Episode 154: Sexuality from the Care Partner Perspective

Dan Keller 0:02 Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow. Parkinson's disease presents many challenges, both for the people with PD and for their care partners. Problems can be physical or emotional, and intimacy and sexuality have aspects of both. In this episode, we focus on problems that care partners experience concerning sexuality, and for which they call the Parkinson's Foundation helpline. Social worker Anna Moreno, a senior information specialist at the foundation, highlights some of the more common questions that she receives, and her job entails helping callers find the right resources. Gila Bronner, a certified sex therapist and supervisor of the sex therapy services at the Tel Aviv Sourasky Medical Center in Israel, responds to these questions with insight into the problems and some approaches to solving them.

Dan Keller 1:39 Anna, you are a Parkinson's Foundation helpline specialist. What kind of questions do you get concerning sexuality, keeping in mind that you yourself are not a therapist?

Anna Moreno 1:54 We get a lot of questions, so one thing we do is view people and help them find therapists through the American Association of Sexuality Educators, Counselors, and Therapists. Some of the questions we get are, as a care partner, "How do I explain to my husband that I'm just too tired to have sex because I'm always caregiving?" And people always ask, too, "I'm an older woman, so I just don't really have a libido anymore."

Gila Bronner 2:27 Usually, the idea of lower sexual desire, or what I call a sexual desire discrepancy, or gap—one of the reasons is the burden. I mean, the partner who lives with Parkinson's, who doesn't have Parkinson's, but lives with it, is very tired, and the woman who is asking it probably is doing a lot of chores, and she's really exhausted. So, one of the reasons for the gap in the desire is because of being tired, but the other reason is that the dopaminergic treatment for Parkinson's restores desire for the patient and does not restore any desire by the partner, so we have a gap now. Sometimes I think instead of saying "I don't want sex, I don't have desire," maybe we have to teach care partners to say, "What do you need?" For example, "At the end of the day I need a foot massage or a shoulder massage, can you massage my shoulder?" and teach the partners that not every touch should lead into sexual erotic activity. And if they do that a few days along the week, just touching, then I'm probably quite sure that the woman in this question will have a desire to be more close to her partner, to her husband.

Dan Keller 4:08 And is there an aspect here of just being older and having diminished sex drive?

Gila Bronner 4:15 Yeah, people lose the sexual desire to have erotic activity, but one of the reasons that they lose it is because they stop touching just for the touch. Because most of us, as a person, at any age, we need to be hugged, and we need to be touched, and we need to feel excited, and to feel loved, and not only to have the desire to have intercourse or get aroused, get orgasmic. The moment we lose the intimate touching part, it reduces also by many times the desire to have sex, because when you look at studies and you inquire older people—I mean people that are in their 60s, 70s, 80s, and even 90s—you ask them, they say, "Yes, we adapt our intimate activity to what we like and what we can, and we don't always need to have the erotic sexual activity."

Dan Keller 5:23 Anna, what else do you hear from people calling into the helpline?

Anna Moreno 5:28 One interesting question that we get a lot is that people say, "My husband..." and on the helpline we've only had opposite-sex questions. We haven't heard from same-sex people, but one of the questions is, "My husband experiences delayed orgasm because of medication, but I cannot just keep going. It gets uncomfortable for me. What do I do?"

Gila Bronner 5:54 In Parkinson's, some of the medications, especially those which are for treating anxiety or depression, may disturb the ability to reach orgasm, but not only the medication. We have to remember that Parkinson's is a motor symptom disease. It means that sometimes people choose positions where they cannot hold and where they do not feel steady enough, and they can't do constant movements with concentration that are needed for orgasm. And some people are choosing the timing of sexual activity when they are too tired, not concentrated. Sometimes it's too late during the night. So what usually we do is, when I have a couple like this, I will usually ask the woman, "How long is it okay for you to have a visit in your vagina, I mean of your husband's penis?" and many women would say, "Look, two minutes, three minutes, four minutes." Okay, let's think of, you know, once we had a special clock, we called it a sand clock for boiling eggs. So I'm saying, yeah, yeah, we should think about something like this, and when it is fine with you, okay with you, you can't have it anymore, ask him to go out, whether he reached orgasm or not. Because the deterioration of your interest in sex, because he's staying there too long, it's much worse than stopping the sexual activity. Now we should think, why does it become—if it is a medication, we can ask maybe the psychiatrist to prescribe them, or another physician, and we can ask if we can change it, or maybe we can lower the dose, or maybe we can do something like once a week, or once in two weeks. We call it a "weekend vacation." Weekend vacation means that we stop them, for example, the antidepressant for 48 hours, and if we get an okay on the medical side, then sometimes during this break, at the end of this break, if the man will have sexual activity, he can come. But on the other hand, we have older people, meaning from the age 60 and on, who all have problems in coming and reaching orgasm, even if they have no Parkinson's and no medication. This is one of the changes which happen when we grow older, so it means that you can visit the vagina as long as it's okay for both of you, then go out and think of another way of getting aroused or getting excited more effectively, for example, manual stimulation, and get an orgasm in a different way. And this is what usually older people do when they have problems with their orgasm. So it means that we need a little more education for the people and giving them options and seeing what is the best solution in each case.

Dan Keller 9:21 Anna, what's another question that you've been getting commonly on the helpline?

Anna Moreno 9:27 Sure, a lot of men have called us feeling very upset about—they want to know why their wife doesn't want to have sex with them as often as before, and there are many reasons, I'm sure.

Gila Bronner 9:43 When we think of this question, there are many options. One of the options is that, unfortunately, in the whole world, not only in the world of Parkinson's, and not only in this age, but in the whole world, many couples are having sex which is more satisfying for men without listening to the needs of women. So sometimes what we do is we need to teach them, and it comes a moment when the woman says "enough is enough." Many years, it's like if we are thinking of eating something for many years: "I was eating your sandwich, I don't like the sandwich, I need the sandwich to be differently made, and now I don't want any more of this sandwich." Okay, so sometimes this is the reason. Many times in Parkinson's, it's really the burden and the need to serve all the time, so you don't want to serve sexually, and the best thing is when I can teach these men really to pleasure the woman without touching the erotic area. And the nice thing in the female body is that women can enjoy very much, have really a lot of pleasure, and feel loved, and feel also love to the partner when they are touched in other areas of the body, for example, pleasuring the back or the neck or the head—it depends, you know, everyone is a little different—just hugging them, just lying close together with clothes, without clothes, but without trying to reach to the erotic part. But men basically, many men were educated that if you touch your woman and you touch her, you have to do something, you have a job, and if you don't do your job, you are not a man. So, we have this problem. Then we have a lot of specific problems in Parkinson's, because men change—the men with Parkinson's change sometimes cognitively, this man changed his behavior, changed, sometimes communication changed, because, you know, problems speaking. Sometimes the appearance changed, the way the partner walks or the way the skin looks, so sometimes it's really issues of attractiveness. So there are many reasons why women do not want to have sex. I can share with you that in a workshop that I have done with men with Parkinson's, we had a group of 40 men with Parkinson's, and they were talking quite openly, quite freely, and many of them said, "I feel that my woman is disgusted by me," or "I feel that she's really reluctant to be close to me." And yeah, it's very sad, and we can think together what we can do. It's not easy. We have to ask the men and women, how can you leave the sex away, the erotic sex, and try to be friends first, try to listen to each other's needs, and then we can rehabilitate the erotic part of their life.

Dan Keller 12:51 Anna, why don't you give me one more of the questions that you get commonly asked?

Anna Moreno 12:57 Sure, so one of them is, "My husband has a sex addiction. How do we manage that? But also, how do I manage my anger about that?"

Gila Bronner 13:07 If you talk about sexual addiction in Parkinson's, this is a real problem. It's a big one, and it is part of the impulse control disorders. We know that because of the dopaminergic treatment, some of the men—it depends on the study, about something between 10 to 15% of the people with Parkinson's, mainly men—will have some kind of addiction. It can be gambling, it can be shopping, it could be eating, it can be walking about, wandering, but it can be also sexual. But not every sexual behavior which looks like sexual addiction is really sex addiction. I want to give you an example from my patients. For example, I had a patient, he was 50 years old, young, he had Parkinson's, and every day he tried to have sex with his wife, but he had problems with his erection, so he did not succeed. So he tried on Sunday and he didn't succeed. He tried on Monday, he didn't succeed. He tried on Tuesday, he didn't succeed, and like that he was trying all the time. He went to the doctor, he asked for some kind of medication, he got one of the erection pills, but the doctor did not explain to him that in Parkinson's, because of absorption problems and slowness of the gastrointestinal system, it takes sometimes double time for the absorption of the pill and not one hour, as they tell every patient. So my patients with Parkinson's had to wait between two to three hours until the pill was in the blood in order to be effective. So they try the pill, and they also do not succeed, so they try another pill and another pill, and after a month the woman will come to the doctor and say, "My husband has a sex addiction." And I can tell you truly, he doesn't have a sex addiction; he has a sexual problem or sexual dysfunction which is not correctly treated. Okay, but we do have a problem of impulse control disorders, which we call hypersexuality or compulsive sexual behavior, meaning that there is a behavior that did not exist before, and it is really bad. Actually, we have to take and recruit all the multidisciplinary team which we can. In my department, this is what I do. I talk to the nurse, I talk to the social worker, to the physiotherapist, to the occupational therapist, speech therapist, to the neurologist, to the psychiatrist, to everyone. Sometimes we even think together what we can do, because in these cases we have to adjust medication. Sometimes the neurologist will choose to use one of the advanced treatment devices, like the DBS, the brain stimulation surgery, or sometimes the intestinal gel, and we have to educate. This is what I usually do, me or the social worker or the psychologist, we educate the couple because a man who has a sex addiction is at risk, his sexual health is at risk—he is at risk of getting sexually transmitted diseases, of getting AIDS, of being abused or abusing others. So we have to really treat a real sex addiction from all the aspects that we can, but we have to differentiate it from a real sexual dysfunction that has to be treated in the usual intervention for sexual problems, which is really different. Educating patients about that releases their stress, and the anxiety is reduced, and sometimes reducing the anxiety is alleviating the problem and making it quieter. We did not solve it, but the feeling, the psychological atmosphere, is a little different.

Dan Keller 17:21 Gila, let me get back to something Anna said earlier, that most of the calls she gets on the helpline, or all of them, are from heterosexual couples. Do you ever see same-sex couples with Parkinson's disease, either male-male or female-female, who come in with problems relating to sex? And are the answers essentially similar to what you've proposed for heterosexual couples?

Gila Bronner 17:51 Unfortunately, very few LGBTQ persons with Parkinson's come for sexual counseling; they feel it's a minority in a minority in a minority. But interestingly, in the last year, I was one of the teaching personnel in a special project which was done in Boston with people from the gay, lesbian, queer, and transgender community with Parkinson's, and I had a workshop with this group. And then actually at the World Parkinson Congress, which will be in Barcelona 2023, I am presenting a pilot which we plan to do on interviewing people with Parkinson's who are part of this community. Now, if you ask, most of the sexual advice will be very similar to the heterosexual community with Parkinson's, but there are a few specific points which are very specific to men who are homosexual, to women who are lesbian, and we have to refer to them. I'll just give you an example. For example, in the community of homosexual men—I mean the normal community, not something special—the attraction, the physical attraction, is very important. Any changes in Parkinson's, erections are very important. You are counted by your erection, though this is really a problem, because the frequency of erectile dysfunction among people with Parkinson's reaches much higher than 50%—sometimes 60, 70, 80% in many studies all over the world. So it's a problem. Then we have problems with the gastric system sometimes, for example, constipation. Some of the people who are homosexuals—some of them, not all of them, but some of them—have anal sex, and they might have specific problems because of the contraction of the muscles in the pelvic floor area. So there are specific issues, but generally most of them suffer from everything. And in heterosexual couples, in many cases, women will not leave the husband because he has Parkinson's—I mean, they adapt or separate—but homosexuals are usually not married, and many lesbians are not married, and also other people from the LGBTQ community, so it's very easy to break relationships, so sometimes they suffer much more from loneliness, and we have to find other solutions for them.

Dan Keller 20:50 Just to wrap up, overall, when should a couple seek out a psychologist, a marriage counselor, or sex therapist? Are there any triggering events, or is it just a long ongoing process by which they would finally come to a professional?

Gila Bronner 21:09 I would love that every couple, or every person who is diagnosed with Parkinson's at a very early age, will come for just one talk to a sex therapist, just to learn: "How do I arrange and get ready for the changes that are coming?" It's like many neurologists today, when they diagnose a person, they say, "Look, at the moment, the only intervention I would like to give you is start to do more sports, invest in more physical activity." Because what I need is that people will learn how to communicate better. Many people do not communicate freely when it has to do with intimate issues, so I need better communication, because later the problems with communication will be piled by so many other problems that it is really difficult. And then thinking about roles, how to change the roles—this can be done also by a couple therapist or by a psychologist. So some of the things can be done by psychologists and couple therapists; there are specific issues that sex therapy still deals with because other professions do not talk very openly and freely about sexual and erotic issues. So I think that people should use it, and it's not a long treatment, just really a counseling session, that's all.

Dan Keller 22:41 Anna, is there information on the Parkinson's Foundation website about how to find a sex therapist?

Anna Moreno 22:50 Unfortunately, no. But if they call the helpline at 1-800-473-4636, we can help them find someone.

Dan Keller 23:02 Very good, excellent information. I thank both of you. And this has been a discussion that I think people might shy away from, but it's very necessary. So, thank you very much, Anna.

Gila Bronner 23:15 Thank you, Anna, for the questions. Thank you, Gila and Dan.

Dan Keller 23:28 You can find several helpful blog posts on our website at parkinson.org. Just search for the word "intimacy." For ones specifically by Gila, search for her last name, Bronner, on parkinson.org, that's B-R-O-N-N-E-R. You can also listen to a previous podcast with Gila called Navigating Sexuality and Intimacy with PD. For a fact sheet on intimacy and PD, go to our library at parkinson.org/library and search for the word "intimacy," where you will also see a link to Gila's earlier podcast. Gila says that in the United States there are great professional organizations that can offer help in finding qualified sex therapists. One, as Anna mentioned at the beginning of our discussion, is the American Association of Sexuality Educators, Counselors, and Therapists, or AASECT for short. It lists sex therapists and sex educators by US state, as well as in other countries. Just go to aasect.org. SIECUS, originally the Sex Information and Education Council of the United States, deals more with sex education and social change. It can be found at siecus.org. News and updates about future events and resources are available by joining our email list at the bottom of our website's homepage. If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts, or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Till next time, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening.

Gila Bronner, MPH, MSW is a senior sex therapist at Tel-Aviv Sourasky Medical Center in Israel and is an expert in sexual-neuro-rehabilitation (Parkinson’s disease, Multiple Sclerosis, Stroke, Dementia). She has published over 30 scientific papers, 13 chapters in neurological books, and sex-education books for children, adolescents and elders. Her life goal was dedicated to sexual health promotion, by training health care professionals in Israel and all over the world (Europe, USA, Canada, Asia and Australia). She is a member of the MDS Task Force on Wellness and of the MDS Health Professional leaders group.

Anna Moreno, MSW received a Bachelors of Arts at Louisiana State University and a Master of Social Work from Washington University in St. Louis. She is a Senior Parkinson Foundation Information Specialist and has had the honor of speaking with and answering questions from people with Parkinson's, care partners, family, friends and health care professionals on the Parkinson's Foundation Helpline for 13 years. She has also worked on developing educational materials and webinars. She previously worked for the National Cancer Institute Helpline.