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Author Topic: Anyone dealt with HIV Dementia: friend, lover, self  (Read 7205 times)

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Offline hart

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Anyone dealt with HIV Dementia: friend, lover, self
« on: August 23, 2007, 03:36:49 PM »
I'm new to the forums.  I am a long term survivor, since 1988 that I know, and probably before that.  I've been taking drugs since day-one, 4-5 years on AZT, which nearly killed me by making my life so miserable. :-\  Seems like I've been on everything since, though I've been pretty stable for the duration.  Got an AIDS diagnosis based only on the fact that my T-Cells dropped below 200 at some point.  They seem to have stabilized between 2-300 since then.  I've not had any opportunistic infections, but have had lots of drug side effects.  One of my hardest things to figure out is what is caused by HIV, the Drugs, or Aging itself.  I often wonder what it would be like to have just aged naturally, what would my body look like now?  How fat would my belly be, how skinny would my legs/arms/face be.  How white would my hair and beard be? blah, blah, blah!

Now I seem to be experiencing some symptoms which I believe might add up to be the beginnings of HIV Dementia... I'm loosing my ability to process language, I can't come up with the words that are right there in my mind, but I can't find them.  I stammer and say UUUMMMMMM allot.  I don't feel it looks too good at work, but they haven't thrown me out yet.  My memory is failing me too, though not as worrisome as the language.  Of course this seems to run in my family, the language thing AND Alzheimer's!  I'm having trouble with my eyes... I just had a thorough eye exam and the ophthalmologist gave me a clean bill of health, they are perfect she said!  I still am having trouble seeing, sort of blurry, sort of spots of blankness, haze around the edges. ???  I've begun to develop these milliseconds of loss of control of my extremedies... while I type here, I have these occasional jerks, the neurologist calls them myotonic jerks... they have ruled out seizures and I've been diagnosed with sleep apnea, which, causing exhaustion has been listed as the cause of these myotonic jerks.  If you add these all up, they sound a lot like; "HIV-associated dementia, characterized by, among other symptoms, memory loss, blurred vision, concentration deficits, speech difficulties and motor impairments."

Have any of you dealt with these symptoms yourself, been diagnosed with HIV-associated dementia, dealt with a friend, family member or lover who had had HIV dementia?  What is your perspective on this, probably the scariest of HIV-associated afflictions that there are... not something that might quickly kill you, but something that will slowly make you loose all semblance of normalcy, your ability to control your self.  Please, provide me with some feedback! :-[
POZ gay dad, two adopted boys now 4 and 5 yr old.
POZ since 1988, now 19 years.
Been on almost every med, now on Truvada, Ziagen, Norvir, Aptivus, Fuzeon for being POZ; Acyclovir for HERPIES; Paxil, Wellbutrin and Nortriptaline for DEPRESSION; serious pain meds, + neurontin for NEUROPATHY; +GERD; +ALLERGIES, etc.

Offline bear60

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Re: Anyone dealt with HIV Dementia: friend, lover, self
« Reply #1 on: August 23, 2007, 03:53:56 PM »
Hi
Welcome!
I too am a survivor but I am a Long Term Non Progressor. It is my policy not to speak about something unless I have first hand personal experience with it.
 I do not take HIV meds so I do not talk about that aspect of being HIV positive. (for example)
I have had a friend die recently from PML. His dementia was very subtle and I will say even undetectable. He was having serious thoughts of suicide, but we thought that was a side effect of medications he was taking.  He had emotional outbursts and became angry but not out of the ordinary.  He seemed fine up until the morning he was found naked in his apartment.... unconscious.  He had told us he was having problems focusing on the task at hand...which was moving. He was having trouble packing.  But still, we chalked that up to his being such a multi tasker that he was not properly focused and that everything would "be ok". Boy were we wrong.
In short I cannot help diagnose you because it seems to me dementia is too complex an issue to be easily diagnosed.  You need to talk to your doctor.
Poz Bear Type in Philadelphia

Offline hart

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Re: Anyone dealt with HIV Dementia: friend, lover, self
« Reply #2 on: August 23, 2007, 04:23:54 PM »
PML?
POZ gay dad, two adopted boys now 4 and 5 yr old.
POZ since 1988, now 19 years.
Been on almost every med, now on Truvada, Ziagen, Norvir, Aptivus, Fuzeon for being POZ; Acyclovir for HERPIES; Paxil, Wellbutrin and Nortriptaline for DEPRESSION; serious pain meds, + neurontin for NEUROPATHY; +GERD; +ALLERGIES, etc.

Offline gaspode

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Re: Anyone dealt with HIV Dementia: friend, lover, self
« Reply #3 on: August 23, 2007, 04:55:08 PM »
PML?

Progressive Multifocal Leukoencephalopathy, a CNS viral opportunistic infection, whose early symptoms can be similar to dementia. Not exclusive to people with HIV but affecting us much more so than other parts of the population. Loads of info out there about it

Offline bear60

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Re: Anyone dealt with HIV Dementia: friend, lover, self
« Reply #4 on: August 23, 2007, 05:26:48 PM »
Hart
I should have said that your Cd4 counts are a good predictor of Opportunistic Infections...PML is an opportunistic infection.  Our friend had become resistant to all medications and was enrolled in a Fuzeon study.  He was not able to get his CD4 count above 100.
Poz Bear Type in Philadelphia

Offline AlanBama

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Re: Anyone dealt with HIV Dementia: friend, lover, self
« Reply #5 on: August 23, 2007, 07:43:53 PM »
Hi hart

My partner of 14 years developed AIDS-related dementia.   He literally became a different person, changing a little each day.   We broke up (his choice, not mine) and dementia had a lot to do with that breakup.   It's a very cruel illness.

We still communicate by email, and I call him when I go to Atlanta.   His emails are garbled, words switched and jumbled, so much that sometimes they are difficult to read.   I will always care about him, he was my primary caregiver during the early to mid 90's when I was so ill with no immune system.   I owe him, big time.    He remains the beneficiary of my life insurance, should I go before him.

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline hart

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Re: Anyone dealt with HIV Dementia: friend, lover, self
« Reply #6 on: August 23, 2007, 07:49:37 PM »
How long have you been separated... Is your ex getting worse, or has it stabilized?  To what degree is he aware of the situation with which he is living?  How has it affected his life?
POZ gay dad, two adopted boys now 4 and 5 yr old.
POZ since 1988, now 19 years.
Been on almost every med, now on Truvada, Ziagen, Norvir, Aptivus, Fuzeon for being POZ; Acyclovir for HERPIES; Paxil, Wellbutrin and Nortriptaline for DEPRESSION; serious pain meds, + neurontin for NEUROPATHY; +GERD; +ALLERGIES, etc.

Offline Smoothstone

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Re: Anyone dealt with HIV Dementia: friend, lover, self
« Reply #7 on: August 23, 2007, 10:56:28 PM »
 Two parts. 1. I was an AZT refusnik.I was disagnosed with KS in 1987 and when AZT became available I gave it a try. That would be sometime in 87 or 88.  I took 1200 mg daily, the initial standard dose, but stopped after 30 days because of intolerable nausea, weakness,bad  aches when I swam or climbed. Did another 30 days at 600 mg. then tried 100 mg...still  had bad side effects and I stopped. ....I first experienced HIV dementia in 1988 making noticeable errors ...leaving out letters in easy to spell words, going blank on completing a sentence or finishing a thought...knowing the word/concept, but having an inability to produce it, and having confusion episodes with starting, stopping, spinning on accomplishing everyday tasks. One day I locked my key in the car 3 times...the third time with the car running.Very depressing to be aware that I was losing it.   I tried AZT for a week and it stopped the noticeable mental stuff. About a year later I had a recurrence of mental stuff and retried AZT again. A week of AZT did the trick again.

2.  Flash forward to about 1995-6, having exhausted nearly all treatment options because of intolerable side effects, I would have occasional mental capacity spells.  I entered a dementia trial in late '96, early '97?  and got ziagen.  Ziagen is supposed to have good brain penetration....that's why the dementia trial.Within 3 days of getting ziagen plus viracept and delavirdine, I could feel like my old self mental capacity wise. It was a wonderful feeling.  I had been aware of my mental capacity decline...it wasn't the happy bozo kind of dementia when one is unaware of decline. It was depressing to make mistakes on common, routine tasks...which I would ordinarily do like on automatic pilot.    Don't know your experience with ziagen. Definitely check with your doc and perhaps a second opinion. 
I still take ziagen,viracept, delavirdine and am experiencing no lipo problems....10 years later...so I lucked into a good combo for me. 

 There is a current test to screen out people who may have a bad reaction to Ziagen...check with doctor about this. if you haven't already tried ziagen....And also check with your doctor before stopping, switching, restarting ziagen. 

a small subset of folks have very bad reactions to ziagen.   Otherwise ziagen is very easy. The initial dose of ziagen that I got was twice the dose used today.
 
The potential for mental capacity recovery, even after noticeable decline, is very hopeful development.  That's why I shared my story. Good luck. Hank

Offline BT65

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Re: Anyone dealt with HIV Dementia: friend, lover, self
« Reply #8 on: August 24, 2007, 07:35:29 AM »
Can't really diagnose on these threads, so I say talk to your doctor and express your concerns. 

About your eyes, maybe you should get another ophthalmologist.  I don't know what your counts are, but the "dark spots" you're seeing should be checked out.  There is an eye test to check for CMV, one of the infections people with HIV seem prone to get. 

I had a few friends with dementia that constantly complained of having bugs inside of them.  But I think dementia may be different with different people. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline AlanBama

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Re: Anyone dealt with HIV Dementia: friend, lover, self
« Reply #9 on: August 24, 2007, 11:49:30 AM »
hart,

my ex is doing pretty well these days.   He's in pretty good shape, physically, with his HIV being fully suppressed....and, believe it or not, he still works a 40 hr a week job and is not on SSD!   (he works for an AIDS agency, so they are understanding)   I believe they have some sort of helper or something for him, who transcribes anything he needs to write (emails, letters, etc) into proper form.

I wish you the best of luck, and please let us know what you find out.

hugs,
Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline cayucosguy

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Re: Anyone dealt with HIV Dementia: friend, lover, self
« Reply #10 on: August 25, 2007, 04:45:08 PM »
It took me a long time to decide whether to respond to this thread....

Since my CD4's went below 50, my doctor warned me about possible "mental" or "dementia" problems.  I wasn't sure what he meant or even if he was serious until a couple of years ago.

I began forgetting simple, every-day type things, such as remembering to feed the birds, water the garden, etc.

Then within the past six month so so, I found myself going to work, sitting at my desk, and not remembering how to do the tasks I have done for the past ten years.  I literally sat at my desk and bawled - to the point that I had five or six co-workers holding/touching me & trying to get me to stop crying.

It is so frustrating, yet I am so blessed with the employer I have.  They (the mgt) try to understand and empathize what I am going through, they give me the latitude to do what I am able, and they are willing to let me just call-in and say I "just can't deal with it today" without penalizing me.  I know that everyone is not this lucky, but I am glad that this opportunity is available for me.

I sometimes lay in bed at night and wonder if I will even remember where I work or who my parents' are the next morning.  It has truly gotten that bad.

I no longer go out alone at night; I'm not allowed ( by law ) to drive after dark ( it seems to exacerbate the problem ), and I can no longer remember phone numbers, addresses, etc., even though I was as 4.4 graduate in mathematics and theoretical science.

I am not who I once was, but I am still me.  I will fight to remain me as hard as I can, and will never give up - and neither should you!

I hope this encourages you to continue the "fight through the fog" that can come with being long-term.

My love and best to you!

Vince

Offline mudman8

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Re: Anyone dealt with HIV Dementia: friend, lover, self
« Reply #11 on: August 25, 2007, 06:42:53 PM »
I have memory problems and can't do simple math anymore so I let Quicken do my bank account. I have times of looking for something and can picture it, but not come up with the word. Names escape me even if I just thought of it when I want to tell someone about a movie, or friend, I fumble or have to do the 'guess my line' game to have a friend fill in. I joke about it but it does bother me.

My parents wanted me to get a full time job for the last few years and I tried several times, but I finally told them I don't have the wherewithall to do a full 40 hours. I know they're embarassed to have a "disabled" son so I just tell their friends I'm a graphic designer, and can make my own hours and I"m constantly looking for work. They leave me alone after that.

My dad is 86 now and really having memory problems. Mom has to deal with it a lot more than I do, he can't remember the day times of appoinments etc.  It is frustrating on both sides. I'd say try to get a specialist that deals with memory problems (psychiatrist) along with your HIV Dr.
Life is analog

Offline sharkdiver

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Re: Anyone dealt with HIV Dementia: friend, lover, self
« Reply #12 on: August 25, 2007, 08:18:26 PM »
If you are worried and it appears that you are concerned about it make an appointment with (or get your doctor to make a referral)  with a

SPEECH LANGUAGE PATHOLOGIST for an assessment, especially one that specializes in neurolgical disorders. You can look at the American Speech Language Pathology and Audiology Association website  www.asha.org to locate one near you. We speech pathologists have years of training (and at least a Master's degree) in assessing, identifying and providing remediation of language disorders of all types.

I have been poz for about 24 years, never had an opportunistic infection, but I do recall being on one med a few years back that caused me to suffer from "anomia (that's the word that describes what you are going through) and it was frustrating. Luckily I was providing therapy to infants and young speech delayed kids so that wasn't too much of a problem until I had to chat with their parents  lol. 

Take care and let us know what you decide to do.

Sharkdiver (aka speechguy)


Offline zachysmom

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Re: Anyone dealt with HIV Dementia: friend, lover, self
« Reply #13 on: August 26, 2007, 12:13:44 AM »
Vic,
Yes fight through the fog.
That's exactly how I see or feel it....like i'm in a daze or somekind of fog sometimes.
I find sometimes I am unable to focus to long  or i'll get dizzy and have "momentary lapse of reason"/ I find at work that i'll be sailing  along and have to come to a full stop, because I suddenly feel I've forgotten something, and then go over my work, twice checking everything....I've been reassured by my doc everything is okay, and the eye doc gave me a clearance as well.
So I think my little mental episodes are syptoms of exhaustion.....I just have to stop peroidically through out the day and regroup or reboot my brain.
If it's trouble with memory, I leave little notes to remind me about things...sometimes you have to be smarter than your brain....
well I'm tired and am not typing as well as I would like, so I'll go and take a shower and have some tea.

I would talk with your doc, and try not to stress or dwell on it....
much love,
Nicole
From Russia with love,
Nicole

Offline aztecan

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Re: Anyone dealt with HIV Dementia: friend, lover, self
« Reply #14 on: August 26, 2007, 01:57:15 PM »
There was quite a discussion on this subject at one point, but I think it was in the old forums.

At any rate, most of us long-termers seem to experience this to some degree. For me, some days are worse than others.

I write a lot of things down or I forget to do them. That is one reason Sustiva was such a bad thing for me. I was forgetful to begin with and it made me really dippy.

That said, the only thing we can do is to continue to fight it. Try to reduce stress, which can help, and make sure you exercise your brain in some way or another every day.

Aside from that, we just plug along as best we can.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline bear60

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Re: Anyone dealt with HIV Dementia: friend, lover, self
« Reply #15 on: August 27, 2007, 10:04:12 AM »
"It took me a long time to decide whether to respond to this thread...."

I wanted to say thanks for responding. Vince, its only from your words that we truly understand how difficult this "demntia" issue is.
Poz Bear Type in Philadelphia

Offline hart

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Re: Anyone dealt with HIV Dementia: friend, lover, self
« Reply #16 on: August 27, 2007, 01:55:30 PM »
Sorry for the personal delay in responding to your heartfelt comments.   :-[  Thank you, Hank, mudman8, speechguy, Nichole, Mark and especially Vince.  I'm very glad that each of you responded to this thread!... Each of you said something that I could totally relate to.  Especially Vince, as I seem to be dealing with something quite like you are, though I think you are stricken a little harder. :-\  I really appreciate your honesty and frankness!

I have lots of less imposing problems, such as being so encapsulated when I'm driving, that I have to work hard to be aware of what's going on around me... Like I have a plastic bag over my head.  The biggest thing for me is dealing with the "anomia" that I'm dealing with...  I can't come up with people's names, even though I've worked with them for years. 

I have to look at the nametag on the cubicle of the guy across from me every morning to say "Hi!" to him.  I mostly worry about how it makes me look (dumb)... but I guess I just need to get over it and deal... I have been, it's been going on for years, I just now have a 'forum' to let out a little steam about it.  Thank you for listening and being there. :-*  [Oh, by the way, Hank, I am on Zerit, and have been for years, so that's not taking care of it for me. >:(]  At least I can cover my tracks online... you won't know if I have to look up your name while typing, will you... uh...

Thanks again, and I'll keep in touch with y'all. (I'm really a Yankee!)
POZ gay dad, two adopted boys now 4 and 5 yr old.
POZ since 1988, now 19 years.
Been on almost every med, now on Truvada, Ziagen, Norvir, Aptivus, Fuzeon for being POZ; Acyclovir for HERPIES; Paxil, Wellbutrin and Nortriptaline for DEPRESSION; serious pain meds, + neurontin for NEUROPATHY; +GERD; +ALLERGIES, etc.

Offline Smoothstone

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Re: Anyone dealt with HIV Dementia: friend, lover, self
« Reply #17 on: September 03, 2007, 02:13:55 AM »
Any info or experiences with minocycline which is a cheap drug used to treat acne skin problems?  Back in 2005, an HIV doc touted minocycline having potential as being protective for the brain against HIV.   3 years later?  update time?
I came across it at www.thebody.com    search " minocycline" ;and  also at http://health.groups.yahoo.com/group/PozHealth  search"minocycline" .  Hank

Offline chefrusty904

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Re: Anyone dealt with HIV Dementia: friend, lover, self
« Reply #18 on: September 03, 2007, 08:55:03 AM »
Thank you for bringing this subject to light
I have started experiencing alot of these symptoms, and thought I was going crazy for no reason.
I guess now that i know why  i can directly address these issues

Offline stupidgirl

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Re: Anyone dealt with HIV Dementia: friend, lover, self
« Reply #19 on: September 03, 2007, 05:53:12 PM »

Hi.  My now ex-husband.   He was positive, I was negative.   The marriage only lasted a little over a year, but I recall a big difference in his personality and such when he switched meds last fall.  He always kept his meds put away in a drawer in our bedroom, so I can't be sure as to what he was on vs. what he switched to.  I believe he was on sustiva.  I confronted him regarding his change in personality/memory/etc., just a little too late for the relationship though.  I have joined this website looking for others I can chat with regarding hivaids.  I can't run around discussing my failed marriage with people, because almost everyone we know doesn't know of his status.   Back to your question.  He was argumentive for no reason at odd times, and one time in particular stands out in my mind.  We had just had dinner at a steak house and we went to Target--we were at the checkout and he said "what do you want for dinner" He had completely forgot we had just ate.  That was the first of many odd behaviors I saw in him.  If you've recently changed meds., I would strongly suggest you take a look at a different one.  Maybe that will help?

Offline ubotts

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Re: Anyone dealt with HIV Dementia: friend, lover, self
« Reply #20 on: September 06, 2007, 09:35:05 AM »
HI there.
When i was with my lover of 1o yrs..way back in 1986, I asked the therapist, if dementia
has occurred in my lover.
She was really doing bad then, and her mind was not there at times.
Once she even picked up a knife and stabbed my rib cage...that's when I asked if dementia was possible in aids patients..
I was told NO....
But then they didn't know much..
Hell,  I lived with it and I knew more than these text book therapist did....
So your answer to your question..Is YES...Dementia does happen .... :-[
Live Love Laugh and dance like no ones watching.
Laughter is the best medicine, so try to have a laugh everyday..Even if your not feeling your best, think about something that was funny at one time in your life and work with it..   :o)

Offline AlanBama

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Re: Anyone dealt with HIV Dementia: friend, lover, self
« Reply #21 on: September 06, 2007, 06:27:52 PM »
Anyone interested in this thread may like to read Lisa's latest blog entry.   She describes her ongoing experiences with brain fog very well.....

hugs,

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline just_joe

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Re: Anyone dealt with HIV Dementia: friend, lover, self
« Reply #22 on: September 07, 2007, 02:44:41 AM »
I used to have a mind like a steal trap. I never forgot anything so when I started to forget or not remember I though it was dementia now I believe that a lot of it is simply getting old, There is only so much you can cram into a brain and if you don"t use it you loose it.

Offline RAB

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Re: Anyone dealt with HIV Dementia: friend, lover, self
« Reply #23 on: September 07, 2007, 09:35:24 AM »
Hart

I'm late to this discussion, but understand completely what you and others have described here.  (And Lisa describes in her latest blog.)

I won't go into all the details of my struggles again.  I think this was the thread that Aztecan was referring to.

http://forums.poz.com/index.php?topic=4429.0

I found the suggestions from grey_the_hunter to be helpful.  (He's never posted again in these forums unfortunately.) 

BTW, welcome to the forums.

RAB

edited for typo
« Last Edit: September 07, 2007, 09:37:02 AM by RAB »

Offline hart

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Re: Anyone dealt with HIV Dementia: friend, lover, self
« Reply #24 on: September 07, 2007, 11:53:01 AM »
 ;D  Thanks again for the responses! ::)

RAB- Thanks for the link to the old topic/thread, and in that first post you linked to an MSNBC piece on "neuroAIDS".  Something I've never heard of, perhaps the term "neuroAIDS" has not taken hold... I prefer it to "Dementia" which sounds so devistating and completely intolerable.  At least many of us are just living in a "brain fog" and not forgetting who our loved-ones are.

just_joe, I too don't really know whether what I'm experiencing is HIV, AGE, or HIV+AGE.  It's impossible to know.

She's NOT a stupidgirl ( >:( I sure don't like that name... I would never call you that, if it weren't the only reference you've made to yourself.  I'm sure you're not 'stupid'!  You may be new and uninformed, but not stupid!) - unfortunately, I've been on the same medication for several years, so that can't account for it, but thanks for your input!  ...and welcome to the forums.

And Smoothstone, I've never heard of "minocycline".  You might start a new thread with that as the topic.

The "others-of-you", thanks for your input.  This has been really helpful.jah
POZ gay dad, two adopted boys now 4 and 5 yr old.
POZ since 1988, now 19 years.
Been on almost every med, now on Truvada, Ziagen, Norvir, Aptivus, Fuzeon for being POZ; Acyclovir for HERPIES; Paxil, Wellbutrin and Nortriptaline for DEPRESSION; serious pain meds, + neurontin for NEUROPATHY; +GERD; +ALLERGIES, etc.

 


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