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?

codeman38 and I have just created visual_stress, for anyone who experiences symptoms of visual stress. It's also known as visual processing disorder, Meares-Irlen Syndrome, Irlen Syndrome, or Scotopic Sensitivity Syndrome, and it takes the form of unpleasant visual distortions or eyestrain when reading, sometimes with headaches or migraine as well. It's commonly treated with colour, for instance in the form of acetate overlays for paper or tinted spectacles. You can read more about it here. There's a strong connection with dyslexia, and some people with processing problems have co-existing auditory processing disorder or other neurological issues.

You don't have to be diagnosed with visual stress to join, just to have difficulties in this general area. People with ME/CFIDS, migraine, MS, epilepsy, autism spectrum disorders or ADD/ADHD, for example, often experience visual problems of this nature.

SAN FRANCISCO: Local Dancer In Coma Returned To Bay Area [Christien Kafton]

www.ktvu.com/video/18945744/index.html

KTVU News Follow-up of Hollis' Arrival:

http://www.ktvu.com/video/18945744/index.html

paloaltodailynews.ca


Hospital awaits overseas coma victim

Hawthorne, 31, of Bay Area, injured in motorcycle accident while in India

BY DIANA SAMUELS

DAILY NEWS STAFF WRITER

Hollis Hawthorne lies in a hospital bed in India, barely moving, slowly starting to show signs of consciousness.

Around her and around the world, family and friends have spent the past few weeks scrambling, struggling with red tape and limited funds, to get her to Stanford Hospital.

Hawthorne, a 31-year-old San Franciscan originally from Nashville, Tenn., was severely injured in a motorcycle accident Feb. 24 in India and has since been in a coma. Family members and her boyfriend who are with her in India say she’s breathing on her own, is beginning to open her eyes and move her hands; however, they need to quickly move her back to the United States. Stanford Hospital has offered financial assistance, and fundraisers have been held across the country to raise money to fly her back to the Bay Area.

After setback after setback, her family announced on Saturday that if all goes well, Hawthorne will be arriving in San Francisco on Monday.

In pictures gathered on the blogs her friends have set up, Hawthorne’s curly blond hair spills down from messy ponytails or beneath offbeat hats. Hawthorne worked for the Burning Man festival and helped found a San Francisco bike dance team called The Derailleurs. Her friend and roommate Eliza Strack described Hawthorne as a woman who loves healthy eating and yoga, a perfectionist who asks for push-ups when dancers are late to Derailleurs practice, and a person who is “enthralled by all the little details.”

“She is always coming up with ideas, always scheming for a way to make a new piece of art,” Strack said.

Hawthorne went to India to celebrate her birthday, find a yogi and travel the country on motorcycle with her boyfriend, Harrison Richards Bartlett, Strack said. On Feb. 24, about a week into her monthlong trip, Hawthorne and Richards Bartlett were riding motorcycles near Pondicherry when the accident happened.

It’s not clear exactly what happened, Strack said. Another motorcycle and a bus were involved in the collision that left Hawthorne unconscious and bleeding on the road. She was wearing a helmet, but the handlebars of her motorcycle had smashed through the helmet visor. Richards Bartlett was riding up ahead and was not hurt in the incident.

The others involved in the accident fled, Richards Bartlett wrote in an e-mail posted on a “Friends of Hollis” blog. He described spending a half-hour stranded on the side of a bridge, performing CPR. A van of German tourists finally pulled over, and they made it to a hospital. Hawthornehad damage to her brain stem and was in a coma.

“Please keep her in your thoughts and send her all of the energy and magic and love and prayers and anything you got,” Richards Bartlett wrote in the e-mail. “The next week is critical and she could perish or come out at any moment.”

Since then, Hawthorne has begun to recover. Her respirator was removed, her eyes are opening, and she can squeeze other people’s hands. Her mother and aunt have joined Richards Bartlett in India. When they’re not at Hawthorne’s bedside playing her favorite music in the hopes of stimulating a reaction, they’re trying to find ways to get her to Stanford.

Hawthorne doesn’t have medical insurance, but Richards Bartlett’s mother, Karen Richards, had friends connected to Stanford Hospital. Hospital representatives have offered to take Hawthorne as a charity case.

“The hope is that when they get to Stanford we can get a clearer idea of how this particular injury can be treated, and this treatment can start,” Richards said.

They’ve been working with Stanford Hospital’s Barbara Ralston, vice president of Guest Services and International Medical Services, whose office helps coordinate medical efforts overseas. Ralston described Hawthorne’s case as “heartrending,” “When we get a call like that,” she said, “it’s exactly what we’re always ramped up for.”

Getting Hawthorne to Stanford has proved to be, as Harrison Richards describes on the blog, “a coordination nightmare.” They were going to take her backto the U.S. by air ambulance, but as her condition improved they hoped buying a section of a commercial flight would be cheaper. It’s a plan filled with difficult logistics, as they worked to get visas for doctors to accompany her and tried to find a plane equipped to carry a stretcher.

They were set to go on an Air France flight this week, but that fell through a few days ago when the airline told them the flight’s layover in Paris wasn’t long enough, Richards said. That discouraging news sent her son back to the airport.

“That’s time that he could be with Hollis,” Richards said.

Finally, her family’s blog announced Saturday, they’d done it: Hawthorne is scheduled to arrive in San Francisco on Monday.

Her family will have some help when they get back, too. Strack has been leading an immense fundraising effort to pay for travel expenses and Hawthorne’s care, and as of Saturday she’d gathered about $90,000--more than halfway to her goal of $150,000.

Strack said she’s astounded at the outpouring of support. Hawthorne’s story has spread throughout the bike dancing and Burning Man communities online, and fundraising events have been held in other cities, such as San Francisco, Portland, Austin and New York.

More fundraisers are planned, and details on donating can be found at friendsofhollis.blogspot.com.

It’s beautiful to see, Strack said, “this safety net that we thought was invisible.”

E-mail Diana Samuels at dsamuels@dailynewsgroup.com.

Photo courtesy of friendsofhollis.com

Hollis Hawthorne was severely injured in a motorcycle accident on Feb. 24 in India and has since been in a coma.

Last February, Hollis Hawthorne suffered severe trauma to her brain from a motorcycle accident while traveling in India. Though she has no health insurance, Stanford Medical has offered to take her case and treat her. Now all Hollis needs is an air ambulance from Pondicherry to Palo Alto.

She is in the air as I type this; ever since the accident, people have mobilized to raise money, and she is headed for Stanford University Medical Center, where she will be treated pro bono.

This is great, because she needs to get treatment as soon as he can for this injury; it's a brain-stem injury, and no one knows if she'll make a complete recovery from it—although it will certainly take a long time regardless. For all history and updates on Hollis, refer to her blog.

Hollis Hawthorne, 31, of Tennessee, was visiting India a week ago and riding a motorcycle. She has been critically injured in a motorcycle crash and is currently in a medical facility in India until the funds can be raised for her transport. Here is what her boyfriend has written:

this is a letter that was sent from Harrison, ( Hollis's boyfriend)

-Hello​ frien​ds and famil​y,​

As many of you know,​ and many of you don'​t as I have not even talke​d to you in a while​.​ I am in the midst​ of a crazy​ trage​dy here in south​ern India​.​ I was trave​lling​ with my sweet​heart​ Holli​s by motor​cycle​ and the worst​ possi​ble scena​rio has unfol​ded.​ She was in an accid​ent that took a freak​ turn and I will spare​ you the gory detai​ls (and they are gory)​ but end resul​t,​ she is in a coma with the most serio​us injur​y one can susta​in.​ She has a serio​us brain​ stem injur​y.​ This is the part of the brain​ that contr​ols and is conne​cted to every​thing​.​ The accid​ent happe​ned at 11:​30 am on Tuesd​ay Feb. 24th,​ it is now 5:30 am on Monda​y March​ 2nd as I am writi​ng this (I don'​t sleep​)​.


​

This is what'​s going​ on.​.​.​ The treat​ment she is recei​ving is okay,​ for India​.​ There​ are howev​er huge rats scurr​ying about​ on the floor​.​ I am sleep​ing on the ant cover​ed floor​ outsi​de her room as I am not allow​ed in and the water​ they have used for many proce​dures​ is not even purif​ied.​ Today​ as the final​ straw​ they would​ not allow​ her own mothe​r who has just flown​ here from Tenne​ssee with emerg​ency suppo​rt from the US consu​late to see her daugh​ter when she inqui​red.​ She has been allow​ed some of the time but they sort of shame​ you/ are mean to you to make you not ask for visit​ation​.​ They are not obser​ving her brain​ press​ure and have done nothi​ng to allev​iate the swell​ing in her brain​.​ These​ are thing​s that can make or break​ her early​ on in her recov​ery and heali​ng proce​ss.​ Her chanc​es are slim.​ Her chanc​es are slimm​er here in Puduc​herry​,​ Tamil​ Nadu,​ India​.


​

We mirac​ulous​ly got her accep​ted to Stanf​ord which​ is one of the best hospi​tals in the world​.​ Also,​ as a chari​ty case which​ is very rare,​ since​ she has no insur​ance.​ So what we need now is to get her there​.​ I am reach​ing out to every​one I know to help us get an ICU Plane​ (​a.​k.​a.​ air ambul​ance)​ to fly her back to Calif​ornia​.​ If anyon​e knows​ anyon​e with a plane​ we could​ rent or has anybo​dy in the Air Ambul​ance indus​try or a docto​r who could​ volun​teer their​ time to come and get her and fly her to Stanf​ord and reduc​e the cost.​.​.​ those​ thing​s would​ be amazi​ng.​ The reali​ty of the situa​tion is that we need to raise​ $​150,​000 dolla​rs,​ now for the quote​ we have.


​

There​ is a blog that Holli​s'​s best bud Eliza​ (​from her bicyc​le dance​ troup​e the SF Derai​lleur​s)​ start​ed:​ friendsofhollis.blogspot.com . it has a donat​e butto​n on it. I would​ like to urge every​one to give somet​hing to this butto​n even if it is 5 dolla​rs and then pass it on to every​one they know.​ Hopef​ully we can all figur​e out a way to give wheth​er it be by sheer​ gener​osity​ or organ​izing​ a fundr​aiser​ where​ver this reach​es you. Send it to peopl​e who know her and send it to anyon​e who is a compa​ssion​ate perso​n and knows​ what its like to lose a brigh​t brill​iant star of a perso​n.​ Holli​s is an amazi​ng perfo​rmer,​ bicyc​le and food activ​ist and so much more.


​

In San Franc​isco (and every​where​)​ and we need to do every​thing​ we can while​ we have the possi​bilit​y,​ to bring​ her back.​ It was crazy​ to go throu​gh my conta​cts to selec​t every​one to send this to and see the amoun​t of amazi​ng peopl​e who are no longe​r alive​ on it and how badly​ I don'​t want to add her to this group​.​ Pleas​e help howev​er you can even if its just keepi​ng her in your thoug​hts and sendi​ng heali​ng energ​ies and magic​.​ You can write​ me with any quest​ions or suppo​rt or call/​text anyti​me,​ day or night​.


​

Thank​ you more than anyon​e can be thank​ed,​ for every​thing​ you have all done so far, you have kept me going​ in my darke​st hour.​ Pleas​e forwa​rd this on. Put it on myspa​ce,​ faceb​ook,​ your blog,​ craig​slist​,​ tribe​,​ tell every​one.


​

love and teary​ thank​s,
​Harrison

There are a couple of blogs dealing with this tragedy: http://friendsofhollis.blogspot.com/

and

http://helpholligethome.blogspot.com/

Please spread the word!

...I just got back results from an MRI, which shows lesions and stuff 'mostly in the frontal lobes' and 'scattered primarily subcortical white matter abnormalities'. My neurosurgeon guy is not replying to me, and said to his receptionist something about 'all old people get these' (I'm not old but got electrocuted/electric shocked with wires by accident)and yet that I 'might want to see a specialist in a big town'...so, anybody have good insight or some easy website...? I have not had success with www.dogpile.com and easy details...thanks!

Right now I'm feeling:: awake

I'm a TBI survivor. Pretty much the entire right frontal lobe was knocked out.
It's been about a decade now. I don't relate the story that much. When I made an offhanded comment to one of my closer friends about it a few months ago, when describing something about the history of the progression of my thoughts on different topics, I was surprised to discover that in all of the years I had known her, I had never mentioned it. All that she knew was that a few of my front teeth were fake, and that it had something to do with some accident.
I'm somewhat socially awkward, but I've been that way my whole life. I think that my ADD actually aided my quick recovery.
I think that one of the biggest lingering affects relates to that I was such an unpleasant patient. Apparently I kept trying to escape from the hospital. When they tried to secure me from the bed I was managing to free myself from those too, so they had to put a nurse in the room to guard me. From my first conscious memories in the inpatient facility, I was an unpleasant patient who wanted to be left alone to get back to his life and didn't like being told to 'settle down' and so forth. I think that I've had this lingering need since then to prove myself. One of the things that I am most sensitive to is the suggestion that I am in any way incompetent. When I went into uni (this happened the senior year of high school) I took full loads of many difficult classes, and set very high goals for myself instead of just trying to enjoy learning as I did in high school. One of the many consequences is that I (who am hopefully graduating this year, with a degree in maths, emphasis actuarial science) have a long varied transcript with not terribly consistent performance and an OK, but not fantastic GPA.
I try not to let TBI define me, but I've been thinking on it more and more recently.
I'm not entirely sure if I'm going to stay in this group.

i need help, please.

my ex-stepdad recently had a tragedy occur in his life, his new wife was giving birth when several complications arose, and was sent into a coma. she has since woken up and is undergoing physical therapy/speech therapy (she spoke my step dads name but that is it so far). she has two kids with my step dad, and one step daughter that is my sister. i dont know exactly what is going on, but her son was taken away by his dad (her ex-husband) and im sure my step dad is trying to get him back (she had full custody before this).

what i need help in:
my step dad asked if i could help with some research, based on this email he got:

"I know that you will be working with disability advocates who can help you make a very strong case showing that Diana's disability does not make her unfit to be a mother. In my field of SCI, there is research strongly supporting the fact that persons with SCI, even quadriplegics continue to be successful at parenting. It also shows that having a parent with a disability does not harm a child's physical and emotional development specially if there is a strong family support system. I hope that there is similar research in the TBI literature showing this same finding."


i need to find this research. all i have found are articles i cannot gain access to or unhelpful things. unfortunately personal experience is of no help but maybe you feel strongly enough about this to help me prove that although someone may have a disability they are not unfit to be a parent.

There are many cognitive deficits in Schizophrenia, mostly associated with prefrontal cortex.
What is the role of frontal lobes in this disorder?

Is there some model of prefrontal cortex that can explain the symptoms of Schizophrenia?

Greetings,

I decided that I would send this notice out to this group in case there is anyone who conducts work in the area of speech treatment with people who have various types of brain trauma and/or brain disorders that impact their speaking ability. I am in the process of putting a book together with my colleague Steven Stern called: Computer Synthesized Speech Technologies: Tools for Aiding Impairment. As such, we are inviting people to contribute their expertise to our forthcoming book in the form of a chapter. We are attempting to contact people who have research interests on the use of CSS (computer synthesized speech) technology to aid speech impairments, but besides people from academic institutions we are open to people who are practitioners who could write a chapter based on a case study of using CSS for a person with a particular disorder. Examples of some disorders with speech impairments are autistic spectrum disorders, ALS, brain/spinal cord injury, stroke, cerebral palsy, etc. We are also interested in chapters that deal with the special problems children and the elderly may have with computerized speech aids.

The procedure that we are following is that we are first soliciting short proposals for chapters. We will review these proposals and then approve those which are appropriate. Hence, all proposals may not be accepted.

I am including the formal complete call for chapters under the cut. Please feel free to forward this posting to anyone you wish. Thanks!

( under the cut )

hi,

i work with a little boy who will be 3-years-old in january. evidently he was born with an undeveloped myelin sheath, and he is currently enduring physical and speech therapies (provided by nyc-state) in hopes to build his myelin. he is currently on 27mg of lamictal for seizure disorder, but hasn't had a seizure in over a year. i was hoping for more information about this or related situations, but since he is undiagnosed at the moment i don't really know what to search for. also, we are going to a pediatrician appointment in a few weeks and the mother is encouraging me to ask any questions i please, so what should i ask about?

are there any tests i should encourage?
are there any diseases that could be ruled out?
how much does diet play a role?
how possible is it to really develop an undeveloped myelin?

update: some more about the little boy: as of now, he cannot hold a bottle, does not make much eye contact and if he does he doesn't hold it long, he doesn't respond to instruction, such as, give me your hand or look over here, he can roll over but just barely, he cannot walk, crawl, or talk, he has difficulty swallowing, his right eye wanders and according to an eye doctor it doesn't track properly...

any and all information would be absolutely great. thanks!

Has anyone esle experienced this?  And what do you do when it happens?....


Recently I have had difficulty with certain tasks that I re-mastered after my TBI.
For instance;  Suddenly I cannot type with all my fingers.  Just thumbs, fore and middle fingers.
I ised to know how to "hide things behind the cut";  now, no matter how many times I try, I can't get it right.

there are other things that are more personal and embarrassing....not to mention down right distressful!

Help?

Thanks!

Baggy

Right now I'm feeling:: frustrated

In 2000, I forced NYS VESID into allowing me to get trained as an Audio Engineer at the Manhattan campus of SAE. I was removed from training and VESID said it was I was a "behavior problem" well, Friday, I discovered that it was because they hadn't paid the school, and the school is holding ME responsible for the debt, going so far as reporting it to the credit bureaus. Even though I have repeatedly told them I do not owe them. I need an expereinced ADA Lawyer in NYC to sue VESID for Breach of Contract, and SAE for failing to accommodate me. Please contact me privately with references.

Thanks.

I'm writing to ask for your help. I'm conducting a survey to look into the feelings of direct support/personal care/home care consumers, professionals, and provider organizations in relation to finding, keeping, and coordinating direct support professionals (DSPs)/personal care assistants (PCAs) plus other potential concerns or frustrations.( Click here to read more... )

...I'm the person that got electrocuted last summer, lost some abilities including some forms of thinking, many of which came back, and I mostly have been doing great, but...I sort of have been ignoring the fact that the covering of my spinalwhatever (cord, sheath, whatever, don't know the exact detail) seems to be shrunk because it got cooked along with some of the rest of me, and so I get stuck in bed, get stuck in the bathtub, can't walk or turn over to get out of bed when I wake up, etc., since it seems like the sheath or covering or nerve covering or whatever got smaller from being cooked, maybe like scar tissue, which happened with other parts of my body which then got better after a few months and some serious stretching effort (hands, then right leg)(I can eventually get the abilities back after fifteen minutes-hour or so, so the rest of the day I can walk etc.)...I just feel bad today because I realised that I now have what they call 'clonus', which is when your muscles get weird and convulsive-y from spine injury or multiple sclerosis, every night now, and it sort of struck me that I can be as cheerful as I want, and have been, but it really really sort of sucks to get quasi-paralysed every night or if I lie down for long, and to be having these stoopid other symptoms now...sigh...I don't have a good western doctor (and the tibetan one who helped me lives overseas right now), and my physical therapist wants me to go for more xrays etc. before she'll continue with me, to check for further damage...sorry to whine, but I couldn't find any community for spinal injuries, which might be more appropriate, although my whole body get messed up and now it's spine/brain-related together...I do plan to see the doctor whom I don't like, just to get the xrays and whatever diagnostic stuff might help, but meanwhile I just felt sort of unhappy and wanted to have a little whine...

Right now I'm feeling:: awake

hi, i am new. i am not epileptic, but my older sister is. she started having seizures around puberty and has grand mal seizures. she usually has atleast 2 or 3 a year, but since she changed dr's they have been happening more frequently. i wrote this in my LJ and then thought to share it.


my sister had *3* seizures yesterday. that's alot to have in the span of a few months, much less a day.
they drain her body make her exhausted and scare the shit out of anyone near her. she could potentially die from them.

for some reason, im angry. i dont know if that is my weird way of dealing with it or what... my mom keeps getting super emotional about it, and i dont know why. i mean, i understand why, but what good does it do? we are helpless to this. i cant reach into her brain and fix it. i cant control anything about the disease. it seems like my mum and sis both want to focus on the fact that she can die, that she might die young.... why would you focus on that? she has a 6 year old daughter and loving husband and me and my mum and her friends, etc.... why why why why? it's morbid.

im just angry at the whole situation. my sister was dropped on her head by the doctor straight out of the womb in the hospital. my sister's father was held back by the nurses as he strained to beat the shit out of the doctor. my mum was confused and frantic as they rushed malissa away. she still has a small indention in her head from the injury at the age of 33. and around the time my sister hit puberty, the seizures started showing up. my mum tried to sue the dr briefly after my sister was born, but failed. not before finding out that the dr liked to have cocktails in his breaks.... why just give up on something like that? why not try and sue the fucking pants off of him? she could have set up some sort of trust fund for my sister just in case anything would have come from the dr dropping her. my sister will probably need to get brain surgery so they can implant some sort of device into her head. the brain surgery itself is risky...

im also mad because my sister can sometimes feel these things come on, and when she does, she takes another downer called kolonopin as another seizure preventative [she takes medication daily to prevent seizures, but it obviously isnt working]. you can hear it in her voice sometimes before she has it because she sounds really tired and almost agitated. my mum said she sounded "depressed" the last time she talked to her before the seizures. my sister doesnt really get depressed, i mean, she gets sad every so often and whiny sometimes, but not really depressed. hopefully that is one more tool we have to prevent this from happening.

i recently came across a speech by jill bolte taylor which i found tremendously inspiring. she is a PhD neuroanatomist who experienced a stroke as a result of an AVM, and wrote about it from the first person perspective in a way that i experienced almost exactly but didn't have the vocabulary to discuss.

i tried to post the video of her speech, but it wouldn't work for some reason. click on the link above to watch the video on her TED page. really, go watch the video and then come back... it's only 18 minutes, and it was tremendously inspiring to me.

from her book, My Stroke of Insight: A Brain Scientist's Personal Journey (which i have just begun to read in reverse - if you know me, it wouldn't seem as odd), i found a couple of lists of things that i thought would be appropriate for other members of this community, regardless of how much they have recovered:

1. Have you had my eyes and ears checked to make sure you know what I can see and hear?
2. Can I discriminate Color?
3. Do I perceive three dimensions?
4. Do I have any sense of time?
5. Can I identify all of my body parts as mine?
6. Can I discriminate a voice from background noise?
7. Can I access my food? Can my hands open the containers? Do I have the strength and dexterity to feed myself?
8. Am I comfortable? Am I warm enough? Or thirsty? Or in pain?
9. Am I oversensitive to sensory stimulation (light or sound)? If so, bring me earplugs so i can sleep, and sunglasses so I can keep my eyes open.
10. Can I think linearly? Do I know what socks and shoes are? Do I know that my socks go on before my shoes?

1. I am not stupid, I am wounded. Please respect me.
2. Come close, speak slowoly and enunciate clearly.
3. Repeat yourself - assume I know nothing and start from the beginning, over and over.
4. Be as patient with me the 20th time you teach me something, as you were the first.
5. Approach me with an open heart and slow your energy down. Take your time.
6. Be aware of what your body language and facial expressions are communicating to me.
7. Make eye contact with me. I am in here - come find me. Encourage me.
8. Please don't raise your voice - I'mnot deaf, I'm wounded.
9. Touch me appropately and connect with me.
10. Honor the healing power of sleep.
11. Protect my energy. No talk radio, TV, or nervous visitors! Keep visitation brief (five minutes).
12. Stimulate my brain when I have energy to learn something new, but know that a small amount may wear me out quickly.
13. Use age-appropriate (toddler) educational toys and books to teach me.
14. Introduce me to the world kinesthetically. Let me feel everything. (I am an infant again.)
15. Teach me with monkey-see, monkey-do behavior.
16. Trust that I am trying - just not with your skill level or on your schedule.
17. Ask me multiple-choice questions. Avoid Yes/No questions.
18. Ask me questions with specific answers. Allow me time to hunt for an answer.
19. Do not assess my cognative ability by how fast I can think.
20. Handle me gently, as you would handle a newborn.
21. Speak to me directly, not about me to others.
22. Cheer me on. Expect me to recover completely, even if it takes twenty years!
23. Trust that my brain can always continue to learn.
24. Break all actions down into smaller steps of action.
25. Look for what obstacles prevent me from succeeding on a task.
26. Clarify for me what the next level or step is, so I know what I am working toward.
27. Remember that I nave to be proficient at one level of function before I can move on to the next level.
28. Celebrate all of my little successes. They inspire me.
29. Please don't finish my sentences for me or fill in words I can't find. I need to work my brain.
30. If I can't find an old file, make it a point to create a new one.
31. I may want you to think I understand more than I really do.
32. Focus on what I can do rather than bemoan what I cannot do.
33. Introduce me to my old life. Don't assume that because I cannot play like I used to play that I won't continue to enjoy music or an instrument, etc.
34. Remember that in the absence of some functions, I have gained other abilities.
35. Keep me familiar with my family, friends, and loving support. Build a collage wall of cards and photos that I can see. Label them so I can review them.
36. Call in the troops! Create a healing team for me. Send word out to everyone so they can send me love. Keep them abreast of my condition and ask them to do specific things to support me - like visualize me being able to swallow with ease or rocking my body up to a sitting position.
37. Love me for who I am today. Don't hold me to being the person I was before. I have a different brain now.
38. Be protective of me, but do not stand in the way of my progress.
39. Show me old video footage of me doing things to remind me about how I spoke, walked and gestured.
40. Remember that my medications probably make me feel tired, as well as mask my ability to know what it feels like to be me.

For those of you who are photo sensitive, do you think you can tell when your optical nerve is swollen? I think I can, I feel more "fragile" and notice my eyes are really sensitive and the trigger/fuse to seizure fun is much shorter.

 Anyone know of TBI support groups in the Northern Virginia area?

Hi. My friends' 5 month old baby is currently critical with meningitis. She brought him to the doctors on Wednesday morning & she was told that it was an ear infection & to give him nerofen to help settle him, stop the crying etc. She rang the doctor back that afternoon to say he was no better & asked if she should bring him to the hospital. Again the doctor said he was fine & there was no need to take him to the hospital. However, he got alot worse by the night & an ambulance had to come to rush him to hospital. As soon as the ambulance crew saw wee Darragh, they knew he was in a gravely position & told his parents to prepare for the worst.

They managed to get him stabalised by yesterday afternoon but were told that the next 48 hours where going to be cruical for him. However, last night he took a turn for the worst & he had to be rushed to another hospital, on life support machine.

The doctors then decided this morning that the best option was to put the baby to sleep for 3 days, & to try & wake him up after that. Can anyone tell me why this decision would have been made? I can't find out much information from my friend or her family because they are just in absolute pieces. Also, does anyone know if there is a good chance Darragh will come round after 3 days? Like is it a 50/50 chance? I am just so concerned here, I am worried sick & can't even visit him or anything. I tried looking up information about this through google but couldn't find alot apart from symptoms etc.

Also my 2 sisters children aged 2 1/2 & 1 1/2 were in close contact with the affected baby a week ago today - is there any chance at all that my neice & nephew could be affected now?

Please keep wee Darragh in your prayers, that he wakes up in 3 days time.

Thanks.

Hey!  My name is Breanne King and I am a TBI survivor.  In July of 2005 I was kicked in the head by a horse.  I went into a coma and then I received brain surgery to remove part of my cerebellum.  When I woke up a month later I had to re-learn how to walk, talk, read, write, and everything else.  Now I'm going back to my school (BYU) and I will graduate in a year or so.  I got married and I also got my license back.  I've recovered well I think!

Now I have a TBI Blog, its at http://MyTBILife.blogspot.com
I talk about the tough things a person has to go through and I'm trying to record my memories now, because I know I'll forget them pretty soon!  I know that, for me, I was relived when I found out I was not the only person going through these trials and I want to do that for someone else if I can.

my dad was moved out of the hospital and into a rehab center/nursing home :) :)

only down side is its in the middle of effing nowhere and busses dont even run there so I've got a whole new set of problems haha

but yay!

Thank you to those of you who helped me out...

I took a plane to VA to see my Dad, his sister picked me up and we headed over to the hospital and my dad was somewhat responsive, he made eye contact and would track us around the room with his eyes but wouldn't follow any commands. Because it was later in the day and they had had him propped up in a chair sitting up earlier, it was kind of expected that he would be drowsy. We knew Americas Funniest Home Videos would be on at a certain time and he has in the past been responsive to it, so we put it on and not only was he clearly watching but he was laughing! He can't make any sounds, but he had a huge open mouth smile and his chest was shaking like he was giving a big belly laugh and it was all at appropriate moments and things I know he would find funny :)

The next day he was pretty much the same as far as responsiveness, we got a few commands out of him...I got him to move his head and his foot twice on command. This day I filed down his finger and toe nails, gave his hands arms & feet a good lotioning(he has a history of exima[sp?] and we don't want that to get worse). Every day I would give him a face wash and clean out his mouth because the nurses bath him and do oral care but he sweats alot and his oral care is not up to par. Again this second day we put on Americas Funnies Videos and, again, he laughed. It was fantastic.

The third day, sunday, we had a pleasant surprise when we got there and saw his team of doctors outside his door(we didn't think they made rounds on sundays and hadn't seen them the whole visit). The head doctor who has been working with him since his motorcycle accident landed him in the hospital almost a full 6 months ago told us some wonderful things. He told us that though it may be slow he can see that he IS making improvement and there is definitely a chance he can get through this -something none of the other doctors told us- and he is not one to give false hope, he "tells it like it is". And though I know he's not going to get back to the man he was, it was wonderful to hear this.

He was approved for medicaid and they are trying to move him to a rehabilitation home. We are trying trying trying to get him into one closer to my aunt who is his legal guardian, who lives about 5 hours away from where he is now. There havent been any openings in the centers near him which is good, and the doctor I was talking about before said that the only thing that may keep him out of the rehab centers would be his bedsore and if it comes to that he will give him the cosmetic surgery, and alluded to the fact that he would do it free of charge. AMAZING. I think I'm falling in love with that man.

When we got to the hospital that day they had just moved my dad from his bed to his chair and he was more alert than we had seen him the whole weekend. He was following all the commands we were giving him, and even made some noises!!!! Sometimes when he's trying to do something you can just see it in his face how hard he's trying. Or like I'll tell him "ok dad move your head from side to side" and he'll squeeze my hand so hard and scrunch up his face and then he'll move it just like i asked. He will look at me sometimes and there is SO much behind his eyes and I feel like there is such a connection there. My aunt says she has never seen him look at anyone the way he looks at me. It all sucks, but I've said it before, its nice to know the connection and closeness he and I have always had is still there.

I unfortunately, started feeling really sick and thats probably the last place I should be when I'm sick. He's open enough to infections and such, so we headed out as they were putting him back into his bed...leaving happy at how alert and responsive he was.

all in all it was a pretty good visit :)

i hate doing this, and if the maintainer finds this to be inappropriate, feel free to delete it.

I've posted a few times before about my father who was in an accident and has been in a coma since august. He is working through it and is clearly more responsive when surrounded by family. He has a wonderful, loving sister who lives in the same state as him who has been visiting every weekend. I am only able to visit him once a month(i live 4 or 5 states away) but he is EXTREMELY responsive and I'm told every time that he does more with his physical, speech, and occupational therapists when I am there than when I am not.

I haven't missed a month yet, and this month is about half over and money is really tight. If anyone could donate even a dollar(hey, every little bit counts!), that would be incredible. I have a link on my info page and on my latest journal entry.

thanks :)

 Hello,

I'm new here as well. I've been trying my hand on posting just to vent because I feel like a heel venting to my family and friends, who really just want to help. And deep down, I know this.

I had a bleed called a Cavernous Malformation on the right pons; it's a fancier way of saying my brain capillaries bled into my brain stem and rendered me paralyzed on my left side, blind/deaf on my right. It's been 18 months+ npw and sometimes I feel like I've been written off. As it were, sometimes I feel like it's justified, other times, it makes me mad as h_ll. 

I'm hoping to use that to my favor. Doing research on my own right now in hopes of finding new pt ideas. Because I have no way to get to pt on my own right now. I live on the third floor of a non-elevator building. So pt/ot is me and me alone. I'm hoping to find solutions so this wouldn't be my doom.

Hi I am new here, when I was 9 I was swinging on the school swings when a boy pulled the swing out from under me.  back then they had concrete under the swings and I cracked my head open and received a brain injury.   my vision got bad and i started having seizures.  i had to learn how to talk, walk and do everything over agiain. i still have problems with walking when i am tired and if i get upset i cant get my words to come out right.  my seizures still plague my life, and my memory is shot.  i dont go out on my own for fear of a seizure or forgetting why i was out and what i was doing. any one else like that, if so would love to talk with you.

joileigh

 Greetings,

My name is Mark Kraft.  I am probably best known for my work as LiveJournal's first Business Manager, back in the early pre-dotcom days of the site. I'm also the guy who came up with the idea of LJ's communities, so it's always nice posting to them and getting to meet a new group of people. 

A few years ago, my mother passed away after an eight-year battle with Mutiple System Atrophy (MSA), a neurological disease in the same category as Parkinsons Disease.  Unfortunately for me, my mother, and my family, the most obvious difference between MSA and Parkinsons is that MSA is even more progressive, more debilitating, and more lethal.  

Treatment is nearly identical to that of Parkinsons, in part because many of the same treatments help, but also in part because, like Parkinsons itself, there is oftentimes very little that medical science can really do... or at least there is an awful lot less than any of us would hope for. True, real progress is being in combatting neurological diseases, but it can't come fast enough for any of us.

I've experienced firsthand the reality of progressive neurological diseases and what they can do, not only to those who have the disease, but to those who care for them. I can say with some certainty that there is nothing good or noble about such diseases, except for that shown by those who must face them.

We need better treatments and cures for neurological diseases, and I believe we need a fundamental shift in the priorities of America in order to most rapidly find our way not only to a cure, but to a nation that shows compassion in its policies to those who need it the most.

We must move from a society of oftentimes irrational fear and division to a society of unity with hope for the future, based on reason and on actions. A neurological disease is hard enough to live with, both for patients and for caregivers. It's harder still when you are left struggling, trying to find the strength you need to make it through the day.

I'm sure that many of you have heard Barack Obama speak by now, and know that he is a charismatic, inspiring leader. But I'm equally sure that some of you have questions as to whether his talk of change and hope also comes with substance, especially as it concerns his plans for healthcare.

I'm here to tell you that yes, his plans do have real substance to them.

 So, after doing the research, I can say with confidence that Barack Obama's healthcare plan is one that should be far more likely to become a reality. It's the one that assures an easier transition for all Americans, while retaining the flexibility for later improvements -- and even mandates, if needed -- once trust in the system has been established. Its the one that will be available to and affordable for everyone, and which appears likely to insure the most Americans. And it's one that best addresses the needs of those who suffer from catastrophic illnesses. It will lower prescription drug costs, allow Americans to buy prescription drugs available in the United States through other countries, and prohibit big name drug companies from keeping generics off the market.

It has the support of former senior Clinton officials and of healthcare workers. It deserves our support too.

There are of course several other policy issues that you should all be aware of regarding Barack Obama, such as his longstanding support for stem cell research. When he was a member of the Illinois Senate, he was the chief cosponsor of the Ronald Reagan Biomedical Research Act, which specifically permitted embryonic stem cell research in Illinois. Barack Obama is also committed to strengthening and better enforcing the Americans with Disabilities Act (ADA) so that future generations of Americans with disabilities have equal rights and opportunities.

That is why I am proud to be an enthusiastic supporter of Barack Obama, and why I am reaching out to others affected by neurological disorders who have a good idea of the great difficulties my family went through, encouraging you to speak out and show your support for Barack Obama in this upcoming election.

Barack Obama has always been clear throughout this election that this candidacy wasn't about him. It was about us. It's about what *WE* can do to change our government.

One thing all of us can do, regardless of our political affiliation, is to take the time to let him know of our concerns, and to help shape his policy, encouraging him to commit to increased research on neurological disorders. The time we can do this most effectively is now, when he most needs our support.  Please, take this time to visit his website at http://my.barackobama.com/page/s/mypolicy and to let him know that you support increased research for neurological diseases, so that he knows the scale of the problem and what is needed, so that he can help bring about legislation that will give all of us a little more hope for the future, and for the cure.

It is not enough for those who are struggling to wish for hope. We must try to make it for ourselves. That is why I have volunteered for Barack Obama's campaign on a local level, and why I am reaching out to a community of people I care about, on an issue I care about, in the hope that all of you, too, will take the initiative to keep fighting, keep smiling, and keep hope alive until there is a cure, no matter who you choose to vote for in the upcoming elections.

I will be around to try to answer any questions you might have regarding Obama's positions on issues related to healthcare, and look forward to helping do what I can at a grassroots level to help all of you have a greater voice in the kind of change that America so desperately needs. A reaffirmation of life and of that which makes life worth living. A new birth of freedom and civic involvement. And yes... real change, starting from the ground up.

May 2008 be filled with hope, promise and love for all of you.

Hey Everyone,

For those of you who read my earlier post and have been wondering about my partner, she's been doing great!  Medicaid is a pain in the ass, so she never did get to go so acute rehab, but she should be starting outpatient next month!  She can move everything now, and she should be walking soon after she gets the right therapy.  The only cognitive issue is her memory.  Her short term memory has gotten much better, but of course she will probably always need to write down important things (who doesn't, really?). 
It's hard to really tell where her long term memory is.  She insists that she still can't remember anything after 2004, but sometimes when I press her for details on our lives, she can give them to me.  Like, she remembered that my brother was autistic because she too has an autistic brother.  She also remembers every single word to every song she used to listen to, no matter how recently.  And when she looked at old pictures, she says she can "sort of" remember.
 I'm wondering if anyone else here has any experience with retrograde amnesia (before the accident).   Did you get any of the memories back?  How? 
PS  She just had her accident this past February.

 Hiya, my name is Rachelle and I'm new here. Anyways, since I am doing a project, I was wondering if anyone who has suffered from coma could please tell me what they experienced while they were in coma? What I mean is like for example, while you were unconscious, did you feel like you dreaming like you were sleeping? or was it pitch black? or did you not remember at all when you woke up? or anything else. Just details you saw/felt when you were unconscious. 
Thank you.

Please support Erin of projectdownload

I'm Elena Romanescu and I invite everyone to support author, cook, and humanitarian Erin of projectdownload.

Neil Gaiman (author of Stardust) and other celebrities have looked into this and mentioned it in their blogs - this is legit as far as I can tell.
Encouraging everyone to click this link: http://www.projecterin.com/help.html and download a short virus-free text file to support my friend Erin's lifesaving brain surgery!

She's a 29-year old woman in Oregon living with two disabling, painful brain malformations (Chiari and cerebral lesions) and needs to raise money for surgery that's not covered by Medicaid. The hospital and regular doctors are covered - she just needs help with the services of a specialist neurosurgeon if the treatment is to proceed. The MegaUpload site will give her a cash prize if she reaches 5 million downloads. She does not want to accept charity or burden people, so this is her way of raising the cash.

Erin is also in the process of registering her cause as a regular independent 501 c 3 nonprofit organization, which will assist other people with large medical expenses after she receives the lifesaving help she herself needs. So she's reaching out to others - and I may say, this whole operation has been conducted in a highly clever manner, involving creativity, humor, fandoms, etc.

She's a sweet person and a talented writer with a great sense of humor who loves novels, cats, cooking, and sci fi - and she had a seizure recently and lost a whole year of memory. She urgently needs the surgery so now would be a great time to click: http://www.projecterin.com/help.html

For more information on this, you may visit her Facebook or website:
http://projecterin.com/
http://www.facebook.com/group.php?gid=19258401720&ref=mf

Here's the community she and friends have put together on LiveJournal: http://community.livejournal.com/projectdownload/profile

We are brainstorming promotion and fundraising ideas and looking forward to uploading some kind of funny serial story, music or graphics as a free treat for people who visit the site.

as a family member of someone who suffered a brain injury, what do you do to deal with it.

I am so worried about my dad all the time, and can't be with as much as I would like, I only get down to VA once a month. I call to check up every day but its still just...really hard.

any advice on coping with this situation?
at all?