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ScotCharles
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Reged: 05/06/05
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Posts: 924
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Loc: Los Angeles
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I have HIV Associated Dementia after 24 Years
#241786 - 09/03/08 11:38 AM
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Sorry friends for my earlier angy post, but a diagnosis that you are losing control of your emotions and your higher brain functions due to HIV is most distressing.
My HIV specialist and my AIDS neurologist at UCLA have both told me that the occurrence of HIV dementia is not related to either viral load or CD4 count. The virus enters the brain shortly after infection and remains there protected by the blood brain barrier.
In the brain it infects cells in the brain and produces toxins that cause brain cells not infected to die. I recently had a spinal tap which found tens of thousands of HIV per ml of spinal fluid and protein left from dying brain cells. Fortunately the brain is a miraculous organ that quickly adapts to the loss of brain cells.
Nevertheless, I am now completely disabled as I cannot control my emotions, nor remember instructions, nor do multi-tasking work like driving a car. Fortunately, I planned for this event twenty years ago and I will have an ample income in my retirement.
If there is a lesson in what is happenning to me, it is this, "Fully live today." AIDS caused me to do everything I ever wanted to do, and I now have great memories to contemplate.
My doctors are urging me to consider a living arrangement in which I can move from independent living to full care. I have found several and next year my partner and I shall move into one of them.
One of you wrote that it is misleading to believe that HIV will not kill you. Until a way is found to kill the virus completely, we the infected will have to deal with the various shocks that HIV and the meds deliver. Eventually, for most of us, one of those shocks will kill us.
I had 24 good years, and I intend to have as many more as I can before the curtain comes down on my conciousness.
If you are depressed, or quick to anger, or forgetful, or find that you have unexplained weakness, get yourself to a neurologist with AIDS experience. You may have early stages of HIV dementia. Early identification will allow the doctors to treat the emotional problems which are at times so miserable that death is preferable. I sufferred for years with all those symptoms and the quality of my work and my life sufferred as well. I should have applied for disability retirement years ago.
Water over the dam, now.
Cheers,
ScotCharles
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Life is a river.
Carpe diem.
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Very sad indeed, thanks for sshareing with us here, it is a firm reminder as has recently been discussed, HIV is still alive and well, I sincerely wish you the best and hope that something turns up very soon that will first of all help you and perhaps the rest of that fall victim to this debilitating disease.
PS I read an article recently that medications and studies into other neurological disorders may prove to be effective in HIV
please do try and keep us updated with your situation
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How Many Roads Must A Man Walk Down Before He Admits Hes lost
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Bear60
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Reged: 12/21/05
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Hi Charles
No problem....I knew exactly what was going on with you when you posted that angry message. Our friend Jim developed something which affected him in much the same way. He passed away 2 years ago.
Its sad that you have to go through this. It just doesnt seem fair. I am glad you have a good partner who will look after you.
Joel
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6 ft tall poz bear in Philadelphia
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OhTam
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Reged: 02/03/06
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I don't post too often here usually I just read. For those that don't know, I am aids2hiv's wife.(Eric we finally got married). Anyways, I just want to say Charles we have been dealing with this for quite a while with Co. Sometimes his anger/temper is so bad it scares me. He went from being on Xanax for it to now Valium, which helps for the most part, but now we are facing none of the doctors want to give him that med anymore either because it is a controlled substance. I can totally understand your not being able to control the emotions, mood swings, etc. Co is not allowed to drive or be left alone and having someone come in so I can work would cost more than I would make, so I am his caregiver. He cannot keep track of time nor days more often than not, and forgets the simplest of things. He does not have sensations like hunger so we just have to tell him to eat and make sure he does. There are many other things as well.There are many times without realizing it the anger is directed at me, but that's not his fault, I just happen to be the one here. I am reduced to tears many times over it and I try to remember that he has no control over it. AIDS related dementia can be hard on all of those around you especially the ones you love. I have been told and am going to discuss with the doctors that sometimes the alzheimers meds will help slow the progression, not reverse it but slow it down some. I wish you all the best and hey feel free to blow up anytime  its better to do it on here than towards those you love.
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if it weren't for all the trash in this world we wouldn't need garbage men!
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AIDS2HIV
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Legend
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Reged: 12/19/05
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hey Charles....Welcome to the AIDS related dementia club. I been in it, since they diagnosed me over 3 years ago....
People don't realize what this disease is actually capable of, I see the fear literally make my loved ones walk on eggshells, because I too...have lost control of things like mood, mind,senses,etc. Eeven knowing where I aqm, or who I am ....without any recallection.
It's sad when I catch myself, not realizing what I am doing...to be told of what I did or said. I am one loose canon...
I've always been a hellraiser, but NEVER like I am now, my family gets embarrassed ( & rightfully so) when someone for instance, I get to the checkout,and something rings up different than priced....next thing I know I am asking why they (my wife & kids) are removing me from the store, their answer...."to keep you from going to jail to dad"
and even crazier, any type of mix, of the following: different sounds at same time, sounds and actions..let me give you an example, talking on the telephone, and the kids being in the same room.....9 outta 10 times. I'll hang up, or hand over the phone and go retreat to a diffy room.
there's times when literally a week will pass, and I dont even know it has passed, no recallection, no sense of where I am , or no sense of time.
and the list goes on.....my inability for my brain to no longer function (recall,sort,process,etc) is also...very humbling* I also have these seizure like episodes, my brain kinda just freezes all functions. My lower legs are all scarred up now, from my head telling my foot to raise (as I walk or step) my foot sending back the message it is raised, however it isnt....over I go. also, my equilibrium suffers greatly.
didnt want to litter this happy board with "gloom and doom" as many label it, I call it...a denial of Reality, on their part.
Charles, I have always liked you here, you area stand up guy and dont you let ANYONE tell you otherwise, because in our shoes...they'd do the same, prolly worse*
I want you to know, not only are you NOT alone in this aspect of this disease, You arent thought of, respected, viewed,judged,etc any differently by me simply because of what this disease will do to you
You ever need to talk, send me a PM and I will give ya my number*
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AIDS2HIV
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Legend
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Reged: 12/19/05
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also....the above post does NOT include the complications that Glaucoma has dumped on top of all this, for me.....
be grateful you planned ahead for this....I didnt, and it's DIFFICULT!!!!!!!
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ScotCharles, I read this yesterday, but I have been bogged down with life, work, and trying to get back in the swing of things since my 10 days off. First let me tell you that you have always been an inspiration to you. Although, I have some preparation in order, I am confident that I do not have enough. This disease has hit me hard, and so I take your advice and live each day like it is my last and hope for the best. I am only sending you good wishes and letting you know how much we care and appreciate you.. Co and Tam are family to me, and I miss you guys more than you know. HUGS... D
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RevAnn
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Reged: 08/17/06
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Dear Scot,
I am very sorry to hear about your current situation. I have looked forward to reading your post here. You are in my prayers.
Both you and Co are reminders of what can happen.
Tam, I so miss chatting, I know you are going through a very tough time, if you ever need to vent, please pm and I will give you my number. However if you don't have long distance, pm your number and I will call you.
Love and respect to all of you,
Ann
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Namu-Myoho-Renge-Kyo
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ScotCharles
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Legend
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Reged: 05/06/05
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Posts: 924
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Thanks to all of you for your understanding and care.
A2H was very comforting as I too had to give up driving before I got so angry at a fellow morotist that I chased him down and clubbed him to death with a tire iron. My most frightening episode was with a parking lot attendant at whom I threw a handful of change to pay for my parking and she called the security guard. Since then I don't drive and don't go out without a lot of medication and someone to go with me, it is far too dangerous.
This AIDS dementia is so depressing. I have trouble walking, balancing and tire out after the least effort, like making the bed. Most days, I spend fourteen hours sleeping. The boredom is sometimes beyond bearing. I do enjoy my partner pushing me around in a wheelchair and running interference with those we meet, so I don't lash out at them. I have tried to commit suicide many times in the last few months, but am too much of a Catholic to be serious about it. Thank god for the catechism of an Irish priest and Jesuit guilt.
I am considering some experimental therapy, that may help, but once a brain cell is dead it is gone for good.
Pray for me, friends, as I pray for you. Carpe diem, friends, seize the day, tomorrow is never guaranteed.
Peace and love.
ScotCharles
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Life is a river.
Carpe diem.
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AIDS2HIV
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Legend
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Scot take comfort in your dementia isnt so far that you made a rational decision of voluntarily not driving For me, the Dr's & the state took my privileges away!!
Nonetheless, it was for the better. Keep your chin up my friend, I got the PM, you will hear from me soon, I promise
Now you promise me a few things:
**No more Suicide attempts
**If your doctor will prescribe Valium it really does help, can turn a would be beating into a mere tongue lashing
**Also the study Tam pointed out is legit, and recent, however I cant recall where it was conducted.
** Finally, quit beating up the inner-child of my friend "Chuck" ~ That only adds to the depression...Accept,Embrace & Show-off what this is doing to you, to your community, without Fear...and you my friend will find what I have, a Pride that far outweighs ANYTHING this disease does to me.
Because my friend, by me doing just that, this disease doesnt ONLY do "it's thing" to me, but to my community as well, and that my friends, changes minds, changes communities, changes Life.
Look at what you have done with the career dealt to you, .....you can do the same with the disease dealt to you, You can come out the successor, regardless of "fate"
you will hear from me soon, take care of yourself, God Bless*
just for the record, I exploded on a real estate agent today, LOL...I look at it this way, if anything...they walk away with the seed planted " Damn, if thats what AIDS does to ya, I dont want it" hahahahaha
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