Expert Voices: Managing Sex and Intimacy Issues With Parkinson’s

In this installment of our “Expert Voices” series, Parkinson’s News Today asked sex therapist Amy Raad to answer some of your questions about dealing with sex and intimacy issues caused by Parkinson’s disease.

Raad is a clinical social worker and American Association of Sexuality Educators, Counselors and Therapists (AASECT)-certified sex therapist at the University of Michigan center for sexual health. She is also a counselor at the Michigan Medicine Center for Vulvar Diseases in the Department of Gynecology.  Raad specializes in women’s health, sexual health and intimacy concerns, intimate relationship distress, and trauma recovery.

Amy Raad is a sex therapist and social worker. (Photo courtesy of Amy Raad)

What common challenges arise in intimacy between people with Parkinson’s and their partner?

Unfortunately, Parkinson’s disease impacts so much of everyday life, including intimate relationships. Intimacy is not just limited to sexual contact; it is a sense of connection and belonging. Healthy intimate relationships offer us a safe place, both physically and psychologically. When a challenge arises that impairs our ability to be intimate, many areas of our life can suffer.

Parkinson’s disease and the medications used to treat this condition come with a range of negative effects on our ability to be intimate: physical, psychological, and relational. Physically, many of those with Parkinson’s experience low libido, fatigue, poor sexual coordination (sometimes resulting in pain), premature ejaculation, delayed ejaculation, erectile dysfunction, vaginal dryness, and difficulty reaching orgasm.

Psychologically, many of those with Parkinson’s disease experience depression. This can lead to decreased libido and interest in sexual activity. It can also result in social isolation and emotionally pulling away from your partner. Some of the medications used to treat depression and Parkinson’s can also negatively impact libido and erectile dysfunction. Conversely, dopaminergic anti-Parkinson therapy can cause hypersexuality. This can create its own set of psychological and relational challenges.

This disease can also lead to changes in relationship dynamics, which, in turn, can lead to decreased relationship satisfaction. Partners and patients may start to feel estranged as they take on the new roles of caregiver and patient as the disease progresses. Nonsexual touching and affection tend to decline, and couples may lose the closeness they once shared. For example, sometimes patients choose to sleep in a separate bed from their partner due to their involuntary movements. While this may help improve sleep quality, it has the unintended effect of decreasing the intimate connection created by bedsharing.

If a couple’s sex life has faltered due to Parkinson’s, what might be helpful in restoring it?

Communication! Communication is critical in any healthy sexual relationship and even more so when one or both partners are managing a chronic illness. If we don’t talk about how we are feeling, we are denying ourselves and our partners critical information needed to maintain a healthy relationship. Spend some time on your own thinking about your sexual health and share these thoughts and feelings with your partner. Then, together with your partner, brainstorm some ideas of how you could reconnect. Remember that sex is not just penetration. Sex is any touch given with the intent of creating sexual arousal. Remember that the goals of good sex are not erections, vaginal wetness, and orgasms — the goals of good sex are connection, intimacy, and satisfaction.

There are a number of sexual health aids that can also help couples with their sex lives. I recommend using a high-grade silicone lubricant such as Uberlube or Sliquid’s Silver for any penetrative sex act. Vibrators can be used on the clitoris, the penis, the testicles, and internally to increase stimulation. Penis pumps and restriction bands are also helpful in creating and maintaining erections. Looking at erotic imagery or reading erotic literature can help increase physical arousal, which can lead to more satisfying sexual experiences. Incorporating this into sexual activity on your own or with your partner could be helpful.

How does a person navigate a conversation with their partner about declining libido?

First, please to be kind to yourself. This can be a tricky subject to address. Try to remember that as frustrating as this symptom may be, it is a common symptom of Parkinson’s disease. Typically, one’s decreased libido has nothing to do with their partner.

When I talk to my patients about sexual desire, I use a car analogy. A car’s speed is controlled by two parts: the accelerator and the brakes. Our desire for sexual activity is similarly organized. We have a sexual accelerator, which consists of the reasons we might want to have sex. Possible reasons could include: we want to have an orgasm, we find our partner attractive, we want to have a child, we watched a film with steamy sex scenes, etc.

We also have sexual brakes, which are all the reasons we might not want to have sex. Examples here include: we are tired, stressed, in pain, we have lower dopamine levels, we feel disconnected from our partner, etc. If a car’s brakes are fully engaged, no matter how much you press the accelerator, the car won’t move. It is the same way with sexual desire.

If our sexual brakes are fully engaged due to Parkinson’s disease or other factors, it doesn’t matter how much we long for or emotionally desire our partner, our libido or interest in sexual activity will remain low. I find this analogy very helpful for both patients and their partners to better understand declining libido.

I recommend patients be honest with their partners about how they feel and to use this analogy to help partners understand where they are coming from. It is very easy for partners to think the decrease in libido is their fault, but this simply isn’t the case. This analogy can help partners not take the patient’s declining libido as rejection.

How might a couple address sex life challenges caused by fatigue?

First, make sure to talk to your doctor to best understand what might be influencing your fatigue. Your fatigue could be related to the disease, your medications, or your mental health. Your physician might have greater insight into its cause. Regular exercise is helpful in reducing overall levels of fatigue. It also helps improve sexual function. Ask your doctor about what exercise routine is best for you.

Think about your day and when you tend to have the most energy. Morning? Afternoon? Try to schedule sexual activity around that time. Scheduling time for sexual intimacy shows that you are making this part of your life a priority. Even if you are too tired for sexual activity during the time you set, you can still find another way to connect erotically. For example, you could listen to an erotic audiobook, take a warm bath, or lay naked together.

Do you have advice for a person struggling with unfamiliar performance anxiety and/or changes in body image?

I wish I could wave a magic wand to get rid of the idea that one must “perform” sexually. Sex is not a performance. Sex is about pleasure and play. Ideally, it is being curious and vulnerable with yourself and your partner. As the amazing sexual health researcher Emily Nagoski says, “Pleasure is the measure!” Try to focus less on judging what your body is or isn’t doing and focus on the pleasurable sensations it is experiencing. Re-evaluate your expectations, and make sure that pleasure, satisfaction, and connection are your goals.

I hear concerns about body image multiple times a day, every day. Our society has a vicious way of making everyone insecure about their bodies, especially if we are not young and able-bodied. Each body, regardless of size, color, ability, age, or health is capable of experiencing pleasure. How we look has nothing to do with our ability to experience and create pleasure. Think about all the pleasant sensations you can enjoy: the warmth of a hot shower, the pleasant chill of a fall breeze, the smell of your partner’s perfume or cologne, the taste of your favorite food, the striking beauty of the natural world, the serene comfort of your partner’s embrace. None of these sensations have anything to do with performance or how we look.

If thoughts of performance anxiety or body insecurity enter your mind, try to redirect your thoughts onto observing the pleasurable sensations your body can experience, and try to create these for your partner as well. Mindfulness is an excellent practice to develop if you are struggling with unwanted thoughts or insecurities. Essentially, it is intentional awareness of the moment. You can find more information about mindfulness at mindful.org.

What encouragement do you have for someone who feels too uncomfortable to bring up sexual dysfunction with their clinician?

Please know that it is part of your clinician’s job to discuss sexual dysfunction. Sexuality is a normal part of the human experience, and your clinician is trained to discuss it. Sexual dysfunction is, unfortunately, just another of the many negative ramifications caused by Parkinson’s. It is just as valid and important to address as any other symptom. There is no reason to suffer sexual dysfunction in silence. Many treatments are available to help reduce the impact that Parkinson’s has on sexual health. You deserve to receive appropriate treatment for all the areas in which you’re struggling, especially for sexual health.

What can couples explore to attain physical and emotional intimacy outside of sex?

The ways of connecting intimately with your partner are limitless. If you find that physical closeness is lacking in your relationship, intentionally set aside time for pleasurable touch. This could include a daily ritual of showering or bathing together, snuggling, holding hands, or giving each other massages. Before you separate for the day, make sure to hug, kiss, or share some other meaningful touch. When you reconnect after being apart, share a similar touch again. There is mixed research out there on the ideal length of a hug, but try to hold on for between five and 20 seconds.

Try something new with your partner. When we seek out new and novel experiences, our brains can feel a rush of happiness. When we do this with our partner, our brain associates this happy feeling with our partner. Take a class, try a new restaurant, or travel somewhere new — it could be a five-minute drive or a five-day road trip! Try to be curious together. Hobbies are a great way of connecting. From studying astronomy to taking up zip lining, there are many ways of creating meaningful, fulfilling, and joyful connection with your partner.

Expert Voices is a monthly series involving a Q&A with an expert in the Parkinson’s space about a specific topic. These topics and questions are curated from a survey in which we ask readers what they want to learn more about from experts.

Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.