Need some guidance here....help please!! !

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I want to participate in a memory research project. I am convinced I have a developmental problem with my long term memory, specifically my declarative (especially semantic) and procedural memory. Needless to say....I have no idea what the problem is precisely, but I would assume it involves some sort of dysfunction with my Hippocampus or some other region in the medial temporal lobe that governs long term memory. I can't afford to go to a neurologist and my insurance won't cover it. I have had five neuropsych evals in my life and none of them suggested any substantial problems with my long-term memory. For example....I scored between "average" and "superior" on the Weschler Memory Scale I received on one test. I have also scored within the 90-something percentile on all the "Information" and "Vocabulary" subtests of the WAIS exams i've had. These subtests are supposed to be fairly decent indicators of LTM memory functioning as well. Nonetheless....after observing my own long-term memory for decades now and comparing it to everyone else's, (including... and maybe especially....others with NLD/AS/HFA) I am all-but 100% certain I have a severe impairment in this regard. Perhaps I could define it as a subtle-but-severe one. Too subtle to be picked up by the "radar" of these standard neuropsych evals maybe. In other words....my LTM memory problems are not as obvious (nor quite as severe) as the famous case of "HM" http://en.wikipedia.org/wiki/HM_(patient) but they don't seem any less debilitating in terms of the kind of jobs I can hold, my academic potential, skills, talents, etc......In terms of LTM, it's as if I have "shadow syndrome" that lies in the middle of the continuum between HM and normal.


Along with all my other neuropsychological *issues*, it has robbed me of any chance at a happy and successful adult life. I am 40 and I no longer have any hope whatsover....hope for a significantly better life would be absurdly unrealistic at this point.

So if I can't have any hope....i'd at least like an answer already since nearly 30 of my 40 years have been spent trying to figure what exactly IS wrong with my brain. Again....all I have to go on is what my neuropsych evals indicated. Based upon said evals, (and what the psychologists who tested me said about the results) i'm simply *another* NLD-er with an above-average/superior VIQ and an average/low-average PIQ (not that such a discrepancy ALONE is indicative of NLD, but it's a red flag at least) and the classic *Rourkian* criteria for probable/definite NLD. In other words....I should've had SOME *typical* NLD struggles in life...but I should NOT be functioning as poorly as the average mildly ret*d person in just about all areas of life!! ! So either these neuropsych evals of mine (and those who administred them) have SOMEHOW missed something very profound or i've SOMEHOW managed to exaggerate (for whatever god-awful reason) my neuropsych problems to an extent that would defy all description and reason. BTW....just as a precautionary preemptive measure, I really don't want to get into any semantical discussions regarding the words "poorly" and "functioning" in this context. Suffice it to say that I according to all my neuropsych evals and my life experiences (I was not seriously abused by my family, I was raised in financially stable middle class household, etc...) my adult outcome should not be anything close to what it is.

At at rate.....i've said all this before in several other posts, so pardon my redundancy. If it's not apparent by now....I am in a extremely desperate situation. Since many of you bright Aspies attend and/or work at universities, I am hoping one of you at least will know of a research study I could participate in. Obviously it has to be one which would be suitable for me and most of the studies i've found online are, of course, looking for participants with Alzheimer's, Parkinsons, Amnesia, TBI, etc...


Here's a few I found so far that I MIGHT have a snowball's chance at qualifying for.....but I seriously doubt it.


http://www.memory.rutgers.edu/memory/html/res.html

http://www.temple.edu/cnl/participate/R ... ipants.htm



I have not been officially diagnosed with any of the conditions required to qualify, but MAYBE (<gargantuan wishful thinking here i'm sure ) if I explain my unique situation, they might be interested. Or I could try to sneak in as one of the controls with "no prior neurological history or significant psychiatric history" J/K....that would be idiotic and equally unethical, but still, I AM desperate here.


I might contact Temple to inquire about their study. They DID say "if you believe you are amnesic and are interested in becoming involved in research contact HRPuffnStuff@....." Well.....all I can say is maybe developmental amnesia isn't ENTIRELY outside the realm of possibility in my case. I mean AS FAR AS ANYONE KNOWS... I didn't have any early Hypoxic-Ischemic insults (or whatever else) which may have resulted in Hippocampal damage in infancy.

Anyway....enough pointless speculating...I spend every waking nanosecond on that as it is. If any of you guys know of any studies that might be suitable for me, please let me know. Thanks to my nearly nonexistant financial resources, I really have no other recourse at this point. One more standard on-paper neuropsych eval administred by one more university will be of no use to me. I've already had five and I can't imagine a sixth would tell me anything substantially different. I need hard science here....I need some deeper probing into my memory issues in order to know whether they're real or imagined. They sure don't seem imagined and if they are.....then I really must be among the most delusional people ever. I mean seriously....I can't imagine ANYONE would "gaslight" themselves to this extent. Then again....anorexics often believe they're overweight when they're on the brink of starvation so who knows? I just don't trust that tests like the Weschler Memory Scale are up to the task, not in my case at least. Maybe an fMRI could tell me something and maybe it couldn't.


Please help me find some memory research studies I could volunteer for...I don't know where else to turn and all of this is incredibly frustrating!! ! Nobody believes me....everyone thinks my LTM is no worse then anyone else's. My family and the few friends I have act like walking fMRI scans or something and my own self-observations don't count for anything in their eyes. We're talking about the same people who thought there was NOTHING wrong with me in the neuropsychological sense until I received the results of my first eval at 23. I KNEW there was something wrong with my brain when I was seven freakin' years old!! !! !! They were proven wrong once, I was proven right and my self-observations are being dismissed YET AGAIN!! ! Not that I really care what anyone thinks at this point....I just want to get to the bottom of this hideous neuropsychological enigma once and for all. If I have exaggerated my problems....so be it. Then i'm a f***ing a**hole who utterly wasted his entire life for reasons I can't even begin to ponder. If not....if the root of all my problems is some fixed neurological impairment, well, then nothing could've been any different no matter what I did or how hard I tried.

Last edited by Horus on 22 Nov 2009, 2:45 am, edited 1 time in total.

Trouble is, noone really wants people there's only one of to set up research studies around: there's no potential for gain.

Unless your great-uncle Ferdie leaves you $20M or so to endow a research chair with...

Yes well.....they're obviously seeking PAID participants for many studies....it just that they all have "mass appeal" so to speak.


In other words.....the wealthy and important masses DEMAND research into Alzheimer's disease and breast cancer. The one in a million people like me can go hang and scavenge in a landfill for all they care. That is until that one in a million is the son or daughter of someone wealthy and important of course.

Yes well.....they're obviously seeking PAID participants for many studies....it just that they all have "mass appeal" so to speak.


In other words.....the wealthy and important masses DEMAND research into Alzheimer's disease and breast cancer. The one in a million people like me can go hang and scavenge in a landfill for all they care. That is until that one in a million is the son or daughter of someone wealthy and important of course.

Stop smoking weed it will get better. Seriously after 40 you start to suffer from CRS which is Can't Remember Sh*t (it's called getting older), from your post you don't have any issues. Would love to get a brain scan myself just for giggles and grins but if your daily life is not being affected don't worry about.

A. I have never smoked weed

B. My memory was no better or worse at 20. In any case, the idea that human memory gets worse with age BY NECESSITY is largely false.

C. It has a profound affect on my life and it always has.

BTW....I know I haven't been very specific in regards to the precise nature of the LTM problems I believe I have. It's all very complicated and difficult for me to explain. If any of you want further details, please let me know and I will describe it all to the best of my ability.



*Slight correction*


On four of the five WAIS tests i've had....my VIQ was 125, 127, 119 and 155 respectively. In other words....my VIQ scores have been between above-average-VERY superior, not above-average-superior as I claimed in my OP.

Have you considered the possibility of problems with attention rather than memory? If attention is impaired, you may never get things into your memory to begin with.

You should read "A Mind At A Time" by Dr. Mel Levine. It's written about children having academic difficulties but applies to adults as well. He researches learning disabilities and has a chapter on memoryand ways to figure out what exactly is wrong with somebody's long term memory and how to address that.

I've considered just about every possibility Callista. This seems to have little or nothing to do with attention. For one example, if i'm reading a book (especially something I enjoy) I often become absorbed in it.

Nonetheless....I only seem to be able to remember some general things about everything I read and a tiny amount of isolated details. It is this way with EVERYTHING irrespective of how many times I read the same material and how much it interests me. To illustrate....I enjoy reading about WW-II, I have read the ENTIRE story about the Battle of the Bulge COUNTLESS times in my life. Still...I can only remember a few general facts about it (the starting date of the offensive...a few of the commanders involved, etc....) and couple of isolated details. I should be an EXPERT about it all by now!! ! I should be able to remember what such and such army/division/regiment/company did at such and such a time, etc...and I can't. it might be excusable to forget a few isolated facts, but by now, I ought remember way more about then I obviously do. How could one ever be a history teacher if they remember only the tiniest fraction of what they studied and supposedly LEARNED about history in high school, college and grad school? Again....it's this way with everything and NOT just what I read. So no....I don't seem to have any significant problems with attention.


If it's any help....here's what was said about my Attention/concentration on one Neurpsych test I took:

"Attention and concentration abilities range from superior to impaired. Superior performance is shown on a task requiring him to shift perceptual sets to conform to changing demands and suppress an habitual response in favor of an unusual one. M's performance on forward mental tracking and complex reversed mental sequencing is also in the superior range. Average performance is seen on a sustained attention task for aurally discriminating between various closely related speech sounds and reduces to the low average range on a sustained attention and concentration task for discerning between several rhythmical patterns. Impairment is shown on a timed task of sustained attention and visual-motor tracking as well as cognitive flexibility and alternating attention".

Frankly....I really don't even know what alot of this means.....some it might as well be in Greek!! !

What an idiot I am....I can't even comprehend the diagnostic impressions of my own neuropsych exams!! !

All this and my "comprehension" subtest score on Verbal section of the WAIS (on this same neuropsych eval) was in the 84th% (above average.)

Thanks Janissy, i'll check that out A.S.A.P. More then anything....I need to figure out EXACTLY what's wrong with MY long term memory....if anything. Severe impairments in long term memory are pretty rare in younger people who have not had a TBI or something like a Hypoxic insult in infancy which could result in developemental amnesia. Mentally ret*d people have problems with long term memory....but according to every IQ test i've taken, i'm nothing close to mentally ret*d. Even a person who is TRULY at the borderline range of intellectual functioning would have a difficult time obtaining an FSIQ of 143 (VIQ-155/PIQ-111) on one of the WAIS tests they took no? Still....you wouldn't know i'm supposedly of average or better intelligence based upon the jobs i've been able to hold, my educational attainments, paucity of skills, talents, etc....It's not just the *typical* social/sensory/motor deficits either. I literally have problems performing (due to COMPREHENSION....NOT just the aforementioned) and/or remembering even the simplest tasks.

The idiosyncratic problems I have with spelling might be another indication of a LTM problem.


There are countless words...fairly simple ones too...that I never REMEMBER how to spell no matter how many times i've seen and used the correct spellings.


Example....the word "incompetent". Just now I had to look it up in order to remember if it was incompetEnt or incompetAnt. God knows how many times i've done that, just with this one word. I know I used the same word this very week (maybe even last night!! !) and I had to look up the correct spelling then.

Once again though......from the Achievement section of one of my neuropsych evals:


"His ability on writing responses to a variety of questions requiring knowledge of punctuation, capitalization, spelling and word usage is in the superior range".


Idk....I read all these accounts (on WP and elsewhere) of Aspies/Auties who obtain WAIS IQ scores in the mentally ret*d range and they actually are average-gifted on tests like Ravens. Many of the same perform academically within the average-gifted range. I seem to be the sole diametric opposite case. I score in the average-gifted range on WAIS IQ tests but my academic (at least in math/science) abilites seem to be within the mentally ret*d range. Not to mention all my other skills, talents and occupational abilities. I scored 50% on the Ravens....perfectly average. On the Matrix reasoning subtest (supposedly modeled on Ravens) included on three of the five WAIS exams i've taken, I obtained various scores. 14 on one (superior) 11 on another (average) and 7 (low average.)

My brain makes absolutely no sense whatsoever....forty years of this vexatious mystery is enough!! ! If I can't have any hope for a better life....at least it would be nice to have some answers.

If you guys have any other questions...please do ask. The desperation i'm feeling right now is beyond all description. My entire focus is on finding out what in god's name is wrong with me already. I can't even stand taking time out to eat, shower, or anything else. I am positively anhedonic and avolitional...I mean I always have been to some degree, but now it's worse than ever. That too might make sense if I was DX-ed with "Simple Deteriorative Disorder" ("Simple" Schizophrenia) or something, but I haven't been. I have been Dx-ed with schizoptypal PD on every neuropsych eval i've had though. I am going to weekly therapy at a local university....but I don't even know why i'm bothering. I'm just working with a psych grad student who admits he has little or no insight into what's wrong with me aside from everything that's on my neuropsych tests. I'm profoundly depressed, I stay up all night and often stay in bed (even if i'm not sleeping....I just lay there and TRY to go back to sleep though it never works of course) until 2-3pm. I can't afford medication right now and I don't even know if any would help. I've been on countless meds before and none of them ever did a thing for me. Suicide is the most rational thing a person such as myself could choose and it always has been. I am incapable of taking my own (simply because I fear death/pain) life, my self-preservation instinct seems unshakeable no matter how wretched my circumstances are. It's amazing that I can stand on the outside of myself looking in and see just how sick and defective I really am. I KNEW I was sick and defective long before anyone else did.

I bolded the part that really confuses me. On the one hand you do very well "shifting perceptual sets to conform to changing demands" and on the other hand you do very badly with "cognitive flexibility and alternating attention". Aren't these the same skills? How can you do so well on one and so badly on the other when they seem to be the same thing? Is it just because it's timed? (I doubt it because you said you had trouble retaining information read at your leisure about wwII which is untimed). Perhaps the solution to your mystery lies in figuring out exactly what differentiates "shifting perceptual sets to conform to changing demands" from "cognitive flexibility and alternating attention". Damned if I know. They look like the same thing to me. And yet you are great at one and terrible at the other. Like you said, it's subtle. I would ask a professional to explain the difference between those two apparently similar things to you because I think the key lies in what makes them different.

From another one of my neuropsych tests that I took 12 years ago (at 28.)


Emotion and personality

"Results of personality with the MCMI-II indicate M may be experiencing a conflict between a desire to withdrawl from social relationships and apprehension to act autonomously. Expectations of continued failure and humiliation may prevent him from making efforts to function independently, which may make him depend on persons on which he knows he can count. However, this dependency may create feelings of frustration and anger. Individuals with similar response patterns may experience emotional unrest, including periods of emotional outburst and of depersonalization, magical thinking, bizarre behavior and weariness of social encounters. In addition, they may have poor self-worth and may feel beleagured and disparaged by others, which may lead to moodniss and mistrust. This combination of inability to act independently due to self-doubts and mistrust in others many times combine to lead individuals into an ineffectual life pattern of wandering desultorily and disjointedly in peripheral social roles. Results from the Rorschach basically confirm the findings of the MCMI-II. Individuals with similar patterns of scores in the Rorschach are prone to frequent episodes of depression and emotional disturbance. This was confirmed by results of the BDI (BDI=24). They appear under chronic stress which may at times impair their capacity to act rationally and may interfere with their capacity for control. In addition, M appears to use an idiosyncratic approach to his behaviors. While there were some indications of dissociate thinking, they were not psychotic in nature. Rather, it appears that, when presented with a high level of stimulation, M's predominant coping mechanism of active fantasy is triggered. It is likely he spends a large amount of cognitive and emotional time and energy engaged in fantasy. This may be beneficial or problematic, depending on the circumstances. If this flight to fantasy is used appropriately, when other, more interactive and assertive coping mechanisms are not available, then this would probably allow M to cope sufficiently with the stimulus. However, if this approach is the only one used, it can lead to social withdrawl and an inability to handle situations where social interaction is necessary. In addition, the large amount of morbid content of his answers, combined with an idiosyncractic approach, suggest the possibility of a traumatic history. Finally, the results of the Rorschach confirm M's social withdrawl, difficulty controlling emotional displays and poor self-esteem".


Summary and Diagnostic Impressions


"M is a 28 y/o single Caucasian man who works as a waiter and is in his second year of studies at Community College. On the WAIS-III, M obtained the following scores: VCI=131, PO=89, WM=104 and PS=99. His FSIQ of 112 places his overall estimated cognitive abilities in the High Average range. On the Woodcock-Johnson Test of Achivement he is achieving commensurate with his level of formal education in reading (SS=104) and Writing (SS=118). He is achieving below expectations in mathematics (SS=93). Results of personality testing suggest M spends significant amounts of time and energy engaged in fantasy rather than active participation with the outside world. While there are clear indications of social alienation, morbid thought content and idiosyncratic approaches to the percepts, no indications of psychosis were seen. Response characteristics were also consistent with patients who may have a problem with anger management. Results of this examination are not consistent with a diagnosis of Asperger's Disorder. That is, although M shows a qualitative impairment in social interactions, he does not engage in a repetitive and stereotyped pattern of behaviors, interests and activities. In summary, results of cognitive and achievement testing are consistent with a nonverbal learning disability that is manifested as difficulty with higher math concepts. According to the DSM-IV, M meets criteria for Learning Disorder Not Otherwise Specified. In addition, his pervasive pattern of social and interpersonal deficits marked by acute discomfort with, and reduced capacity for, close relationships as well as by cognitive and perceptual distortions and eccentricities of behavior, indicate M meets the diagnostic criteria for Schizotypal Personality Disorder with avoidant personality traits".


Don't know why I shared all this really. Idk....I need all the insight into my brain I can get.

Your guess is as good as mine Janissy. I don't know if it has anything to do with it being timed. The "professionals" i've seen thus far seem as clueless as I am really. Something tells me this has little or nothing to do with my problems (again...real or imagined) with long-term memory though. I am at such a loss here I really don't know what else to think or where else to turn.