this is a test:

1) to see if anyone is actually moderating this community.

2) to see if the "queue" problem is straightened out.

please respond if you know of the answser to either of these questions. thank you.

Ok, here's the link to the group I made on FB for brain injury survivors and others interested in TBIs.

https://www.facebook.com/groups/291026184299533/

So, should we make a Facebook group since LJ isnt getting the traffic it used to?

I am not really new to LiveJournal, but I am new to this type of posting. I am referring to the whole community posting thing.

Anyway my name is Paul, and yes I have a real nasty brain injury. I suppose I should tell you how I achieved my brain injury.

It's kind of a long story, but I can shorten it up for y'all.

It goes back over 10 years now. All the way back to New Year's of 95 to be exact. It was on the night of New Year's Eve 94 when my stupid ass ate 25 (yup 25) Xanax Bars on top of (get this) 17 Methadone pills.

I get asked "were you on heroin?" A lot. To my knowledge I have never shot, or snorted the shit in my life. So what was I doing taking Methadone in the first place? That is an excellent question to ask, however it is a question that I have no answer for. Other than I was an immature kid, and wanted to try a new high.

So there I am in a room that I was renting from my weed man, Oh he lived there too, so I guess I was just renting the room, along with access to a bathroom and kitchen. There were four people in the house on that faithful night.

• Me


• MY bitch


• My dealer


• His girlfriend

Arizona's Giffords vows return to Congress

she was shot by a crazy man, but because of the fact that she was a member of congress, she got the best possible care and treatment, and is, very likely, going to return to congress, despite the fact that she is now severely brain damaged.

i, on the other hand, have a 3-inch hole in my skull where they went in and took out a clot the size of an egg, but because of the fact that i had no money, and nothing more than catastrophic event insurance, i have had minimal care and treatment, and despite the fact that my injury happened 8 years ago, i still have trouble communicating, i switched dominant hands from right to left, and i had to fight for FIVE YEARS before they would give me disability - at one point, the doctor who was examining me said, flat out, that i wouldn't get disability, so i shouldn't even bother applying...

it's not fair... she is no better than me... why should she get treatment and i don't?

this country is fucked UP THE ASS and it's TIME FOR A CHANGE!! 8/

Hi, I've started a group on Face Book for the Partners of Brain Injury.  

There doesnt seem to be much support out there for families of Brain Injury and in the six months since my husband aquired his brain injury I've felt extremely isolated in all the issues I now deal with as being a wive to a much loved brain injured husband.  Unfortunately unlike some medical issues, like cancer, the support and public awearness for Brain Injury just isnt there.  I'm just one wive, but there has to be others and in numbers I think we can really help each other in this journey, especially with information and hope.

Please if you are a spouse of a Brain Injured person (we welcome men to our group) or you have a brain injury and a spouse, please let them know of our group.  There will be lost of love and support shared among memebers and I know from experience these precious types of careers could probably do with a little (a lot of) understanding TLC.

Thanks!  :)

Boffins take REMOTE CONTROL of HUMAN HAND - this is scary and interesting the same time... scary because it is a little too close to "The Matrix" for my comfort, but interesting because it could potentially teach brain injury survivors to function normally... i could learn to do calligraphy again, or learn to play the trombone as well as i could before my injury...

Sex and coffee may raise risk of brain hemorrhage

i have this old friend, the wheelsmaster... she's been a friend of mine for 30+ years, although in the past 5 to 10 years i haven't heard as much from her. she knows about my injury (which happened 7 years ago), but she's definitely got her own problems:

( rants - possible triggers )

i don't know what to do. i am not asking for advice, although i'd be glad to listen to whatever you have to say... i think i'm just looking for a place to rant...

Dysphagia = Difficulty Swallowing

dysphagia_sucks

The community info has many links and useful resources that might be of interest to people here. If this is not allowed, delete!

I seem to recall there was a question posed on this forum by someone in need of a good neurologist specializing in epilepsy. I just now looked down and found Dr. Orrin Devinsky's card on my floor; he's regarded in some circles as the gold standard of epilepsy doctors, and I knew a woman who was really amazed I had ended up seeing him. I've even seen him on the evening news once when they needed to call in an expert for commentary. (I don't remember how I ended up being referred to him.)

He's still at NYU, right across the street from Rusk Institute. I just called the number, and I got the voicemail; he's still in the same office.

Who was it who originally asked for a recommendation?

Was it anything more than being sat in front of a computer and doing computer games you could do by yourself at home? I bought the computer cog remediation programs, and am wondering if going to a neurologist who specializes in cog remediation would provide me with anything beyond things I could do just as well, if not better, on my own at home?

http://www.physorg.com/news/2010-12-brain-fully-mature-30s-40s.html

Hello all,

I enjoy this community immensely, and was inspired by it to create a community that provides support for subcategories of brain injury: frontal or temporal lobe.

Brain injuries are sufficiently complex as to merit building supportive communities which are subdivided by brain injury type.

You can find the community profile here: http://community.livejournal.com/front_tmprl_tbi/profile

I look forward to seeing anyone the community is relevant to there. Feel free to drop me a note with any questions or comments you may have.

Cheers,
Trustpects

I, too, would like to share both struggles and gains with you to learn from one another and support one another. My background:

Received TBI at age 17. Am now 35. TBI caused retrograde amnesia.

Post-TBI IQ Test results: excellent understanding of social norms, superb short/long-term memory for verbal and numerical info, superb processing speeds. Poor mathematical skills, attention difficulties for prolonged focus of visual data, impulsive and inaccurate decision-making when attention is tired, difficulty changing focus on to something new.

TBI long-term affects I'm currently working to heal from or work-around:
- Problems changing focus causes me to leave non-essential items (umbrella, book, etc) behind upon going from one environment to another (ie: leaving restaurant w friends to go home)
- Problems recalling new focus (ie: get up to read mail, get up to make phone call) when switching from one to another (break from work for another relaxing or essential activity)
- Problems with interpersonal conflicts; problems changing focus combined with strong processing speeds makes me ruminate/obsess and get pushy towards the other person to resolve the conflict with me
- Excellent understanding of social norms combined with long memory (not for data pre-retrograde amnesia) and quick processing speeds makes it easy for me to pick up on inconsistent behavior or behavior falling outside social norms. But my problem changing focus impedes my ability to allow behavior I find suspicious time to reveal itself as reason I should avoid the person I find is behaving suspiciously, or not. Thus, I tend to push people away I might not need to without giving them a fair chance to prove trustworthy or not.

I look forward to assisting one another in our post-TBI journeys. I just recently realized the ramifications of my IQ test and hope it helps others with realizations as well. It's taken me awhile to come to these realizations because my healing was rushed due to the efforts expended to get into college, graduate, get a job, keep a job, a loved one's cancer and later death, etc. which impeded further healing from TBI - I had only 2-weeks when 17 years old (I'm now 35), 6-weeks when 21, and 2-weeks recently to focus on that and nothing else. Now I'm taking more time.

Song: Pink Floyd's Learning to Fly     Very inspirational lyrics and video. Enjoy.
http://www.youtube.com/watch?v=xb-Nacm-pKc

Brain-injured woman wins right to testify

Please share this with people with brain injuries or other disabilities who have studied, volunteered, researched, or worked abroad:



The National Clearinghouse on Disability and Exchange (NCDE) is offering $50 for disability stories on international exchange, including options to submit blogs and featured person profiles. People with disabilities can take advantage of this added incentive to share overseas study, volunteer, work and research experiences! International and U.S. people with disabilities are encouraged to email submissions, but they must be currently living in the United States to receive the award. The deadline is September 8, 2010. Learn more on our stories and blogs webpage.

A few weeks ago, maybe a month ago I got a bran spankin' new laptop. Don't get excited. It's a sorry e machines PC. The LCD screen on my old one went to crap. So I've been using my new one to post on my journal, but not here on brain_injury. Yesterday I downloaded Semagic again. On, or in Semagic there is a place where you click to select where you would like your entry posted. I have selected brain_injury for this one.

My brain is pretty much mush these days. I am 100% to blame for this. It is so bad, that I'm not sure if I am even making sense.

I am always in search of new friends that I can relate with. So if there is anyone who reads this entry and can relate with living life in a depressive funk, I'd love to hear from you, but not on my journal. In an e-mail. My address is tbistoner@yahoo.com.

Thanks for reading this, if you did?

L8r

an expert is a person who learns more and more about less and less until finally he knows everything about nothing.

example: the scientist who says that the brain's connections break down with age, or the scientist who says that it is possible for people to live to the age of 1,000...

although i know it's possible for both of them to be right, it's entirely likely that one or the other of them is wrong. any bets on which one it is?

Doctor freezes man's skull, saves his life

This entry should be posted to "brain_injury". but I'm going to treat it like just another entry that would be on my journal. The reason for this is because I'm sick of reading the nonsense that my brain produces. No one in this community really knows me except my good friend Sunflower. He is this kick ASS dude I met years ago in a private room on AOL called "Brainstorm."

Anyway I'm unsure that it's noticeable that my brain is mush just by reading my entries, but it is. I would never even know the date if my computer wouldn't tell me by putting the mouse courser on the time at the bottom of the screen. Yup I'm pretty messed up. Me being messed up causes an extraordinary amount of depression. That coupled with the fact that I haven't seen any money in about two, or three months now just adds to my depression. I'm at the point now where ALL I want to do is die.

I won't lie to this community and say that I'm an angel, & that none of this shit should've happened to me. Out of all my friends, and using buddies (people I got high with) I am the only one that deserved this. I don't feel that anyone deserves what I got. Okay maybe I deserved to OD, but certainly not to be ripped of by that vast majority of the world.

That's what happens every single month. I have not seen money of any kind in over two months now. "Why?" It's because I am not my own payee. Why am I not my own payee? Because no one will allow me to be. "Why?" I don't fucking know!

Thanks for letting me vent a little.

http://www.wired.com/dangerroom/2010/05/pentagon-turns-to-brain-implants-to-repair-damaged-minds/

regardless of how well their research is going, i'm not sure i'd trust a brain implant from the pentagon... 8/

I just figured out how to post to a community instead of my own journal. Now I am doing it from Semagic. In this program I can let my thoughts flow.

So you know that my name is Paul, and you also know that I have a brain injury. but what you do not know is how I archived this massive brain damage. So this is a small part of my story. Here I go...

Okay it goes back over 10 years now. All the way bad to the night of December, 31, 1994. That's right, New Year's eve. There were four of us in a house that I was renting a room in. Clint (it was his house) Jennifer (Clint's girlfriend), Teil (my girlfriend), and myself. Everybody was partying that night, but no one was partying as hard as me.

It is estimated that I consumed 25 Xanax Bars, on top of 17 Methadone pills that night. Why that many? That question haunts me to this day. My only answer is because I was young (only 16), & I wanted to get higher than I'd ever been.

Anyway to shorten up a very long story, I end up passing out ON MY BACK. The Methadone caused me to vomit. So I choked for over an hour on my puke. Then unfortunately someone called 911, after I had completely stopped breathing. They brought me back!!

Oh how I wish they would have let me die. I would be at peace right now, but instead I'm living in a group home facility in North Carolina, hating every second of every day. Just looking for a way out of this world.

On this entry it says "Post to: brain_injury. So I'm just assuming that this entry will be posted there instead of on my journal. Anyway I'm not really new to LJ, but I am new to the whole community thing.

My name is Paul, & like everyone else in the world, I've got a story to tell. Just not now, but maybe soon.

L8r...

http://blog.evernote.com/2010/03/25/user-profile-patrick-jones-living-with-traumatic-brain-injury-with-help-from-evernote/

"Deacon Patrick Jones of the Catholic Diocese of Colorado Springs has sustained eight concussions since age 12 and as a result suffers from Traumatic Brain Injury (TBI), which causes severe short-term memory loss. In recent years, Traumatic Brain Injury has received some attention recently because it is among the most prevalent injuries sustained by veterans returning from Iraq and Afghanistan.
How Patrick Jones uses Evernote

In his day-to-day life, Patrick uses Evernote to help him piece together the basic memory flows we take for granted."

http://shootthemoonforbraininjury.blogspot.com/

Emotional support for psychos
hi LJbraindamage.




this is my first post.
( venting mostly )

http://www.independent.co.uk/news/science/hormone-could-heal-brain-damage-1905148.html

it's too late for me, but what do you guys think?

ever since my injury, i have been more-or-less unable to distinguish between a sneeze, a yawn and a cough until they happen. essentially, what that means is that i will be all ready to sneeze, and a yawn happens instead, or i'll have a tickle in my throat that feels like it's going to be a cough, but when it comes out it's acutally a sneeze. furthermore, a sneeze will turn into a yawn, or a coughing fit will end up being a run of five or more sneezes.

all in all, i would say that i have more or less recovered from my injury. i still have problems getting my right hand to do what i want it to about half the time, and i still require a lot more sleep than i did before my injury, and my wife could probably enumerate some other things that aren't as obvious, but biting my tongue and not being able to tell sneezes, coughs or yawns apart are the most frustrating aspects of my injury that still haunt me.

Right now I'm feeling:: frustrated

I need to know

What is the age cut off (if there is one) for being able to manipulate simple word documents from an email attachment and send it back to the original sender?

Is there some (other than age) common disability that would prevent an otherwise intelligent person from this ability?

I realize that I am not *yer avridge* (tm) 47 year old woman, (having had a computer since 1983...) but Cheese and Rice! Why am I spending an hour transposing someone else's crap, when he should just be able to Fill Out a Damn Form?

I'm Brain Damaged.........what's his excuse?

Right now I'm feeling:: aggravated

On this day 27 years ago—which was also a Sunday—I was in a motor vehicle accident and was comatose for a month.

I tend to think nobody understands about this, especially after so many years, and this is probably the only place I can go to vent about it.

The good news I have for anyone reading this is that things do get better, and if you're lucky it gets bearable. I still have tinnitus, still have ataxia, but considering it's now been over half my life, I think I'll live with it.

My name is Haley and I'm going to school to be an Occupational Therapy Assistant. I am inspired by those who have had to deal with a TBI. The recovery process amazes me and I am excited to one day work in this field. If you want to be friends I'd love to read your journal. I'd be most interested in reading any passages about your daily experiences and stories of recovery.

My journal is pretty mopey and depressing and may piss a person off. I write therapeutically and am not expecting anyone to have to sit there and read about my whiney ass. I am more interested in getting to know what it really is like to have suffered like this. Get some insight on how I could be a better OTA practitioner. I'd love to hear any stories about experiences you had with an Occupational Therapist. How you felt during treatment, the way your family and friends got involved (or didn't) in your recovery. Anything.

Any stories, insight, advice, etc?

It has been 2 years since my stroke, it happened without any warning, when i was 22 and i still have my moments of sadness. The stroke affected all the right side of my body, i even lost the sight on the right eye.
I still do physical therapy, but the most challenging aspect is the hand, i lost every function of it, i can't hold things between my fingers, only with the whole hand.
Do you know any exercises to improve this? i try to grab small objects as a therapy but it is been so slow!! Also, i lost the sensibility, do you know of anything to recover it?

I’ve let myself be disjointed from my endeavors, need to pull myself back into place. Losing my connection to someone that I know nothing about, except for her interest in theatre. I wonder if she’ll work out at 1:00. I’m not doing well at all. Understandable after the things that happened, that I did. How could I have let those things happen? I’m better than this. I struggle with a deficient eye, optic nerve. Causes problems for myself I struggle to strengthen it through drawing, painting, keeping my eye active with photography. Make my eyes work, think about my eye as I do my left side that doesn’t work; my stroke. Think about it working, it helps, though just a little. Every gain is positive. 1:00 is better for the gym, mornings for work, painting, photography, whichever mode I’m in it’s better. I write this morning, need to go to the hardware store, sand paper and a block for the paper. I was going to use my electric orbital sander but I don’t know where it is, I looked in the shed, the pole barn my brother-in-law built. It’s not there. I’ve let down the girl at the gym, didn’t talk to her; say “Hi”, and conversation. My conversing is not so good I often fail to recognize what to say, I think it’s because of my left eye, the cross over to the other side of the brain. When you speak you have visual information one eye connects to one side the other to the other side of the brain. My left eye is not connecting, so I lose the right side of my brain or partial loss. The optic nerves cross left eye to right side right eye to left side of the brain. The visual input could stimulate the conversational aspect of the brain or mind. This is my own thought, I don’t really know. This could also explain the connection of colors to emotion. Why a disorganized room affects the mind and thinking, I need to clean and organize my room again or put things back in place. My painting station disorganizes my room. It doesn’t quite fit. The large scale painting is squeezed in at an angle. I wonder if part of my problem in speaking to girls is that /I’m afraid to reveal this problem with my eye that I have through not conversing as well as I should. Maybe I just need to believe in myself and I’d be fine, would be fine. How were you treated growing up, in infancy? We all learn by how were treated.

Hi.

I was wondering if anyone here in this community experiences (or knows someone who experiences) difficulties in propioception. What kinds of activities do you (or your friend) find challenging? How have you learned to compensate for your difficulties? I've done some reading on the subject, and it sounds like most compensatory strategies rely on visual input. I'm working with a woman who is blind and says she has lost propioceptive functioning from stroke. She says that she has trouble dialing a phone because she can't keep track of where the numbers are. I suspect that part of the difficulty is that she can't see the dialpad and hasn't learned to compensate for that. But if lack of propioception is part of the issue, how might I go about helping her compensate? Any other thoughts would be helpful.

Respectfully,
Jedi

Right now I'm feeling:: hungry

From an old HS friend who is a nurse and has a tbi (Go team!)

"Light sensitivity in association with traumatic brain injury" I thought there was a name for it, but it kinda spells itself out.

Number one side effect: feelings of exhaustion/tired/weakness

Number two side effect: feeling disassociated...some patients call it their "blurry feeling" or"sun seizure".


Oh fuck yeah. That's why Miscca said I ran the gamut of all seven dwarfs yesterday after being in the sun.

Number 2 - I call "zombie-brain", it's smile and nod time while I try to find a cool, dark corner to crawl into

------------------
http://brokenbrilliant.wordpress.com/2009/04/03/light-sensitivity-solutions/

http://nora.cc/content/view/28/72/

http://www.alaskabraininjury.org/Library/Life%20after%20Brain%20Injury/Articles/Issues%20after%20brain%20injury/Vision/Traumatic%20Brain%20Injury%20Related%20Visual%20Loss.doc

http://irlen.com/index.php?id=56 - has a link at the bottom for a test for light sensitivity, dunno how valid it is.

i got written confirmation that the judge decided in my favour on friday, and, the same day, i got my first disability check - which was a big one, because the judge also decided that i have been disabled since my injury, which happened five years ago. if i wasn't so sick, i'd be exstatic!

so “the hearing” happened today.

i got up and almost immediately i perceived that my mood was somewhat sour. it’s not too surprising, because i was up until 1:00 or so last night, playing a gig with snake suspenderz. it was also sort of expected, since, in my meeting with the attorney yesterday, he said that it would be considered “appropriate” for me to act as though i was stressed out and out of sorts, so i didn’t worry about it too much. moe and i got dressed and left for the hearing about the time that i would normally be getting up. strangely enough, the office building that the hearing happened in was a block up the street from top pot doughnuts, so i had doughnuts for breakfast, which while pleasant, gave me a massive sugar rush, followed by a crash which happened just about the time i was going in to the hearing room. moe went first, so they swore me in, and then almost immediately told me to go sit in the hall while moe testified. i’m not exactly sure why they separated us, but it seemed like they deposed moe for about 45 minutes, and then they deposed me. the testimony was more or less the same as it was in my “practice” deposition, yesterday. they discussed what “listing” i fell under and ultimately decided that it was 1202, which is “organic mental health” concerns, which include things like brain injury, with a possibility of 1210, which is “autistic spectrum” mental heath problems, which includes asperger’s syndrome. the psychological “expert” didn’t want to go with 1210 because i haven’t actually been diagnosed with asperger’s, but he agreed with me, and with ned, that i have probably had asperger’s my entire life. the psychological “expert” also asked me about my contrived (but entirely legal) name, which confused me, as it has nothing whatsoever to do with anything even remotely close to my reasons for applying for disability.

what it comes down to is that i won’t know for sure whether the judge decided in my favour or not for four to six weeks, but the attorney said that, according to his experience, there’s a 99% chance that he’ll decide in my favour.

i suppose i should be eccstatic, but in reality, i’m exhausted and depressed and my mood is still sour.

after four years and three applications which were denied, i'm finally coming down to my judicial hearing to see whether or not i should get SSDI for a brain injury that left me with a 9" scar on my head, diminished use of my right hand, and a temper that amazes even me...

i've been terrifically ill since last week, which has made my mood even more foul than normal. i actually paid money out of my own pocket (to the tune of $350, when it was all finished) to go and see a doctor yesterday, and the doctor said that i would probably start feeling better in a few days, and i would be back to what i now consider 100% health (which is about 80% of my pre-injury health) in about 2 weeks...

but my hearing is in a week, and i get the distinct impression that if it doesn't go well it is very likely that i may say and/or do things in the courtroom that will cause me to be carried out in chains...

at this point, in spite of both my attorney's and my counsellor's reasurances, my impression is that i still only have about a 50% chance of them approving my claim, and i really don't want to be arrested or worse for shouting, or taking a swing at the judge...

any advice?