After #concussion and #TBI – WHY must so many suffer?

Note the village in the distance, far,far below.
Note the village in the distance… far, far below.

There’s a reason I used a picture of Neuschwanstein on my post yesterday about “Castle Munchausen”.

I’ve got plenty more to say about this subject – and I have moved the post to my TBI research site here: https://tbiresearchriffs.wordpress.com/2016/02/16/after-concussion-and-tbi-why-must-so-many-suffer/

I hope you’ll join me there, for discussions of research on brain injury recovery and rehabilitation.

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Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

3 thoughts on “After #concussion and #TBI – WHY must so many suffer?”

  1. I think the situation is a deeper than this.

    1. Doctors only do 2 things – the give meds or they perform surgery. Well actually there is a 3rd thing – they refer people. There are no meds specifically for brain injury – and surgery is only meaningful in certain cases. They can refer you to an outpatient program but that is often full time. Or they can refer you to specialists who don’t know about BI.
    2. Traditionally brain injury meant severe brain injury – so it follows the medical model – but as it turns out the medical model doesn’t serve a long term condition such as brain injury. The infrastructure for long term needs doesn’t really exist – and because people with brain injury are often seen as permanently disabled and not contributors there is no economic incentive to put programs into place. It sort of a catch-22.
    3. People with brain injury often require a team of docs who can cooridinate services and learn from each other but bhe medical insurance system isn’t designed to support that kind of approach – and even under universal health care it won’t. Teams DO exist in rehab centers but that is for early on post injury and not so much over the long term. The team can include occupational therapists, speech language therapists, physical therapists, neuropsychs, and others. There are also sub-specialists such a neuro optometry rehabilitation specialists – but these are rare and often not covered by insurance programs. So for example if you have balance issues you may need extensive physical therapy OR you may need vision rehab or you could take a drug such a meclizine – anyone of these may or may not work for you. Th
    4. Docs aren’t trained in brain injury – in part because it is very difficult to know what to tell them. Even neurologist don’t know that much because there is nothing that they can do unless you have a brain bleed or some symptom which they can treat (seizures).
    5. Brain injury often impacts other systems but its impossible to know if it is the root cause – is a person’s sleep difficulty due to brain injury, bad habits, or anxiety? Is depression due to brain injury or some other biological mechanism. Would that change the treatment? Most people with BI experience depression – but it that due to the injury or the challenges in society and the struggles? We are only beginning now to get a sense of how BI can impact other systems – but still have no insight into what and how to help.
    6. We don’t know a lot. Brain injury is so individual so most studies are inconclusive.
    7. Despite the prevalence relatively little funding has gone to BI research and usually a handful of big players get the fund.
    8. The brain injury community has not yet begun to work cohesively together to push for changes in funding or to gain recognition. It continues to be stigmatized and secretive.

    Much of what people can do is pretty basic – eat healthy (no sugar, low carb), get aerobic exercise daily, stretch daily, get enough sleep (or sleep time), reduce stress, engage socially as best you can (this may require pushing yourself a bit but its important), find hobbies which are enjoyable and offer a different way of thinking than usual job (woodcarving, photography, knitting, cooking, birding, singing), keep intellectually engaged (book clubs, classes), make sure you have fun time, laugh, meditate daily, teach yourself to recognize negative thoughts and redirect them, take Omega-3’s (other supplements may be useful but there is good evidence that omega-3’s are important), volunteer (giving to others and getting away from ones internal thoughts can be helpful), savor beauty such as art, gardens, nature. Avoid violent movies, technology games, too much television. Of course all that is easier to say than do so most important don’t beat yourself up about things. It’s a process.

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  2. Great info — Especially the part about stress because stress triggers the limbic system fight or flight response! Once the limbic system takes over it makes everything harder and more complicated.

    Liked by 1 person

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