Thursday, December 11, 2014
Nine year old Sophie Fellows from near Burlington, Vermont found out last week that she had a brain tumor. She plays the violin. She is hospitalized in Boston and is scheduled for surgery tomorrow (12/12/2014). Her music teacher brought the Christmas concert to her. She played her violin and the class performed a medley of Christmas tunes. Best wishes to Sophie for a speedy recovery and many thanks to the music teacher and friends who brought Christmas to Sophie!
Shawn Monti, a Florida deputy, was diagnosed with a glioblastoma. Surgeons at University of Miami Hospital used fluorescein as a marker in his brain. It made the tumor glow. All of the glio was successfully removed. The injection was a new thing that seems to be useful as well as ground-breaking. Best wishes to Shawn for a complete recovery!
Patients with pituitary tumors in a University of Rochester School of Medicine/University of Rochester Medical Center study had something called diffusion tensor imaging used on them which could predict how much vision they would recover after resection.
Researchers at the Baylor College of Medicine were able to identify the gene responsible for the mutation that leads to familial glioma. The gene is called POT1. The research study was written up in a peer review journal. It is suspected that five percent of all brain tumors have a genetic component.
Seven year old Kyanna Darnell was recently diagnosed with a brain tumor that is both inoperable and non-responsive to chemo. Her community in Wisconsin has come together to raise funds for a trip to Spain. It is hoped by Kyanna's parents that a specialist there will be able to offer life-saving (and not merely life-prolonging) treatment.
Her go-fund-me site is located at
and her t-shirt site is located at http://teespring.com/teamkyanna
Kyanna has named her diffuse intrinsic pontine glioma Flutter.
Best wishes for recovery to Kyanna and a huge thank you to all the folks who are making this trip happen for her and her family.
Engineers at Tufts in Boston have developed a new way of measuring brain damage arising from a variety of neurological events and disorders. It is called coherent hemodynamics spectroscopy ( or C.H.S.) and it involves non-invasive scanning of the brain and the use of algorithms applied to the data obtained from infrared lights. It sounds pretty high tech. This C.H.S. will be used for patients presenting with traumatic brain injuries as well as those who evidence some kinds of dementia, and some kinds of stroke.
An article from Medscape confirms two studies which failed to replicate an earlier study demonstrating possible effectiveness of administering progesterone immediately after an event leading to traumatic brain injury. Although the news was disappointing, it is better to know what is effective and what is not effective rather than subject patients to treatment which does nothing.
And finally a study conducted by John Hopkins Institute and University of Alabama at Birmingham has found that brain tissue of cadavers who were known to be on the autistic spectrum in life had activated (or switched to the on position) microglial cells which have something to do with immunity and inflammation. Because gene expression testing has to be performed on specific tissue of interest (rather than on any tissue like in regular gene testing), cadaver brains have to be used rather than live people. This study does not mean that brain inflammation causes autism spectrum disorders. It does mean that the next question to be researched is whether or not treatment of inflammation can make autistic symptoms go away. I figure it won't but I'm not any sort of scientist so I could be really really wrong about that. The outcome of replication research will be interesting to watch.
I am the author of "Another Atheist in Recovery" (from addiction, not t.b.i.) and co-author of "Up the Rebels" (a novel). Both are in ePub format without any D.R.M. because I hate D.R.M. and I chose a Creative Commons license for my work deliberately so that the books can be uploaded to the torrents by anyone who wishes to.
Stay warm and stay motivated!
~ sapphoq healing t.b.i. ~
Monday, November 24, 2014
I did it!
Last week, I published two e-books.
A friend and I wrote Up the Rebels! together. It is a fun story about a fellow named Jesus born in Newark, New Jersey,
The cover features a picture of a funky bus that I took on a visit to San Francisco:
My second book I wrote without a co-author. It demonstrates how an atheist can work the twelve steps and remain clean without any higher powers. I had to re-write the steps in order to do so. Recently I celebrated thirty-four years of continuous clean time. If you are in recovery, you may want to take a look at Another Atheist in Recovery at:
The cover is of a trail that my dog and I enjoy walking:
sapphoq healing brain damage says: In my determination not to allow my disability to beat me, I decided that if I want something different, then I have to do something different. It took over ten hours for me to learn how to format my e-books. And countless more hours to write and re-write them. Risk-taking is risky. Endeavoring to achieve a dream took hard work. I had to battle my severe fatigue while doing it. I did it. And I am still writing.
Remember: It takes courage to dream new dreams. And yes, I believe in you.
I can be found at Twitter(tm): https://twitter.com/spikedupfrog
Thursday, November 06, 2014
A woman named Amy Morosini from Moraga in California came in third place in an Ironman 70.3 triathlon over in Augusta, Georgia in the female physically challenged division. I believe the triathlon involved swimming, biking, and running.
Amy is one of us. She sustained a severe T.B.I. back in 1977. The professionals involved in her rehabilitation were not sure if she'd ever walk again by herself. Amy did. She currently serves as a volunteer fitness instructor at a V.A.
Kudos to Amy Morosini for being a true winner!
Monday, October 27, 2014
Yesterday, I had an achy head. Not exactly a headache-- ever since the blocks put into my skull, I rarely get full-blown headaches or migraines-- but something that hurt. Sometimes I will take an over the counter medicine for this and sometimes I won't.
Challenge and rest are both important when dealing with the damaged brain. I have to challenge myself enough so that the brain can improve. I also have to rest enough so that the brain can improve. Managing a balance between rest and action is tricky.
I felt it yesterday. The physical achy in the brain coupled with the idea that I was experiencing the beginnings of "information overload." Crap. I was busy and I did not want to slow down.
I had to slow down. I had to drag myself from my reading (the cause of the info overload) and force myself to do something else less taxing. I had to take a rest.
Often it is a physical rest that I require. Once in awhile, it is more that I need a change of scene coupled with a change to a less challenging activity. Yesterday, I needed the latter. I went out with my housemate for a bit. I felt better.
The rest of the day, I monitored myself. I usually nap in the afternoon for an hour. Yesterday was no exception. The achy head stayed gone. I was happy about that.
~ sapphoq healing brain damage, but not completely ~
Thursday, October 16, 2014
I myself cannot partake of marijuana safely. In fact, marijuana was a factor in the motor vehicle accident that left me with a traumatic brain injury. [The other driver claimed he had smoked "just one for the first time ever."] Even so, I think marijuana should be legalized.
Of particular interest to me are the stories appearing about the protective effects of marijuana in regard to brain injuries. An article from Fox News admits that reefer may actually protect neurons. https://www.foxnews.com/health/2014/10/13/pot-tied-to-fewer-brain-injury-deaths-study-says/ Although the study was not able to distinguish between those who use pot once in awhile from those who use more often, the conclusion was that marijuana ought to be investigated more thoroughly, especially in light of medical uses. I will be following this closely for follow up studies to see if they can replicate the lower death rates from traumatic brain injuries found in the one study.
Other articles referring to the same study:
Friday, October 10, 2014
Learning how to make tags and e-stationary progressed into using my pictures as backgrounds. Colors and textures make me happy. In that spirit of happiness, I present you with some atheist quotes and other stuff that you can use if you want to:
And here are some phrases that are not related to atheism for your use if you want them. Because [it seems to me] that a high percentage of folks recovering from traumatic brain injuries that I've met [unlike me] are not atheists, I thought it is only fair to include regular stuff too. Because the words and phrases were short, they look okay with different stuff applied to them. Shiny!
So, more free tags for your use. The atheism quotes were pulled off the web. I took the photographs with my cheap digital camera and altered them using my legally obtained copy of software. Enjoy.
As usual, save to a space on your hard disc where you can find them again. No hot-linking.
sapphoq healing brain damage
Monday, September 29, 2014
I first started experimenting with making tags and e-stationary because Jeremy Crow introduced me to it sometime after my motor vehicle accident and subsequent diagnosis of traumatic brain injury. I like taking pictures and I like making backgrounds in particular.
Hobbies are good things to have. They force our brains to solve problems and give us pleasure. Have you picked up any new hobbies since your brain injury?
I took the picture of the moose, and a picture of the lawn [used in the background] and altered them on my legally obtained digital photography software. I added the words. If you want any of them, please right-click and save to your "My Computer." Enjoy. You can use them on the Internet at will.
|Eat more beef.|
|I like BIG bucks.|
|Like a BOSS.|
I remember being a teen and living in "whatever" mode.
Friday, September 12, 2014
A 24 year old woman in China was discovered to have no cerebellum. The cerebellum is the part of the brain that is responsible for motor functions i.e. walking, locomotion; word formation via the tongue, teeth and mouth; and may also be indicated in some cases of epilepsy. The woman, considered to be mildly developmentally delayed, walked and talked late. She had balance problems her whole life and a slur quality to her words. In spite of her difficulties, she is married and has one child.
C.N.N. Health has a list of ten apps that are thought to help with brain training at http://www.cnn.com/2014/09/09/health/brain-training-apps/. I cannot vouch for them as I have not tried them. What I will say is that I've found Tetris, exercise, and patterns to be best for me in terms of helping my brain function well. I also need a schedule-- something that I've always resisted. You?
A Boston internist discusses her brain abnormalities due to multiple sclerosis and her feelings about it at http://commonhealth.wbur.org/2014/09/making-peace-with-my-abnormal-brain. Definitely worth a read for anyone interested. I know it's not "traumatic brain injury" but I think some of us might like to know about other brain drains besides our own.
A sad story from Morrow, Ohio. A high school football player injured in a crash has now been declared brain dead. http://www.wlwt.com/news/little-miami-school-district-says-injured-student-is-brain-dead/28031170. Yeah, we all have problems but we do have the distinct advantage of being alive.
Professional football players have a higher than average incidence of brain trauma and long-term neurological defects and diseases than are present in the general population as reported at http://www.nytimes.com/2014/09/13/sports/football/actuarial-reports-in-nfl-concussion-deal-are-released.html. I have no yearning to play football myself although I did have to be forbidden by a chirodoc from entering a contest. The contest involved sliding down a hill full of snow in a box. The prize was a trip to Aruba. That might have been nice to win but the chirodoc just stared at me and said no way.
Tufts U reports that brains can be trained to prefer healthy food over crap. http://www.utsandiego.com/news/2014/sep/12/train-your-brain-eating/. I figure there might be something to that. I've been endeavoring to lose my sweet tooth for some years now. There are small indicators of partial but not complete success. I do like to exercise now and that is certainly something.
Finally, the folks from Time [magazine, but on-line] tell us that children from South Africa are at highest risk for fetal alcohol syndrome. Babies are born with that when their mothers drink during pregnancy. How much a mother would have to drink is unclear. http://time.com/3342053/this-is-your-childs-brain-on-alcohol/.
The title of the article is misleading. I was expecting yet another primer on why adolescents "should not drink."
A couple of things about the relationship of addiction-- whether limited to alcohol or including any and all drugs-- to traumatic brain injury: The probability of addiction goes up after a t.b.i. Those of us who are in recovery have a higher probability of relapse for a couple of years after a t.b.i. I managed to escape relapse because I increased the stuff I do in order to remain clean from active addiction.
I appreciate that no one likes the suggestion that one ought not to do something or other because of some risk factor. I certainly don't like that stuff either. I gently urge you to not drink alcohol or use street drugs for the first couple of years after your traumatic brain injury or acquired brain injury [such as stroke]. If there is any question about your level of consumption or ability to control what happens when you do party, I urge you to get screened for addiction. An active addiction problem hinders getting the best recovery that we can get for our brains after a t.b.i. or a.b.i.
So that's all for now! ~ sapphoq healing brain damage
Tuesday, August 19, 2014
Some physician somewhere that I had to go see-- and I don't remember which one although I suspect it was the no-fault insurance company doctor. No-fault means "It ain't our fault so we ain't paying"-- gallantly informed me that since there was 'nothing wrong' with my inner ears ergo I do not have any balance problems. Dude clearly hadn't seen me in action. I can fall on level ground.
The needle-sticking neuro-doc directed me to tell him right away if I ever got dizzy. I wasn't dizzy. The room was dizzy and slid slowly to the left. Still does. He didn't ask me to speak up if the room got dizzy. So I never told him. Hey.
It was the chiro-doc who first educated me about the two vertigos. The internal vertigo means I am dizzy. The external vertigo means the room is dizzy. I have the second one. The room slides slowly to the left all of the time. During attacks of vertigo [and I've had a few of them], the room twirls to my left a bit faster than usual and also bobs up and down like ocean waves. The room and everything slides to the left. I fall to the right.
Yes, I fall more often these days. The latest fall involved a spill off of a step. I landed *s p l a t*
"Leukemia?" I asked.
"The bruises. And the lumps." I pointed to my lower legs. "I'm going to have lumpy legs forever."
The anxiety was pre-injury but let us just say that the t.b.i. did not improve that aspect of my psyche.
I don't have leukemia. Armed with an explanation of exactly how bruising and lumps work, I left fortified with the knowledge that this may take up to two months to heal.
I did mention that I went *s p l a t*.
"You aren't using your cane," a buddy of mine accused me later.
I shrugged. I've fallen with the cane too.
sapphoq healing traumatic brain injury says: Balance is one of those things that can be worked at and I do. Even so, I still go
*s p l a t* once in awhile. No reason to quit. I keep striving.
Monday, August 11, 2014
After my traumatic brain injury, I used to think frequently that "Not so many people give a crap about concussions or about t.b.i." That changed. First there was some news about our veterans returning from the battlefields with brain injuries. [I do have several relatives involved with the Wounded Warrior Project]. Then people decided to get excited about concussions in professional sports and in high school football.
Attention can be a good thing. Awareness gets raised that way and suddenly one community passes a law about bicycle helmets. Another implements guidelines for high school athletes who get their heads banged in the field.
But attention can also be not so good. When the populace is not exposed to original research-- and don't know how to interpret it if the data was made available-- articles written for common folks can be mystifying and contradictory. In the references below, articles have maintained that either location of impact has little to no impact upon outcome or that top of the head impact is worse than other areas and is more likely to cause unconsciousness. Or that high school football players are most at risk for permanent cognitive effects.
Do you want to believe the professional athlete who has had three concussions and is not fazed by the idea that a fourth can end his career? Or do you want to believe those folks who are no longer able to work after what was initially diagnosed as a "brain bruise," "a concussion," "post-concussive syndrome," or nothing? Or the guy in the sailboat race who was hit hard by the boon in an accident, gets hospitalized for several weeks and almost dies, can return to work but is told he cannot ever sail again? Another injury to his head like the last one may well be his last one.
The thing is, every head injury looks different. Whether it is a concussion-- a brain injury with no lasting effects-- or a brain injury that is judged to be a traumatic brain injury (which has lasting effects), or an acquired brain injury (from stroke or brain tumor removal etc.), every single head injury looks different. The t.b.i. survivor who did not lose consciousness at all may in fact be more permanently disabled than the survivor who arrived to the emergency room unconscious. Add to that, the reluctance of the adolescent to admit to having cognitive symptoms or how badly his or her head hurts and the denial of the professional athlete who figures the glory of the game is of higher priority than the integrity of the brain.
sapphoq healing traumatic brain injury says: Those of us who have had brain damage know how serious any injury to the head can be. We also know that repeated concussions can alter brain functioning permanently.
The article that I liked the best.
From an attorney website, sorry.
Guidelines from the Mayo Clinic re: sports-related concussions in schools.
Saturday, August 02, 2014
Even though there really is no "treat" in the word treatment, Medicaid denying access to services for a young man with a complex set of behaviors related to the after-effects of his traumatic brain injury is-- in my unasked for opinion-- inexcusable. The young man is a resident of the state of Kansas. His mother does not know what to do with him or for him. She cannot handle him due to problematic behaviors which have caused him to wind up in jail. While in jail, he had a seizure. The seizures are another, ahem, "gift" of his damaged brain.
My own experiences with insurance companies causes me to believe pretty much that they are not interested in paying for t.b.i. services. Especially when no-fault car insurance is in effect. No-fault simply means "This ain't out fault and we ain't paying." The workers' comp company was similarly disinterested in paying my bills. Consequently, the only therapies I received were physical therapy [which did help immensely], vision therapy [which has not been medically proven], and a few sessions with a quack "cognitive art therapist" who threw me out because I refused to go to her personal internist to be prescribed medications. [I already had my own most excellent professionals in place]. The word quack is used as an adjective. People who claim to have a PhD [thirty-five bucks and a copy of a book describing her own history with brain injuries-- nine to be exact-- got her a piece of paper] from an alleged mail-order fake college may not be totally honest about their qualifications. I was told in t.b.i. chat that I had to take charge of my own rehab. This certainly has proven to be true.
But the young man in Kansas is not able to do what I did. Some folks can't because of their level of impairment and that is a fact. Period. Meanwhile, Medicaid refused him admittance to a long-term program of six months to a year as an in-patient in a hospital as a patient with t.b.i. I feel bad for both the young man and his mother.
It seems that unless news items involve the word sports or the word veteran, some percentage of the population does not understand, does not wish to understand [in the case of employers and past employers], or cannot understand that head injuries can bring on complex symptoms which don't go away by wishing. A Vermont ski area certainly does not wish to understand [in my opinion via perusal of a court order] that the head and the neck are connected and that headaches certainly do originate in the head. I feel badly for the young man involved in that court case. He was a volunteer at the ski resort and was severely injured when snowboarding off the mountain. His injuries included but were not limited to a traumatic brain injury.
sapphoq healing brain damage says: Rehabbing someone with a traumatic brain injury costs money. Every brain injury is different. What happens to us in the aftermath may be very complex. We who have lived through brain injuries are people and we deserve competent treatment. What price are you insurance companies putting on our heads??? FAIL.
Tuesday, July 29, 2014
Out of all of the professionals and specialists that I've dealt with in respect to my traumatic brain injury, there was a grand total of one-- and only one-- who told me that I was capable of learning how to control my impulses and harness my dis-inhibitions. Let me explain further:
Go to any brain injury unit and you are likely to find patients who curse fluently. I'm not claiming pre-injury innocence. What I'm saying is that cursing originates from the more primitive, reptilian part of the brain located deeper in than language is. Hurt a brain, you will probably hurt communication but the cursing may remain more fluent than language skills for a time.
I was talking with a friend who is eighteen months away from his stroke. He told me that he was having trouble with just blurting things out. He was astonished when I said that he could learn to govern that. Blurting things out and cursing both have a similar emotional component to them, to my way of thinking.
I also had experienced those sorts of demands from my fractured brain. I learned that when I was feeling a pressure to "Say it, just say it!" that was when I almost certainly should not "Just say it." And the cursing thing? I found out that it was easier for me to strive not to curse at all than it was for me to give myself permission to curse at some times and not at others. Learning not to insert the f-bomb into every other sentence and learning not to blurt things out were two things that helped me feel some semblance of control during a time when the world was still wobbly and rotating slowly to my left.
Was it difficult and challenging to develop some self-discipline? Yup. But I worked on it and I continue to work on that because I have found the results to be rewarding. Not feeling driven to tell my very proper mother-in-law filthy jokes over dinner in a restaurant made the meal go better. I was happier being able to blend in a bit. And m.i.l. certainly was happier too.
Do I curse now? Yup. A lot less than post-injury and less than my pre-injury days too.
Self-discipline is something that I found to be worth working for. I tell myself daily, "Get up, clean up, walk the dog, go to the gym. Your brain damage is not an acceptable excuse for your laziness." And so I get up, clean up, walk the dog, and go to the gym. I still have to rest during the day however I am getting stuff done now. And that feels good to me.
There are bunches of stuff that is no longer automatic for me. I have to think through some tasks before I am able to do them. I have to concentrate on where my feet are going as I walk so I don't fall. I have to have things put away in the same places today so that I can find them again tomorrow. Supplies for cleaning the floors go on one shelf on the back porch. The laundry bag lives next to the washing machine. The stationary, bills, check book, stamps, and pens are kept in the desk. I still struggle with organizing today but not as much as I used to. I can get more done because I am not stumbling around the house in a blind rage unable to find the vacuum cleaner bags.
sapphoq healing t.b.i. says:
If It's Worth Having, Then It's Worth Working For.
If It's Worth Having, Then It's Worth Working For.
If It's Worth Having, Then It's Worth Working For.
Monday, July 14, 2014
I noted quite a few feel good stories about how to prevent Alzheimer's in the news tonight. A large Finnish study has concluded that diet, exercise, and cognitive stimulation may stave off the dreaded disease. Keeping up social contacts helps too. Folks with A.D. may experience decreasing agitation by being allowed to work in flower boxes or raised gardening beds. Losing sense of smell is bad, m'kay?
That's nice, I guess.
It's just that none of this is really news. Professionals who are actively involved with traumatic brain injury patients have been telling us for years to exercise, eat right, rest as needed, and do kiddie brain games which are freely available on the Internet. Having some sort of social life and gardening helps us too. Those t.b.i.ers who have lost their ability to smell may have temper out-bursts. The two areas of the brain involved in olfactory identification and emotional regulation are neighbors.
The Finnish study will be subject to peer review and have to be replicated of course.
My questions are many: Why focus exclusively on Alzheimer's? Why not include other non-reversible dementias? Why not include folks who have been diagnosed as having mild cognitive impairment? Why not include folks who have acquired or traumatic brain injuries? Were folks included who have the genetic make-up that dictates early-onset Alzheimer's? What kind of exercise and for how long at a time and how many days per week? What kind of diet? How about the role of rest? Sleeping disorders?
sapphoq healing traumatic brain injury says: I remember when hospice [around here at any rate] only took terminal cancer patients. People with A.I.D.S. were refused hospice services. Finally, someone got a clue and p.w.a.s were allowed into the death with dignity and free from pain fold. Nowadays, people with terminal neurological disorders-- including dementias-- are also able to get hospice if they meet the eligibility requirements.
I envision a world where research will include other forms of dementia as well as A.D. Yes, a world where neurologists and research scientists will recognize the commonalities between the different groups of people they serve instead of focusing on our different labels. A world that will not allow quasi-religious bodies and organizations to shut down funding for research based upon their beliefs rather than the well-being of the rest of us.
It's good to know where we fit. A well-run traumatic brain injury support group is a treasure. An e-board focusing on dementias as experienced by the folks who got it as well as their family and friends is a wonderful thing. Anytime people gather to create systems change, something powerful happens. Our agendas may be somewhat different by necessity. Let us not be blinded by that. All of us together is no longer a minority but a force to be reckoned with.
some feel good articles:
Sunday, June 01, 2014
I've been a hiker and backpacker for a number of years, both before and after the scrambling of my brain that occurred during my motor vehicle accident. My brain's name is Briella-- still brilliant but a bit sideways. Vision begins in the brain. Besides having double vision in one eye and now having face blindness [I would say "suffering from" only I don't feel like I am suffering from anything], I am apparently no longer able to recognize poison ivy.
Most fortunately, some years ago I had a flat-coated retriever who was absolutely nuts about the stuff. Dogs are generally not allergic to poison ivy. He used to roll in it, dig it up, toss it around, eat it. Then I would break out in that certain rash. The first summer with him, I had poison ivy six times. I figure that dog is the reason why I have very mild reactions to the leaves of three now.
I've been weeding in the garden. During the first few years of living with my t.b.i., I purchased several berry bushes and planted them. I don't remember what kind of berry bushes they were. This is a problem now. I do have a rather prolific vine thing growing in the plot where I plopped the berry bushes. It is currently full of white flowers. When I walk by it, I feel little itches on my skin. [There is a particular weed in my garden too that causes the little itches but which I know is not poison ivy]. I go inside and I scrub my arms and hands and then that's the end of it.
I've never eaten the berries off of the prolific vine because I cannot tell if the thing is a version of poison ivy or if it is some kind of raspberry or something. This week, I will hunt through my plant identification books in hopes of figuring out what the vine actually is. If is it poison ivy, I suppose I will put on long pants and a long shirt and thick gloves and yank the stuff out. If not, then I will probably want to sample the berries this year. And I will also have to investigate the berry plot. Maybe there are berry bushes growing in there and maybe the bushes died.
sapphoq healing tbi says: Now that I have some distance from my car accident, I suspect that the changes in my personality and my neurological functioning bother other people a great deal more than they bother me. I don't feel like a victim. I keep striving.
Most days I can say with some confidence this: It's good to be alive yo!
Wednesday, May 14, 2014
Yes, I am angry. This "donut hole" crap needs to be dumped. Give us regular insurance with regular coverage at regular prices [just like everybody else; and NO, not ObummerCare]. I'd be happy to pay more for my insurance as long as I get the same coverage for my meds that I got last year before I was forced into Medicare. [Another long story and one you will not be reading about today].
Where are the old people, senior citizens, and people with disabilities who are "too rich" to "qualify" for Medicaid protesting about this donut hole crap??? We should be revolting en masse. We should not be forced to apply for, I mean beg for, funds from various Big Pharma companies to help us out of the donut hole. We did not work most of our lives for this.
We are not in the same class of people that like hand-outs. We don't want your stinking hand-outs. We want our medical insurance cards NOT to have the word MEDICARE stamped on them.
What you politicians, medical insurance companies, Medicare, and Big Pharma are doing to us is not acceptable.
Business as usual is not okay.
cross-posted from radicalsapphoq:
If you have a traumatic brain injury [and/or other disabilities], be prepared to be royally screwed by your medical insurance. Particularly if you are on Medicare but not yet sixty-two and therefore not qualified to apply for your state pharmacy discount program. And particularly if you are married, have some money in savings for emergencies, and have worked most of your life. More so if you are taking psych drugs and asthma drugs.
The donut hole is coming for YOU.
In May or June. Not in October or November.
Having been told that you absolutely do not qualify for the "help" to pay for your meds necessary for your life and well-being, you understand that you are to magically come up with 4500 or 4800 dollars to pay for the meds during your donut hole experience [the amount that you must pay until your "catastrophic" medicine coverage will kick in].
Death panels? You know they are already here. They are called "medical insurance companies" and sometimes "Big Pharma."
You know that they want you to die.
Friday, April 11, 2014
If you-- as the administrators of a human servitude agency-- are going to claim expertise in "treating traumatic brain injury," then please remember that t.b.i. can happen to anyone anywhere anytime-- including to your staff members-- without assigning fault.
If you-- as the administrators of a human servitude agency-- are going to assign fault to your staff members when they come down with a traumatic brain injury, then your so-called expertise has failed the compassion test.
If your expertise-- as the administrators of a human servitude agency-- has failed the compassion test, then you do not know that traumatic brain injury can happen to anyone anywhere anytime, including to your staff members.
If you-- as the administrators of a human servitude agency-- do not know that traumatic brain injury can happen to anyone anywhere anytime including to your staff members, then you are not worthy of your reputation as an expert in "treating traumatic brain injury."
If you-- as the administrators of a human servitude agency-- are not worthy of your reputation as an expert in "treating traumatic brain injury" then I am free to ignore you, disregard you, or tell the truth about you as I choose.
Fact: Your day program staff have helped many people with traumatic brain injuries. It is an excellent program and worthy of recognition.
Fact: You the administrators have no clue about how to humanely treat your [now former] staff members who has come down with traumatic brain injuries through no fault of their own.
Saturday, April 05, 2014
I was at a workshop recently where leaders of some committees were speaking. One such committee had the title "special needs" in it. The man was speaking about an experience that he had had while volunteering at a day program that warehouses survivors of traumatic brain injury five days a week for five or more hours a day.
The earnest volunteer found out that a woman who refused to read anything in a group setting-- she would throw the book across the room whenever asked to read-- actually could read words if he pointed to them individually. "They run together," she shrugged when carefully questioned, "so I tell people I can't read."
The volunteer did not know that eighty percent of t.b.i. survivors have visual perception/ ocular-motor dysfunction/ visual processing problems. "The eyes are an out-cropping of the brain," I told him. "Large print helps because we need more 'white space' between the words." I could tell this was new information to him. Why oh why didn't the day program address this problem among its' customers? We are fortunate to have some competent physicians in the area who are well-versed in complications after a brain injury, including several eye docs.
The book-throwing woman did not have to suffer the humiliation of being asked to read over and over again in spite of her protests. The company who ran the day program certainly could have fostered a visual eval for the woman. The visual problems that we have are not related to visual acuity. [Visual acuity is what is measured by the standard vision exams. Think Snellen eye charts and 20/20].
Brain injury professionals in various disciplines need to communicate with each other for the good of their patients and customers. I expect competent treatment when I avail myself of any medical or other professional services. That an agency which conducts any sort of day programming for brain injury survivors would not educate its workers and volunteers about a very common complication for us is inexcusable. Period.
Traumatic brain injury is frustrating enough, especially early on after diagnosis. To have professionals not know how to address a basic complication really sucks.
Here are a few random stats and factoids about complications of traumatic brain injuries:
80% of survivors have visual perception/ocular-motor dysfunction/visual processing problems.
A thorough eye exam by a t.b.i.-competent professional is a must.
Large print may help [because we need more 'white space' in between words].
E-readers with anti-glare screens may help.
Wearing a visor may help.
20% of survivors have hearing deficits due to their t.b.i.
50% of survivors develop sleep apneas, either due to the t.b.i. itself or due to obesity which may come from inability or lack of motivation to exercise. Ditto diabetes.
Some percentage of survivors develop clinical depression due to damage in the left frontal-temporal lobe. If there was pre-morbid depression, symptoms may accelerate because survivors need larger doses of their psych drugs than before.
Incidences of addictions to drugs including but not limited to alcoholism increase after a traumatic brain injury [in comparison to the general population].
Survivors who were clean before their traumatic brain injury run an increased risk of relapse [in comparison to relapse among non-t.b.i.ers].
We do have well-developed senses of humor. We have to in order to deal with some of the less than competent "professionals" that we are exposed to.
The idea that "Traumatic brain injury survivors don't have a sense of humor" is a myth. With the lowering of our inhibitions comes the ability to laugh at what we truly find to be humorous and not to laugh when we don't think it's humorous. Those professionals who insist that we no longer "get" jokes usually are the joke.
sapphoq healing t.b.i. says: The onset of brain damage frees us from fulfilling societal expectations. This upsets some professionals. It leaves them to spin their wheels because we "don't co-operate" or refuse to conform to the status quo. When coming out of a-motivational syndrome into a level of determination that was missing in early t.bi. survivorship, we deserve to experience for ourselves the pushing against any limits imposed upon us by professionals. Sometimes, even well-meaning professionals believe in the fiction that surrounds life after a t.b.i. Sometimes, professionals forget that we are the experts on our own lives. If that hurts a professional's false ego, oh well.
Thursday, March 20, 2014
I am fortunate to have a variety of mentors who have helped me to learn how to continue living and having a life after my brain damage. I appreciate people who have believed in me enough to teach me about responsibility and dreams at a time when things were pretty dark. Traumatic brain injury changed my life. Although my life is different now, I still very much have a life.
Through my interaction with conservatives on Twitter (tm), I am reminded that in spite of my present neurological difficulties I can keep striving. I do not have to be a lump in a chair sleeping my life away to the drone of teevee talk shows. I can be a contributing self-supporting member of society. There is no self-esteem to be found in hand-outs. No one owes me a living.
Yes, I am an atheist. I have been a non-theist for many years. Even so, I can certainly learn from those who have differing religious viewpoints. I have found that in spite of my non-beliefs, I fit in better with those of a libertarian bent than I would have ever suspected. And I discovered Duck Dynasty.
The Robertson family is from around Monroe, Louisiana. They are proud red-necks. They make me laugh. They remind me of folks I used to know when I was living in Baton Rouge. They are practical and fun people. At the end of the show, they pray. They get to do that. I don't care. The right to self-expression is not limited to "those who agree with me totally on everything." I stand with Phil Robertson. He expressed his Christian beliefs in an interview with a magazine and the world blew up. He has an absolute right to do so. As a heterosexual man, he does not have to understand same-gender love and relationships. As a Christian man, he does not have to endorse something that he believes is wrong. No one has to.
Here are some of the things that I've learned through watching Duck Dynasty:
Being different is okay.
Doing stuff differently than other people do it is okay.
Building stuff is fun, even if it comes out weird.
I can express myself without cursing.
Family is important.
sapphoq healing brain damage
Wednesday, March 05, 2014
I don't like it. Not a bit. What is so "special" about the "needs" of disabled people? Of communities of disabled people? Yes, I have a traumatic brain injury. Yes, that means I have brain damage. But my needs are the same needs that everyone else has.
It all relates to F.-S.P.I.E.S.
Financial-- We all need money or something to exchange for goods and services.
Social-- We all need acquaintances, friendly folks, and friends. [Even if it is one friend].
Physical-- We all need clothing, shelter, nutrition. We all need to navigate our environment. And we all need exercise.
Intellectual-- We all need intellectual stimulation.
Emotional-- We all need connection.
Spiritual-- We all need awe or beauty.
All of you temporarily abled people can take the phrase "special needs" and stuff it along with the ideas that we ought to "Fight Against Autism," make clucking noises over the "stigma of mental illness," and declare all kinds of conditions to be "a brain disease."
Screw that. Screw all of it.
We, the disabled, have the right to name ourselves as we see fit. You, the non-disabled, do not have the right to invent fancy little demeaning labels. Take your words and your puzzle pieces and your nonsense away. We reject your control over our lives.
~ sapphoq healing complications from brain damage
Thursday, February 06, 2014
with much thanks to Nathaniel Branden. His website is located at: http://nathanielbranden.com/
When I got my traumatic brain injury, I was fortunate that my self-esteem was already in fairly decent shape. Some years prior to my accident, I had happened upon Nathaniel Branden's writing and read his books avidly. I used the complete the sentences program that I found in the back of most of his books, I did the work, I took action and -- tada !-- my self-esteem improved.
Two acquaintances of mine are now facing health crises that may potentially leave them with some degree of disability. That sucks. [N.B. Being able to get competent medical care does not suck.] Not everything can realistically be greeted with cries of "Happy Happy Joy Joy" nor should it be. Knowing is preferable to not knowing. At the very least, one can make certain decisions about the future that way.
It is my sincerely held belief that those of us who have faced any sort of disability or change in our health status with adequate self-esteem are better equipped to deal with the unexpected than those of us who suffer from lack of good-enough self-esteem. Having a sense of efficacy that I will be able to face any situation that I have to helped me to quell the panic with a search for everything that I could find out about traumatic brain injury. Living consciously enabled me to recognize my need for assistance and to ask for it as needed. Self-acceptance supported me in coming to grips with my disabilities as well as with my abilities.
Because my self-esteem is based on the stuff inside me that enabled me to get the stuff I got [which includes relationships with others as well as other stuff] rather than the stuff itself, I was far better off than someone who bases their self-feeling on what they do or what they have. Because my self-esteem is not based on the esteem of others, when a few of my long-cherished friendships came to an end due to my brain damage I survived anyway. I was able to come to terms with what parts was mine [my responsibility] and what parts were not mine.
If you are facing challenges due to a brain injury or other neurological condition or any other health crisis, I encourage you to read some Nathaniel Branden. Then, do the work that is necessary to raise your self-esteem. It helps.
sapphoq healing t.b.i. notes that: There are some things that some folks disagree with Nathaniel Branden about. This is natural and not a good reason to avoid his writing. Nathaniel Branden is an objectivist who had an affair with his mentor Ayn Rand. He is also an atheist and a libertarian. None of those things are a problem for me but they may be for you, I do not know. The two things that I do not agree with him on are his idea that hetero-love is superior to nonhetero-love; and his ideas on recovery and on surviving childhood abuse. There are many other things that I do agree with Nathaniel Branden on and those things far outweigh our differences. I say, give yourself a break and investigate what he has to say before deciding that it is not useful to you.
Monday, January 27, 2014
How unfortunate that some news reports are focusing on the idea that fish oil can "cure" severe brain injury, did in fact "cure" a teen's severe brain injury. I do indeed criticize the news media for the sensational titles given to many of the articles and reports about Grant Virgin and his awakening from a coma.
In perusing the results, we learn [from the titles alone] that:
Fish Oil Helps Son Recover from Brain Injury
Fish Oil Heals Injured Brain of Teen
Fish oil cures severe brain damage
Teen recovers from coma thanks to fish oil
To report that fish oil helps, heals, cures is yellow journalism at the very least. To showcase the family's belief that the fish oil helped is sort of okay. To admit that we do not know is true journalism.
[Sampling came from Google search: https://news.google.com/news/story?pz=1&cf=all&ned=us&hl=en&q=brain+injury&ncl=dw6-BhSPB-z6aVMhTN0NNCRwrLjpM&cf=all&scoring=d]
Sanjay Gupta is a well-qualified physician. He is in fact a neurosurgeon and is associated with Emory University. Here is the link to the video he did for C.N.N.:
A second link [first video on the right side entitled fish oil saves boy's brain?] to the same video:
In reviewing his video, I cannot fault his presentation as one other blogger did. [http://doubtfulnews.com/2014/01/is-fish-oil-a-miracle-brain-healer-cnn-does-irresponsible-story/]. The story of a teen who was severely injured and whose parents did not give up on him is a human interest story. Sanjay Gupta did an excellent job in that respect.
The need for medical research is dire in order to be able to gauge best practices in the treatment of people who are comatose due to serious head trauma. The research of course must be published in respectable peer-review journals, evaluated, and replicated by other research teams in evaluate the anecdotal evidence for the promotion of fish oil or some component in fish oil as a worthy addition to the arsenal for treatment of brain injuries. The research is being done. Until a later time, the Grant Virgin story remains anecdotal only in nature.
sapphoq reviews says: It is not my intention to cast aspersions on the loving family of Grant Virgin. Families naturally want to do something to help their severely injured family members. It is certainly not easy for a parent to be told that nothing can be done at the present time for their child until a coma runs its course. [N.B.: I also would have challenged the doctor from the emergency room.] I was glad to know that Grant Virgin received competent and specific therapies for his traumatic brain injury after his release from the hospital. I wish him and his parents the very best.
Saturday, January 18, 2014
The bird was hanging upside down from the feeder. He was almost frozen. He was not a happy bird. He was having a bad day-- no, not a bad moment-- a bad day. The weather had been miserably cold for a week. I found him there, removed him, and took him inside to warm him up. I set him free outside and he sang hosannas of gratitude.
No. That's not how it happened. I saw him there upside down, his feet frozen to a metal part of the underside of the bird feeder. I wasn't sure if he was dead or alive or in torpor or what. After some hesitation, I wrapped him in a yellow towel and took him inside. He made no noise whatsoever. His legs were messed up and at odd angles. If he was dead, it would have been a mercy.
I warmed him up by the radiator on the off-chance that he could be saved. The kitten came up and inspected him.
I put the bird still wrapped in the yellow towel in a basket in a tree in the sun. He was not there the next morning. I figured that either he had flown away or that a desperate hungry hawk or something ate him. He was back in the thick of nature however it went.
The fiction that I had definitely saved the little bird is preferable to what actually happened. We don't like messy endings in general. We don't like to read about little birds that might be dead or might have been eaten by a bigger bird. We want everything as it was before or even better than before.
But life is not like that. Mother Nature is a real Muther. Nature is cruel and stalking and predatory. Nature does not give one whit about any of our wishes, desires, or dreams. Life happens and death happens. Those who are born do not in any way make up for those who die. Oh perhaps in population statistics but not in any other way.
Even if the bird flew out of the basket, his life was not the same or even better as it had been before. His legs were injured. Even if they healed up, they were not "good as new." Even if he lived, he certainly was hobbled by his experiences.
sapphoq healing tbi says: Some well-meaning people want us to be like we were before whatever happened to each one of us that left us with damaged brains. They gush at us "Oh isn't it wonderful that the brain rewires itself?" We are beyond their gushing. We know that we are beyond magical yoga retreats and fish oil and stupid talk of brains putting themselves back together again "even better" than before.
Think before you open your mouth to impart some fake cure or false hope. Chances are, we don't want to hear those lies. Tell us to keep working at those things that we are re-learning. Tell us that each of us has to be in charge of our own rehab. Tell us that our lives are different. Tell us that life is neither fair nor unfair. Life is sacred and nothing is promised to us.
No, I am not "better off" than I was before the day that my life changed forever. No, brains do not rewire themselves to be exactly the way they used to be. Yes, I certainly do have a life today. This is not the life that I signed up for but it is mine. I keep striving to work around my deficits. I keep challenging my brain. I keep doing the things that I learned that I must do for myself in order to have some kind of a life. It is easy to sit around and mope because I have brain damage now. It is better to force myself to participate in my life. It is even better to work for what I consider to be worth working for. And having a life-- even if it is a different life now-- is certainly worth working for.