. Arms

I do things in a more linear way these days. I can successfully manage one thing at a time. It is because I have a brain injury that I can no longer multi-task in the ways I did before my injury. Since my injury, my capabilities have improved tremendously but I am still far from where I used to be where I juggled multiple information technology projects; managed a group of 16 or more that was responsible for several aspects of technology in a large organization; taught classes after work; and managed all of life’s other aspects at the same time. I could easily jump from one topic to another and then back again. Those days are gone.

These days I can recognize several things that need to be taken care of, like a birthday coming up, having someone over for dinner, taking care of a personal business matter and a lot of other small matters. The problem is that I can’t work with a multiple of these things at the same time without difficulty and feeling overwhelmed.

What do I do? I look at my list of “to-do’s” and decide which needs my attention first. It might be just a small piece like “I have to order this book so it is here for my husband’s birthday”. I take care of ordering it and “put away” the other birthday tasks for a later date and not even think about it. Then I focus on accomplishing just that one other thing that I’ve identified as being the priority. In this way, I don’t have that feeling of overwhelm so I can give all my brain energy to one topic. I am more successful when I focus on one thing until I complete it because I don’t have to re-think things. In my opinion re-thinking takes up a lot of cognitive energy.

I also do not place a lot on my “to-do” list because I know I can’t be successful. I identify what is most important. There are things I just don’t do – they are no longer important in my life. I ask others for help. I remove distractions from around me so I can focus on what it is I am doing. I take “brain time-outs” sometimes for a whole day if I overdid it for a few days. Once you use up a lot of your cognitive energy, it is almost impossible to recover if you keep going and doing whatever used it up. You have to rest.

This blog is something on my “to-do” list these days but honestly it is low priority. I enjoy it and really love hearing from many of you but sometimes I have to put it aside like I have for the last week because I have to tend to other things that have become a priority. I do realize, however, that I can do more as each year goes by. My daily planner is essential and keeps track of things for my brain. What tips do you have for those of us who have problems multi-tasking or getting easily overwhelmed by just a short list of things to do?

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February 16, 2013

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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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February 7, 2013

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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February 4, 2013

abi, brain aneurysm, Brain fog, brain injury, brain injury support, brain tumor, cognitive difficulties, cognitive overload, cognitively challenged, communicating after brain injury, concussion, life after brain injury, living with brain injury, socializing after brain injury, stroke, TBI

The Brain Fairy At Work

by Linda W. Arms

After a brain injury there are many strange sensations in our head and body. For me, the sensations began a few hours after my injury and have slowly decreased in intensity and frequency over the last years. Sometimes, lying awake at night, I would notice these and be afraid because I felt that no one really knew what was going on up there in my brain. Science still refers to the brain as the “last frontier”. I felt I was in a strange, mystifying state where that “brain fairy” was doing its work that others did not understand.

I expect everyone with a brain injury has different sensations. I’ve noticed from reading others’ experiences there seem to be some similarities. How many of you felt the same things I did?

Flip-flops or butterflies in my head – it actually felt like there was a movement up there, sort of like waves, very strange. It was not pleasant. Sometimes very intense. I couldn’t do much of anything when this was going on. The first hours after I got up in the morning were especially bad. Sometimes I would just sit in a comfortable chair with my head back and let the “brain fairy” do her dance. I could not stop it. Nothing would stop it.
Bursts of light – during the many hours each day where I would be sleeping – before falling asleep or waking, there would be little bursts of light when my eyes were closed. I’m not really sure if I saw these with my eyes or if it was just a sensation in my brain. Again, very strange, very mysterious. Almost like shooting stars.
Pains in my head – obviously my head hurt from the physical trauma but there were odd shots of pain in different places in my head. Very quick.
Tingling, prickling and numbness – this was a rather obnoxious sensation I had in different parts of my body. I would feel it in my face, my head, my hands and feet.
Slideshow at super speed – this is strange, I know. As I woke, with my eyes still closed, I would see a bunch of unrelated pictures that would speed through my head. It was like someone was running a slideshow in my brain but very fast. I could not really focus on the picture but I could tell it was a person, or a scene or something. I mentioned this to many of my medical providers. Finally, one doctor said it was something called hypnagogic hallucinations.
Creepy crawlies – when I was very tired, usually in the evening, my entire being felt totally discombobulated, everything throughout my body felt unsynchronized. It was a physical and mental sensation. It was a disturbing sensation that was made worse by sounds and light. There would be a throbbing in different parts of my body that was not in the same rhythm as the throbbing in another part of my body at the same time. I wanted to curl up into a tight little ball and be thrown down a dark hole were nothing could disturb me.

Thank goodness these things have faded. They still come back sometimes but not to the degree they where in the early years. Does any of this sound familiar to you?

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February 1, 2013

abi, brain aneurysm, brain injury, brain tumor, caregiver, cognitive, concussion, medical provider, sensations after brain injury, stroke, TBI

K.I.S.S. (Keep It Simple Sweetie) – Part 2

by Linda W. Arms

Understanding spoken communications is often difficult with an injured brain. In a conversation, there is SO MUCH happening that you don’t think about. The brain that is receiving the words/sentences is very busy as it processes all the pieces that make up the spoken communication. There is the volume, speed and clarity of the words as I mentioned in my last post. Here are a few more tips for family, friends and caregivers to help us with injured brains understand things more easily:

Don’t use a lot of complexity in your conversation – long sentences, big words, new words, acronyms add to the complexity that needs to be deciphered by our brain. An injured brain often has to strain to work through this complexity making it fatiguing and sometimes frustrating for the person trying to understand what is said.
Don’t use double negatives – I have a real problem with this. When someone says “Isn’t it true that you did not eat breakfast?” My brain gets tangled on unraveling the two NOT’s and I don’t know how to answer. This is just one example but people often speak with several negatives in a sentence which confuses the heck out of me and my brain is stumbling about trying figure it out. Fatiguing…. Frustrating….
Try to tone down the emotion – Adding a strong emotion to what is being said is another part that needs to be processed by the brain. For me, negative emotions that the speaker is conveying in their conversation is a burden for my brain even when the emotion is not directed at me. Anger or frustration in the conversation is another piece that our brains have to do something with as we are trying to understand what is being said to us. It gets in the way of easily understanding.

And there is more to say about all this… next time. Just remember, K.I.S.S. (keep it simple, sweetie) if you want the person with the injured brain to be more successful in understanding what is being said, and you don’t want to create unnecessary fatigue or frustration.

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

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January 24, 2013

abi, brain aneurysm, brain injury, brain tumor, caregiver, cognitive, cognitive difficulties, communicating after brain injury, concussion, stroke, TBI

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.

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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January 17, 2013

abi, brain aneurysm, brain injury, brain injury support, brain tumor, caregiver, carer, Caretaker, cognitive, cognitive difficulties, cognitive overload, cognitively challenged, communicating after brain injury, concussion, life after brain injury, living with brain injury, medical provider, stroke, TBI

It’s About Brain Injury, Not Politics

by Linda W. Arms

Let me start by saying this is about brain injury, not politics. My TBI occurred in early 2006 when you didn’t find much in the news about brain injury. My husband and I looked for answers to my brain injury problems from medical providers and from the Internet. During the first couple years I was appalled by what I was reading regarding our military coming back from our wars with brain injuries and just not getting the attention and care they needed. Obviously many people just didn’t “get it” when it came to brain injuries, including our government. One person stood out at that time and I thought “yeah!!!” somebody is doing something to try to help. That person was Hillary Clinton, who recently suffered a brain concussion and complications as a result. So I would like to say that we should put politics aside and kindly remember that Ms. Clinton did try to help those with TBI.

To know more, here is an excerpt from Votesmart.org that speaks to the action that Ms. Clinton took back in 2009:

“The Fiscal 2009 budget released February 5 eliminates the Traumatic Brain Injury (TBI) Program, administered by the Health Resources and Services Administration; provides only modest reductions in claims processing wait times, from 177 days to 145 to process disability claims for separating service members or veterans; and fails to guarantee funding of the VA, leaving professionals at the Department unsure of next year’s budget….

Hillary Clinton joined Senator Barbara Mikulski in writing to President Bush, calling on him to reverse his plan to eliminate the Traumatic Brain Injury Program, which has a been a crucial component of the federal government’s system of care for the million of Americans dealing with TBI, including many veterans returning from the wars in Iraq and Afghanistan. The program that was eliminated by President Bush’s budget provides grants to states to help them develop systems of care for those impacted by such injuries; these grants are essential components of our national system of care for all Americans impacted by TBI.”

Furthermore, Ms. Clinton “included a provision in the recently enacted Fiscal Year 2008 National Defense Authorization Act to mandate that the Department of Defense implement a screening protocol for Traumatic Brain Injury within 180 days. The nearly 1,000 young West Virginia citizens that join the armed forces each year, along with members of the National Guard and Airmen from the state, now receive regular health screenings to detect Traumatic Brain Injury, thanks to legislation Hillary introduced. In addition, in 2006, Senator Clinton authored provisions in the John Warner National Defense Authorization Act for Fiscal Year 2007 that increased research into ways to improve TBI care for veterans injured in Iraq and Afghanistan.”

No, this did not fix it all but at least someone was paying attention to the needs of the TBI community. So much more needs to be done to increase awareness and treatment. So I say thank you to Ms. Clinton for her efforts and I truly hope she has no long lasting effects from her concussion. I say this as a person with TBI to another person who has been affected by brain injury. It is not about politics.

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January 12, 2013

brain injury, concussion, Hillary Clinton, military veterans, TBI

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

by Linda W. Arms

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

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

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

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

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January 10, 2013

abi, brain aneurysm, Brain fog, brain injury, brain tumor, cognitive, cognitive difficulties, cognitively challenged, concussion, living with brain injury, stroke, TBI

It’s Your Choice

January 6, 2013

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

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January 6, 2013

abi, alive day, brain aneurysm, Brain fog, brain injury, brain injury inspiration, brain tumor, cognitive, cognitive difficulties, cognitively challenged, concussion, living with brain injury, stroke, TBI

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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January 3, 2013

abi, alive day, brain aneurysm, Brain fog, brain injury, brain injury inspiration, brain tumor, cognitive, cognitive difficulties, cognitively challenged, concussion, life after brain injury, stroke, TBI

Starting the New Year with Improvement in Mind – Remove Clutter

by Linda W. Arms

Even before my accident I would set news goals for myself when a new year started. I continue to do that and would like to share some ideas with you. All of us with injured brains need to make our lives as easy as possible. A big part of this is to simplify our surroundings so we don’t have so many things to look at that make our brains work harder than they need to. The more things around you, the harder it is to find what you need. Too many pieces of paper, books, knickknacks, and other stuff on your desk makes it more difficult to function. Too many things in your closet make it harder to figure out what to wear or to find what you are looking for. Start your new year by eliminating that clutter. Move things that you don’t use or hardly ever use out of the way so you don’t see it. You will be more productive at your desk if you can focus on just a very few things at a time. It will be easier to find your clothes and decide what to wear after you move things you don’t use out of your closet and drawers. Each thing around us is a piece of information our brain has to deal with. It has to process the visual input, it has to decide “is that what I want or am looking for”, it might have to decide that you have to pick something up and move it, and many other things. Don’t make it harder on your brain than you need to. By simplifying your surroundings you will reduce brain fatigue and be more successful. So get started and get things out of your way! I have to work on my space too, its gotten a little overwhelming again.

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December 30, 2012

brain injury, concussion, TBI

Being Prepared During the Holidays

by Linda W. Arms

Since we’re still in the middle of the holiday season we all 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. We also want to try to get some enjoyment out of it. Here are some tips that work for me:

Pace yourself – don’t commit to more than you can successfully handle. Give yourself a quiet day before going to that party or dinner. Take a nap or just lay down and rest.
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 or 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.

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December 26, 2012

brain injury, concussion, TBI

The Kitty Bites!

Years 1 – 3, after the accident, I rarely went to stores and barely survived the shopping experience. Years 4 – 5, shopping was less painful but I realized I couldn’t interact with the clerks or others when they spoke to me about other things. Year 6, my goal was to start saying something to the clerk and others while I was checking out or doing other shopping. Just today, in year 7, I discovered I’ve become quite assertive! I spoke up when I felt I wasn’t being treated well as a customer. I think I might have been a bit too blunt. I guess the kitty bites!

December 22, 2012

brain injury, concussion, TBI

The Year I Ran Away From Christmas

by Linda W. Arms, dated Dec. 20, 2012

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

We went to a place I used to live growing up and that I have many fond memories of. We went to Germany where Christmas is still celebrated in a much quieter style. We stayed in a small village. We bought a tiny tree about 12 inches tall with a few decorations already on it. We enjoyed some very low-key events in this village that did not allow cars on many of its streets. I could face Christmas here. I did not have to try to be the person of my adult past. I took many naps. I could not count the money to pay for things. I could not sort out many things I used to know about being there. I leaned on my family. Even with all these things in my way, it is still a wonderful memory that I have of this special time when we ran away from Christmas . Today, six years later, Christmas is still much, much simpler compared to “before the accident” but I don’t feel I have to run away. I am getting better in small doses. I hope all of you are finding yourself better than last year. Have a Merry Christmas!

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December 20, 2012

brain injury, concussion, TBI

A New Problem ???

I’ve mentioned before that noise is a problem for me. It seems there is more to just noise than I realized. I just started “trying” to listen to an audio book using my iPod earphones. I was on a plane where there were many others sounds and conversations. Even though the sound coming through the earphones was very loud, I had a very difficult time focusing on what was said. I had to close my eyes and really concentrate. After a few moments I experienced something unusual where I felt there was a back and forth sensation going on in my head. It’s the same kind of thing I feel when I try looking through binoculars. What is this? Have any of you noticed something like this? The experience created a lot of fatigue for me which often includes my eyes watering a lot as if I’m crying. It was not a great experience (but I’ll keep trying).

December 20, 2012

brain injury, concussion, TBI

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 4^th 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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November 14, 2012

abi, brain aneurysm, Brain fog, brain injury, brain tumor, cognitive, cognitive difficulties, cognitive overload, cognitively challenged, concussion, driving and brain injury, life after brain injury, living with brain injury, sensory overload, stroke, TBI, visual problems after brain injury, Visually challenging web pages