Robert Turner is the founder of LGBTQ+ Parkinson’s Rainbow, a local peer support group for LGBTQ+ people living with Parkinson’s disease, and their caregivers. He is also an Ambassador for the Davis Phinney Foundation for Parkinson’s.
JM: Thanks for meeting with me, Robert. Could you tell me a little about your background? Where did you grow up, and when did you move to New Orleans?
RT: My father was an army officer, so I grew up moving around. When I graduated high school, I had lived in 12 places and gone to 12 schools. But I’ve been in New Orleans for over 35 years. It’s where I choose to call home. I went to school for engineering, but never practiced as an engineer. I spent a lot of years as a computer programmer. I’ve also worked in management, and have owned a couple of small businesses over the years.
JM: You’ve also done a fair amount of volunteer work here in the city.
RT: Yes. I served on the NO/AIDS Task Force board of directors in the early 90s, after my first partner died. Before that, I did a good bit of safer sex education, speaking to various groups. More recently, I was involved with Crescent City Rougaroux, a local gay rugby team. I showed up for their first meeting, and fell in love with playing rugby. It’s just a great sport, and this group are very accepting and welcoming to everybody. Unfortunately, I had to quit playing about four years ago because of Parkinson’s disease.
JM: When did you first notice symptoms of what you now know to be Parkinson’s disease?
RT: Parkinson’s tends to start in one of two ways, either with “the shakes” that you typically see in somebody’s hand, or with stiffness and slowness in the muscles. My first symptoms were stiffness and slowness in my hips, where walking was uncomfortable and slow. I went to physical therapy, then to a chiropractor, then to a massage therapist, and nobody seemed to have an answer for what was going on. And then finally I was referred to a neurologist, who diagnosed the Parkinson’s. But looking back, I had physical and psychological changes dating back ten years. Parkinson’s is a neurological disease characterized by a lack of dopamine. Your brain quits making as much dopamine as normal, but typically you’re not diagnosed until you’ve already lost like 75% of your dopamine production. So anxiety and depression are two of the mental problems that can develop with Parkinson’s, and it’s caused by a lack of dopamine. But people get anxiety and depression for lots of reasons. You don’t necessarily think of Parkinson’s as being the cause at first. Those initial symptoms led to a lot of stress in my relationship with my second husband, which ultimately led to him deciding that he needed to end the relationship. I wonder, if we had known the actual cause, whether we might have been able to address it differently. But he and I are still very friendly with each other.
JM: When you first got the diagnosis, what kind of resources helped you?
RT: I had a therapist who had some knowledge of Parkinson’s, and she was able to help me some, but a lot of it was just searching the internet for information. I learned about the David Phinney Foundation for Parkinson’s, and eventually became an Ambassador for that organization. Typically, Ambassadors work within their local geographic area, and are a resource for people who are newly diagnosed or their caregivers, to give you that the real news on what’s happening and where to go for resources. Unfortunately, with neurologists, when they diagnose you, it’s often like, “Here’s what you have, and here’s a pill for it. See you in six months.” The Davis Phinney Foundation is one of the major Parkinson’s organizations in the US, and I’m part of their Ambassador program. But rather than working only within the New Orleans area, I’ve become the National Ambassador for LGBTQ+ People with Parkinson’s. So, if anyone who’s part of our community is dealing with this, they can reach out to me.
JM: Tell me about LGBTQ+ Parkinson’s Rainbow, the local LGBTQ+ Parkinson’s support group that you founded. How did that come about?
RT: Well, it was partly based on what I learned from early HIV support groups I was part of years ago. And more recently, I’ve met local gay people living with Parkinson’s and I figured, let’s start a group! It’s a peer support group. We’re not therapists, but we’ve all been there, and we have ideas, and Parkinson’s can be a very isolating illness. It’s – I don’t want to say embarrassing – but you’re often not comfortable having people know that you have Parkinson’s. You might walk funny. You’ve got these shakes. Dyskinesia is the term for involuntary body movements that can appear odd, and make you feel uncomfortable going out in public. This group gives you a way to be with other people who know exactly what you’re going through. And we’re focused on both people with Parkinson’s and their caregivers. At one of our earliest meetings, there were two caregivers present, and they were so excited to be able to talk to each other and say, “Oh, you’re going through this too.”
JM: What is the format of the group?
RT: We host two support group meetings each month, on the second and fourth Thursday, at 1:00PM at the New Orleans Pride Center. And we also have a social event once a month; a dinner out, or meeting for coffee somewhere, or a movie night, something we can do together outside the support group setting.
JM: What would you say to someone who’s just learning that they – or their loved ones – have Parkinson’s?
RT: Get physically active. Physical activity is so important for delaying progression of Parkinson’s. It’s not always easy due to the dopamine changes in the in the brain. You may feel a lack of motivation, apathy, or depression. It’s hard to get out there and be physically active when you’re feeling broken. But physical activity is very good for Parkinson’s. Yoga, Tai Chi, lifting weights, swimming, riding a bicycle, walking – whatever works for you. All these things are good for delaying the progression of Parkinson’s. But the real first thing I would tell people is this: It’s not the end of the world. It’s a new thing that we’re having to deal with. It’s a change in our lives. But you can live a long time with Parkinson’s. Doctors frequently say, “You don’t die from Parkinson’s; you die with Parkinson’s. We can get through this. But being physically active really helps, so I emphasize that as much as I can.
JM: Is there anything I haven’t asked you about that you’d like for people to know about Parkinson’s?
RT: It’s a growing problem in the US, partly due to environmental factors. There are certain pesticides and herbicides, neurotoxins that have been shown to increase the likelihood of people getting Parkinson’s. And there may be a genetic component for some people who get it. But I really want to emphasize that this is something we can get through together. And there’s a lot of information available to you. I’m happy to help people with that. I recently read a quote from Steve Gleason’s [former Saints football player] memoir. He said that he can’t control the fact that he has ALS, but he CAN control his response to it. So, I’d adapt that to say, “I cannot control that I have Parkinson’s, but I can control my response to it.” It’s important to be self-empowered, to be proactive, and not just let it “happen” to you. I’ve been HIV positive now for 40 years. I’ve learned how to be proactive in dealing with that, and I can do the same with Parkinson’s.
JM: Thank you so much, Robert, for the incredible work that you are doing for people in our community who are dealing with this.
For more information about the LGBTQ+ Parkinson’s Rainbow support group, contact Robert Turner at ParkinsonsRainbow@gmail.com, or call/text (504) 669-1880.
