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Caregiver

Does anyone here experience the disconnect between "doing well" on a neuropsych evaluation versus what reality is like?

There is no doubt my husband struggles with anterograde amnesia and executive function disorder, among other cognitive challenges, but the test doesn't seem to reveal any "problems". How did your neuropsychologist respond to the disconnect and what treatments were offered, if any?

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2
Survivor

High IQ can mask deficits. Type A personality can, also. A good neuropsychologist will recognize these and choose test elements to compensate. Even after three concussions (and having lost the ability to read or translate any other type of symbolic notation,) my post-TBI IQ still tested over 150. I was fortunate to have a psychiatrist who recognized and alerted my neuropsych beforehand to the potential impact of this on my test performance. What we've lost may seem to some people to be secondary to that which we have left with which to work, but there is an excruciating sense of LOSS there - loss of who we were and how we were - that isn't always revealed by testing. It's a loss of our sense of SELF. Crushing, really, regardless of "how much we may still have left." This loss of self translates into loss of confidence, lack of familiarity with our own responses, and hesitations and insecurities which can reduce our performance on many levels - not just the cognitive. Bearing up emotionally under such feelings of loss and disorientation can be exhausting in ways that are almost impossible to explain to those who've never experienced it...

Survivor

Well my neuropsychologist testing resulted in a $6k bill and not a jot of help 14 yrs ago. I think she told me I was making things up while I sat there unable to communicate that I was in so much pain that everything was a blur. Her testing was unable to identify my inability to communicate, sequence or perform executive function tasks. 14 yrs later I have speech therapy twice a week (for the last 4 yrs) and we just realized a few months ago that I literally don't have the ability to multitask! During this last year I've been able to communicate about things I was struggling with 14 yrs ago! I have strict instructions not to walk and talk, if I'm doing a task it's only the one task.

As far as I'm concerned neuropsychologists are not worth the time or money. Get a good speech/cognitive therapist and plan on spending a few years at it. I am on my 4th speech therapist - we have a brain injury association here in kansas called Minds Matter and they come from there. The amount I've learned and improved has been amazing. I'm not planning on stopping any time soon. I actually don't want to live in KS really any more, but I'm staying coz of minds matter!!

My first speech therapist was at our local hospital. She spent 4 months getting me to stop doing all the things I had compensated incorrectly and then said I don't need any more speech therapy. This sent me into chaos because then I had no ability to function. Luckily my doc sent me to minds matter. Rewiring correct compensation does not happen in just a few months. So make sure to stick at it either with you taking over or the therapist doing it