Chronic pain isn’t just constant pain, though that would be more than enough for anyone to handle. The truth is that chronic pain always brings friends. These added challenges are obvious, but rarely taken into consideration by “healthy” people. Remembering that like all bullies, chronic pain travels with a gang can help to better understand the life of someone in chronic pain.
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.
People with traumatic brain injury (TBI) commonly report problems with balance. Between 30% and 65% of people with TBI suffer from dizziness and disequilibrium (lack of balance while sitting or standing) at some point in their recovery. Dizziness includes symptoms such as lightheadedness, vertigo (the sensation that you or your surroundings are moving), and imbalance.How bad your balance problem is depends on many factors:How serious your brain injury is.Where in your brain you were injured.Other injuries you had along with your brain injury. For example, in a motor vehicle crash, you could suffer a TBI, cervical spine injury, and rib and leg fractures. All of these injuries will affect your ability to maintain your balance.Some medications used to manage the medical issues connected with the traumatic event or acciden
When the brain’s primary “learning center” is damaged, complex new neural circuits arise to compensate for the lost function, say life scientists from UCLA and Australia who have pinpointed the regions of the brain involved in creating those alternate pathways — often far from the damaged site. The research, conducted by UCLA’s Michael Fanselow and Moriel Zelikowsky in collaboration with Bryce Vissel, a group leader of the neuroscience research program at Sydney’s Garvan Institute of Medical Research, appears this week in the early online edition of the journal Proceedings of the National Academy of Sciences. The researchers found that parts of the prefrontal cortex take over when the hippocampus, the brain’s key center of learning and memory formation, is disabled. Their breakthrough discovery, the first demonstration of such neural-circuit plasticity, could potentially help scientists develop new treatments for Alzheimer’s disease, stroke and other conditions involving damage to the brain. For the study, Fanselow and Zelikowsky conducted laboratory experiments with rats showing that the rodents were able to learn new tasks even after damage to the hippocampus. While the rats needed more training than they would have normally, they nonetheless learned from their experiences — a surprising finding.
ST. HELENA — Glancing into the rearview mirror, Peggy O’Kelly, owner of the St. Helena Olive Oil Co., saw a car behind her but thought little of it. The traffic ahead had stopped on Highway 29, a normal event. O’Kelly had noticed it and slowed to stop, but the driver behind her didn’t. When the vehicle crashed into hers, it was traveling at 45 mph, totaling her car and upending her life.When she awoke in the hospital doctors told her the external scratches and bruises would heal, but what they diagnosed as a minor concussion at the time still remains as a haunting reminder of the traumatic event.“After the accident doctors told me that I’d be fine with rest,” she said. “So I went home. I was busy with my business and was in the middle of negotiating a deal with investors to expand. But within a few days I knew something was really wrong. I just couldn’t think straight and I often felt emotional and unable to focus. Then one day I was driving with my daughters, and they said, ‘Mom, there’s something wrong with you, you’re not making any sense.’ That’s when I told myself, ‘I don’t care what these doctors are saying, there is something really, really wrong with me.’”After repeated visits, however, O’Kelly’s doctors assured her that the effects of the concussion would not last much longer and that she’d soon be back to normal. She waited and tried to carry on.Yet within a few months of the accident O’Kelly’s entire life had changed: She was forced to relinquish her downtown store in St. Helena and part with her longtime employees, and she was unable to complete her plans to expand the business, forgoing what had been a nearly completed investment deal. Bright light and even a few minutes of concentration had the potential to result in migraine-type headaches and intense fatigue. She remained undiagnosed and concerned.“With a brain injury it’s not like a broken bone,” said O’Kelly. “There’s no outward sign of the condition and so people just see you and think, ‘Well, you look fine, so things are OK.’ But they’re not. Not at all.”