Posted on 07/02/2025 3:18:06 PM PDT by AuntB
A call for Brain Injury to be Recognized, Treated, and Covered as a Chronic Health Condition
Every year, at least 2.8 million Americans sustain a traumatic brain injury. While many of these injuries are fairly mild and cause only temporary neurological impairment, there are currently more than 5 million people living with a permanent brain injury-related disability – that’s one in 60 Americans.
The chronic, long-term effects of brain injury are wide-ranging, and can include fatigue, sensitivity to noise and light, memory loss, mobility problems, chronic migraines, trouble with focus and executive functioning, depression, anxiety, and susceptibility to conditions such as Alzheimer’s disease, stroke, Parkinson’s disease, and chronic traumatic encephalopathy (CTE).
Brain injury is viewed by many in the healthcare system as well as the general public as a one-time event with effects that become stable, rather than the beginning of a process of recurring or persistent effects that continue to change. Unfortunately, the idea that brain injury can permanently change a person – their capabilities, their personality, their ability to work and socialize as they once did – is not something understood by people who have not experienced it.
There is also a lack of understanding about the long-term effects and chronic nature of brain injury, particularly among those living with invisible disabilities. But designating brain injury as a chronic condition that can require lifelong management of symptoms would go a long way toward correcting misconceptions about a condition that impacts millions of Americans.
There is a common misconception, both among the general public as well as within the greater medical community, that brain injury is a solitary, one-time event, much like a broken bone. This misconception poses problems for patients who live with chronic symptoms as a result of their brain injury and are seeking treatment for those symptoms.
“It leads to a prejudice against patients that have continued symptoms, which leads to a misinterpretation of those symptoms to being either malingering, fabricated, some sort of psychiatric disorder, or some sort of secondary process that is completely unrelated to the primary traumatic brain injury at large,” said Gregory O’Shanick, MD, President and Medical Director for the Center for Neurorehabilitation Services and the Brain Injury Association of America’s national medical director-emeritus. “That leads to misdiagnosis, mistreatment, and increased morbidity, mortality, and excess medical cost. And in some situations, leads to suicide, because patients despair and give up.”
There are a significant number of people who survive their brain injury, only to develop problems later on, explained Brent Masel, MD, BIAA’s national medical director.
“Brain injury is often a silent epidemic or invisible injury,” said Wendy Waldman, BSW, CBIST, NeuroResource Facilitator at the Indiana NeuroResource Facilitation Program. “Many people are undiagnosed or misdiagnosed, and don’t know they have a brain injury, or don’t think they have a brain injury, which makes things even more difficult.”. Snip
About 5 years ago, just before Covid, I fell. Bad osteoporosis from a hereditary bad pancreas... 85 lbs. Symptoms ( some never left.. like partial field of vision loss episodes) started returning just like immediately after the accident in 74.
I'm clumsy, can't learn anything new, can't focus eyes to drive, weak, crying or pissed off all the time it seems. Often I am attacked and humiliated because I can't get words out of my mouth.
Since the stress of losing everything in the Almeda fire, it's becoming out of control. It's very frightening. I'm often confused and traumatized and belittled. No doctor would even discuss the possibility that TBI was causing some problems. Last month I finally got a doctor who figured that out on her own. She says find a specialist.... too many miles away. But it was nice not being treated like a criminal for a change. I'm trying to get back home to find treatment, but after Biden attaching my social security checks to repay emergency catastrophy funds from Almeda, it's not looking possible. Yes I wrote them a $25,000 check but they are taking another $10,000 in interest. I can't even get the attention if the Trump administration.
TBI should be classified as a chronic condition.
Interesting...I can't write a sentence by hand but I am more creative than ever with decorating,crochet etc. Go figure!
Well good for you! God’s Blessings.
I’ve had two concussions in my life. Mid 50s now. Waiting for repercussions.
I didn’t realize until I got so many symptoms back, how much I ignored the problems all these years. One day a few months after the accident, I was driving down the main street of my town and had no idea why I was there.
It was so confusing when I was homeless after the fire in 2020.. covid..we had no motels! Driving in strange towns...
My family refuses to believe it. They say I must be faking.
WOW! Thanks for posting AuntB.
What is it you are paying back and why?
Post #1
“What is it you are paying back and why?”
After 3 years, the Biden regime decided the money was a loan...no, I got no “ due process”. I opened my bank statement to find out.
WHY? Because I am an outspoken conservative.
Go fund me and FB wouldn’t allow me a fundraiser.
Why has the tag “qanon” been inserted in the keywords on this post!?
I don’t follow that anonymous BULL$HIT.
Some ignorant, arrogant twat I assume.
I’m sorry to hear of your struggles.
Having a chronic condition of any kind can be very difficult as nobody believes you, or they blame you...
I have run across two excellent books on the brain, both by Norman Doidge. They are *The Brain that Changes Itself* and *The brain’s Way of Healing*.
He doesn’t claim that the brain can be healed, but rather gives examples of people who have learned to use other parts of their brain to compensate for what they’ve been afflicted with in a process called neuroplasticity.
Each chapter is a different case study and can basically stand alone, so it’s not necessary to read them in a particular order, although he did write *The Brain that Changes Itself* first.
I was hoping someone here might have some suggestions or advice!
This is a daunting experience in isolation. It’s been years since I saw a familiar face.
I call people like that *keyword cowards*.
They get snarky, often nasty digs in at people without posting them on the forum and risking rebuke from the mods. or anyone else for that matter.
Thank you. I have read
( getting harder every day) some of his work. My biggest problem is being stuck in the boonies and trying to get medical care. It’s hundreds of miles to anything. I’m going to have to do this on my own... just like I did 50 years ago.
Yes, other parts of the brain will compensate. My voice is badly affected... sometimes I can’t speak, sometimes only cursing comes out, but suddenly I sing beautifully!
I took up crochet and I can crochet anything without a pattern... can’t read it!! Lol
FEMA money?
“call people like that *keyword cowards*.”
Indeed. I have come out of a lot of tragedy, but this was my first experience with a
“ natural disaster “.
I didn’t expect the humiliation of it.
If I had a dollar for every cruel remark from the leftist loons I’ve fought for 40 years and the self-righteous Christians who somehow blamed me for anything they could imagine when they weren’t stealing what I had left, I’d be the richest old woman in Oregon!
“Poetic justice”
“Too bad you and your cat didn’t burn”
“This wouldn’t have happened if you were saved!”
“Have a nice evening!”(the night my community was burning....)
You freepers were/are all I have left.
I took in part of my family (7) Christmas 2021 after being by myself for sixteen years and pay 75% of the household expenses.
Have not worked since Nov 2024 with knee replacement last April.
Bkmk
Much love to you, AB.
“FEMA money?”
I thought so! Now They say it’s SBA. I was told on the last phone call that it was a FEMA grant. It was deposited in my bank that day. The woman insisted I take it because it didn’t have to be paid back. I had no paperwork for this. It was all phone. I signed nothing.
I was living out of my car. These govt bureaucrats called all the time, One after another. You couldn’t go to a library. I sat in the snow at Burger King for internet. I never signed for a $25,000 loan! I haven’t had a home loan since 1985. They have my address for everything else, but never sent a notice, just started taking $ from my social security checks... they won’t stop. I’ve tried a senator and congressman... they just dragged it out forever and made it worse and gave me no advice or help.
So over a year ago I wrote them a check marked paid in full for $25,000. They ignored it. Every check is Short. It destroyed my perfect credit. You don’t run a credit bureau without good credit and bond.
I’ll never be able to go home now.
“your situation and have no ability to help.”
I AM NOT AND HAVE NOT ASKED FOR $! I have recently turned down offers.
Why do people assume that?! It’s very hurtful.
That’s not the kind of help I need. Anything I get will just be stolen from me.
Thanks Pod. It’s so very good to see you!
Sometimes your brain will compensate. But it’s usually a slow process. I suffered a period of hypoxia related to asthma at 6 months of age. As a result I suffered impairment to my fine motor functions. I eventually compensated with most tasks by the age of 10, but my handwriting is still abysmal. Fortunately it’s not as crucial a skill as it once was. I used word processors and desktop computers during my college years. Ditto during my career.
CC
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