I had a neuro-psychological test done. It was exhausting and humiliating.

[Jackie]

 

Finally, I got the chance to have a Neuro-psychological test.  I went to a hospital that is up to date on new technology.  A very high rated Neurology Department in Philadelphia Pa.  

 

I was completely disappointed after all the testing and interaction with the neuro-psychologist was finished.

 

It seems they were using those stupid Coma tests on me. ( the old tests originally designed a million years ago to measure brain injury by how long you were unconcious for. )  I find these test are completely useless.

What if you were fighting to stay awake?  I fought to stay awake.  In my accident, I was so scared because, I had no idea who was behind me, ( I was on a dark road with nobody around, I had no idea where I was )

I stayed on the line with the 911 operator, she told me to keep talking to her until the police came and try to fight to stay awake.  I don't blame anyone for that at all.  I fought to stay awake.  When the police came.  I still wanted to go to sleep, I was in a such a daze.  I don't remember anything I talked about let or what happened when my car was hit by this drunk driver.

 

However, me fighting to stay awake gets measured on some stupid hand written coma test.

 

Anyway,

 

I was maybe an hour into testing when I was taking into the neuro-psychologist's office.  The Doc did physical tests and pointed out my balance was horrible.  Along with my short term memory.  A simple eye test which made me lose my balance, dizzy and sick to my stomach.

I was asked what my education was by the guy doing the test. I told him I have Bachelors Degree.  I was a C.P.A.  I felt humiliated.  I thought I was doing okay with the test.  Besides, I didn't think this was a test you passed or failed.  I thought it was supposed to show me what kind of therapy I needed to heal.  Not to point out that I am stupid now.  A test to show what kind of therapy I needed.

I left there feeling defeated and obviously I was going to have to re-learn everything myself.  Apparently my trauma is not horrible enough..  It made me very angry.  A TBI is horrible.

Which leads to me thinking everyone's trauma is different and extremely traumatic.  All of us have lost time in our lives.  Very precious time.  Time we deserve back, pay we deserve to have, lives we deserve to live, therapy we deserve to have.  So, we can go back to our lives, families and to work.  We don't get that and I think that's terrible.

Alot of our injuries are left unfixed.  In my case I have a bunch of treatment centers around me. I need physical therapy, cognitive therapy, and occupational therapy.  I may not get any treatment.. That sucks!!!

I have come to realize that no matter where you live your just supposed to deal with this and just suck it up like its a skinned knee. You may not get help for your TBI.  That makes me sad to think about.  Its simply not our fault that we sustained a TBI..

Seems like you learn something new everyday and it at times makes me wonder a million different things, mainly.  Why did I survive may car accident?  also Am I happy I am still alive?

[Emerson]

Jackie, I was just looking back in my external blog and I thought you might enjoy seeing this post of mine from December 2008. 

To you and anyone else reading this - It does get better.  I am now 2.5 years out from the day I walked out of this Neuropsych examination.  I have gotten good rehab here in Seattle and though life is still sometimes challenging it is good.

Here is what I posted on 12/30/2008

Neuropsych Evaluation

On Monday, I had a Neuropsych Evaluation; a day-long series of tests to more definitively pinpoint the problem areas of my brain function. By the end of the test the Neuropsychologist was telling me how excellent Harborview's Cognitive Rehabilitation Unit is and that I will be in good hands there, etc.  It was obvious to both of us that the day of testing had highlighted some serious gaps. We will meet again in two weeks to go over the results. 

As I left the building and headed out to my truck, I was just hit with this huge:

"Damn! This really is for real!"

Of course I do know it is "for real".  I have been looking forward to getting this evaluation for months because it is supposed to be a "holy grail" of tests for brain injury.  The information gleaned from the tests will determine the next steps in cognitive rehabilitation and other related treatment. 

But I just didn't want to be there; being the me I am now walking out of that office door.  I still want to wake up and find that this is all a dream and that I really am a happy, healthy, successful project manager making a good living. The reality of it; the immensity of it; difficulty of it; the financial effects of it; etc. ... It is a lot to take in.

[sassy]

I forgot I failed the tests, every one but because I was verbal , I was told I would learn to get by. Years later I can't always it doesn't save me

[sassy]

I was so exhausted after having some tests done, I don't know what exactly other than some tests with faces , putting things togehter and drawing things words and numbers , than the tester coming and saying I was afraid of growing old I was only 40 something , as I cried and tried to make her and hubby understand it was the loss of me ,my idenpendence my frustration at being abandoined to figure out all the confusion alone,she recommended effexor , no therapy, no help and hubby n ever questioned. So I took the meds and shut up and tried to move on

[Emerson]

Jackie, you might want to read this post about having a High IQ TBI:

http://www.dancingupsidedown.com/2010/07/the-high-iq-tbi.html

[BrokenBrilliant]

Something just occurred to me -- I think one of the things that makes neuropsych evals so difficult, is they can really tire us out. I don't know about anyone else, but when I'm over-tired, NOTHING seems right, and my head really gets going into some pretty down places. It's amazing what a good night's sleep will do.

 

For me, as always, the main thing is to not let a temporary state of mind (intense depression and sadness and defeat) get stuck and turn into the whole story about myself. Things change. And it takes a lot for our perceptions of ourselves to change after a neuropsych eval (if we find out things about ourselves that we never realized before -- I got very upset when asked about school, too). It takes a lot of energy for our brains to function, especially with/after TBI. So it makes us more susceptible to feeling down.

 

The main thing for me is to remember that this too shall pass, and some good rest can do wonders for my mood -- and my resolve to try again.

[Dan Fay]

Jackie, none of us can say why we survived for sure but then again, why were we born to begin with?  You have the words of a good TBI advocate.  Be sure to use those skills to help fight for your own cause - proper rehab for yourself. 

You deserve the best treatment possible. You shouldn't have to be a senator to get that and Gabrielle Gifford's office is fighting for that to be the case.  For now though, we may be more on our own.  It sounds like you have some rehab places in your area and they may require the neuro-psych test to get in.  Despite what the tests make you feel, you are not stupid.

Sometimes I find that we, the ones who have suffered such a debilitating thing, are the ones who have to educate so many others. So hard it is, so many times, yet that is what we're left with.  However, inside of us we know what is usually right.  So do most but most don't understand unless they've been through it and like you say, each is different.

You do know the therapy you need. That is smart! You, unfortunately, may have to again be your best advocate.  That sucks big time given all you've been through and all you're going through. I always wonder why this is so, one on top of the other. We can't give up though.

As far as happiness goes, I read once that you said you need good feelings from others, like here. We all must try to focus the strongest part of our mind on those feelings, however small they may be and in little ways if needed.  I usually hurt when I wake up and could count so many things that are difficult from the way they were. I try (though not always successful) to look for whatever good I can find. Maybe I wake up and concentrate on how my broken ribs don't hurt as much as I remember, even if my other parts do.  Hope I don't sound nuts by saying that but don't let the bad stuff run your life.

Here is a challenge. Read what you wrote from the perspective of someone who cares greatly about you. Cross out the lines that that person would not want you to think and make comments they may make to you. For instance, cross out the 'I am stupid now' and point out to your self something like, 'wow, what a great advocate you are', just as I believe you are.

You deserve great care from others but you also deserve love from yourself. Take care Jackie, and whoever else reads this, it is true to you as well!

[Tom Tatlock]

Like you, I was exhausted by the 8 hours of neuro-psych testing. The physical exam part

happened the following day.  It had taken me 14 months to get the exam and we had drive to a Medical Center that was about 5 hours away. Locally, professionals had said that "you'll get better"; "you're too high functioning for these tests"; "we have nothing to offer but the passage of time"; "you look and sound so good"; etc.

So I had great hopes (unrealistic hopes) that they would identify the problems that were causing my "cognitive fatigue", "physical fatigue", trouble with concentration, sensitivity to noise and light, problems with balance, etc. Then they would have the tools and techniques to "fix me" so that I could return to my medical practice.

At the very end of the 2nd exhausting day I met with the neuropsychologist for a preliminary discussion of the results from the testing.

I was in tears. When I ask him if they could help try harder so that I could return to my practice of psychiatry, he said, "You don't need to try harder. We'll help you to try smarter."

He and I had our disagreements: he thought that I was depressed and that made the TBI symptoms worse; I thought that the depression was from the TBI and all of the problems that came from the TBI.

 

The neuro-psych. did identify some problem areas. Had more high tech. evaluation procedures which didn't show anything.

I did begin treatment: Cog. Rehab.; psychotherapy; medication.

 

The person with the TBI can't be their own case manager. Do you have someone who can help you find the right resources and who can advocate for/with you?

It was hard for me to ask for help and even harder to accept --- but fortunately my wife took over things that just drained me and overwhelmed me so I could use more energy to work on getting better.

Also continued a regular exercise program that I had started after my TBI and went to a Yoga class 3 times a week. Both of those have helped with balance.

The techniques of cognitive rehabilitation therapy have helped me a lot: 1.) learning my limits and trying to stay within them and at the same time working to expand those limits; 2.) scheduling and using regular rest periods; 3.) planning and prioritizing; 4.) listing "failures" then changing that title to "problems" and recording possible solutions to those problems so that I could use them or adaptations in the future.

On May 19th it will be 12 years since I fell off a ladder and sustained a "mild" TBI. Still improving .

Sorry to ramble. Hope this doesn't sound too preachy or too pompous. Your experiences touched me and were somewhat like mine --- though different, too.

[Mac]

It is one of the most aweful things to have to go through especially if you are in a emotional mode, it can really be hard , wish you luck

[Taylor]

it took me months to get over the process of my eval, it took them months to give me the results the whole process hurt me hope it goes well for you

[Jackie]

To BrokenBrilliant.

 

I used to pride myself on my intelligence I was so sharp and active before this TBI. I'm just starting to learn what I need to do for this short term memory stuff.  There is only so much time I can be down on myself.  And that clicked in when I woke up Saturday morning after the test.  

 

( I will tell you the test is extremely emotional.  I thought I was doing well until I was asked How far I went in school?  Then I knew I wasn't doing so hot.)

 

The upside about the test, it makes you understand where you are in life.  It made me want to fight and start exercise my brain and body..

 

Also one other great thing.  My friend Mike was thrown off his motorcycle when he was 19.  His skull was cracked apart he was also in a coma..He had so many surgery's.  He works for customs and border patrol he made it through....Its inspirational.