Why didn't anyone tell me about ADC (AIDS Dementia Complex)!?! Come on!

[Up2Late]

This is important! I can't say that I've ever been and AIDS Activist or even an advocate, but I have been interested in the subject for more than 20 years and I'd never even heard of it until just now!

Some of you may remember me, my best friend of more than 30 years (since I was in 4th Grade) just died of AIDS related illnesses, though he never told me he had HIV or AIDS in all the years I knew him.

More info on his death is at my Journal or here: <http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=364&topic_id=1743573&mesg_id=1743573>

and here: <http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=221&topic_id=38156&mesg_id=38370>

<http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=221&topic_id=38156&mesg_id=38156>

He had begun having serious Depressions a few years ago (about 1998), which resulted in several near suicides. I advised him to see a doctor, because it sounded like Manic/Depression to me, which is what he was diagnosed as having.

Since I last posted about my friends death, I also found out that:

1) He told NONE of his friends (only his Family) about his HIV/AIDS.

2) He stop taking the medication for his Manic/Depression (he was mostly Manic) soon after he first tried them, he said he didn't like how he felt on them.

3) He never sought treatment for his HIV/AIDS until about a year ago.

4) He withdrew contact from all but his most local friends over the last 3 to 6 years.

5) He stopped taking is AIDS drugs about a month before his death.

6) He refused treatment for a painful, broken tooth, which I suspect was infected, which he was taking large amounts of Tylenol for.

7) After stopping treatment, with his Liver and Kidneys failing, he basically drank himself into a Coma, a Coma that he never came out of.

I should probably say, he was always into odd Religions, (one was even a Dooms-day cult) and had been reading about reincarnation, though I don't think he understood it fully.

Also, when I finally got most of this information from his Sister, she asked me not to tell other people that he died of AIDS (oops, too late!), which I think is a very BAD idea, as he was the most sexually active person I've ever known, I still haven't replied to her about that one, but I hope to soon.

Now, just by doing a simple Google search of the words - AIDS Dementia - (no dashes), I've learned that ADS was probably an officially recognized diagnosis as early as 1998! Why is nobody here or in the media talking about this!?!?

My brother (and truthfully most of my family) has been dealing with Mental Illness for 25 years or more, so I should have heard of this (ADC), but I never did!

O.K., I'll admit that since my friend never told me he had AIDS I might not have been able to make this connection between my friend problems and ADS, but I might have if I knew about it.

PLEASE! Talk about this aspect of AIDS too! Don't tell me that a person with AIDS is even more ashamed that he/she is developing Mental Illness too.

Here's some links:

<http://www.thebody.com/treat/neuro_dementia.html>

<http://hivinsite.ucsf.edu/InSite?page=kb-04-01-03>

<http://www.aegis.com/topics/oi/oi-adc.html>

<http://www.projinf.org/fs/dementia.html>

AIDS Dementia Complex

April 2002

Dementia is a brain disorder that affects a person’s ability to think clearly and can impact his or her daily activities. AIDS dementia complex (ADC)—dementia caused by HIV infection—is a complicated syndrome made up of different nervous system and mental symptoms. These symptoms are somewhat common in people with HIV disease.

The frequency of ADC increases with advancing HIV disease and as CD4+ cell counts decrease. It is fairly uncommon in people with early HIV disease, but it’s more common in people with severely weakened immune systems and symptoms of advanced disease. Severe ADC is almost exclusively seen only in people with advanced HIV disease.

ADC consists of many conditions that can be of varying degrees and may progressively worsen. These conditions can easily be mistaken for symptoms of other common HIV-associated problems including depression, drug side effects or opportunistic infections that affect the brain like toxoplasmosis or lymphoma. Symptoms of ADC may include poor concentration, forgetfulness, loss of short- or long-term memory, social withdrawal, slowed thinking, short attention span, irritability, apathy (lack of caring or concern for oneself or others), weakness, poor coordination, impaired judgment, problems with vision and personality change.

Because ADC varies so much from person to person, it is poorly understood and has been reported and described in many conflicting ways. This publication will shed light on some of these issues as well as the available treatments for ADC.

(more at link) <http://www.projinf.org/fs/dementia.html>

[davidinalameda]

1. I'm sorry for your loss but AIDS related dementia is well known

the virus invades the brain in some victims

[MuseRider]

2. I did not know about it either

until after my brother's death. It all made sense after I learned about it.

[xchrom]

3. lol -- i understand your --uh -- surprise --

but i lost my partner to this disease years ago now -- and he ads -- bad.

i've been an aids activist -- off and on for years -- i GET TIRED.

you're finding out like the rest of us did -- one miserable disease at a time.

i'm sorry about your friend -- glad to have you join the fight -- and i LOVE to see your energy.

[uppityperson]

4. Been known about for a long time, doesn't come up in many conversations

HIV/AIDS can get you in a lot of nasty ways, very nasty. Ofra Haza (musician singer) died of it a couple yrs ago, family first said "pneumonia", but the next day said AIDS/HIV which was good of them, deciding to publicize it and maybe it would do some good. Sad thing for all involved, and the dementia really can be nasty. My condolences about your friend.

[Liberal Veteran]

5. It's really the only aspect of HIV that truly frightens me.

As someone who has been living with HIV for 20 years and taking HAART for 6 years, the notion of HIV dementia or any kind of cognitive impairment scares the hell out of me more than any other HIV-related problem that could crop up.

[Warpy]

6. AIDS dementia has been well known from the begginning

in the medical community. The information has always been out there.

It sounds like your friend has battled serious mental/emotional issues for a very long time, issues that predated the AIDS but which undoubtedly affected his ability to come to terms with HIV and seek treatment until it was pretty much too late.

AIDS dementia is an indicator of why the virus is so difficult to eliminate completely: it likes to hide in the central nervous system. Most drugs, even chemotherapy drugs, don't cross the blood-brain barrier.

I'm sorry for your loss.

[TallahasseeGrannie]

7. I'm so sorry for your loss

and your discomfort. Hang in there. Cyber hug from Grannie. Would a cookie help?

[nealmhughes]

8. Actually, most of my physicians think I have ARD...

I was in a truly sad shape in 2004, delusional and paranoid. Quit my job, thinking I had one waiting in Virginia. Never made it to Richmond...stayed in Virginia Beach for 2 weeks walking the beach, a blubbering idiot, manic to the extreme. After the tsunami, I wanted to go to Thailand and lead a recovery effort, stopping off in Dubai for the sultan there to fund me...
I thought a friend's house was my old one when mysterious agents were after me and broke open a window at the front door when my key didn't work. That ended up with me with a broken arm when tossed to the sidewalk and then when I could not figure out how to unlock a hotel door, the FD had to take the door off the hinges and my family sent me "home." I was sent to a neurologist after my arm was set and on HAART three weeks later. I have gained 40 lbs., am luckily "sane" and no more delusions or paranoia. But I have to take over $1000 worth of meds monthly that come only at the mercy of the Alabama legislature and the Republican Congress. Noone wants me to be an employee, unless it is to sweep floors for $6 per hours. I have 2 masters degrees and served in the USN as a submarine nuclear reactor operator for 6 years. I have worked since I was 16, at least part time, went in for my SSDI hearing and was denied. Went for the appeal and was denied, and am awaiting the second one next month for scheduling. The HIV caused a sudden stroke and my left carotid artery is 100% blocked and I had to learn to reuse my right hand and arm and still cannot carry much weight in my right hand, and I am right handed.
Shaming potential employers does not work. I lack helper monkey or walker, therefore am not visibly, good handicapped.
I live in the attic of my family's carriage house and have not had a cent in income for over a year and a half. This is what undiagnosed HIV does to one. I am 45 years old. I have to ask my mom or sister when I am low on toilet paper or soap. My life sucks, and I am trying to make the most of it, since I have my mind back to a degree again and have no real health problems, infections, etc. and my viral load is "undetectable" now and my CD 4 count is now near 300 from an original 85 in January 05. I try not to grumble, but when the administrative law judge told me I could be a greeter at WalMart, I burst into tears and said, "that is for retarted people or high school dropouts or people who are retired and bored -- how would I pay for anything if I lost ADAP and food stamps?"
The worst part is feeling superflous, when you have been active and independent and "successful" for 27 years. Most of my friends are too busy with their careers to take much notice, except for one who is working on his dissertation and lets me pretend to help him research and comes by for a few days every few months. But what can I do? Take to bed? No way. I just volunteered for Progressive Democrats of America and run a blog, http://screechingrats.wordpress.com and contribute here. Maybe I can make a difference, and Uncle Lyndon at least feeds me and my mom pays the utilities and ISP. I have 6 dogs to entertain me. I have miles of wilderness to hike and a creek in which to watch the fish. Life is ok, considering what I was used to, after all, I also want a Mercedes and a pony.
This is life with ARD. And there are but a few who give a shit.

[Up2Late]

9. I wish there was something comforting I could say, but I'm sure most words

...would just ring hollow.

Your mind seems good right now, but as I'm sure you know, that could change with little notice.

I hope you will reach out to your old friends and let them know that you might need some help in the future, unlike the way my old friend managed his last few years.

I can't even begin to tell you how hard it is knowing that, your closest friend died years before his time, because he was too embarrassed to ask for help, or thought that his friends wouldn't understand or abandon him if he told them of his problem.

Your true friends will want to know and help.

Good Luck. :hug: