On Thursday, Aug. 11th Mike Hellman was a guest on the internet TV show Positive OUTlook, hosted by Nayck Feliz, talking about Aging with HIV and the discussion group he has been facilitating at the Shepherd Wellness Community over the past few weeks.
If you missed it, you can see the show at: http://www.outonline.com/
You can also search for Positive OUTlook or Aging with HIV
The National Resource Center on LGBT aging has updated its HIV and Aging pages. Click here for a link to my article and browse the site for other articles and resources throughout the country.
Tomorrow is National HIV/AIDS and Aging Awareness Day. The AIDS Institute is hosting a Webinar on line conference to discuss the issue. You can join by registering at: https://www2.gotomeeting.com/register/946895474.
Earlier this week Jane Brody published an article in the New York Times on the difficulty distinguishing mild cognitive impairment from the effects of normal aging. She explains, “While most people experience a gradual cognitive decline as they get older (only about one in 100 lives long without cognitive loss), others experience more extreme changes in cognitive function, the neurologist wrote in The New England Journal of Medicine in June. In population-based studies, mild cognitive impairment has been found in 10 percent to 20 percent of people older than 65, he noted.”
For people living with HIV over the age of fifty, cognitive impairment is a serious concern, and many wonder if occasional memory lapses and subtle forgetfulness are signs of normal aging or the first stages of serious cognitive impairment or dementia.
The article explains how diagnoses are made and strategies one can use to preserve cognitive functioning, including: medical management (when appropriate); lifestyle changes (such as reducing cardiovascular risk and blood sugar); practicing cognitive improvement exercises; and physical exercise.
To read the full article go to the New York Times.
I just got back from a wonderful trip to visit friends and family in Paris. It had been a long time since the last time I was there. 25 years. (It is hard to even conceive of that amount of time passing.)
While I was there I tried to live in the present: Take in the architecture; soak up the culture; sit in the cafes and experience the life of this timeless city. Underneath the surface, and without my conscious awareness, my mind was in the past. I was fantasizing about a life trajectory if I had never left Europe 25 years ago. And, those thoughts merged so seamlessly with my experience in the present that I didn’t even know that they were affecting my experience in the moment.
When I got back to New York, I went to see the film, “Midnight in Paris.” The spectacular cinematography transported me back to vacation. IMDB describes the film as follows: “A romantic comedy about a family traveling to the French capital for business. The party includes a young engaged couple forced to confront the illusion that a life different from their own is better.”
I identified with the main character who struggles with a tendency to live in an idealized past.
The film reminded me that living in the past is a theme that emerged from my research on aging with HIV. Throughout my interviews, the men talked about the past. In “Aging with HIV” I introduced you to “Paul” (not his real name.):
Entering Paul’s apartment is like going through a time warp. The walls are filled with photos of Paul and his friends in their twenties and thirties. All of his artwork and decorations are from the 1970s and 1980s. Even Paul’s moustache, his clothes, and the way he styles his hair are reminiscent of the clone look of the 1970s. During an interview with Paul I drew a line with one end in the past and one in the future and asked him to point to where he was. He said, “Right there. Oh, yeah, I’m in the past.”
After interviewing Paul, I saw more subtle examples throughout these men’s lives of the conflict between living in the past vs learning from the past. Living with HIV can reshape one’s sense of time. Life can feel as if it stopped with diagnosis, or the death of friends. And memories of a fun-filled past can be comforting when illness and age make life seem dull.
There is a lot to learn from the past. The act of reminiscing can help us live more fully in the present. When we reflect on our past we remember people and places that were important in our histories, and we remind ourselves of aspects of our identity that have been lost over time. Even painful emotions like loss and regret can be an important learning tools as we live in the present and look toward the future.
The challenge is to be able to learn from the past (reminisce and have our feelings) without living in the past (getting mired in regret or fantasy) in a way that prevents us from living our lives fully in the present.
The drift into the past can be quite subtle and sometimes we need a gently push to return to the present. One question we can ask ourselves is: How can these memories, thoughts and fantasies of the past help me with the issues I face today?
I was asked to write an introduction to HIV and Aging for the National LGBT Aging Resource Center. I’m posting what I wrote here. I expect that I may be able to additional contributions, so if you have any comments or ideas for future articles please add them here. Thanks.
Aging with HIV: An Introduction
There was a time when the words “aging” and “HIV” would not be used in the same sentence. Now, with improvements in the treatment of HIV-disease, people are living into midlife and older age in increasing numbers. But, what does it mean to “age with HIV?” And, how can people, who never thought they would live this long, adapt to the challenges that accompany aging?
HIV positive people are charting new territory, and specialists in the field are just beginning to understand the medical, psychological, and social implications of aging with HIV. If you are living with HIV, or know someone who is, here are some points to consider:
You Are Not Alone
It is expected that people over age 50 will represent a majority of those infected by the year 2015. Despite the large numbers of people in this age group, people living with HIV in midlife and beyond often feel invisible within both AIDS care agencies and organizations serving older people. Aging can feel like yet another stigma. Knowing that you are not alone and that your concerns matter can empower you advocate for the care you need.
You Have Unique Concerns
In many respects the challenges people aging with HIV face are no different than those of HIV negative people. We all have to adapt to changes in our bodies as we age (eyesight, mobility, health, etc.); We have new financial considerations as we grow older, including work related changes and planning for our futures; We develop new roles in our families; We live through losses among our friends and changes to our social networks; And, our attitudes, needs, and desires change within our sex lives and intimate relationships.
But, HIV has a way of reshaping all these areas of life.
Lets take, for example, the issue of symptom ambiguity. Many people aging with HIV report that it can be difficult to identify whether their symptoms are age-related or HIV-related. The men I interviewed asked, “Is this ache just normal aging, a complication from medication, or a sign of HIV-disease progression?” Unable to answer these questions, many had difficulty formulating a response. Do they just accept it? Make lifestyle changes? Or is medical intervention necessary?
Doctors don’t always know the answer. There is increasing research in this area, and scientists are looking at changes in bone density, cognitive impairment, and cardiac functioning that may be more prevalent among older people with the virus. More research is coming down the pipeline, but you need to stay informed to keep up with the latest developments.
Much like the early days of the epidemic, people living with HIV are at the forefront of a new era. The information your body is giving you is an important part of the equation, and you have to learn as much as you can and partner with your doctor to determine the best course of action for you.
You Deserve Support
The research tells us that having a supportive social network is one of the greatest predictors of well-being in older age, and studies on HIV over fifty confirm this finding. We adapt better to physical changes, loss, and retirement when we have satisfying emotional and practical supports. In addition, we remain more physically active, emotionally stable, and cognitively stimulated when we remain socially active and involved.
For many gay men aging with HIV, this means rebuilding social networks that have been decimated by AIDS. This is not an easy task, practically or emotionally. Optimal aging with HIV involves assessing the goodness-of-fit of you current support systems, maintaining existing social networks, and finding new support to meet your changing needs.
Many of the men I spoke with have used social service agencies as resources to help them rebuild their social support networks. SAGE has programs for midlife and older, gay and bisexual men living with HIV in New York City. My blog has a page with HIV and Aging resources throughout the country. The National Resource Center on LGBT Aging can also point you to services in your area.
Aging Means Changing
Aging is a gradual process, but it can sneak up on us when we’re not paying attention. Gay men living with HIV have good reason to be caught by surprise – they have spent the past two decades in a battle with the AIDS epidemic. Getting back on track with life means adapting to the physical, social, and psychological changes that accompany aging.
Let’s start conversations across the country that normalize the experience of aging and empower the community to define for themselves what it means to optimally age with HIV.
Mark S. King attended the 2011 ADAP Advocacy Association conference July 5-7 in Washington, DC and reviews the event on his blog.
In his Op Ed for the New York Times, “The Death Sentence That Defined My Life,” Mark Trautwein shows us how not dying of AIDS “on schedule” has helped him learn “not to live life on one either.” His story offers insight into the financial, social, and medical challenges of living longer than expected.
My letter to the Editor, published yesterday by the Times discusses the delicate, and sometimes paradoxical, balance between finding your own schedule and getting back on track with life that accompanies aging with HIV.
You can follow the links to read both.
Linda Dahlstrom article for MSNBC tells one man’s story of aging with HIV. It is a touching and personal chronicle of the path so many gay men have had to travel from the trauma of diagnosis, living through innumerable losses, to facing the unanticipated social, emotional, and physical challenges of growing older.
For the full article go to: msnbc.com
On Memorial Day, the New York Times published an article by Dr. Lawrence Altman remembering the early AIDS epidemic of 30 years ago. His article poignantly reminds us of those desperate days when there was little scientific knowledge, and a great deal of misinformation, fear, and stigma. He memorializes those who died in the early years, for whom “the wait for effective treatments — a decade or so after the first reports of the disease — was far too long.” His report acknowledges how far we have come, yet does not deny the continued gaps in our knowledge and lack of progress made in developing an AIDS vaccine.
For me the timing of the publication of this article resonates strongly. The AIDS epidemic of the 80’s and early 90’s was a war that needs to be memorialized. A generation was lost to the disease and those that remain are scarred emotionally by the battle.
While it raises painful memories, Altman’s article offers us an opportunity to remind ourselves of what we have lived through, and to remember the friends that we have lost. I believe that the ability to reminisce is an integral part of healthy aging. This kind of life review allows us to learn from the past, not live in it, to draw on past experiences for life lessons and guidance to help us cope with challenges in the present. I am grateful to Dr. Altman for his work in the field of AIDS and for sharing his experience.