HAND..anyone else??

[undeniable]

I was diagnosed with hiv affected neurological disorder about 3 years ago.  Anyone else deal with this?  Between that and greatly impaired short term memory from brain damage left by meningitis  I get sooo frustrated. 

It's really really trashing my relationship with my girl.  She is aspergers and remembers everthing and wants everything to be logical exact..  I'm so tired of arguing about things I dont even remember. 

Some days I just want to walk out into the world and be forgotten. 
It's been so long since I've had the freedom to just be.

[BT65]

Undeniable,
HAND stands for HIV-associated neurocognitive disorder (not trying to be a smart ass), and yes!!!  I have been dealing with this for the past couple/few years.  It's incredibly frustrating and a lot of people don't understand.  I just turned 50 and some people tell me the reason I can't remember anything is my age. But it's not because the things I forget should not be forgotten. 

I've learned to be very self forgiving. I was getting so frustrated with myself I made it hard to be able to have self respect.  But then I thought "why am I doing this?"  It's something I can't help, something I can't change, so I needed to just let things go when I can't remember.

I'm aware of Aspberger's. I work with developmentally delayed adults. Your girlfriend needs to understand your issues, it's only fair.  You seem to be okay with hers, she needs to reciprocate. If she doesn't I would seriously think about ending the relationship. You don't need anything else on your plate, especially someone who won't understand what you're going through.

Thanks for bringing this up.  I'm sure you'll hear more.

Betty

[wolfter]

I'm assuming you had cryptococcal meningitis?  This disease swells the brain and spinal cord and leaves some people with permanent damage.  I was diagnosed with HAND after developing meningitis.

That illness left me blind for a while and almost deaf due to the extremeness of the illness.  I regained a lot, but am left with many residual issues including memory loss, confusion and frustration.

My advice is to acknowledge it without dwelling on it.  Once all medical options are explored, you might have to accept the challenges.  I've learned to laugh at myself over these episodes. 

[Theyer]

The above is why this forum is so important for me. Betty & Greg you continue to surprise me , often leaving me humbled .

And  Miss Able your friend I imagine shouts loud if she feels she is being treated differently so tell her to fuck off and learn some more social skills about friends who have problems they can do little about. You get some rest dear heart and just BE maybe give your self permission to at least take a well earned holiday from your friend .

I have no doubt you will sort this out undeniable , all the best
Michael

[BT65]

I probably should have mentioned that about 15 years ago I was in a coma for a couple weeks.  I flat-lined when the doctor attempted to do an MRI of my brain and was clinically dead for about 4 minutes.  My memory, trying to think of a word I know that I want to say, sometimes trying to figure things out, etc. has never been the same.

Betty

[undeniable]

omg...  I seriously should have clarified...  'girl' is my 14 yr old daughter! lol  But I have told her to basically 'fuck off' a few times.  She is tough to deal with.  But then she is 14 so I guess that comes with the territory.

On the 'HAND' thanks for the clarification on that.  I was diagnosed after having cryptococcal meningitis too but I think I had it before.  I think it was why my job performance tanked in the year or so before and I had a hard time remembering my meds / appointments etc.  Maybe it was after the pcp pneumonia?  Anywho...

and wow!  a coma??  my hubby would freak.  Glad you all pulled through and are here.  I just feel and send love and peace to all of you.

Michelle

[J.R.E.]

I was diagnosed with hiv affected neurological disorder about 3 years ago.  Anyone else deal with this? 

Hi there!,...


Yes, I am  dealing with this.  I was tested back in May of 2014.  I guess the good news is, that I don't believe, there has been any noticeable decline, since those tests were done. I will probably get tested again later this year.

I just try to take things slowly and try to stay a little more focused and relaxed ( if that is possible ). I used to be such a multitasker,  but have cut back on that. For me the best ways to deal with this is to take things slow.  But, remembering short term events ( Like A few hours earlier) can sometimes be s little tricky.  Remembering something from 55 years ago, not a problem !

I reported the results of my tests, here on the site back in June of 2014.

You can read up read if you like, but the page numbers are out or order 


http://forums.poz.com/index.php?topic=54084.0


EDITED TO ADD: I was never diagnosed with meningitis


Take care----Ray

[harleymc]

My HAND is somewhat different, it mainly affects my motor control. My hand/eye co-ordination is in the worst 2% for my age.

[AlanBama]

This is one thing I have NOT had to deal with!   I know how frustrating it is for Betty, and I am sure you are experiencing much of the same.

I do have some memory loss, and do different 'tricks' to help out; lots of post-it notes, and leaving things out so that I am FORCED to not forget them (like laying it on my wallet or car keys).

Best wishes with your daughter; hopefully as she matures she will have a deeper understanding of what you are dealing with Michelle.

HUGS, Alan