Positive Life NSW

David writes about living with HIV dementia.

During the past 12 months I started experiencing unusual symptoms: constant ringing in my ears, giddiness from sudden drops in blood pressure, difficulties passing urine, and increasingly severe migraine-like headaches. Long periods of concentration began to leave me nauseated. I would feel confused and agitated if I spent any longer than an hour on the computer or drove long distances. I started to notice that I was bumping into doorways and losing my balance a lot more, and became intolerant of noisy environments like restaurants. Any loud noises made me feel tenser than I would have previously.

I found I had to make a conscious effort to meet up with friends. I would lose track of conversations, lose words and immediately forget the names of new people I met. I began to recognise this and made a concerted effort to remember, but it was becoming obvious that something was wrong. It just became too draining and I withdrew from social interactions. Perhaps the most disturbing of all were depression-like symptoms and the constant background of suicidal ideation.

I have been HIV positive for close to 25 years with only one six year stint on medication, which ended in 2000 when I felt I needed a break. I discussed this with my doctor, and we decided we would monitor my counts closely. Quarterly viral loads and CD4 counts remained stable and, to date, I have never had a CD4 count below 500.

A much needed holiday in Bali was not reinvigorating at all and my feelings of fatigue, which I had attributed to my stressful time, did not resolve themselves. I had no interest in sex at all. I tried exercise and going to bed early and sleeping for longer periods did not improve my energy levels. Tests revealed nothing and I was becoming suspicious even though my counts for HIV markers were well within acceptable limits. I requested a lumbar puncture and my GP also recommended a neuropsychological test.

About a month and a half ago I arrived home after attending another battery of tests. That night I made an entry in my diary “I am at the scariest point of my life”. It was the neuropsychological test that finally identified that I was in the early stages of dementia.

Based on this clinical neuropsychological test I started treatment for HIV Dementia. In retrospect it might seem obvious that it was all HIV related, but what threw everyone were the counts we use to monitor progression. I have an extensive knowledge of HIV disease myself; having worked to the level of a Clinical Nurse Consultant in the area, so there is definitely no finger pointing intended.

I get a lot of exercise looking for things. Every day is a treasure hunt. 

The most notable changes since the beginning of my treatment have been the resolution of the depressive like feelings and the disappearance of the suicidal ideation. The depression has responded to HIV therapy alone. There are lots of clinical questions and research needed to be done, but if any of the above symptoms are present then they should be discussed with your medical practitioner and investigated.

Living with the early stages of dementia

So what is it like living with the early stages of dementia? Definitely no drinking alcohol or other mind altering substances, I don’t need them. There are enough chemicals and cells malfunctioning in my brain as it is. Typing is always a challenge, I could touch type before with some speed and accuracy, but now it is hit and miss and the spell checker works overtime. I sent my partner an SMS a while ago and he rang me to find out what I was talking about. When I checked back on the message I had sent, he would have had no idea that I said I would pick him up at the gym on the way back home from the airport. Predictive text has its limitations. However I did remember to pick him up.

Everything I need to remember is in my phone and Outlook with alarms for tablets and so on. We use a white board at home, which has cut down the arguments about arrangements that have been made. It really screws you up when you think you have told someone something and they say you didn’t. The neuropsychologists suggested I keep notes. Problem is, sometimes I look at my notes and I have no f***ing idea what it was supposed to remind me about. At the moment, on the white board, I have a note “Michael 6.33.64”. The worst thing is I have no idea which Michael it is.

I get a lot of exercise looking for things. Every day is a treasure hunt. Sometimes I don’t find what I am looking for, but find what I was looking for yesterday or last week. Sometimes I will go to Bunnings for something specific and wander around, pick up a few things get home and have to go back to get what I went for in the first place.

The other day I bought a bun for lunch at Bakers Delight, paid for it and walked off without it and didn’t realise till I got home. The next day I went back and explained what I had done and said “I am on treatment for it.” She laughed as she gave me a bun, but she didn’t think I was serious.

I am right at home visiting my mother now who also has dementia secondary to Parkinson’s Disease. It gets really interesting when the other residents, who are either off the planet or deaf, are sitting with her. The fact that the conversation makes no sense to anyone is not a problem.

Recovery will not be immediate and may take 6 to 12 months. I’m fortunate that this is the type of dementia that responds effectively to treatment and that I will more than likely regain, according to my neurologist, most if not full function to which my dear friends will probably say is a worry.

For more information on HIV dementia talk with your doctor. Other helpful resources include:

• AIDS Dementia & HIV Psychiatry Service (ADAHPS), tel 02 8382 1810 or visit: www.health.nsw.gov.au/adahps/factsheets.asp
• The Body: http://www.thebody.com/treat/neuro_dementia.html