My point is not that nobody ever recovers fully. my point is that whatever level of recovery that can be expected, they all require active participation by the patient.

As Donna said recently, every head injury takes away a little bit more. In order to get back the maximum amount of function. the patient must participate in the recovery process.

The first part of the recovery process is accepting that the problems are real. Then you start working to overcome them with exercises or develop work-arounds and accommodations for the dysfunctions.

When these have been done, the stress levels from the dysfunctions decrease enabling more recovery. Carrying the stress load of "When am I going to get better?" or "Am I crazy?" only complicates and delays recovery.

Dr. Scaer approaches this from the psychological angle. I and most in the brain injury community prefer to address the problems head-on.

If I had known 30 years ago what i know now, I would not have been so passive regarding recovery. I let the docs just give me some meds without any direction in exercises or other recovery methods. I had to figure out what worked by trial and error. There was much more that i could have done. My ignoring of my symptoms did not help.

Mark:

I think you raise some valid points, but you also seem to be entirely dismissive of Dr. Scaer's work, which I don't believe is justified. I don't doubt that the information you've presented is has a solid foundation in medical literature, but I think we're in one of those oh-so common situations where the whole truth lies somewhere in between - a confluence of psychological trauma and physical injury.

And here's where we continue to butt heads, Mark: After all of this impressive information you've relayed on the physical composition and stress reactions of the brain, you say nothing about what to do about it other than coping - with accepting what you have as final and learning to navigate around it. You seem to have such a singular focus on the "why" of how your brain has become what it is now that you give no thought whatsoever to the notion that it could heal. That you could get back at the very least some of those parts of you that you've lost over the years.

You may well believe that it's impossible for your brain to come back at all from where it is right now, and I have no intentions of stopping you from thinking that way, but that's not what I believe. I also don't believe that your way of thinking benefits people with PCS a great deal. Hope trails only love in terms of its healing potential, and you seem to only deal in clinical jargon and cynicism.

I am very much impressed with your intellect, and more power to you for coming to accept everything that you've had to deal with in your life, but talking to you in all honesty makes me feel worse. I'm no masochist, so I'm probably going to be on my way.

I'll close with one last quote:

"We become what we meditate on."
-Eknath Easwaran

Best of luck to you.

So you want some specifics.

I have recovered much of my memory and cognitive losses over the years. It does not happen in a vacuum. My strong suits have been math. reading, problem solving, etc. Those academic pursuits that separate the high achiever form the average achiever. The math is the simplest to exercise and rebuild. I have alway had a fabulous ability to do mental math calculations. Each time I was injured after high school, I would suffer a loss in these capabilities. I would regain much of these abilities by challenging my mind with math any chance I had. At the store, i would ad up my purchases and compete with the clerk and cash register. I had to do this when I worked at McDonald's in 1973-4 because the registers we used only totaled the cash we were putting into the till. It was great mental exercise. I have had to redevelop my math skills many times since then and I always used the same technique. I read voraciously. I am always up to a challenge of solving mental puzzles, mechanical problems, and any other such challenges.

Being on the watch for these opportunities for mental exercise is very important. When recovering from a brain injury, it is important to take advantage of any opportunities available since sitting down to practice can be overwhelming, especially at first.

The randomness of taking on these challenges as they come up allows you to work on them in a variety of environments and without the stress of cramming for a test. Crossword puzzles help exercise memory recall skills.

As the saying goes, if you don't use it, you lose it. Well, if you have lost it to an injury, the only way to get it back it to use it over and over. You can pay a occupational and speech therapist or you can do it yourself at every opportunity.

After getting a computer in 1993, I began playing the games that come with Windows. Minesweeper, Free Cell, and some others are excellent brain exercises. My eventually built up my win record in Free Cell to almost 90%. My brainiac daughter would compete with me. Eventually, I set a family record of solving a game in only 37 seconds. I have used Free Cell to recover from a concussion in early 1996 and again in 1999. After my concussion in 2001, no matter how much I tried to play Free Cell, my brain would over-load and get exhausted. I have tried many time in the past eight years but my neurologist says that at my age and with my 13 plus concussion history, I have probably used up all of the "reserve" capacity in my brain. Neuro-scientists believe that there are many extra neural pathways available to replace the damaged pathways but as we age, those extras get used up. He tested my brain in 2002 twice and again in 2006 and saw no difference. I have improved greatly but most of my improvement is due to the work-arounds and other accommodations I have learned.

The neuropsychs that have assessed me all have repeated that exercises, work-arounds and other accommodations are of utmost importance. By accommodations, they are referring to stress avoidance techniques, accepting the limitations (at least for now) that are currently manifesting, accepting and receiving help from others rather that trying to do it alone, etc. A good occupational therapist who treats brain injury should have a long list of these. the work-arounds are just other ways to get a task done. Some people are good with lists and other reminders. It all depends on the individual's symptoms.
There are similar techniques for the psychological issues. Most common is CBT, Cognitive Behavior Training or Therapy. In CBT, you learn to memorize specific responses to specific situations. It can be anything from breathing techniques to thoughts, both positive and negative. i.e. This is not going to hurt me. or I can handle this challenge. or That situation is not important. to very complex responses. Sometimes, just identifying the trigger or stressor and choosing to ignore it is adequate to build up tolerance. CBT is often used with phobias. I overcome my severe claustrophobia with two steps. If I can, I close my eyes, I pull my arms and legs up so that they are not touching any of the constraining object, then I visualize that the constraining object does not exist and replace it with open space of some kind. I have been able to have many CT scans, MRI's and a Pet scan using these techniques. But, when I fly on a airplane, I need to sit in the first row and on the aisle. If I cannot get that seat, I need to travel with my eyes closed as much as possible.

There are other techniques that I have not mentioned here. The important concept is that you have to pro-actively seek out these solutions. Identifying your dysfunctions is the first step to figuring out a solution.

Dr. Scaer tries to approach the dysfunction as just a symptom of an underlying psychological issue. If there is not an underlying psychological issue to treat, then he has not workable treatment. He claims that almost all of the long term symptoms are psychologically caused. That severely limits the sufferer to the limits of psychology. Sometimes, the psychological solution can be worse than the original problem.
In my case, after I was abused by the cops, the psychologist wanted to get me to accept and convince myself that the cops were not doing anything wrong. That would have been a severe challenge to my ideas of right and wrong.

Sorry, my conscience is not up for grabs. I did not need a new reality.

hi mark and pcs Mcgee

interesting thread you guys have had going here , mark this last post has rang some bells with me

I was assaulted by three 19 yr olds that were under an anti social behavior order or ASBO here in the uk

the cps crown prosecution service dropped the charges against them sighting an unreliable witness ,although the attack was captured on ctcv at a train station at the time i was interviewed I had no memory of events from an hour before till 4 hrs after. but now over 1 yr after I have what I think is a memory of the attack

I was picked up off the floor by police and frog marched to the paddy wagon I am told a by stander said to them what are you doing ?? he has just been assaulted and they ran off

they say they placed me in the van because there would have been a 4 hr wait for an ambulance the station, is less that 1 mile from the hospital ,CRAP THEY PRESUMED ????? I was drunk more like

in the attack I received damage to my throat fractures to my maxilla, frontal, temporal, and orbital floor bones on the right side of my face

in the UK if you are brought in by the cops you are placed at the back of the Que especially if violence is involved

After what turned out to be 3 hrs .I had no sense of time just a noise in my head no pain and no thoughts just a white out, and I can,t feel my face, I thought were am I , I felt for my phone but could not make out any detail but could make out the reception desk , some how made my way to the desk and said can you please phone my home . the receptionist , dialed my partner , she said the police had phoned her and told her I had been assaulted, I was in a bad way but OK, how did they know that I had not seen a doctor yet, (COVER UP ) I my partner asked were I was , and I said a town I had been in 3 days before . the receptionist took my phone and told her the hospital I was at ( NOW WOULD THE GLASGOW COMER SCALE SAY I WAS CONSCIOUS ???)

my wife came out at 3 am with my 7 yr old girl , she still has trauma from that night, only then am I seen, I cannot tell my left from right when I am xrayed I am handed a letter and sent home were, I pass out in bed. no one tells my wife anything

Some hrs later my wife opens the letter and it say I am to go to another hospital 30 miles away I now have a massive head ache I am CT scand and told of the fractures It is the 19th of December 2007 every one is breaking up for xmas I am told I have to have 3 titanium plates fitted but they cant operate till the 27 of December , I am sent home with anti bots and pain meds (NO HEAD INJURY SHEET ) the next day I develop a CSF leak out of my nose BUT I DON,T KNOW WHAT ITS IS

I return to hospital to have opp, tell a nurse about this stuff coming out of my nose, the DR comes and dose some nuro tests and says he cant operate and sends me for an MRI at another hospital 2 days later then I have the opp on new years eve 12 days after my injury



To cut a long painful story short due to the brain damage I lose my job ,nearly lose our home my GP says I have depression to explain away my symptoms and places me on Prozac 2 days in to treatment I fly into a uncontrollable rage start smashing my house up , the cops are called five officers drag me from my home nee me in the side of the head carry me to the paddy wagon AGAIN release me the next day without charge BAD REACTION TO MEDS

THE csf leak returns yee haw ,I am waiting for more tests to find were its coming from

We find a head injury charity that helps us with welfare ect I cant fill out the forms and social services help save us from eviction which I am very grateful for , the compensation from the CICA can take years and will only cover the debt this has got us into


The yobs that did this to me have been under social services care for many years and are a shinning example of the fallibility of ASBO system and were at one time band from all railway stations

I am now thinking of going to the press for justice there (THE YOBS ) case worker has been to the daycare centre I attend to try to intimidate me, from doing so, I should feel safe there

WHY BECAUSE ITS A COVER UP

thanks for reading

I dont know how to handle this latest development its like we are the criminals now, having to keep things quiet

Vini,

My sympathies to you and your family.

My daughter has disowned me because of a few outbursts. She sufferers from true PTSD from the Iraq War. She did a tour as a combat medic and saw some horrible sights. She was in the first vehicle when a IED exploded and killed a sweet gal in the second vehicle. She has never recovered from that event.

Your run-around by the medical establishment sounds like mine, except you were obviously very badly beaten. Managed or rationed health care does its best to find a reason to limit care. In my case, they say my injuries are not life threatening. Yours could easily have been life threatening. Regarding the CS Fluid leak, I understand that the usual process is to wait and see if the leak will self-seal. Intervention in too risky. Sometimes, if they can isolate the leak, they can inject some of your blood into the leak. The blood will then clot and plug the leak. Still a risky problem.

My wife and daughter both have a myriad of titanium plates in their faces. They needed reconstructive surgery due to congenital mandible and maxilla bone malformation. X-rays of their faces are quite interesting.

I can imagine how much recovery you had to go through as your face healed. Do you still look the same?

I had a parcel deliver man who got his face beat up by running into a tow truck that cut him off on his motorcycle. After he healed, he looked totally different. The doctors said he was lucky to be alive. I gather that you are too.

Hopefully, someone has helped you explain to your wife and daughter that your outbursts are caused by your brain injury. They can become very effective at helping you avoid the triggers that cause you to explode. Maybe you can teach them a secret word to use when they see you starting to build pressure. Redirecting your focus away from the trigger can be very effective. A sweet and loving daughter should be able to melt you with the right words.

Your daughter could ask for a hug or rub your hand. You can work with the brain injury therapist to find some techniques that work for you. I can get very loud. Did you read my work-around for airport security checkpoints? It is earlier in this thread or maybe it is on the Early Onset Alzheimer's Disease web site. Check out: http://alzheimers.infopop.cc/eve/for...343#5511083343

Post any questions you have about work-arounds or other accommodations. Your life will greatly improve when you learn how to deal with the rest of the world. Since brain injuries are mostly invisible, you need to be prepared to inform others of your needs. A note in your wallet explaining your neurological problems is the first thing you want to do. Print out a few copies so you can lose one if need be.
Mine says something like: "Please be patient with me. I have a brain injury that sometimes causes me to over-react in stressful situations. I can quickly get loud when someone yells at me or otherwise causes stress. Please help me avoid such situations. "

I use it when I need to get through a noisy airport.

I seriously encourage you to get started with nutritional therapy. B vitamins are very important to people like us. Our brains can easily need ten times what a normal person needs. Did your doctors advise you to eat high calorie foods while your facial injuries healed? My wife and daughter were eating almost 6000 calories a day while healing. All through a straw.
Your brain is the same. It will be in a state of healing for the rest of your life. It does not need calories as much as it need the proper nutrients, vitamins, minerals, amino acids, even fats. Brain tissue is similar to fat tissue.
Stay away from alcohol and mind altering medications unless prescribed by a very knowledgeable physician.

Find some books about living with a brain injured person. Your wife and daughter will benefit greatly. Read Dr. Glen Johnson's TBI Guide at www.tbiguide.com There are other books at Amazon etc.

Good luck to you and your family. You have all ready used up your quota of bad luck.

Mark in Idaho, USA

I understand what you're saying here Mark, but I think everyone is different.

I had PCS from a nasty head injury a few years ago, and my symptoms lasted for 6 months before subsiding on their own. I had no therapy of any kind. I didn't even know that the symptoms I was suffering, had a name. None of the doctors wanted to know me.

Each time I sought medical help I was sent home without treatment.....without any information at all. I was in and out of the ED department for days after my original injury. I was nauseated., I was dizzy, I had no balance at all. Even in the very beginning I couldn't even sit upright. Every time I tried to sit up I simply fell to one side. It was as if I had no control over my body at all ..... but nobody would help.

After about a week I gave up going to doctors and simply rode it out at home, but for those who're still suffering.....I want you to know that sometimes it just passes. It did for me.

Some of my past reply's I have thought about and i just don't get my deal and please someone comment on it my story as i have told is odd I was hit with a forearm to the face in a wrestling match on Nov.3rd of 2007 ''was not knocked out'' didn't even really notice anything excpet for a split second of weirdness like i was like dam whiplash ''i have no neck or back pain'' from Nov.3rd of 2007 to Nov.28 of 2007 was much different around the first of Nov.20th i began feeling odd dazy headed feelings i was still wrestling b/c for 2 weeks i had no clue that i was even bad on Nov.28th it hit and it hit hard the PCS Symptoms that is i was so dazy and akward feeling that I thought ''i was going crazy'',i stopped wrestling and in only week the symptoms stopped so what did i do when back to wrestling yet took no hits to the head just moves suplex,bodyslam,etc...and here it came again i really at that point did not understand PCS at all only until i researched myself did i understand it totally anyhow this went on for months in the ring and back out each time PCS getting not worse but just coming back i have been out now for months and am feeling much better still yet though i have my as i like to call them attacks,so my question to Mark is thisis my case different???and if so do you think with my mild problem that i will ever be normal again????any reply is neccasary just tell me what you think as mine seems different then others in some degree.

hi mark all

the out burst was a direct result of prozac and the frustration
at our situation it was probably good I got to wrestle with five cops that night, but the knee to the temple I could have done without, I just feel irritable all the time, but tend to take it out on objects, you see pcs is one set of symptoms which I have, but others are just plain weird, I some times can,t recognize objects so in have to think what the thing could be and come to a conclusion as to what I am looking at, and what it use is, this as you can imagine, is frustrating, but what I am finding is the more things I identify over and over , I then know what it is as I used to but , if I misidentify something that sicks too so I have to unlearn the mistake , I had alot of trouble with sauce pans and cu lenders I would mix them up which was a bit dangerous, you see both have handles and are similar shape,s

I am still waiting for nuro psych assessment' luckily I studied psychology to a high degree , but need to deal with the anger and the unjust situation I find myself in

I remember visiting a friend in the American military hospital in Berlin in the early 80s there was a British solder in the psych ward there, he had to sleep and carry a toy gun like a teddy bear, if they took it from him he would descend into his own personal hell through PTSD but its all a matter of degrees and I for one would not demean anyone by saying true PTSD because it implies others are false

as for my looks the hospital that fixed it is one of the best in the world the queen Victoria east grinstead they pioneered plastic surgery after WW2 and went in through my mouth and wriggle lines so not to bad, they had to remove some mashed temporal bone and fit plate over it my vision is impaired and due to sensory loss my face can drop on one side if allow it to

I know much about CSF leaks blood patches are only used on spinal leaks I also understand the concept of conservative treatment but CSF is corrosive to bone and tissue so if it dos ant stop leaking by its self surgery is the next option

I have won back my art by adapting my tools and method

I think it is so important that head injured people do not lean disablement but try to find ways round them as best they can , but as you point out more damage can be done , to adjacent structures within the brain if to much is attempted to soon as was the case with me

COVER UP is an insidious situation, in as much as it defiles justice , I would use this analogy .

In Maori culture they had a god named Utu is a Māori concept of a reciprocation or balance. To retain mana, both friendly and unfriendly actions require an appropriate response. Hence the concept covers both the reciprocation of kind deeds and the seeking of revenge.

this system kept the maori people at war for 400 yrs although it also has a good side

the old world concept of an eye for an eye must be replace by sentient justice for victims of crimes, not covered up to save face , it dident save mine, and the next person could end up dead , or I could be driven to take revenge