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

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