Psychological Stuff
 

Hi everyone. So i'm new to all this psychological stuff...and today I was doing a little bit of reading to find ways to help myself overcome my problems...The ones that are psychological, anyways.

First of all, I'm having trouble deciphering what is caused by actual PCS symptoms and what is being caused by psychological things. Now, I know for a fact that my cognitive symptoms aren't ALL psychological. I've proved that to myself time and time again. But, what I have found out is that when my brain "shuts down" after a long day, stressful event or physical activity...I lay down to rest...and I can't really tell when it goes away? I think I trick myself into thinking that it's still there...even after a full days of rest. So, I stay in bed and rest some more...until I drive myself crazy!!!

But, there are times where I truly believe it's not psychological...Like today...Let me give an example, so you guys have a better understanding of what I mean...

Yesterday was a busy and stressful day. Not only did I spend an hour talking with the director of NCEP (space cadet city afterwards), I got stopped by a cop for jaywalking on a tiny street by my apartment...that has NO crosswalk ANYWHERE!!! That sent my body and mind into fight or flight mode. Afterwards, I couldn't think and I could barely move the rest of the evening...I couldn't sleep at all last night and ended up getting about 6-7 broken hours of sleep.

I made a simple schedule last night to follow for today. One that I could cross off each task...with mostly simple activities with rest in between. I had 2 sort of big things to do today...one was get my haircut and the other was drop my medical records off at NCEP. So, I figured since the barber shop was on the way to NCEP, I'd stop there first and get my haircut. I was already functioning at a low level...just confusion and trouble thinking and stuff. I sat down in the chair and had a little small talk with the barber. About 5 minutes into the conversation/haircut, my brain shuts down...my thought process just stops and I feel unaware of whats going on around me. It was like a CLICK and done...it happened in a split second. I went back home instead of going to NCEP, rested for an hour and thought I felt better...Went back out to drop the medical records off at NCEP and WHAM!!! Brain shuts down on the bus.

Ever since then, my brain has been in "off" mode...Meaning, I can barely speak...Someone asked me what happened with my brother yesterday, I was there, I know what happened but I couldn't explain it. My brain couldn't put the thought together into words...UGGGGGH, I WISH I COULD EXPLAIN IT BETTER!!!!...Anyways...I've been resting the past 2 hours, I took a nap and just stared at the ceiling. Now I'm up and trying to take part in the household but I still can't function. Brain is still in OFF mode.

So, in short, ever since the neurologist told me that most of my problems are psychological...I've kept a positive attitude, I've tried to function normally and think nothing of my cognitive symptoms, but my brain keeps SHUTTING DOWN to the point I can't function at all....Even if I don't even think about it, it just HAPPENS. I tried writing a schedule out for today...a very simple one, and even the simple tasks shut me down.

How on earth am I supposed to handle a M-F schedule at NCEP?

Psychological, or what?

What do you think?

How can you tell the difference between the two?

Well, just thought I'd drop in and say "HI"...Besides the crappy brain functioning, I've been doing alright since I got the double whammy of good news. I'll check back in with you guys tomorrow...Peace.

Nick

Nick,

You should wait for the counselors to instruct you. Trying to do this yourself will not be productive without the support of the counselors/therapists.

Trust them to help you.

Plus, you do not want to interrupt the process they use.

And yes, it is psychological. You are micro-analyzing every moment. Stop that.

The barber shop probably had too many sounds. Did you have some ear plugs with you?

Do you have a note with your driver's license that explains you over-reaction to confrontation and sounds?

Slow down and take one step at a time, and stop trying to fix this in a hurry.

Gosh, I've alllll my life micro-analyzed everything to death. Without that ability, I think I'd be clueless about life and everything. I have found a lot of strength, understanding, and courage in being able to decipher some of life's mysteries.

But I can suuuure see how it would really aggravate a TBI. Such horrible overwhelming stress and anxiety of trying to figure it out nearly did me in during the first couple months of my son's TBI. WORST hell I've ever ever been through!! And I've had to do it alone. My son would be toast if I hadn't already had a medical background and could stay on top of everything.

Ignorance may be bliss in some cases, but over-analyzing I think may be part of the flight or fight / self-preservation instincts. It may be a desperation for security issue, but Knowledge Is Power! Geeez no wonder I've had lifelong insomnia!

I only WISH my darling adynamic son had the ability to last 5 minutes in a conversation. I think he can cognitively and he's working hard and getting better fast to work on communication skills. What kills me is that so much of the time it's like living with a zombie, very little expression of thoughts and emotions. But he can still cook!!

THANK GOD for my over-analyzing ability 'cause it's motivated me to do TONS of research so I can understand why he is like he is, and be as patient and loving and helpful as possible for him. It is heartbreaking to watch, but it also breaks my heart to hear of sooo many TBI people who do not have such an advocate but themselves, and who have horrible relationship problems because other people just have nooo idea.

So take it easy, NW. You are NOT alone and you have some great teams on your side, especially with your new program. DO take it easy and relax, and welcome the privilege and respite!!! You truly are doing amazing. Yup, all that Mark says (thumbs up) Peace, bro.

I believe someone with PCS will be better off not analyzing their symptoms at all rather than over-analyzing them. The stress passed on by others constantly asking or observing and commenting on the condition of the person with PCS will only make it worse.

You would be surprised to see how adaptable the brain is at working with the circumstances of PCS. Some of the work-arounds become a natural effort without a need to analyze the issues to go forward.

Letting go of 'normal' and moving forward from the point of injury without the stress and anxiety of what, when, why, will lead to more improvements. Once my wife understood and accepted my symptoms and limitations, the stress in our household decreased.

I can't imagine what it would be like to have a parent looking at me as broken and needing to be fixed or pushed into a fix by a parent.

When I was 15-16 and struggling miserably at school, all my parents did was make sure I got the medical care I needed, I took the medications to control my seizures, and they tried to encourage the school nurse to fight for the accommodations I needed in class. They knew I was struggling and did not push me to do better than my injured brain would allow.

Maybe being one of 6 kids helped lessen the pressure or focus on me. Or, it caused my parents to be more tolerant of the ups and downs of the life of their children. I can't imagine what the pressure would have been like if I was an only child or 1 of only 2 children. My mother did a good job of keeping track of her brood. Maybe the fact that she grew up during the depression as one of 13 children allowed her to be more accepting of the ups and downs of life.



Time heals far more than effort.

Hey Nick,

You've been hanging in there with this condition like a champ...keep it up!

Perhaps next time you meet with your therapist, you could discuss strategies for letting go of and accepting your thoughts and feelings rather than analyzing them. My guess is that you probably get into analyzing mode without even thinking about it and without making a conscious decision; it just happens, and before you know it, your mind is racing, trying to figure out what's going on. If that's the case, your therapist (if she or he is a good one) should be able to help you to develop strategies for working on this.

For what it's worth, here is a mantra that I find helpful. It's not a magic bullet or anything, but it might be good to write down and put somewhere where you'll see it:

"When a difficult thought, feeling, or situation arises, I calmly accept it without judgment."

Working on acceptance and nonjudgment is key--especially with our own thoughts and feelings. I know it isn't easy (believe me, I know!), but in the long run, it works.

Pete

You know what...just forget it.

I'm honestly sick of being told its all psychological. I know what I feel, I know how I am right now...nobody else can see what's going on in my head. I truly am getting worse. Its becoming more and more unmanageable every day that passes. Its pointless talking about it on here...because my writing skills are so adept, that its hard to tell that I struggle with anything.

I can't wait to start this program...They will see how bad I am...and hopefully find out what the problem is. I'm so tired of this backwards progress crap...its ridiculous.

I can't talk at all today.

Psychological...yeah.

Nick

I'm sorry to hear you're having a bad day, Nick.

I certainly don't think your problems are all psychological; in fact, I think it would be ridiculous to think that. If my post implied otherwise, then I apologize. I was just trying to offer some help with the psychological SIDE of your difficulties--not saying that that's all there is too it.

I hope you find some real help with this program you've found.

Pete

Mark, you are a super intelligent guy, you yourself have done tons and tons of research over many years now. You're right, a TBI person should not have to analyze anything. But, do you imagine that if a TBI happened to one of your kids, you could just look the other way and let them figure everything out himself, from the get-go, starting with being completely clueless?

Of course not, and any TBI person who's had to do that would be more than thrilled to have somebody there to help them get through it. I can't even imagine that kind of horrible stress, it would be far worse to have no caregiver at home to help sort things out. It's been murderous hell for me to work through it all without a TBI in the way, and alone.

You said yourself, "Letting go of 'normal' and moving forward from the point of injury without the stress and anxiety of what, when, why, will lead to more improvements. Once my wife understood and accepted my symptoms and limitations, the stress in our household decreased."

Please don't get the wrong idea, I'm not hawking over my son or pushing prodding poking or otherwise putting him under a microscope. I've done all the research and over-analyzing so I CAN know what to watch out for, and understand what's going on with him and what he needs. I am very sensitive to what he feels, including his ego, and I try to be gentle and tactful and positive.

Just this morning I realized the light in his room was probably too bright; it used to be my office and had two 75 watt bulbs overhead. He is still a bit photosensitive and prefers the dark, so I asked him if he'd like dimmer bulbs. We changed it to one 60 watt bulb. He was grateful! Little things count. :-)

His TBI was diagnosed as severe, not mild -- skull fracture, intracerebral bleeding, major extensive evacuation surgery, bone flap surgeries, etc etc., and he IS still under doctor's orders for 24 hour supervision. He's only been home for 3 weeks. If not for me he'd be in a group home or homeless. So whether he likes it or not, and he doesn't, he gets to be watched for safety FIRST, that's always #1. He was very broken, not just a little concussion.

I guess you're just sayin', from a guys perspective. Yeah, it would be pretty awful to be all micro-analyzed. But, well, we're still in those very early stages of finding out his deficits, let alone his new "normal". My son is only 3 months along and rapidly improving. He can't yet even figure out what his brain feels like or how to tell how it feels yet, all he knows right now is that it's different.

So this is a very different perspective from your own. Oh yes, my son does hate being watched and analyzed, especially by Mom, of course who wouldn't be bugged by that! I know it irritates him and I'm doing my best to be discreet, and he is needing less and less watching now. He has had a couple of speech therapy sessions now, and even though he acts like it's a huge PIA, I can tell he loves showing off what he can do.

It's great, and he's great!! It builds up his confidence and he's got a couple of cheerleaders rooting for him. It's wonderful for me, too, because now I have a therapist backing up my observations. Whew!! Easier for him to accept. I can hardly wait now for his PCP to finally find a neuropsych doc for him now. That should be humongous step in the right direction, too, and hopefully find out more about his executive functions, which right now look pretty good.

And now he is realizing his communication skills need a LOT of work, he's trying hard to talk more. YAY!! Yesterday we had a full one minute conversation about a movie. Awesome, the longest!!

But without me pointing out disinhibitive behaviors like treating everybody like they are stupid, and scaring babies because they annoy him (he's done that), he'd probably get beat up a lot. Wouldn't be good.

As he becomes aware of his irritable / impulsive / disinhibition behaviors, he's better able to control them, thank goodness! I can observe it quickly enough to bring up the subject and let him know it's okay, it's normal for the injury, and now we know this is happening we can make adjustments (VS blame and punishment like some UNDER-analyzing people would!)

He is chagrined of course but just knowing helps him a lot -- before somebody beats him up for acting like a jerk. And he doesn't even have to go through beating himself up for it because the FIRST thing I do is let him know it's okay, it's the injury and he's NOT at fault in any way. He is improving and being more his old sweet self now. His personality is starting to come through more.

Some of this impulsivity may be permanent, but even when he was just waking up from the coma I could see he was able to control it some. He learned quickly that the screech of my chair on the floor meant I was jumping up to stop him from extubating himself, and he stopped reaching. That was an incredible moment for us!! Huge relief to me and the nurse to see him exhibit that control. One of the first clues that he was gonna be okay. His impulsivity continues to improve.

He feels better knowing it's a big step towards getting to keep his job down the road when he does return, because he will be able to maintain work relationships instead of pizzing everybody off-- so it's a great motivation for him. It also helps him realize at least one reason why he can't go back to work for a while yet, but it's a big step forward and it's a great relief for him as well as a reality check.

Yes, his brain is rapidly healing, thank God, in large part because he is able to rest alllll he wants and does what he wants to do without pressure, no pushing from me. Yes, time is very healing. And we know it can take a lifetime. Once my son gets to the stage where he can manage his own care, I'll be more than happy to let him, and I'll always be here on standby for him as long as I can.

Meanwhile, I'm just a Mom doing what Moms do, making sure my son is cared for and continue getting better. Only another Mom would understand, I guess. I'm gonna micro-analyze, so he won't feel the need to, and all he has to do is rest and trust. I hope and pray my efforts keep him from getting anxious and too frustrated and depressed. I'll handle the stress, and gladly!!

*He Ain't Heavy, He's My So - on, So On We Go" !!! :wink:

Please forgive my "rant". Watching your kid come within a hair of dying on you kinda makes a mom a little bit insane. Really Sorry!!!!! I know it's not about me, NOT AT ALL.

Mark, you truly are totally an amazing inspiration; it's incredible how hard you've fought to be where you are today. This place would be lost without you, I'm sure of that. Are you planning to write a book, by any chance?

NW, best best best wishes and hopes, everything will work out okay. Does it really matter what's psychological and what's physical? One triggers the other, brain chemicals / hormones get off balance, so I would imagine it probably all boils down to physical anyway. But like Mark said, let the counselors figure it out. It's a vicious cycle. Patience! Peace!

Okay, I'll shut up now.

wendroo,

By the tone of your post, I sense that you are a Type A personality. If that is the case, it presents a need to be careful to not project personal behaviors on the other person.

My mother is also a Type A personality. She has explained the anguish she went through when her most intelligent child with a sweet disposition suddenly underwent a drastic change in personality and started having academic struggles. The anguish she experienced was nothing compared to the internal anguish I suffered living inside a damaged mind. I lost all of my friends, and went from a teacher's pet type of relationship to 'what has happened to Mark' experience.

Yes, it is important to notice the changes and struggles. But, elaborating on those changes and struggles needs to be very carefully tempered. To me, discussing a movie would be a challenge, especially ofter the movie is over. If I see something in a movie I want to mention to my wife, I need to either pause the movie to discuss it NOW or let go of the idea. If I try to save it for later, I will get frustrated trying to remember my points. We like to discuss the development of individual characters.

If I tried to discuss abstract points in a movie or other situation, I would get lost and frustrated. My memory is just not there. I can fit the pieces together if there is a logical way they fit. But, if the relationships are abstract, it is all Greek to me.

My wife will try to relate issues with her friends that I know. Her ability to keep the pieces in order far out does my abilities.

You said <And now he is realizing his communication skills need a LOT of work, he's trying hard to talk more. YAY!! Yesterday we had a full one minute conversation about a movie. Awesome, the longest!!>

This sounds to me like pressure. I understand the rehabilitation process. I have many friends who have been through far worse. My brain injury support group is sponsored by two brain injury rehab hospitals.

I see these people from both their perspective and the perspective of their caregiver which for many is their mother. The greatest value of the support group is for the caregivers. They learn to be more patient and passive rather than active in their support. When they meet others who have more experience as a caregiver, they are often able to wait on the brain's timing.

In the case with Nick, he has been his own worst enemy by expecting every little event to have BIG meaning.

Many with TBI can get overly focused on minute to minute issues. The injured brain causes a lot of this anxiety due to the physiological struggles it is enduring. Add to this the life habits that were well established prior to the injury and the mix can have a synergistic effect of extreme anxiety.

The best anxiolitics (anti-anxiety drugs) tend to have some side-effects that can radically change day to day life. The nausea and somnambulism aside, the sexual side-effects often cause the drugs to be rejected. It takes a strong understanding of the deleterious effects of anxiety to make the hard choice to seriously deal with the anxiety issues. Ego and other attitudes can easily get in the way of making the personal changes that will lead to moving forward with rehabilitation.

One of my most severe symptoms is an anxiety disorder. I have lived on both sides of this symptom. I know the frustration and anxiety of getting stuck constantly thinking about my struggles. I much more prefer the stability of accepting my symptoms so I can try to move forward with my life. I can be very high functioning if I can prevent anxiety and micro-analyzing from getting in my way.

When Nick (nwsmith) finally decides that his anxiety and micro-analyzing is getting in the way of his recovery, and he decides to make positive steps toward resolving this one issue, he will start to make leaps and bounds in his recovery. Right now, he is stuck on a merry-go-round repeating the same complaints over and over.

He has a tough road to travel due to his 5 year drug addiction made worse by his assault leaving him with a serious head injury. He lives in a very chaotic household of 8 people, most with their own individual challenges. He has some symptoms that he may never get free of. He has many that he can learn to manage successfully and some that will resolve completely.

I hope you have learned in your research that your son has three different rehab paths to follow.

He has some symptoms/dysfunctions that he will never recover from. he will either have to learn to live without those skills/functions. Interpersonal relationships is a common one. There are ways to develop sort of mechanical or disciplined behaviors to use to over-rule the negative behaviors. It sounds like he is already working on some of these issues.

He has some symptoms that need to be redeveloped. While his brain was comatose, it shut down many functions. These functions need to be re-awakened. Speaking is often in this group. Ambulatory skills are also commonly in this group. The nerve pathways need repetitive efforts to sort of widen the path so these functions return to pre-morbid functions. It is usually a slow and painstaking process. It just takes repetition and time. In some people, there may be a time when it is like a light bulb went on and a sudden improvement is noticed.

The simplest repetitions can be most effective as in simple discussions or communications. Think of things like "Would you like a tuna sandwich?" rather than "What do you want for lunch?" Offer choices, not too many, that allow a simpler response. Think of what it was like when he was 2 or 3 years old. His digit span is likely very small.

If you don't know the term digit span, it is the number of items the brain can hold at one time to use in a cognitive process. A 2 year old often has a digit span of 2 such as yes and no. A 3 year old has a digit span of 3 (yes, no, maybe) and so it goes until at 8 the digit span normalizes at 8. Higher digit spans depend on other factors besides simple age. My digit span is as low as 2 to 4 on my worst days. It can be as high as 13 to 18 on my best days.

As you work with your son, you will likely be able to recognize his digit span. As his cognitive skills improve, it will improve. But, he will likely have the same roller-coaster ride of abilities as the rest of us. Stress will be a big factor. More stress, less function.

He will do much better accomplishing lots of simple tasks that just a few more complex tasks because with the complex efforts will come more failures and the resulting frustration and stress.

I have had to rehab my cognitive skills many times since my severe head injury at 10 years old. It was not until college that I started to understand the need to start with simple exercises. I could not jump right back to Trigonometry when my math skills took a hit. btw, I have never recovered my word processing skills to match my math and hard science type of skills. Words have too many abstract relationships. I can ace the math portion of the SAT but struggle to get an equal score on the verbal. And, I have been an avid reader since kindergarten so my word skills should be high.

If you feel the need to micro-analyze your son, hopefully you will notice that what is more important is trends, not individual changes. A trend might not be noticeable week to week but month to month it may be noticeable. Day to day changes have little to no meaning until that change lasts a week or two. Some improvement trends need a 3 month or 6 month time frame. It is impossible to micro-analyze a 6 month time frame.

Maybe this will help. He may learn to do XYZ next week. But, each time he does XYZ, it takes concentration and determination. Down the road a month or two, he may finally be able to do XYZ with a simple sub-conscious level of effort. The transition from concentrated effort to a simple sub-conscious effort will likely follow a roller-coaster path.

Once he can do XYZ with ease, he can build on top of that skill. He will OWN the XYZ skill and it becomes foundational to later skills. In time, he will own more and more skills but yet, some skills will still require concentrated effort. That is OK. I have some skills that used to be natural and automatic but now require me to stop to think. It is just the way brain injury is. There is no rhyme or reason to some of these problems. And believe me, I have tried to find a logical explanation. I used to be Type A capitalized, bold and underlined.

If you could watch how the brain established connections, this roller coaster path would make sense. The brain connects through a trial and error process. The proper connections become stronger, the improper connections get disconnected. Scientists can watch this happen in vitro using live brain cells from rats that behave the same as human brain cells.

Nick will be fine as he develops more confidence in his new case manager and therapists. He has just barely put his foot in the door of this new rehab program.

If you son has just had a few session of speech therapy, it sounds like he is just becoming ready for the gains he can get from speech therapy. I was recommended into speech therapy but by the second session, we determined that I was already doing all of the techniques they would be teaching me. The skills they can teach him will be invaluable, especially since he is so early in his recovery.

I have scads of memory tricks that I use daily.

I hope you son has therapists who understand and connect well with him.

My best to you both.

My apologies to whoever had to read my last post.

I've had "fish brain" since the moment I woke up.

I'm starting to pull through a little...but my threshold is very small, so I've had to do things in baby steps.

Otherwise it's OVER-LOAD CITY and I have the brain of a little fishy.

...It's very annoying...

I DID NOT mean to offend anyone and I appreciate everyone's advice...you guys are amazing and I cherish having you in my corner.

Tell your son I said "Hi", wendroo, and I look forward to hearing more from you throughout his recovery.

Nick

Thank you for all that very interesting and valuable info, Mark. Some of it I'd not come across before, or expressed that well. It's great.

Actually I have always been the quiet mousy passive introverted intellectual type all my life, much more Type B though not so laid back. I gotta admit I've been pretty "geared up" with all this TBI dealings. I'd think it's more being the Over-Protective Mama Bear instinct having kicked in, rather than Type A personality. I hope I'm not quite the Ferocious Grizzly Bear Mom! And also I've always been far more "talkative" and in writing than in person. Writing is good therapy, hmm. Ever read about MBTI -- Meyers Briggs personality testing? I was classified INFJ. Fascinating stuff.

My son has always been very much laid back Type B, most certainly. Always all his life just wants to play video games and fiddle with computers. I just thank God he still can! Physically he's all good, too, hallelujah not even headaches. Now if only the rainy season would stop here so he and I both can get more exercise! Bicycling is out, but we'll suuure hit the beach and maybe go walk around some festivals and fairs as long as he can handle the stimulation. We'll see how that goes when the time comes. He does great in stores where there's all the lights and noise and distractions, so I think he'll enjoy it well enough. On a more daily basis, I'm thinking maybe joining a gym so he can swim, or getting a small treadmill to fit in the house. Hmmm...

So far, in the hospital neuro rehab they were done with him after just 10 days, then more therapies in a SNF for 3 weeks and they'd also gotten as far as they could. In both places they only do minimal therapies just to move them through to the next step - home. Insurance was bad about rehab but I guess we're lucky he got that much, and now can have the Speech Therapy. I'm hoping doc will get Occupational Therapy for him a little farther down the road -- beyond being able to zip his pants.

So now his OP Speech therapist is excited and challenged to have a patient that utilizes her training beyond the usual hohum swallow evals. She has evaluated some work to do with him but so far this early has not found his limits. In this tiny town with dismal resources, I'm thrilled to have found her. I'm excited for her to teach him an "XYZ" technique to build on. She gave him a page of homework to do this weekend, I wonder if he's done it yet.

It was fantastic to see his daily improvement up 'til recently; now it is more weekly, less dramatic, and some days better than others. My research says this progress will keep slowing down some more for another 3 months, 'til around the 6 month mark, then trend down more. I think it's just beginning to be "trends" now rather than daily gains. It's been a great start.

Our conversation about movies was completely spontaneous on his part, we were just waiting for his Dr's appointment to begin. Not at alllll pressured, I don't do that to him. He just loves movies so it's easier for him to talk about it, and really all he talked about was what other movies the actor was in. Maybe he pressured himself to talk more now, but not much, or maybe was simply happy about the speech therapy he'd just had (less anxious?).

I'm not pushing his intellect; I hope in his brain's time it will come out more, and the Speech therapist is taking the steps in simple progression to optimize this. He has been more quiet today, though no less active; I guess that's fine and probably to be expected after yesterday's (Friday) bit of speech work.

From what I read in many places, it's usually easier for a TBI person to spit out old learned info than to relate ideas or emotions. That is probably more where my son is at. He remembers many old things; but it has been hard for him to actually ask for something he needs, and that is my main concern -- that he be able to relate a need rather than giving up on it. In the hospital 6 weeks and only ONCE ever pushed the call bell-- AFTER the nurse already showed up. Yay, we "good job" 'ed him anyway.

When he hit his head he was unable to tell me that he was hurt and needed help -- physical symptoms had to show up before I knew something was very wrong. It's all a horror story that is emotionally very difficult for me to tell still, very traumatizing. Most basically he had a tiny slow bleed in his brain that took 3 days time to grow to flood stage and do it's damage before he got to surgery.

And his alcoholism just mimic'ed and covered up what symptoms would otherwise have been more evident. In addition to horribly exacerbating that very slow bleed and the damage. Even his neuro doc at the hospital said he would have missed the signs if it was brother, who evidently has his own alcohol problems. GAWD it is excruciating for me to just say that much!!!!! I'll have nightmares tonight... I still blame myself anyway for not seeing it sooner.

Anyway, it would seem imperative to survival for one to be able to convey a need. Hence the Speech Therapist trying to "bring him out" and help him with his confidence. And she is so far a terrific cheerleader. This is a humongous relief!!

Matter of fact our days are spent very quietly. He loves to download a movie and we watch it. Most of the rest of the time, except for appointments or shopping, he is either holed up in his dark room playing a video game or else he wants to cook something, and he does well at both. He hasn't had much trouble making decisions about what he wants to cook, just takes his time; and at the grocery store decides things quickly and easily.

He even made barbeque chicken a couple weeks ago, completely from memory, and did fantastic!! He feeds us well!! I just follow him around the grocery store and let him do EVERYTHING, he even holds his own list in his head and gets everything he wants. (So his digit span is probably around 10 that day. Not bad?) It is a JOY to see happening!!

Yesterday he asked me for help prying the lid off a jar of home canned sauce. YAY!! That was GREAT for him to do. Even getting more communicative on his Facebook page. Sooo nice to see that!! Simple stuff, but very important clues to his progress. Yeah, just call me Ms. Micro-Analysis!

It shocks me to read about people who go right back into responsibilities like raising kids at home, alone all day, and have difficulty with expressive aphasia or other deficits. My son can speak normally, even the small "weak" tremor he was having is gone now. It's just that he doesn't talk much at ALL. Otherwise he seems to be doing better functionally than most TBI's at 2 - 3 months, especially as severe as his bleed got.

I actually think his behavior is safe enough for me to go back to work, leaving him alone in the evenings for a few hours. He goes to sleep at dark. I'm not sure tho, it is scary for me. I definitely will have to upgrade my cell phone service to include plenty of texting.

At the least I'm starting to get really bored sitting here at home and he has been fine. His behavior is more and more independent. As scary as it is for me, I'm afraid it is about time for me to "let go" a bit, but the last thing I want is to be in denial concerning his safety and leaving him alone if he shouldn't be. Where, oh where is the line...? He is very high functioning for a severe TBI, but nowhere near you mild TBI's or who have been dealing with TBI for years.

When and how much passive is it safe for me to be??? It's hard to know when each TBI is so unique. My son's certainly is. You know, I've just now decided that his PCP doc is a complete idiot for not already getting an occupational therapy eval so see how safe he is. I think a change is due.

I've not been much impressed with him anyway, I was pretty upset with him Friday in how he treated us so impatiently, and it was only paperwork. It particularly shocked me that he acted like he'd never before seen a Family Medical Leave Form, sheesh!!! Trouble is most docs in this town aren't accepting new patients... well now I see why his office is mostly empty while others are full for 3 weeks. ARGH!

So, can you see why I've been soooo frantic? I've spent allll the last 3 months just saving his life and then keeping him safe and managing his care. It's very hard to put the brakes on myself and chill out. I'll get there, and I know that he emotionally needs me to. The more he improves, the more I do and can let go. We'll be okay, we already are pretty okay.

Your anguish about living inside a damaged mind -- that has to be pretty unimaginable. I've thought all along that my own personal hell couldn't even begin to compare to my sons; if it was me I... just... couldn't... wouldn't.
It is a huge part of my own anxiety level to be sure to doing my best to make things as easy on him as I can and be alert to his needs. Like the light bulb. :-)

I'd rather die than for him to be harmed due to inattention. The short-staffed hospital would have let him pull out every single line, tube, and wire, and fall, had I not been there to prevent it. As it was, every time he did manage to pull something out was when I was sleeping or on a short break. Thank God he never discovered the ICP bolt in his head!! The nurses were thrilled to pieces to learn that I have medical background, and they totally used me a lot and thanked me, instead of watching out for us. I gots stories about hospitals. Maybe another time, maybe.

It does take some sensitivity to "read" my sweet zombie's mind, and figure out how to approach him "normally". He sooo HATES being reminded that his brain got mushed. I can't even simply ask him how he's feeling without him glaring at me. He still says "FINE!!" even if he's not, just like that couple of days after he had the accident.

Can we just say now that I'm more on "yellow alert" rather than "high red alert"? Supervision is minimal, and I'm very bored today, so here I sit...

Wow Mark, I'm glad you know Nick that well, he is blessed to have someone who has taken the time and care to learn about him and understand what he's going through. I'm so glad he finally has that foot in the door, too.

I've read in a few places that TBI doesn't affect IQ or personality, though it can wreak havoc on the academic skills. Your high intelligence and your caring definitely shine through in your writing. My best to you, too.

Nick, no apologies ever necessary, certainly no offense. And I think we all have fish brain days, TBI or no. Don't angst about it. I think everyone here is a pretty understanding group. Just accept the fishie days, pop in the ear plugs or the relaxation CD, shut the door, and let some peace wash over you. I don't know if you believe in a God or anything, but "talk" to Him anyway, words of THANKS. I'm not a believer but I do THANK whatever / whoever might be out there anyway, and it is a sweet way to let go some of that anxiety and reach into that part of your spirit that needs a *hug*. Think positive. Bless your heart and soul.

And, thank you for appreciating my son's "story". I hope someday he'll begin to reach out to new friends around here.

wendroo,

What part of northern Calif are you in?

Has your son applied for Calif State Disability?

As you watch him improve, something you will notice is called 'over-learned skills.' These are skills that have been done so often and for so long that they get memorized in many different locations in the brain will many different ways of recalling them.

An example is, I know my way around the greater San Jose area like the back of my hand. I learned the roads here in Idaho very quickly but suffered my life changing head injury 6 months after moving here. The roads here are very easy because they are an agricultural grid pattern (one mile square sections). I lost all sense of the roads here and have not been able to re-memorize them. But, I still remember the roads around San Jose. I drove those roads from 1973 to 2000 and had over-learned them.

Your son's cooking skills are likely over-learned. Over-learned skills are a great source of re-establishing a life. They often include the ADL's (Activities of Daily Living). I was put through some ADL activities at the local rehab hospital therapy kitchen. Things I can easily do I struggled with because I was so lost in a strange kitchen.

I struggle with being very easily distracted. I can lose track of the task at hand and stare into space or look around trying to get started again.

One of my best therapies has been doing auto repair. It can take me hours longer than it should. But, I don't have time requirements so I just take my time. I have had to do some re-assembly jobs two and three times because I missed a step along the way. I have developed exceptional tolerance for my own goof-ups. I was never that way before. I have also become far more tolerant of others struggles.

Your are right about how intelligence is not effected as much as other cognitive and memory functions. My IQ is at the top 10% in one area ( verbal, I think)with the rest in the top 2%. My processing speed, auditory and visual immediate and short term memory are in the bottom 10% and some below 5%. I am convinced that most of us can learn work-arounds and accommodations to overcome most of our struggles if we are just allowed the time and freedom to do things a bit slower.

Your son should be able to do quite a bit by using a PDA/smart phone. He can set alarms and lists to follow. It will be helpful if you have him text you on a regular basis. Getting into a routine is very good for the recovery process. he will do better if he find more constructive things to do during the day. Does he like to fish? Learning to tie flies can be good therapy. There is plenty of online instruction on YouTube, etc. Having a pile of flies tied at the end of the day can make a guy feel productive.

Regarding his bleed. It is not uncommon for a brain bleed to not show up until the third day. CAT Scans are more likely to show a bleed at 72 hours than at any other time. Earlier and there is not enough pooled blood to show up. Later and the blood is starting to dissolve and be absorbed unless the bleed is ongoing.

He will likely need to get past his alcoholism as getting drunk will manifest as a relapse of his brain injury from a cognitive point. A hang-over is the brain saying, "I have been assaulted." Was it a part of the cause of his original injury?

Hope you both have a good weekend. Church will have far too much stimulation for me tomorrow so I am staying home. Your son is fortunate he can tolerate crowds and noise.

My best to you, Mother Bear.

Hey Mark
We are in a small rural town 2 hours north of the Bay. My son just came to stay with me a month before his accident, from another state. It was a wonderful month, all Christmas excitement. He'd transferred his job here, but was only working 3 weeks, so no Calif. Disability, hadn't worked long enough, and had only just been receiving benefits for a couple of months. Thank goodness he at least had the medical insurance! Trying to get SSI / SSDI. HARD to fill out the ARF because it's too soon to tell for many of the questions they ask.
I agree his cooking skills and computer / gaming skills are over learned. But the environment here at home was / is probably still too new for that, so he is doing well anyway. He is making Easter dinner today, a small honey ham, and boxed stuffing and au gratin potatoes. Much simpler than his old capabilities, but still awesome I think! When he was in the hospital I packed up tons of stuff, too, to simplify the house for him. Slowly putting things back as needed.

And the town here is not much more than the main street so bus is pretty easy. Matter of fact he did sneak out at dawn last week while I was still asleep, and went to Walmart to buy a new video game. FREAKED ME OUT I woke up and had noooo idea where he was or anything. OMG!!! But it did make me realize he needed and was ready for some independence.

I have been very worried that he would be drinking again, but so far he's been substance free. I think he even stopped taking Nyquil capsules to help him sleep when I pointed out how bad it was for his brain. I think he realizes that alcohol impairs his brain, maybe that little bit in the Nyquil made him feel crappy the next day and when I spoke up he made the connection... I hope! He seems happy to have stopped smoking. HORRIBLE way to finally quit these bad habits, highly NOT recommended!! Crossing my fingers that he never picks them up again.

He was bicycling home after work when he had his accident, so alcohol only became a factor afterwards during the next couple days.

He loves his Blackberry, does use it for clock and alarms at times. I'd hoped he would still want to go fishing but so far not interested. We do need to figure out some more productive kind of hobby for him. So far cooking is good. Maybe see how he'd like to build on that, like making homemade bread or something. I'll see if he likes that idea. (Without making it sound like therapy, of course! He'd hate that.)

Happy Easter! We're sitting down now to watch another movie and eat a lovely honey ham.

HAPPY EASTER TO ALLLL YOU GUYZ READING OUR STORIES, TOO!! FEEL FREE TO CHIME IN :grouphug:

wendroo,

Keep in mind that there is therapy and there are things to keep his mind and hands active in a positive way. Smokers do better at stopping when they can keep their hands occupied. The video games do this but in a very limited way.

If he is so adverse to doing therapy, it will be a struggle for him to start making good choices with his brain health in mind. You may need to let him screw up or fail enough to get the idea of needing to accept his injury.

Today has been a head ache and foggy brain day, what I call a mud head ache. It feels like my head is packed with mud.

I don't think he's adverse to therapy, he just doesn't want to be needing it and doesn't like to be reminded that he does. I can imagine it would be kinda depressing. Other than that he does seem to be grateful and seems positive, certainly not fighting it at all, just likes to act "cool". Needing therapy is probably not "cool" to a young man.

When he was in the hospital and just off the ventilator, it was easy to see he needed toys and gadgets to figure out so I always made sure his hands and busy mind were occupied when he got restless. (This also helped him to not pick at his lines and staples so much.)

As soon as he figured out one gadget or toy it was forgotten. Within about 10 days he could beat me at playing rummy, and a few days later he beat me at chess! I admit I'm rotten, having not played either since he was little, but that he beat me was enormous!! Had to take some pretty good attention and planning and concentration skills, besides just old memory. I cried for joy!! He loved putting together picture puzzles and playing a handheld Tetris game, but hasn't touched either since being home with his computer. I know he needs a new hobby that involves more learning for him than old memory; the hard part is finding something to interest him.

He keeps moving forward and now that he's home he keeps himself busy with games and movies and cooking. So anyway, just to say that I'd been providing "therapy" of sorts for him, by simply engaging him in activities. (It was cool to see the hospital speech therapist doing the same things I'd already done with him, working on simple math and organizing cards.) Maybe now it's time I put him to work doing house chores and yard work instead of being soooo easy and not pushing him, a little work instead of just play?

I'm sorry you had a "mud head" day. I feel a bit muddy / foggy too often, though mine is stress induced; so I can very much appreciate all you say about Nick's anxiety being so detrimental to recovery. Or maybe I'm just getting old. My mind sure isn't the 'steel trap' it used to be. But I'm calmer now at least, learning to accept and move forward with life.

My thought today has been that "accepting" doesn't mean to think that "this is okay", but just that " ** happens and that's life, now just do whatcha gotta do". And doing whatcha gotta do means turning OFF that horrible TV slasher movie in your head about what happened to you. The more I DON'T think about that, the less I cry, and the better I can concentrate on what needs to be done next. You are SO right about just refusing to think about the minute details. So basically acceptance can mean "STFU" and get with the routine. Though I think we often regress in that part of the grief cycle and have to "accept" as soon as we realize that we are slipping back. I can imagine it takes a lot of forgiving oneself, too.
I hope I explained that to make some sense.

Time for a vent...not sure how this is going to turn out because my ability to express myself is getting worse and worse.

I'm tired of my problems being blamed on anxiety (constant worry) and psychological issues (think its there but its not). I know how I feel, I know my brain, my mind, my thoughts, my body...I know when something is real and when its just "in my head". I'm ****** up!!! Its getting worse and worse...that's not psychological, its really freakin' happening. My threshold for stimulation is getting smaller and smaller. The time it takes me to recover from something, even something as small as a 10 min conversation, is getting longer. The end result of overstimulation is getting worse. Its getting harder and harder for me to express myself...people are talking to me and I just DON'T KNOW WHAT TO SAY!!! There is nothing there. Its not just a bad day or a bad week...its been a bad RECOVERY since the start. What do I have to show after almost 10 months? NOTHING. I have less skills and abilities than I did months ago...and its getting worse all the time.

I hear everyone talking about how good they are doing now, and how things are much better than they were 6 months ago, or what-not...and I'm happy for you guys. Rock on...but I'm freakin' jealous because I'm trapped in a bubble with the ability to do absolutely nothing without pushing my cognitive symptoms over the hill. I'm like BUBBLE BOY. 10 minutes of a cheap, 1990 2D fighting game last night and I'm a complete space cadet MUTE for going on 24 hours and then some. God forbid I spend a day playing with my son at the park...even with closed eye breaks, I'm in bed for 3 days being tortured by my cognitive deficit.

I'm tired of living under a rock!!! In February, I had some pretty bad cognitive symptoms...but if I layed in my quiet room with my earplugs, my thoughts were SO MUCH CLEARER. I could run around town to several appointments a day, spend lots of time with my son, go to the store...and be fine the next day. Now, I step outside for a walk and I'm instantly on overload. If I continue to go for that walk, I'm screwed up for days and days..even if I spend those days resting and doing light activities.

How the **** am I supposed to handle 6 hours of therapy and counseling a day, 5 days a week? Its been 3 days since that meeting with the director of NCEP and I'm STILL on overload. My family probably thinks I'm crazy...I'm alive for one day and then I can't even talk or function at all for the rest of the week. Oh look, he's getting better...ah, nevermind, he's not.

I just got dressed and stepped outside for some fresh air..you know, maybe because its "psychological" and I just need to get out the house...hahaha...no.

"Don't focus on every minute"...umm, okay...I won't. But every minute is the same. TORTURE. I've been told to look at recovery as a marathon, not a sprint. Improvements are supposed to happen in baby steps over weeks and months. My recovery has been declines over the weeks and months. I'm getting worse every month and THAT, is not a lie. Its not in my head...its really happening. In October I enrolled in Pima Medical School...yeah, that's how good I was feeling. When the day came around to start in November, that's when all this crap started. I had to reset my start date for this month...April. That's 5 months. I'm WORSE than I was in November by FAR....by waaaaay FAR.

How can such a simple injury cause so many problems? Why am I able to do and handle less than I was before? Why doesn't it just get better?

Once I get insurance, which should be in a few days, I'm going to get a full battery of testing done on me...I'm going to make someone look beyond the brain injury and find out what's really going on. There's a reason for everything...and when I find out what that reason is, I'm going to shove that paper that shows my diagnosis in everyone's face that blamed my problems on anxiety and psychological issues.

Nick

P.S. I'm not crazy.

nwsmith1984,
You are not crazy. After my car accident in 2008 i worked for a year and a half. In may 2010 i had back surgery. Since then my pcs got much worse. Now there is no way i could do my job anymore. I was able to work for 18 months after accident, know couldnt work for 10 mins without my brain shutting down.

Nick I have just found this site and am so pleased to find your comments about watching TV - shutting down - stammering not been able to find the words - I know exactly what you mean - I thought I was the only person in the world that this was happening too! I was in a car crash over 3 years ago - have been seeing a neuropschologist for 5 months. Am making real progress Watching TV and using computer - was told to wear anti glare sunglasses - look away when there is fast cutting. Stop at first signs of feeling fatigued - lay flat in silence for 20 mins get up and do 10 mins different activity - 20mins rest again

No, Nick, you are not crazy. You are just impatient. Don't worry about something that has not happened yet. If you struggle with the intensity of the schedule at NCEP, they will notice and adjust your treatment accordingly.

You will probably do good to try to remember one thing. Your difficulty with word finding and speaking obviously has very little impact on your writing. As was mentioned earlier, the two different communication systems use different parts of the brain. For the time being, try to accept your speaking struggles and instead use your writing skills to communicate and organize your thoughts.

In time, the therapists will be able to help you with the speaking struggles and other struggles.

Imagine what is must be like to not have an ability to write or text. Now, be glad that you can write and text and count your blessings.

Lizzy, I will respond to your post when I get home.

Mark,

I'm slowly losing the ability to express myself through writing, too. Its taking me longer to write these out...I think what everyone, you and the doctor's, are missing is...My cognitive functions have been in a constant decline since November. These are not subtle changes that are temporary...they are BIG, very noticeable, permanent changes that don't go away. I understand that I have a brain injury. The part of my brain that was injured controls a lot of really important things...but I've spoken to lots of people with brain injuries, including my old neighbor who suffered a severe brain injury, and nobody can relate to getting worse and staying worse. Its not supposed to get worse...it should either stay the same or get better. This, has not gotten better at all and every month I'm worse than the previous month.

I just got back from trying to get admitted to a hospital. My neurologist was called and NOW, I've been diagnosed with petit mal seizures. They refuse to admit me and give me a spinal tap and full blood work. I highly doubt I'm having seizures. Do seizures cause serious cognitive declines that don't ever go away? I'm also very aware of my cognitive deficit. Its not a 10 second or couple minute problem...its constant, all day everyday from the moment I wake up. It gets worse with...anything and everything. I don't even get relief when I'm in a dark, quiet room.

Your right...I am impatient. You would be impatient too if your cognitive functioning was getting worse and worse (and staying that way) with no rhyme or reason and you couldn't get the tests you want to find out why. My recovery has been nothing but constant decline from the start. What do I have to look forward to?

Well, I'm off to try this new seizure medication.

Hoping for a miracle.

Nick

Hang in there, Nick. I am keeping you in my thoughts and sincerely hoping that you will get some answers soon and start experiencing some improvement.

Nick,

By the content of your posts, you are not getting worse. If anything, your posts are getting more specific and complex. You ability to link together so many ideas tells me that your deeper cognitive abilities are stable or improving.

If you were to do a bit of research into OCD and hypochondria, etc. you will find that the intensity of their symptoms may appear to get worse but from a clinical view point, the underlying health issues stay the same.

You have a physiological injury that has caused specific dysfunctions that are very likely stable. Your impression that these dysfunctions are getting worse is likely a psychological issue. The instability/stress of your living situation can easily contribute to this problem.

You need to explain to NCED about your living situation so they can take it into consideration.

I'm very sorry that you perceive you are getting worse. That must be VERY scary. Remember that your new neurologist spent a lot of time with you and has determined that you are suffering from some psychological effects from the injury you sustained.

I agree with Mark that your posts are getting better in terms of complexity and that shows improvement.

A part of getting better during my recovery was regaining the ability to recognize how bad I was - so even though I was getting better I could recognize that I wasn't doing as well as I thought I was. I didn't have the same self-reflection ability and I was not able to see myself from an objective point of view. Once that improved I was able to better compare myself to the self I was before the accident I thought "ugh - I'm doing awful!" Maybe this is a part of what is happening to you too?

Hang in there.

I feel like you are exaggerating in your own mind how permanent these effects are right now. I've done it too, over the course of my recovery. It's very scary to not be able to function at the level you are accustomed to. And the recovery itself seems to take forever! Give your recovery more time. If I was the same as I was at seven months after my recovery I would still not be able to add single digit numbers together well and I'd still be walking with a walker. I'm doing a significantly better now than I was then. Try to remember that in the tbiguide an expert neuropsychologist says most people improve a great deal in the first two years after a brain injury and try to avoid the word "permanent" until you're two years out from your injury.

Also, try to remember that most doctors, experts and researchers believe that the people who believe they will get better and are most motivated to get better (a part of which is a good attitude) will have the best recoveries.

Hang in there Nick. :hug: