Many people with Parkinson’s experience sexual problems related to the disease. Movement symptoms can pose practical challenges, non-movement symptoms such as sleep or mood changes can decrease desire and drive, and changes in body image can impact confidence. While there are many treatments and strategies, people don’t always access them because the topic can be tough to talk about with a partner or doctor. A sex therapist can be helpful in navigating these discussions as well as sex and relationships with Parkinson’s. To learn more, we spoke with Daniela Wittmann, PhD, LMSW, Associate Professor of Urology at the University of Michigan and Certified Sex Therapist.
The Michael J. Fox Foundation for Parkinson’s Research (MJFF): Sex isn’t an easy topic for many to talk about, especially if there are problems. Why is it important to discuss?
DW: Sex is part of our overall well-being. To the degree that it’s pleasant, it’s can’t be anything but positive. It’s important to have a healthy sex life, which is different for each person, depending on their goals for this part of their life. For many, sex is just as important as a regular exercise routine or stress management. But the frequency varies based on a person’s interest and their situation. Sex is broad: it’s not just intercourse, it’s also touch, oral sex and devices, for example. Being open to expanding your repertoire to match what’s available to you (whether you are single or have significant symptoms) will help you continue to have a healthy sex life.
MJFF: What advice do you have for talking to a doctor about sexual problems?
DW: Before your visit, think about what your concern is and write it down. You also may leave a message for your doctor ahead of time so that they can be prepared to address your questions and refer you to a specialist, if necessary. This may be a urologist, gynecologist or a mental health provider who specializes in sexual health. It may take persistence to get to the right person, but don’t give up. (See more of Dr. Wittmann’s tips on talking to your health care provider.)
MJFF: How do you talk to your partner?
DW: Be open and honest. Sex tends to be non-verbal for many people, but when there are changes or symptoms that interfere, it’s important to talk about what’s happening so you can accommodate. Some people with Parkinson’s may experience increased tremor with the excitement of sexual activity; others may have dyskinesia or movement limitations that make it difficult to accomplish sexual motions. Some partners worry that touching could be painful or worsen symptoms. Talking about symptoms and concerns can help you understand each other and work toward solutions, such as planning intimacy for times of day when medication is at its best or shifting to activities other than intercourse if symptoms are in the way. Talking about sexual issues also can increase emotional intimacy during sex, which can be a positive outcome of problem-solving.
MJFF: How might care partners of people with Parkinson’s be affected?
DW: It is important to acknowledge sexual changes not just for the person with Parkinson’s, but also for their care partner, who can experience fatigue, depression, and lack of sex drive. In this way, there is a mutual understanding of each other’s challenges and greater opportunity to work on having a good sexual experience. It’s important for care partners to take care of themselves (by taking breaks and getting enough sleep at night, for example) and to talk about their feelings (with friends, others in the community, or, if helpful, a therapist). For care partners of people with significant thinking and memory changes, sex can be a tough emotional situation. Some may feel emotional pain or unsure about sex when their loved one doesn’t seem like the person they once knew. Others may feel guilty about either continuing or limiting sexual activity. It’s important for a care partner to examine their feelings and move forward accordingly.
MJFF: How can a sex therapist help in Parkinson’s?
DW: A sex therapist can be your (and your partner’s) educator, advocate and information provider. Sex therapists who are familiar with Parkinson’s can help you evaluate what problems you may be having and methods that will improve your sexual relationship and pleasure in this new setting of Parkinson’s. (This could be talking through symptoms and emotions with your partner, timing sex for when medications work best, or finding ways other than intercourse to be intimate.) Seeing a sex therapist may be a weekly visit if there are relationship problems that need consistent work. But it also can be a once-in-a-while visit to check in about concerns as they come up. A sex therapist can work with your Parkinson’s doctor to make sure that sexual health advice is coordinated with your medical needs.
MJFF: How do you find a sex therapist?
DW: You can ask your Parkinson’s, urology or gynecology doctor or search online at www.aasect.org, the website of the American Association of Sexuality Educators, Counselors and Therapists, which lets you know the location of every certified sex therapist in the United States.
MJFF: What should you look for in a therapist?
DW: An effective sex therapist for a person with Parkinson’s should be willing to learn about the unique physical and medical issues that affect you. The therapist can learn from you and your partner, from your Parkinson’s doctor, and from the research literature. As with any health care provider, the person should be compassionate, able to communicate well, and willing to admit if they are not sure that they understand a problem. Examine your own feelings: if you feel heard and understood, you probably have found the right therapist for you.
MJFF: Any other thoughts?
DW: Continuing to be sexually active while living with Parkinson’s is an ongoing process. As symptoms change, adjustments need to be made. Talking to your partner and to specialists can ensure that sexual function remains at the highest possible capacity. Addressing feelings about changes and giving and getting support can provide a sense of safety and accomplishment, which is a terrific sexual health outcome.