The brain can’t store information in its memory efficiently when it’s tired or stressed. So when you’re too tired to focus your attention, your memory is likely to suffer as well. As your brain heals, you may have more energy and be able to pay attention for longer amounts of time. This, in turn, will help your memory. But, you can also use other strategies to help you remember. Here are some ideas:Reduce stress and stay well rested. Take breaks when you need them.Know your limits. When you feel you can’t absorb any more information, take a break or have someone else write it down for you.Consider using a cell phone or PDA (personal digital assistant) to send yourself reminders, remember directions, or keep appointments.Work with a professional (such as a speech-language pathologist) to learn to organize information so it’s easier to remember.Carry a calendar or notebook to keep important information in one place.
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To those who do not completely understand and think we’re making excuses, please know that recovery can take YEARS — and may never be full and complete. Next time you’re tempted to imply that we’re making excuses, understand that most survivors will be left with a combination of these symptoms:Short-term memory lossTrouble focusing our attentionNeuro-fatigue (running out of energy)Dizziness and balance issuesCognitive deficits (processing things slower than before)Aphasia (trouble recalling or understanding words)Not being able to handle overstimulation (lots of people and noise)Anxiety about the simplest thingsDepressionChronic painIn short, we are NOT making excuses, we are simply doing the best we can with what we have been given. All of us want to get back to work, back to a meaningful life, back to the way we were before our injury. It’s a long, lonely road, which is not made easier by other people’s ignorance. Remember, compassion makes the world go around.I have a brain injury, what’s YOUR excuse?!
Feeling the weight of it all, this past week I Googled “brain injury and suicide.” No, I have no intention of cashing in my chips. Rather, I was more than a bit curious about how many others died from traumatic brain injury long after the initial injury. The numbers were staggering.
My new life these days is defined by living close to complete transparency. I share more than most ever will, knowing that my own complete disclosure will help others to feel less alone and less isolated. As my wife Sarah has shared since life forever changed in November of 2010, “the curse will become a blessing.”The process of evolving from one person to another almost completely different person is often hard to describe to those who have not lived it. But it is a process. There will be good days, and there will be tough days. On the tough days, it helps to remind myself that I have a 100% track record of success in making it through the tougher days.
This is what they had to say:1. “People need to learn to not judge you because of it. It makes it more difficult for us to keep moving on in the right direction.” — Erin Fox2. “I am still capable of doing lots of things. I have worked really, really hard to overcome my injury and although I now suffer from epilepsy and use a seizure alert dog, I am still the smart, capable, funny uncommonly kind person I’ve always been. Stop telling me I can’t and start helping me reach my next goal.”3. “Remembering things is difficult. I’m not being lazy by only working a few hours a day or needing days off during a busy time — I just need more rest to function than you do… Changes take time for me to adjust to. What works for one person doesn’t always work for me.”4. “I want nothing more than to be ‘better’ and not be judged like I’m a deadbeat for not being what I once was.”5. “The ‘new’ version of myself has very different needs than the old me. I need more rest. I need more time to form thoughts into words. I need more time to complete seemingly simple tasks. And I need my loved ones to realize and be patient with the fact that my emotions are so much harder to manage than they used to be. I still love my partner and my kids, maybe even more than ever, but I also need more solitude than I’ve ever needed before. I need compassion and cooperation. I need love and comfort. I miss the old me so so much… Raising awareness about this issue will be the first thing on my plate, once I can manage to claw my way back to some normalcy… For now, I need my sense of humor more than ever. Because it’s laugh and learn or cry and die, baby. And crying hurts the head.”6. “My injury may be invisible, but my life has been turned upside down. I will never be the same again.” 7. “Never assume a person who has difficulty communicating has nothing to say. They may have plenty to say. They just say things a little differently. Never assume their brain doesn’t work, because it does. It just may work a little differently than ours.”8. “Be patient with us as we learn to be patient with ourselves.” —9. “I need help. To plan a day. A doctors appointment. I need someone to go with me. I need help to shop, cook and clean. I need help to find my limits and rest enough, but I also need gentle support to take small walks and do gentle 2-minute yoga so my body doesn’t stop working altogether. I need friends who come by and say ‘Hi.’ I need hugs. I need to vent and help to look for any sort of silver linings so I don’t go mad. I need new hobbies that are gentle to get my mind off my problems ,and I need help to get started. I need help to help myself.” 10. “My brain takes different paths to understanding and explaining. It’s not a straight road, but one with detours.” —11. “You have no idea how much effort I have to put into all I do. Things I just did automatically prior to TBI require so much work. Everyone goes through moments in their lives which are difficult. For most there is an end in sight, a goal to work towards or for. I have no idea when my difficulties are going to lessen or even if they will. Some days having no ‘finish line’ sucks.”12. “No we’re not the same person we used to be. We’re alive. But we can create a new journey, learn old stuff and new stuff. The strength and determination it takes to learn, try, try, try again, fall down and get back up is painstaking, but worth it.”13. “I live by my systems. I have to have a schedule or I am lost. Don’t freak on me if I get clingy in a new environment. Things that are easy for you are challenging for me. Also, just because I look OK doesn’t mean anything. I have worked for years to get where I am now.”14. “As much as I wish things would go back to normal for her, this is our new normal and I’m OK with that.” —
How much is known about the level of injury the brain can recover from? Over what time period does the brain adapt to an injury?A lot is known about brain plasticity immediately after an injury. Like any other injury to the body, after an initial negative reaction to the injury, the brain goes through a massive healing process, where the brain tries to repair itself after the injury. Research tells us exactly what kinds of repair processes occur hours, days and weeks after the injury.What is not well understood is how recovery continues to occur in the long term. So, there is a lot research showing that the brain is plastic, and undergoes recovery even months after the brain damage, but what promotes such recovery and what hinders such recovery is not well understood.It is well understood that some rehabilitative training promotes brain injury and most of the current research is focused on this topic.
Strange Sensations After a Brain Injuryby Linda W. ArmsAfter 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?