Recovering from AIDS Dementia
A Personal Story

In July 1984 I was told I was HIV positive. In September 1994 after ten years of virtual denial, I found that I had AIDS. The diagnosis was early AIDS Dementia. It was like going through the trauma of being told I was HIV positive all over again, but this time the end point was more certain. All the reports I read forecast that a person with an AIDS diagnosis would survive two years or three at the outside. I made a will and took stock of my life.

Short term memory had already become a problem more than a year previously. Not only did I have difficulty keeping track of small things like my keys, glasses and wallet but I had trouble remembering where I had left big, important things such as my car and briefcase containing large amount of cash.

Confusion made me lose track of time and date. I became anxious about the smallest things and had difficulty concentrating for an length of time. I found myself behaving out of character. People were noting my strange behavior that affected my speech and movement. I started to have bouts of incontinence. The climax came with a day of almost total amnesia. It could have been twenty four hours, or longer; the detailsof that period still remain unclear.

Having survived earlier life crises by exploiting the potential of each situation I determined to make the most of the short time I had left. Coming from a poor working class family I had to go to work instead of staying on at school so I never did any A levels and this was something I wanted to address. I also wanted to learn a language. Keeping my mind and body active seemed a sensible way of coping. I enrolled at my local college for as many courses as I could.

Fortunately, as my health deteriorated new drugs became available. My first encounter with protease inhibitors was a far from pleasant experience. But, with dose adjustment I was able to tolerate them and cope with the heavy pill burden and diet restrictions including the 4 hour fast before taking Videx (ddI) crushed up and mixed with water. I kept this up for over two years.

Highly Active Anti-Retroviral Therapy (HAART) comes with a range of side effects, some more unpleasant than others. I was given medication to counter the side effects of nausea, diarrhoea, peripheral neuropathy pain, insomnia to name a few. When I was offered more drugs to offset the side effects of this secondary medication I felt that once again I needed to step back, reflect and take stock.

My college studies included Information Technology and through the computer and the Internet I gained up to the minute information about HIV and treatment options as well as global contact with other people living with HIV/AIDS. Perhaps it was this new found knowledge and support that gave me the courage to back my concern about the unknown drug interactions and to go against the advice of my consultant to start taking anti-depressants.

There was no doubt in my mind that I was becoming depressed. I have never suffered from depression before; even when dementia was evident to others, I felt fine in myself. Something needed to be done but instead of accepting my consultant's advice, I opted to take the herbal remedy St John's Wort. From what I had discovered, St John's Wort (nature's Prozac) had fewer side effects and was the preferred treatment in Germany where doctors used it as a first line option for mild to medium depression.

Sometime later, laboratory tests showed that St John's Wort interacted with various classes of drugs including the strongest of the PIs that I was taking and was therefore not recommended. I believe, however, that this interference worked to my advantage - not only did my mood improve after taking St John's Wort but other side effects lessened. Most significantly, my T cells (CD4 count) rose to the highest level since they were recorded so that I felt able to reduce some of my prophylactic medication.

Perhaps the first landmark in my recovery from dementia was the day I tore up the extended power of attorney drawn up when I made my will. I felt I no longer needed to rely on someone else to make decisions on my behalf.

In 2001, I now have two A levels and a good grounding in Spanish. I have completed two Open University courses and enjoy a better state of health than for many years. Of course, none of this would have been possible without the development of new anti-HIV treatments. I was fortunate that I was around when the two drug combination first appeared and that later I was able to take advantage of the triple therapy of HAART.

Against the benefit of long term survival, weighs the downside of the long term toxic effect of the drugs. Along with many other HIV+ gay men, my physical appearance has been affected through lipid abnormalities as has my mental health through sleep problems, sexual dysfunction and depression.

Taking charge of my health has helped me address some of these difficulties. Acknowledging that you have a problem is perhaps the first step towards finding a solution. Tackling an issue one step at a time is useful strategy to move forwards.

Since 1994 I have made myself familiar with the latest treatment information and monitored my health closely. Naturally, I continue to take the drugs that are essential to keep the virus in abeyance but I stopped others when my blood results indicated that it was safe to do so. I have made use of complementary therapies such as acupuncture, reflexology, reiki, shiatsu and aromatherapy massage. I have benefited from the body -mind exercise of yoga. I have sought out peer support and been proactive in HIV/AIDS groups. The love and support of family and friends has seen me through difficult times and encouraged me to go on when the going was rough.

There many other things that have made life worth while like the joy of making music, traveling to new places, making new friends, taking holidays in the sun and enjoying the fellowship of church communities to which I belong.

At one time I was convinced that my short term memory was damaged beyond repair. I know now that the brain is a most remarkable thing and that it can adapt and create new ways to overcome al kinds of deficiencies. I believe that you have to use your brain to make this happen - much like you have to exercise a muscle to keep it in good shape.

I could go on at length about my achievements since being told I had AIDS Dementia. Modesty forbids, but they were sufficient to anticipate the satisfactory result that came from a cognitive psychology test and to greet the news from my HIV doctor that I no longer had dementia with a smile but not much of a surprise.