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Question about head injuries

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Fractal
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Question about head injuries

Postby Fractal » Sun Mar 04, 2018 11:09 am

Hello all,

I am age 44 and just found out from 23andme results that I am 4/4. This is devastating to me, though it does make sense as AD runs in my family.

When I was a teenager, I was severely injured when a drunk driver hit the car I was riding in. I had a severe TBI and was in a coma for a week. Eventually I defied the odds and recovered, though it took many years, and I am now a special education teacher.

My question is this: does anyone know how much my TBI increases my risk of AD when combined with the 4/4? Does this increase probability of outcome or age of onset or both?
Fractal, 44 and 4/4.

NF52
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Re: Question about head injuries

Postby NF52 » Sun Mar 04, 2018 12:31 pm

Hi Fractal,
First, you are proof that "if you've met one person with a history of TBI, you've met one person with a unique TBI." I spent 5 years as the coordinator of a regional center providing training, support and coordination targeted to school districts and families dealing with new, (or often newly-recognized as important) brain injuries. I got to meet wonderful families and kids from the age of infants to high school seniors. I also learned from the work of major researchers who were just beginning to focus on childhood TBI, as well as clinicians at rehab hospitals, speech pathologists, PTs, OTs, neuropsychologists and physiatrists. I especially enjoyed supporting special educators who understood that kids with TBI were different in many ways from kids with other developmental disabilities, especially teens whose sense of self was completely disrupted at a crucial age.

So kudos to you for your recovery! And for deciding to be a special education teacher--the people who make "all kids can learn" a reality.

Around the time you were injured the conventional wisdom was that "what you had one-year post injury is all you'll have". By the 1990's that was recognized as ignorance that came from only looking at people for a year or two! We now know that while recovery often is uneven and painstaking, there are no end-limits on it. And even more, we understand that while some specific injuries might be harder to overcome, the brain has an amazing ability to reorganize itself.

You'd be able to do a Google search and find "associations" between a history of TBI and incidence of dementia. I look at those as reasons to wear a helmet, but as difficult to draw conclusions from data that includes people who played pro football for 15 years (not a good idea) to people who had a concussion in first grade.

Without getting your hospital records, it would be hard to know if your "coma" was Glasgow Coma Scale score that showed you were impervious to pain and deeply unresponsive, or were somewhat aware and responsive to your environment. Same with knowing whether you were kept in a medically-induced coma to help stabilize you. Some researchers believe that the length of "coma" is less important than the length of and type of amnesia for events before and after the injury.

Bottom line: Over 95% of the students I worked with, almost all of whom had a serious TBI, returned to their prior school setting. Some dealt with physical, or emotional or learning challenges for a shorter or longer period of time. But if you are functioning as a caring, well-educated, problem-solving special ed. teacher, you have many cognitive and social reserves. One of the "founders" of this site and the writer of the Primer, is Stavia, who herself had two serious TBIs. She is currently the senior partner in a family medicine practice, and learning piano and kick-boxing in her spare time.

So don't worry; enjoy what you have achieved. You're young enough that science will figure out this sneaky ApoE 4/4 in time to make some suggestions for you on that.
4/4 and still an optimist!

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Jan
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Re: Question about head injuries

Postby Jan » Sun Mar 04, 2018 1:03 pm

Hi Fractal, welcome. I am so glad to hear you have moved so far from the injury you suffered, and applaud your successes in life. Our site Primer contains a section on TBIs, which can be found here: search.php?keywords=tbi&t=1418&sf=msgonly NF52 has eloquently addressed your question. We on this site have abundant evidence that individuals can defy 'odds' of just about anything. I wonder if you are familiar with a book by JJ Virgin called Miracle Mindset (2017)? Her 16-year old son was hit by a car and left for dead. He had very severe TBI injuries and was not expected to survive the night. He did survive, and has recovered, and the book details everything that helped him. Keep looking to the future, be fearless, expect greatness.
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Fractal
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Re: Question about head injuries

Postby Fractal » Sun Mar 04, 2018 1:24 pm

Thank you for your thoughtful reply! My memory from around the time of the accident -and years before- is impaired, but I know I spent weeks in traction for a broken femur and had many other injuries including internal and facial damage requiring reconstructive surgery. My mother told me that during the first week in ICU they didn’t think I would make it.

Cognitively, my abilities sank. I struggled with recall of even basic words, with reading, and with writing. When I returned to school the following year I was no longer in gifted classes, but had been moved to the “low” classes. I don’t remember a whole lot from this time, but I do remember what it is like to feel stupid.

So I panicked with the 4/4 results. But I find your words comforting, thank you for that.
Fractal, 44 and 4/4.

Fractal
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Re: Question about head injuries

Postby Fractal » Sun Mar 04, 2018 1:40 pm

Jan, thank you also for your thoughtful reply! I read through the links and I find the information so reassuring. I will check out the book Miracle Mindset. Sounds like something right up my alley!
Fractal, 44 and 4/4.

NF52
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Re: Question about head injuries

Postby NF52 » Sun Mar 04, 2018 1:58 pm

Fractal wrote: When I returned to school the following year I was no longer in gifted classes, but had been moved to the “low” classes. I don’t remember a whole lot from this time, but I do remember what it is like to feel stupid.


Boy, I wish I had gotten the chance to talk to your school district! A great pediatric TBI clinician and writer, Dr. Mark Ylvisaker, noted back in the 1990's that schools needed to do "dynamic assessments", of rapidly changing and highly variable abilities. Traditional assessments like IQ and achievement tests missed the most likely areas of need and misinterpreted the others. So if kids suddenly had difficulty answering questions quickly, coming up with words, or remembering isolated facts and formulas, and also were slow in writing, they often "lost" 20-30 points on an IQ test or timed tests of verbal learning. Yet when speech therapists tested them, they somehow had receptive (recognition) knowledge of high vocabulary, great syntax and grammar, and appeared to not need speech therapy. The school's answer: Don't provide special ed. consultant teacher support, resource room, speech therapy, OT and PT; put the student in a "low" class, either tracked in general education or in full-day special ed. Meanwhile, the kids like you and their families often ended up trying to explain that they needed something different.

The most common difficulties after TBI in school-age kids I saw were free (unaided by cues) recall (what is photosynthesis? what is the name of your 3rd period teacher?"); processing speed (how fast can you do 20 math problems for homework; how easily can you copy homework from the board?); working memory (how well can you take notes while listening to the teacher speak rapidly on a new topic each class); fatigue (including cognitive fatigue that made kids look out the window, have headaches and need naps); and executive functioning (monitoring of tasks, of self, use of strategies, flexible shifting of strategies, metacognition (knowing what I know, and "how" I know).

Sadly, I've talked to people who years after an injury echo your comment that "I know what it's like to feel stupid." I hope you now have turned that experience into a passion to help kids who feel "stupid" to feel empowered and optimistic: that learning problems are often "specific, temporary and external", not "personal, pervasive and permanent."

And you should offer your personal expertise to your school district's special education administrator--as a liaison to families and the CSE (in the US) for the re-entry process.

And tell your mom she's a rock star for handling those gloomy early predictions!
4/4 and still an optimist!

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Stavia
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Re: Question about head injuries

Postby Stavia » Mon Mar 05, 2018 12:21 am

Fractal, brains are plastic. They can recover. Even 4/4s like me. I was off work for years a decade ago with a nasty TBI and had to learn to walk and talk and read and do maths again. ( my second TBI, first one was a high speed car crash with skull fracture and 6 months off work.). I'm left with only small deficits when I'm tired - I stammer, drop things, get clumsy, substitute words. That's all. I rest up and recover. It's not dementia. Just a signal to rest.

You might want to look at Norman Doidges book The Brain That Changes Itself.


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floramaria
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Re: Question about head injuries

Postby floramaria » Mon Mar 05, 2018 12:46 am

Hi Fractal, I also recommend Norman Doidge's book, The Brain that Changes Itself. Very hopeful and inspiring!
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Fractal
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Re: Question about head injuries

Postby Fractal » Mon Mar 05, 2018 4:44 pm

NF52, that is exactly what my school system did: stick me in a “low” class rather than meet my needs, which were definitely “different”! Aside from an occasional stutter and some forgetfulness, I function pretty well now though.

Stavia, I read your bio on this site and you have made an impressive recovery! Head injuries are treacherous, but I know the brain is a master at healing itself. I am interested in the book you and floramaria recommend... I will look for it!

Thank you for the reassurance and feedback, and the thoughtful replies!
Fractal, 44 and 4/4.


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