Lisa's POZ Blog

Lisa,

You have always impressed me - from the first day I spoke with you.

I'm sorry to see this happening to you.

I have no words of wisdom, just hopes that you will be able to remember how much you are loved by many of us.

Lisa,

I've had the same problem....maybe not quite so severe....for about five years now...and was also diagnosed w/the beginning stages of HIV dementia. I didn't let the diagnosis bother me as I always felt they were wrong...as i've been diagnosed with the wrong condition many many times over my life. I totally understand your hopes being dashed by the news about the brain damage being irreversible...as I am also concerned. I'm currently on disability and my only true dream for the future (& a life of normalcy) is going back to college...but was waiting until the "brain fog" lifted. Now that this new news has come out I'm just not sure about whether that's going to be practical or not. I'm writing you though to say "don't give up hope". That's the only thing that us people with HIV/AIDS have. Hell....many of us have lived way over the time originally expected. My "brain fog" has gotten much much better over time....so take your med's, count your blessing's, try and enjoy life as much as possible....and try and not give up on hope.

Take care of yourself.

Jeffery

Thank you both gentlemen. I appreciate your thoughts.

HI lisa,
I identify with what you have to say,
I was highly functioning Ad Agency exec in NYC-
I feel like I'm operating at 1/100th of my capacity now. That "brain fog" is very accurate description. I take Effexor, an antidepressant and it helps somewhat, I can tell the difference as I - in moment of madness- decided I wanted to get rid of any/all drugs - and went off Effexor for a 6 month period - WRONG - thing for me to do - brain fog became brain blackout- forgetting whole sentences, staring into space in frontn of computer. mind wandering off on tangents.

Hang in there, I find I need to accept my slower pace of life, and adjust my work schedule accordingly - I leave lots of time for naps. THe money part is still a big challenge.

Big Hugs
Scott

Lisa,
Hang in there!
I'm rooting for you!
Sincerely,
Sara

Lisa,

I am sorry this is happening to you honey. I hope something can be done to at least slow it down; I understand your fear and frustration, and am experiencing it myself, but to a lesser degree than your own.

We may forget a lot of things..but I don't think I could ever forget you!

love,
Alan

I just wanted to write a note to tell you that you can function even with HIV dementia. I was diagosed in 2000 and I see changes periodically that make me modify how I live my life. It is frustrating like you said when you go into a room in your place and can't remember what or why your there. I just go back to where I was last and look for clues as to what may trigger my memory. Sometimes it works. I have the most difficulty if I don't write it down. On bad days I carry a tablet to help me function. Maybe that would help you. Take care and I can sympathize with your emotiions and frustrations.

Ron

Lisa, I can relate completely with your issues. At one time my kids urged me to try out for Jeopardy!, but now I'm lucky if I can even answer half the questions (actually, question half the answers.) I'm far more glib with the written word than with the spoken; I lose my train of thought when speaking to folks in a meeting or even at home. At least at home I am forgiven. I feel, but don't see, fingers pointing at me, identifying me as someone with a brain gone to mush.

At one time I thought that perhaps I was smoking too much weed but haven't seen the stuff in months. My thoughts are slowly coming back to me but I just think it's old AIDS. Adderall, rather than Ritalin, has been a little help. There's a generic equivalent of Adderall and I have my doc prescribe twice the amount & I break it in half. It's actually reasonably priced, too. I make lists so I remember what I need to do. There's hope in stem cell research but will it come in our lifetime?

To Lisa and Jeffery:

Be not dismayed! I have been forgetting things for the last twenty-five years. About a year and ahalf ago, while attending an HIV-related seminar in New Orleans, this ordeal hit me like a ton of brick: I couldn't remember how to get from class back to my hotel room. I was scared almost to death. I meandered around for awhile and finally made it back to my room. I told friends about it, and they said, it was me getting old, that it happened to them all the time. I am fifty-four years of age. I received that explanation, but I did not accept it.

I began searching for explanations. After all, my excellent memoray had been my pride and joy. It allowed me to breeze through high school and college while th eother kid had to do something like study and get stressed out. My primary care physician wasn't any help either.

About three years ago, I began taking B-12 vitamons to increase my energy levels. I was taking a pill off and on once or twice a week. While thumbing through a local newspaper, I read an article where the writers was complaining about a memory loss problems. The responding physicial told of a condition known as "Pernicious Anemia". He explained that a naturally occurring, memory-related enzyme piggybacked in the bloodstream from point A to point B, and that when B-12 levels were low, this process did not occur and in some instances account for memmory loss. I doubled up on the number of B-12 vitamins I took. I don't know if it worked totally!

I last taught college thirty-two years ago. I had placed an application about four years ago before the onset of this condition. About three weeks ago, the college finally called me and asked if I still wanted to teach. I was afraid because of the ordeal with the memory. I went to the interview. The coordinator called me two days later (Thursday0 and said my first class was Monday. YOU TALKING ABOUT BIG TIME STRESS AND ANXIETY. What could I do but embarrass the living daylights out of myself?

Well! My first class was on August 20, 2007. The only difference now from in my heyday is that I have to prepare lesson plans to guide me and refresh my memory like the other instructors, something I didn't have to do before. I also have put forth effort to remember some facts and dates. The kids think that I am the funniest and most knowledgeable professor that they have ever seen. Occasionally when I use a word or date incorrect, they ask me to repeat, and I double check to insure that the correct information is given.

I read the hype about dementia and all. In spite of it, I am still the captain of my ship and the master of my fate. Like you, I know my condition, yet, I have not permit its existence to enslave me. I can emphatically say that I am actually better off after the diagnosis tyhat I was before. For instance, before, I went to the doctor every ten or twelve years. Afterward, I went every three months from 2002 through July, 2007. Now I visit every six months.

Keep a positive outlook! Remember that the last four letters of AmerICAN spell I CAN and not I CAN'T! Okay. Together, all of us are going to beat this thing.

P.S. Another caveat of my situation is that I was in the Army (active and inactive) for 21 years. The Army tested me positive in 1999. I was never told the test results. In April 2002 I contracted PCP and nearly died. When I complained, the military lied and said it informed me. Then, they arranged my discharge, without telling me. And when I tried to get my medical records, they were destroyed. U. S. Chief Judge Loren Smith in D. C. Court of Federal Claims (COFC) said that the army had not violated my rights and dismissed my case.
In my time of adversity, God placed his mantle around me, threw me back on the battlefield and dared the enemy to prevail against me. They haven't yet. I took God on his WORD. If you do the same, he has a miracle waiting for you too. YOU BETTER NOT THROW IN THE TOWEL!

Lisa, I think I am going through something similar. For the last few years, I've felt that I'm losing my memory too. Then I started reading about dementia, but I don't want to give in to that diagnosis. How is one diagnosed with that? Does the doctor give you a memory test? I'm thinking about going to graduate school, but fear is getting in the way. I'm 44 and feel that the brain is not up to it now, but I feel like I must try. It's almost like a fight now because I feel we must fight this disease in every way, not just by taking meds. So if my brain is weak then I need to exercise it. I'll just take one class at a time. Thank you for the post Johnny. Be blessed, Lisa

Dear Lisa:Well it looks like you still have a sence of humour,& your writing great blogs,thereby helping others who are in the same boat.My thanks & best wishes to you & yours,may GODBLESS U & yours with Peace,Love & happiness!

Lisa,
I am 55, in menopause and live in post-Katrina New Orleans. While HIV-, my memory is shot. It's not as difficult as what you are dealing with, but I have a glimpse. NOT FUN! I have a friend who finally entered treatment some years back because he was having similar symptoms of dementia as well as too many KS lesions to treat topically. He started AZT,3TC and Crixivan for about ten years. The dementia cleared up fairly quickly for him, (the KS too). I'm glad you have AZT on board. Crixivan is an old girl, but she does penetrate the CSF well and is potent. If it's possible to add it to your regimen, it might be worth a try...even temporarily.
Hang in, Dora

Dear Lisa,

Your comment that you have lost you was the most telling in your courageous comments. As the parent of an HIV positive son, I have watched his temper fray much more frequently than it used to. I am the only one who knows of his condition in our family. I miss his wonderful self, too. In addition to feeling helpless as he travels this journey of being sick alone, I feel rage that our health care system is not what it should be for seriously ill people and that our government allowed HIV to spread through the Reagan years. Rather than just moan about all this, I have asked myself what each and every one of us can do to help spread the word, get more funding and pursue a cure. I think we should get the word out to everyone: Someone you know and love has HIV. Please don't give up hope. If we live long enough to become old, we will all lose our memory and the respect of younger generations ;)

Thank you for generously sharing your experiences with all of us, speaking from your heart and and helping others to understand a little of what you are going through.

Somebody's Mom

My name is david and sometimes my head seems like it's in a fog and have a hard time trying to make decisions on what to eat and how to prepare a meal. Has anyone had a similar experience?'

I can relate to Lisa's perdicament note my spelling with sad recognition I too am having episodes.With a nadir cd count of 9 I feel challenged on a daily basis forgetting who I have called,why I went into a room,peoples names and simple routines I am also going through the menopause it it is a sad premise that this disease which as wrecked havoc on so much my having a normal life will now force me a final indignation the lost of a fine mind!

Lisa I don't know what you're talking about "losing your sense of humor" that post was really funny.