[SpaceCadet]

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

[Mark in Idaho]

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.

[MommaBear]

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.

[Mark in Idaho]

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.

[xanadu00]

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

[SpaceCadet]

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

[xanadu00]

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

Originally Posted by nwsmith1984

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

[MommaBear]

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" !!!

[MommaBear]

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.

[Mark in Idaho]

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.