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In Which I Lament the Loss of My Cognitive Prowess

Nov 01, 2011 - 7 comments

I have been pretty emotional the last couple of days. I have not cried a little then quickly tried to stop. Never seems like a good time. But I think I need to sit down and have a good cry.

It began while I was reading the old thread about lifestyle changes and coping. Cognitive changes scare the pants off me. That is because I have them. When I read about symptoms I do not have, like incontinence, I think, "There but for the grace of God go I." When I read about cognitive symptoms that are worse than mine, I think, "That is my future. $hit."

This post could come off as really egotistical. But it is honestly something I am really struggling with, and I have a strange compulsion to share. Still, I hesitated. Usually when people realize how smart I am (which I try to avoid), they see me as a freak. I am pretty insecure about it.

I have always been smart. Like off-the-charts smart. Like scored-in-the-99th-percentile-of-the-GRE-without-studying smart. The weird thing is that I did not know I was super smart until earlier this year, when I considered what an IQ of 150 really means. A psychologist friend had made remarked that a child with an IQ of 130 was as different from a regular person as a child with an IQ of 70. Which means that I am as different from a regular person as someone with an IQ of 50? I had never thought of it in those terms, and it was mind blowing.

My intelligence was never something I focused on or really cared about. I took it for granted. I did not realize how good I had it--how easy things were for me. As soon as I did realize the magnitude of this gift, I was incredibly appreciative, and I figuratively high fived my brain daily for the wonderful things it could do. I am a religious person and absolutely consider it a gift from God. I do not think there is anything I did to merit it, and I also did not think it was just chance.

Three months after I recognized what I had, it began to fade.

And now?

Sometimes I do not remember how to find something on my computer.

Sometimes I do not know what to put on my toothbrush (note to self: not hand soap).

Sometimes I forget where I am going.

Sometimes I am late because I have trouble determining when I should leave the house. Or do not even realize that I should leave before something starts--forget to consider driving time.

Sometimes I cannot think of the word I want, and I use whatever comes to mind.

Sometimes I misspell words. I scrupulously review everything I write for errors, so it takes me longer to write my many daily emails.

Sometimes I do not understand what people say.

These things do not happen all the time.. maybe not even often.. but to me they are a big deal. Sure, I can implement strategies to support my cognitive problems--I have worked with people who have difficulty with memory, attention, and language. The irony that I am now one of them is not lost on me.

I sometimes laugh at my cognitive lapses. But other times I am scared. Terrified. This is becoming more and more distressing to me. Losing ground in other areas, such as balance and sensation, *****. But losing ground cognitively is different for me. It shakes my self concept, my identity. Without my intelligence, who am I?

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1831849 tn?1383228392
by kwarendorf, Nov 01, 2011
Cog fog is the thing I too dread more than anything. I can find a way to deal with spasticity, balance challenges, bouts of double vision etc., but not being in control of my mind scares the sh*t out of me! Every time I can;t get a word from my brain  out of my mouth I think "Oh no, it's starting!"...

1627868 tn?1333886342
by sarahw244, Nov 02, 2011
You don't know me but I saw this on the right hand side of the screen and felt compelled to respond.  I have been going through something similar the past few months.  I am a 31 year old wife, mother, and student.  I have been going to school for years, 8 to be exact.  I am not smart like you in any sense, but I am on the smarter side as well or at least I was...

My life has been school, school, school for the last 8 years.  Yes I work and raise my kids, etc, but my main focus has been school.  The last few months have been very difficult for me!  I am finding it harder everyday to concentrate, focus, multi-task, and really learn new things properly.  It's like now I memorize something to get through a test and once the test is over the info is gone.  This has never been a problem in the past.

I, too, sometimes have problems understanding what people say.  It's not that I don't hear them, I just don't understand them or it takes longer for it to fully register in my brain.  I also mix up words.  I know what I want to say and it comes out wrong.  Or I don't know what I want to say and I stop in mid-sentence and can't/don't finish a thought.  I feel like people look at me like I ditzy or absent-minded, which I'm not.

What happened to me today was I failed something at school, a final demonstration of sorts.  After I failed, the instructor sat me down and had a long talk with me.  To make a long story short, it ended with me crying.  All about the same things you write about.   I didn't even realize it was bothering me as bad as it is until today.  And I feel bad in a way for my instructor because the emotions kinda came out of nowhere, lol.  I am scared about what I am losing and what is to come.  I am terrified that all the blood, sweat, and tears over the last 8 years has all been for nothing.  Not to mention the 10's of thousands of dollars in student loans.

I have worked in healthcare my entire adult life and I have always said that I think I could handle losing physical things; walking, vision, etc.  But I would never want to lose my ability to think and understand and like the person above me said, losing control of my mind.

I just wanted you to know that you are not alone in your feelings!  I'm sorry that you are going through this, but I'm glad I saw this because it makes me feel like I'm not alone either.  
Sarah

1760800 tn?1406753451
by Jacksmom516, Nov 03, 2011
What to say -  I think that cognitive loss is probably the one thing all of us with neuro issues fears the most - as you all said the physical challanges can be handled with canes, walkers, wheelchairs, etc but the mental issues are something else.  I do find myself slowly losing my short term memory - silly things like walking out without my keys, forgetting to grab the garbage or just today poured myself a cup of coffee and walked out without it.  Its the small things that make you worry about the things to come.  It has often been said that i have a memory of an elephant and when I find myself forgetting the littlest of things it is daunting.

None of us who struggles with neuro issues is alone in this fight - I find myself even more drawn to combating the problem by reading more working more puzzles anything to tax my brain and make it work more perhaps to overcompensate but to make sure in my own head I am not losing it all!



559187 tn?1330782856
by Sarahsmom46, Nov 03, 2011
I think that for a majority of us, losing our cognifive skills is the hardes to deal with.  When my doctor brings up the "how long do you think you will be able to continue working" thing, I tell him that I plan on working until I lose my cog skills to the point where I foget where I work.  :)  

We can overcome the physical disablity of the MS to a greater degree than we can overcome the cognitive disability.  But, there are tricks that we can learn so hopefully neither of us has to deal with it for a very long time - hopefully.  For example, I also forget what to put on the toothbrush, thought that was a funny thing in common, and I used to be not only a meticulous speller but also punctual to the second.  Now I miss appointments all the time.  

While I was in the hospital I mentioned my cog issues to the doctor.  He told me that the speech therapist may be able to help me out.  I didn't realize that speech therapist also help with these issues.  I can't remember anything she told me (fortunatley she gave me lots of handouts) but one thing.  She asked me if life ended when I forgot what to put on my toothbrush and I said "no".  She asked if everything fell apart when I put an empty pan in the freezer and I again said "no". She then said not to worry about making these mistakes they actually happen to most people at various times in their lives and just laugh at it when it does.  On the one hand that must have seemed a reassuring thing for her to tell me, but I am not very reassured. These things aren't supposed to be happening to me.  I hope someday I can laugh at it but in the meantime, and like Sarah just said, we are not alone.  

Let's hope any cog decline is far, far off in the future.  

Julie

1394601 tn?1328032308
by Sumanadevii, Nov 03, 2011
I do think, Beachcomber, that it is insecurities that make you feel like people look at you like a "freak" when they realize how smart you are as you state above.  I have five gifted sons ranging in IQ of 130 to 168.  All fit within their social peer groups as adults with no problem.  However, I would say it is your giftedness that might make you more afraid of what is to come because of your reading and ability to comprehend beyond the average.  You can probably read and understand medical journals and studies better than average.

Schools (and I am not saying your district did this) play a huge roll in how a gifted child fits into their social groups.  I had one son that could play classical music on the piano by third grade.  He played by ear and never had a lesson.  I remember the principal calling me and asking if he could prepare another piece because he had played Christmas music for them.  I said they had the wrong child that he didn't know how to play the piano.  Well, I was wrong and so I asked him if he could play something more for the Spring talent show.  He chose some composer I had never heard about.....................knowing nothing about classical music.  So I asked the principal to please not make a big deal over it.  Just allow him to play with no comments about teaching himself.Unfortunatelyly, she chose to announce to the student body and parents how remarkable he was because he had never had a lesson.  I, having a low IQ but a great deal of common sense took her to task over it.  The same was said of one of my sons that won not only the school spelling bee but district in second grade. No, I said, there was to be no write up in the paper.  No pictures in the paper. NO NO NO NO!!!  The schools begin to make them feel different than their peers and thus the problem begins.  So a parent needs to be very involved ...just as involved for a gifted student as for a learning disabled (I had both ends of the spectrum here).  I was vocal and did not allow skipping of grades, going beyond what was given in the regular classroom, etc.  They may have been gifted but the real lesson for them was the discipline to fit within their own peer group.

My opinion is cognitive changes would be much harder than the physical.  For you even harder as I take from your post that a great deal of your"self" has been based on your IQ.  My "self" was based on my physical "self".  My art and ability to build huge displays (real life Winnie Pooh tree, etc.).  That has been taken from me.  I, too, mourn as you do.  I don't blame you for wanting to curl up in a fetal position and cry.  It is like starting over.  Trying to make a new us.  

I guess I question is it possible for us to do that?  I sure haven't found the answer.  If any do, I hope it is shared here.  All I can say here is...it is okay to mourn.  It is okay to be sad.  It is okay to be scared.  We are watching as we lose part of our "self" each day.  I doubt there is a shrink in the world that can make that okay...for any of us........

198419 tn?1360242356
by sllowe, Nov 03, 2011
BeachC -
Those who love you, know who you are. Those who view you other than who you are - are not worth your worry :)

Your old self is still there, albeit it delayed, slipped up, and more difficult to count on - on the fly. You'll find the glimmers inbetween encouraging and exciting :)

Lifestyle change is definitely of the hardest to accept and adapt with for sure :(

(((hugs))
~One of them too



1740498 tn?1328962585
by beachcomber13, Nov 03, 2011
Thanks all, for the kind words. It really is wonderful to have this community and not need to feel alone.

Julie, you made me laugh. That SLP was right: everyone has cognitive slips. A friend was telling me how the other day she put the milk in a cabinet. And she does not have MS or anything else wrong! Well, she is deaf... but she certainly knows where the milk goes! Yes, I guess everyone makes those kinds of mistakes.

Sumana, if you can believe it, I did not go to school until high school. Until then, I just hung out with my sister every day. In high school I hung with the other kids in my classes. Latin. Calculus. Microbiology. I do not think I was even exposed to normal kids, lol. And I did skip grades, so that did not help anything. In college I fit in just fine--by hiding my intelligence! I quickly learned to speak and act like "normal" people. Maybe right, maybe not, but it worked for me.

Jacksmom, I know what you mean about those small lapses. What I worry about is that the lapses will get bigger. Like when I went to the MS dinner a couple of weeks ago. The woman I sat next to asked my name half a dozen times. Not "Sorry, what was your name again?" No, she seemed to think she was introducing herself for the first time each time. I wanted to run screaming from the room. Not me. Please!

Sarah, I hope you can survive your grad program! That experience with the assignment sounds terrible. I am so sorry that happened to you. MS is just not fair, but I guess life is not fair. I want to go back for my PhD, but I do not know if it is a good idea.

Kwarendorf, that is how it starts! Just kidding, you might be fine. I hope it does not happen to you, but it seems like many of us struggle cognitively.

You know.. knock wood.. the last couple of days my brain has behaved so much better. I was getting my work done quickly and feeling more "with it." We will see if it is real improvement or just the regular ups and downs of MS. Now I am having trouble with my leg going numb. Whatever.

Shelly, you really gave me something to think about. That is true that people who love me know who I am. And I am fortunate to have many people who love me. Hm, come to think of it, they do not love me because I am smart. They do not care that I am smart. :)

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