Wednesday, December 27, 2006


A standard protocol of treatment for moderate to severe traumatic brain injury in patients within the first week post-trauma is the administration of propalactic anti-convulsants in order to lower the risk of subsequent seizures. Hospitalized patients with coma states may actually present more difficulty in the recognition of seizure events than non-hospitalized conscious patients. T.B.I. patients are at a greater risk of developing epilepsy than age-matched controls (risk factor increase of 6.9%). T.B.I. patients who have one or more seizures during the first week post-injury are at a greater risk of developing epilepsy than those who do not (risk factor increase of 8%). Other risk factors [only one needs to be present] quoted in the same article are:
  • focal signs (as seen by neuroimaging techniques) at the first examination
  • missile injuries
  • frontal lesions
  • intracerebral haemorrhage
  • diffuse contusion
  • prolonged post-traumatic amnesia
  • depression fracture
  • cortical-subcortical lesions.
Although folks with mild Traumatic Brain Injury [i.e. not life-threatening, yet still may be life-altering] have less of a risk of developing epilepsy than those whose T.B.I. is diagnosed as moderate or severe, education on how seizures may manifest should be provided. Typical signs of seizure activity in those with mT.B.I.-- from the same article-- may include:
  • focal clonic activity of an extremity or hemibody
  • eyelid fluttering
  • lip smacking
  • episodic staring associated with motor automatisms.
sapphoq healing tbi says: The importance of observation of the mT.B.I.-er for possible seizure states needs to be stressed and included in emergency room aftercare instructions. Specific examples like those provided in the article are more helpful to carers than no examples at all [or no instructions given regarding these things, as in my own case] or the suggestion to return to the e.r. if the mT.B.I.-er is difficult to arouse.


The December Annual Meeting of the American Epilepsy Society saw the presentation of a number of significant papers on epilepsy including the recognition of a biomarker as a predictor for T.L.E. in studies of animals with brain injury, a link between the control of epilepsy fostered by treatment of sleep apnea [present in 47% of epileptics and in 50% of T.B.Iers], and the effectiveness of brain surgery in alleviating T.L.E. seizure states.

Medscape has resource centers devoted to various medical conditions, including one on epilepsy which can be found here.

"Currently, there are no reliable surrogate markers for epilepsy, which is one of the holy grails in all diseases. Right now we use interictal EEG spikes [to diagnose epilepsy], but they tend to be nonspecific and don't indicate where seizures originate, so they are less than ideal," Dr. Engel told Medscape.

Animal models of temporal lobe epilepsy (TLE), as well as human data, show that fast ripples are specific to the area of the brain that generates seizures. Furthermore, said Dr. Engel, research has also shown fast ripples correlate with the severity of epilepsy and are able to predict which animals will develop seizures following brain injury. [end of quote]
from 12/12/06 article by Caroline Cassells
Fast Ripples Making Waves as First Reliable Biomarker for Epilepsy

According to Dr. Malow, a growing recognition among the scientific community of a definite link between OSA and epilepsy led to the study.

One possible explanation for poor-quality sleep in individuals with epilepsy may be the tendency to have sedentary lifestyles and daytime sleepiness, effects that are frequently attributed to the sedating effects of antiepileptic drugs (AEDs).

Whatever the reason, she added, research suggests that poor-quality sleep can lead to increased seizures. While the mechanism is not entirely clear, the current thinking is that sleep deprivation increases neuronal excitability, which in turn triggers and increases seizure frequency. [end of quote]
from 12/4/06 article by Caroline Cassells Treating Sleep Apnea May Reduce Seizure Frequency in Refractory Epilepsy
Yet, despite enhanced treatment options, many patients are not offered advanced therapies, including epilepsy surgery, even though it can offer patients with temporal lobe epilepsy about an 80% chance of becoming seizure-free. [end of quote]
from 12/12/06 article by Caroline Cassells
Neurologists May Underrecognize, Undertreat Epilepsy

Other news from the
First North American Regional Epilepsy Congress: 60th Annual Meeting of the American Epilepsy Society
December 1 - 5, 2006, San Diego, California

This concludes a brief review of recent epilepsy news on .

sapphoq healing t.b.i.

Friday, December 22, 2006


Medical News Today at
reports that:

"A new cap that cools the heads of babies born with moderate to severe hypoxic-ischemic encephalopathy (HIE) was approved by the Food and Drug Administration (FDA) earlier today."

It is hoped that these caps will prevent brain damage in some of the babies born with hypoxic-ischemic encephalopathy and reduce the death rate associated with this condition. Currently, approximately 20% of HIE babies die and 25% of them are left with permanent disability. Before the approval of cool-caps, there was no treatment option available for this condition.

sapphoq healing tbi and abi

Wednesday, December 20, 2006


Science Daily reports what we've known all along: Laughter is contagious.
Researchers have pinpointed the pre-motor cortical region of the brain as the area that responds to laughter [and other things like smiles, cheers, and barfing.]

fMRIs showed greater responses to cheerful stuff like laughter and weaker responses to screaming and barfing. Science Daily wrote that this shows that laughter is more contagious than other "negative" stuff. [sapphoq's note: Thus, laughter is more contagious than barfing or chicken pox?]

sapphoq says: Some of us folks with traumatic brain injuries have a difficult time mirroring the expressions of those around us. Perhaps funny movies would be an easier way to re-learn some of this stuff, even if our sense of humor has been "altered" to something unrecognizable by the professionals.
Professionals often claim that we T.B.I-ers don't "have a sense of humor." That is more their failure to recognize rather than our lack. I spent many hysterical hours in the tbi chat room-- with folks who were like me-- trying to figure out the names of the seven dwarves. None of us did remember all of them and we frequently diverged into other names for the dwarves which were funnier than the originals.
At any rate, those hours in tbi chat were indeed healing for me and the beginning of being able to re-establish communication with others on a meaningful human level for me. We had our own version of the English language going on there called tbi-typese. [One friend remarked during that time that it was difficult for her to understand my e-mails. She didn't know tbi-typese. Re-learning how to spell came for me months later as I participated in various e-groups. She never did pick up on tbi-typese. That was her lack!]

So if any professional helper-person tells you that you, a survivor and thriver of traumatic brain injury, do not have a sense of humor, you have my permission to laugh at them however silently and to be assured that they are seriously wrong about that one.

sapphoq healing tbi

Thursday, December 14, 2006


Looks like there is an on-going dilemma developing in Maine. Yet another attorney of a man who has a traumatic brain injury is looking for a get-out-of-jail-free card. In spite of a t.b.i. suffered as the result of a car accident one week after high school graduation and personality changes, Todd Curry managed to pick up a degree and a career as a merchant marine. There were two girlfriends who had difficulties living with him, domestic violence charges dropped to "disorderly conduct," and a son.

The first girlfriend moved out because Curry was afraid of the house burning down. She was "not allowed" to install or use her dryer or burn candles or use night lights. She asked that Curry stay away from her. Seems he was driving down her road and shining his car lights into her new abode at night. He was allowed to keep his car. Todd Curry started a border dispute with his neighbors, allegedly believing that they were growing marijuana on his land. He shot his gun off on or near their property at night. He was allowed to keep his car and his gun. The last girlfriend would not press charges of domestic abuse so Curry was once again allowed to keep his gun. He used said gun to shoot his own son Anthony Tucker dead. Now the assistant D.A. has called for a psychiatric exam. Todd Curry's supporters are excusing his actions with a bipolar disorder diagnosis and repeated hospitalizations.

I don't buy this "My traumatic brain injury made me do it" or "My whatever made me do it" crapola and neither should any self-respecting person with any sort of disability. Add to it the idea that it's okay for those of us with serious psychiatric disorders [whether caused by or worsened by the insults to our brains] to have guns, well there is something wrong there with our thinking that is for sure. It is not okay for most all of us folks with a traumatic brain injury to have a gun. And it is not okay for most all of us folks with psychiatric conditions to have a gun. The average citizen can own a gun safely. We cannot.

Some of us with traumatic brain injury plus-- or even with just t.b.i.-- lack insight into our difficulties. Some of the rest of us do know but we go out and purchase guns anyways. Hardly anyone likes to admit that yes, we do have some limitations. Especially if those limitations mean that we pose a risk to society if we are allowed to own a gun. Then when we beat someone, stalk someone, threaten someone, kill someone, we run off to the attorneys who for a price are willing to provide us with the best legal defense possible. Which is our legal right.

How about the rights of people to live free of mental and physical intimidation? How about the right of a man's son to live a life instead of getting shot down like some animal out in the woods?
If we who have disabilities want "what everyone else has", we oughta take on some
responsibility for our bad behavior. In other words, commit the crime, do the time.

And by the way, in case anyone is wondering. I don't own a gun. In spite of the laws that say I can own a gun, I don't. I recognize my risk factors. See above.

sapphoq healing tbi

Wednesday, December 13, 2006



The Washington Post reports today that patients who have a first stroke caused by blocked or reduced blood flow may be at a higher risk for a second stroke.  120 patients were given M.R.I.s 24 hours after and 5 days after, and then at 30 day intervals after their stroke.  Those with brain lesions producing no symptoms were at a higher risk for a second stroke  and death from vascular causes.

The study done by researchers at the National Institute of Neurological Disorders and Stroke concluded that follow-up M.R.I.s can predict a second stroke more accurately than waiting for onset of symptoms.

Now if we could just convince the H.M.O.s of the value of this study.

sapphoq on healing t.b.i. (and a.b.i.)

technorati tags:, , , , , , , , , , , ,

Blogged with Flock

Monday, December 11, 2006


Based upon personal experience, I thought I would share these tips with you. Please remember when reading through them that I and others have tried to change things around and were unable to. Sometimes, quitting can be really healthy. Especially when the "fun" has been taken out of dysfunctional.
  1. Allow people to talk amongst themselves for ten minutes before moving on to "announcements."
  2. Make sure "announcements" take up fifty minutes.
  3. After announcing when the next Brain Injury Association board meeting is, make sure you continue to bitch about how some folks there aren't doing their jobs well, aren't worth their salaries, and so forth.
  4. After announcing the next series of Best Practices Workshops, make sure to tell everyone in explicit detail why you won't be attending.
  5. After announcing when the next annual Brain Injury Association conference is, make sure you talk about how they are big meanies for not letting you talk about how to run a support group.
  6. Talk about how "no one" wants to do anything for the support group. Make sure to itemize the failed bake sale last year in particular, the speakers you got and only five people showed up that night, and how you have been the leader of the support group for too long.
  7. Make blatantly prejudicial statements about non-christians, glbt rights, and anything else that will demonstrate just how wonderful you are. After all, only people who are exactly like you come down with traumatic brain injuries.
So there they are. The reasons why I dropped out.

sapphoq healing tbi

Friday, December 08, 2006


Some percentage of us [that means I don'tknow what percentage] who have traumatic brain injuries as well as some percentage of the neurotypicals have difficulties with crowds, noise, lights, overdoing, fatigue and all of that. It is the holiday season-- Christmas, Chaunakah, or other-- and stores are blasting christmas music, lights are flashing, and people are on the go, go, go. Here are some things I use to cope with the excessive stimulation of the season:

  • Shop at off-times. Use your computer to order stuff from the internet. Or order from catalogs via telephone.
  • You might want to consider asking someone else to drive.
  • Wear your brimmed hat, baseball cap, special glasses, sunglasses to cut down on glare and over-stimulation. If you have motility aids, now is not the time to leave them home.
  • Take anti-meltdown breaks. No one have ever argued with me when I retreat to a bathroom with "cramps."
  • Allow other people their joy. Sure, people assuming that you share their religious fervor can be annoying. Bell-ringers can be annoying. Ask yourself how annoyed you want to be.
  • If money is an issue, look for bargains off-season or little crafty things you can make instead. Can you draw? Bake cookies? Make cotton dishcloths? Those that value presents over our presence have their priorities mixed up. Their problems do not have to be ours. And, overspending does not help anyone.
  • Remember why you are doing this. Perhaps you celebrate a religious aspect of the holidays. Maybe you have kids in the family. Or you have some good friends to hang with.
  • Above all, quit whining. Some folks aren't alive to complain.
sapphoq healing tbi

Monday, December 04, 2006

traumatic brain injury healing 12/4/06

first, remember--
or write it down if you cannot remember--
your brain has been altered.

you are no longer the who
of who you used to be.
instead, you are altered
along with your brain.

second, remember--
or write it down if you cannot remember--
magic is healing
but not the way you want it to be.

after a time, you may remember
more about what is really important
and less about the labels
and the things
that cause bleeding
and pain.

after a time, your magic will fly
again and you will laugh,
but only after a time.

third, remember--
or write it down if you cannot remember--
that you are courage

and yes, it takes lots of courage
to dream new dreams.

Author's Notes: To those who know of the healing I speak,
who dare to dream new dreams,
who are willing to learn how to thrive in spite of,
who live in the silence ever more.

Spirit flies when we fly.


helpful hints when confronted with a changed brain

Traumatic Brain Injury is forever. There are some of the things that we and the people around us can do that help:

GET ALL THE HELP THAT IS AVAILABLE. This includes some form of cognitive rehabilitation, a vision check by a behavioral or developmental optomotrist, a complete audiology examination, services of a competent psychiatrist who understands traumatic brain injury, physical therapy, massage, vocational- rehabilitation assistance, job coaching, counseling, cognitive testing, brain injury specific support groups, tbi-specific chatrooms and e-groups...

I went to the local RCIL [Resource Center for Independent Living] to talk to a disability advocate. I also have permanent brain injury related vision difficulties. I was able to get specialized vision therapy and prism lenses. Proper medication helped me with a worsening mental condition. Therapy in a heated pool helped with my flexibility and my back pain. My mild expressive aphasia [expressive aphasia: I can't always find the words I want to say] and my central nervous system tremor [tremor: shaking without meaning to] are two of the other things that I just put up with.

REMEMBER THAT HEALING TAKES TIME. Learn to recognize small increments of progress. Be prepared for setbacks, mood swings, tantrums. Having a routine and structure helps with healing. So does exercise, nutrition, and rest.

I thought I would be able to pick up my old life and return to work within a matter of weeks. Instead, I found myself having to keep working at things that used to be automatic. I also lost any ability to multi-task [multi-task: do more than one thing at once: like look for a word in a book and have my husband ask me a question]. I had to learn how to do things in new ways.

FATIGUE IS THE ENEMY. Fatigue interferes with healing. 50% of all TBI survivors have a sleeping disorder. Advocate for referral to an ENT doc who will be able to screen for sleep apnea and narcolepsy.

My own sleep apnea was diagnosed a couple of years after my traumatic brain injury. I now sleep with a C-PAP machine because the sleep study showed that I stop breathing in my sleep. The C-PAP machine forces me to keep breathing and I feel more rested. I am no longer sleep-walking through life.

WE MAY NOT BE ABLE TO DO SAFELY EVERYTHING THAT WE THINK WE CAN DO. Our insight into our injuries and our changed personalities depend very much on the sites of our brain injuries. We may insist that we can drive even with severe field cuts [field cuts: what we can see is not wide enough to see to our left or our right when driving; or we may be missing parts of what we are looking at] in our vision. We may want to go to the gym when vertigo makes it unsafe. We may want to pick up with our lives long before it is possible. For some of us, we will have to learn the courage to dream new dreams.

I have to check with the people and professionals around me when I have a great idea about something that I want to do. I also cannot be on the go all day long like I used to. I had a career which I can no longer manage. I am in the process of learning skills for a new line of work.

HUMOR IS HEALING. It is natural to be oversensitive at first to the changes around us. Some of us lose friends who cannot handle the changes they see in us. Sometimes we find that we are making the same mistake over and over. Or we may forget things a lot, complain a lot, or not want to use aids to help us with everyday stuff.

I became a chronic complainer. Nothing was good enough. I no longer understood the people around me. I was too serious and very easily hurt.Reaching out to other survivors helped me to regain my sense of humor. I spent many hours with my on-line friends at trying to remember the names of the seven dwarves. I can laugh and my laughter frees me.

My life is different today. But it is still mine.

sapphoq healing tbi


Friday, December 01, 2006


By nature I am a list-maker. I make really good lists. Unfortunately, I cannot implement them. I have lists for sleeping, daily schedules, housekeeping routines, and all kinds of things. Recently, I came across a bunch of lists I had made pre-injury. I hadn't been able to manage time or anything else according to those lists either. Now, the after-effects of my traumatic brain injury has really messed with any organizational skills I possessed in those days when I was full-brained.

I threw out all of the meaningless lists and decided that I needed to start over with short goals. A couple of weeks ago, I decided that I would eliminate the use of sugar in coffee. I have been able to do that. Much to my amazement, there is coffee that I recognize as being horrid. The massive sugar-dumping I was doing was fooling my taste buds into thinking that all coffee tastes good. It doesn't.

Because I had failed so badly at list-making and long-term goal-planning, I am now setting daily goals. Today, my goal was to spend x minutes sorting through the piles of stuff taking over the dining room table. Previous goals to clean the house, sort and organize, follow various housekeeping routines were untenable. I could and did spend the x minutes today. The dining room table still needs work. It will take longer than x minutes to "fix this." My x minutes is a start though, a sort of goal-ette. I feel able to continue with setting a couple of short mini-goals every day.

The whole idea of healing is to expand my horizons, not limit my participation in the world. Being unable to organize my life has constricted my life. I am done with that. Little by little, with the help of my mini-goals and the lack of time-wasting lists, I continue to progress.

Googling "goals" or "setting goals" will yield results that lead mostly to programs which wish payment for their services. Money is at a premium at the moment so that will not be happening in my life. Consequently, I have to learn how to do this the old-fashioned way, without the helpful expensive software. Other people are able to do this without the software and I can learn how to do it too.

One short thing that is useful in setting goals is the acronym S.M.A.R.T.
S.M.A.R.T. can stand for a bunch of words but the ones I like the most are:

Specific, Measurable, Attainable, Realistic, Tangible.


Specific- Who? What? Where? When? Why?

Measurable- Can I put it on a chart?

Attainable- Do I have or can I get the stuff necessary to work on the goal?

Realistic- How much time and energy do I have? Is the time frame correct?

Tangible- Is the goal visible or is it mental masturbation?

With my mini-goals, the questions become focused to the here-and-now. Thus, I decided that I want to stop putting sugar in my coffee. That is specific.
If I put sugar in my coffee, that is a - and if I don't that is a + so it is measurable. [Even though I don't put it on a chart].
I am able to live without having sugar in my coffee. So it is attainable.
Not putting sugar in my coffee requires almost no energy. So it is realistic.
I have a cup of coffee in my hand without sugar. So it is tangible.

Remember, to keep your goals S.M.A.R.T.
And never give up on you.
Keep striving!

sapphoq healing tbi