My journey through HAND

I’m 67 years old and HIV positive since 2003. At that time I was living in London and had started to have very bad psoriasis. As a gay man, I had friends who had died from HIV/AIDS in the 1980s prior to any medications, so I didn’t want to think about anything like this until I had to. It just seemed too grim.

Eventually, after I was diagnosed with psoriatic arthritis, the specialist asked me, ‘Have you had a HIV test?’ I said no, and he said, ‘Well, you know, high viral loads can cause a psoriatic reaction.’ When I got the result, it didn’t surprise me. I mean, it wasn’t a devastating diagnosis. It was just, you know, ‘Oh shit, here we go’. I’ve got to adapt to these new circumstances and medication and so on.

At that time, I had a CD4 count of four, and a viral load of 144,000. My doctor was surprised. For the immune system to be so degraded and with such a high volume of the virus, that should have basically been AIDS. So I went on meds, the whole HIV meds trip. I’ve had all the ups and downs and the different medications. Going on the initial combination, working for a bit and then not working. Anyway, over the years I’ve been quite stable. The meds were working fine, my viral load was undetectable. My CD4 count improved.

In 2017 I noticed that I was starting to tremble slightly. I just thought I must be getting old. But over the next few months it got worse and worse, to a stage where I couldn’t actually eat with a knife and fork.

I was so trembly and jerky. It was difficult on one occasion when I joined my work crew for lunch. I had to be very careful, because I might unintentionally fling a piece of food across the room, this is now a source of grim humour with one of my friends, so I knew something wasn’t quite right.

I was attending the Western Sydney Sexual Health Clinic at the time, and my s100 specialist GP who I’ve been with the whole time was a rock. She referred me to get a brain scan. Just after it was done, I moved house. So my results were sent to my old address and I never got them. I was getting worse and worse and eventually my GP said ‘We’ve got to do the brain scan again’, so I did.

By now, the trembling and unsteadiness was on an accelerating downward curve. By the time the scans came back, I was having real trouble walking which had turned into a slow shuffle. There was a long delay until I could get onto Professor Brew’s schedule and I was getting really very bad. By then I was moving with great difficulty, and couldn’t walk down stairs without hanging on to the handrail taking each step really carefully. At the time, I was living about half a mile from the health clinic, and I’d have to get a taxi there. It was impossible to walk to the clinic as I had done before.

I got to the point where I needed to get everything delivered to the door. Shopping was something that I did try to push through, probably not a good idea. At one time, I was in a supermarket at North Parramatta. I was carrying my shopping bags and fell over on the stairs, flat on my face. A couple of concerned guys came over and helped me up. They asked, ‘Shall we call you an ambulance?’ And I was thinking, ‘I know what this is about,’ and said, ‘No, no ambulance, can you call me a taxi?’ They said, ‘No, no, no, we’ll take you home.’ They drove me home and carried my groceries to my apartment door. The memory of their kindness and care still overwhelms me, even today.

My balance was badly affected. I was at the stage where I couldn’t stand up in the shower. I would have to kneel. And then I wouldn’t shower every day because it was dangerous to do even that. One morning I was making the bed, a simple job, but fell flat on my back. I was in pain for about a week.

In terms of my mental state, I just felt utterly weary. Physically I was completely lethargic and turned myself right down in terms of things I would be doing mentally, but still conscious of wanting to maintain my mental life. I spent a lot of time reading and watching TV, doing Sudoku. Things like cooking, the washing, showering or bathing, or even opening a can of food was impossible. I basically lived on sandwiches. At the bottom of that descent, I felt hermetically sealed in on my own; I did it alone. I’d lost 13kg.

In hindsight, this was something I didn’t need to do. There’s a sort of stoicism about our family. My father was born in the late 19th century and actually fought on Gallipoli. He had Scottish Presbyterian roots and a stern sort of stoicism that our family has inherited. My parents married in late middle age and my mother tended to hold herself in. So you know, that’s just how I did things, kind of the way I am. My GP offered things like home help, but I just didn’t want anybody in the house in the condition I was in. So that’s where I got to. That was the real rock bottom.

I finally got to meet with Professor Brew. He arranged for me to have a lumber tap. The result identified a strain of HIV in my spinal column and the medications I was on at the time weren’t effective against it. He put me on a new medication, and said, ‘It’ll probably take six months to a year to notice any changes.’ It took me about three months before I regained my mobility.

I think I’m lucky, in so far as I don’t think my mental acuity was damaged. I improved very quickly over three months to where I am now physically and mentally. It was only just a change of meds; that was it really.

The whole experience made a very deep-rooted and fundamental change of orientation in my life. It’s like when you have an angle that starts off very small and moves further and further apart. As time went on, I got further and further away from the person that I used to be. It’s brought a kind of emotional openness that I didn’t have before. To be ground down like that and coming out the other side.

When I say ‘down’, I don’t mean feeling depressed, I wasn’t depressed about it. I mean, I was a bit worried at times about what kind of a life I would lead if this was going to be the way I was going to live. I wondered if I might have something terminal. Being ground down was my metaphor, grinding and grinding, Down, Down, Down.

When members of my family, like my nephew and his partner, found out, they said ‘Why the hell didn’t you tell us? We’d come and do things for you!’ That was one of the things that I look back on and wish I’d done. This experience has deepened my relationship with them. Since then I have become very, very close to them as well their two kids, so it changed me emotionally.

Prior to all this, I would normally go for a walk in Parramatta Park early in the morning, and I mean very early, like 4am. After maybe a couple of months, I went out for my first walk, not the whole distance, but I did it. There was a feeling of, you can do this now.  This sounds corny, but it was like the air had a kind of magic about it. I became far more conscious of being alive, of living in this world. I used to be more of a worrier. Worry, worry, worry, and go to sleep at night worrying.

Looking back, the experience brought about a very fundamental change within me, and this might be something that others with HAND would want to hear. I found a new me. I’ve found that I really like what it’s done to me. It’s been quite powerful and, paradoxically, has had a very positive impact on my life. I’m fortunate, I’m not sure that everybody would be able to say that.

During the worst of it, I felt so helpless. I was living a day-to-day existence, moment by moment, because that’s how I had to do it. Life felt so constraining. So physically limiting and pressing and hard. Whether it’s physical or mental or memory, the effects can be devastating.  But my experience of HAND has helped me transition into a new way of thinking about myself, and a new way of living. I think the thing for me is, if I lived through that, I can get through anything. I think that’s one of the lessons I would take away from it.

Yeah, even going through the darkness, which I probably wouldn’t have had to if my diagnosis had been sooner, or if that first scan hadn’t gone astray, and I might have gotten there sooner, I think there’s a lesson in that about early treatment.

And also, to have loved ones with you on that journey. I didn’t do that, and I could have. With hindsight, I recognise now how much those loved ones actually would have wanted to be involved. It’s not necessary to go it alone. If I were talking to another person with HAND, I’d probably be asking what treatment are you getting? How are you coping with that? Are you talking to your physician about what’s happening? Have you got a loving circle around you?

If not, how could we build something like that? I think it’s important to have people around you who can keep you afloat, help keep your head above water. I think I went underwater for a period there, and if I’d brought my family close to me, I probably wouldn’t have gone that deep. If I’d had a holding circle who knew what’s going on for me, that would have been very empowering and supportive.

I think there’s enough residual shame around living with HIV, particularly for people in my age group. For people who are dealing with HAND, I think it’s important that they’re not alone. And they should know, not to be alone. I think there’s a temptation to kind of do that, because it’s embarrassing if you can’t hold a cup of coffee. It’s embarrassing if you lose track of where you are in a conversation, and you don’t want to be embarrassed.

I’d probably say, look, I went through this, and got it bad, but I came out the other side. It was a life-changing experience. I wouldn’t say that’s going to happen to you. But I’m saying, you can come out of it.

It’s taken me to a frame of mind that’s more settled, more peaceful, more loving, more forgiving. Just prior to this experience with HAND, my partner and I split up very acrimoniously. I really resented him and when I’d get email from him, I’d just go delete, delete, delete. And bless him, he kept reaching out. After recovering I responded, and he was surprised. But that was just part of that change, you know. What’s the point carrying all that crap around?

After about six months, I started work again. I’m a project manager working in social services, like housing and for local government. I got a contract with an intra-state organisation, and that three-month contract turned into a year because they were happy with the way I worked. So I’m saying, it’s not the end of you. It’s not the end of your life.

– Robert

Published in Talkabout #199 October 2021

Also see: The good news about HAND  /  Let’s talk about HAND

HIV Associated Neurocognitive Disorder (HAND) Booklet – Joint Adahps, NSW Health and PLNSW booklet

HIV Associated Neurocognitive Disorder (HAND) Booklet for partners, friends and family – Joint Adahps, NSW Health and PLNSW booklet