HAND — What is it? And why should you care? Well, it effects over 50% of our population (HIV+ peeps). It stands for HIV-Associated Neurocognitive Disorder. Sounds rather daunting doesn't it?
So, the brain is a muscle. It has way more than that going on. It has a nervous system and fluids, a blood supply that's supposed to be "clean". To put it in the plainest of terms. It's inflammation and nerve issues.
What's disturbing to me is the possible causes. Why is this happening to us? To me? It might be what they call "therapeutic toxicity" or getting old and the degeneration of our neurological system and/or inflammation. I am fairly sure they mean inflammation in the brain or the neurological system of the brain. There is a whole other subject of NeuroAIDS that sits parallel to HAND.
This is something I have been dealing with for 23 years. In the beginning they had no clue. There were endless tests and scans. Evaluations and interviews, specialists, etc… Oh, the wonder of being first at something unexplained! I am so happy and sad at the same time that the medical community has at least tried to put a label on it. Even though they have yet to figure it out. I think it is much more complicated than they think, as it has changed its role on me over the years. From a Dx of Dementia and a prognosis of vegetative status, then disability for years and me saying hell no and fighting back mentally with everything I had.
From the start, my HIV journey has been unpredictable, I color outside the lines. They said I had six months to live 34 years ago… Here I am. I was supposed to be in a vegetative, disabled state 24 years ago and here I am, earned a bachelors degree and still standing.
However, I will say it is a daily struggle with the cognitive buzz, the mental fog and the darn short term memory loss. The brain is a muscle, that's what I thought 24 years ago when I challenged myself to fight. I read, I did puzzles. I cried because it actually mentally felt uncomfortable. If there was a description of a brain feeling that I could compare it to so that you could understand, I would explain. We get headaches. This isn't a headache. It's a buzz, a heavy cobweb, cotton brain feeling that is rather uncomfortable and all I want to do is take a nap. It doesn't stay intense, it comes on when I have been working on something super challenging. At least that's how far I have gotten in the fight.
In the beginning it was the simple things I had to fight my way thru. Now it's a struggle to maintain every day.
Now I read that there are three classifications of this HAND. Asymptomatic neurocognitive impairment, Mild neurocognitive impairment, and HIV associated dementia.
Now I can hear you saying that this must happen when we stop taking our meds. Viral load goes up and CD4 goes down. Nope, that's not the issue here. This is the brain we are talking about and it is floating in its very own universe. Could be the meds we take, could be the HIV. I have a few theories, but the sad thing is that with all the confusion about how to figure this HAND stuff out… none of the medical scientists seem to be listening. They are all arguing about what to call it. How to test for it. They are so far down the rabbit hole within their clinical opinions that they haven't come up for a breath of fresh air or back to the bottom line- the patient. Us.
So my peeps, I wanted you to know about this. It is or will affect at least 50% of us. The more you know, the better prepared you are. The last clinic I attended really had no clue about HAND. If you have to go online and dig up a research article to stuff in your clinician's face, then do it. Don't suffer in silence and think it's just you! HIV is difficult enough.
HAND is much like an opportunistic infection, silently waiting to creep up on you. Be prepared and take charge. You take care of you, nobody else will.
Much love- Sologirl.
For more information about HAND, please see our fact sheet HIV And the Brain; if you think you may be experiencing symptoms of HAND, speak to a healthcare professional.
