Sexuality, Intimacy and Parkinson's Disease

By Kristoffer Rhodes PhD, Physical, Medical and Rehabilitation - Virginia Mason Medical Center

Most people familiar with Parkinson's disease (PD) are aware of the movement and motor symptoms that classify this as a neurological condition. Other prominent and all too frequent symptoms, however, are discussed less often. These include depression, anxiety, behavioral disturbances and personality changes. Rarely discussed are the changes in sexual functioning and intimacy that frequently accompany PD. As many as 68% of men and 88% of women with PD experience decreased libido, problems with sexual functioning and a sense of decreased intimacy with their partner. A smaller, but still significant percentage experience increased sexual behavior that can be incredibly disruptive and difficult to talk about. Despite these staggering figures, the barriers to discussing these problems persist, including lack of quality research in the area, taboos about sexuality in the elderly and those with neurological disease, and feelings of discomfort when talking about difficult topics. This article provides a starting point for patients, partners and providers to start talking about ways to improve sexuality and intimacy for those affected by Parkinson's.

There are many factors that may lead to changes in intimacy and sexuality in couples dealing with Parkinson's disease. Among the main predictors of sexual dysfunction and declines in perceived intimacy are increased age and severity of the disease and its symptoms. These include motor impairments such as rigidity and tremor that can lead to impaired mobility in bed. There may also be changes in appearance such as sweating, drooling, changes in body odor due to the disease or medications, as well as gait disturbance. Facial masking and decreased expressiveness may make it difficult to read affection and desire. Sleep disturbances may lead to bed separation, thus making intimacy less spontaneous and infrequent. It should be noted that previous sexual problems and depression are also two of the major factors that impair intimacy and function, as are the presence of other health conditions, such as diabetes and heart problems. As if all of these things weren't enough, both those with PD and their caregivers typically experience significant fatigue and changes in roles that disrupt the usual patterns and venues for intimacy. So what can couples do to begin to reclaim the intimate parts of their relationships?

The first step is attempting to clarify your concerns and feelings in your own mind and then talking about them with your partner. Recognize and address the emotional stresses of the illness, caregiving, and care-receiving. A good place to start may be to spend some time thinking about the following questions: "What do I need? What do I want? What's missing? What's working?" A frequent and sometimes sizeable barrier to discussing intimacy and sexuality can be our own internal discomfort with the topic. There may be internally held beliefs that "good boys and girls don't talk about these things." Rest assured that they indeed do. The anticipatory anxiety and fears of discomfort are often worse than any actual embarrassment that may arise when partners find the courage to begin the conversation. Clarifying some of these issues in your own mind may be a helpful first step in getting the conversation between you started.

Once you've begun this internal clarification process, start talking with your partner. Communication is critical! This cannot be overstated. One of the most essential ingredients is listening. Learn how to listen actively and effectively- there's a clear distinction between listening and waiting to talk. Avoid "mind reading" or assuming what your partner means before they've fully expressed themselves. Don't be afraid to check in and make sure you understand them fully before you respond. Learn or rediscover what makes you and your partner feel heard and validated when you are talking. Talk frankly and openly about sexual and intimacy needs. Be clear about what you want, what you need, and what will suffice if you can't have those exact things. It may also be beneficial to identify and then relax your expectations on time limits for communication. Try writing or typing to each other if verbal communication is difficult or laborious and motor changes don't rule this out as a means of communication. It may be helpful to schedule a time to talk about this when energy and mental acuity is at it's highest; at the very least, avoid those times where one partner is overly tired or stressed. Couples or family counseling may be helpful to learn effective communication and listening skills, as well as effective ways to negotiate and compromise. Should you pursue this option, look for a counselor who is well-versed in communication training and neurological disease or behavioral medicine.

Part of your discussions should include what defines intimacy. Many people think of intimacy and sex as the same thing, but there are important ways that couples can experience intimacy without intercourse. Find other ways to be close to one another that deemphasize sexual intercourse. Talking openly and honestly about what matters and even talking about your fears and concerns can be intimate. Demonstrate love, respect, warmth and togetherness in non-sexual ways, such as holding hands or each other. Kissing and caressing are often where couples begin- revisit this with a newfound curiosity and sense of openness. If sexual intercourse is possible, experiment with different routines (e.g., switch lovemaking to the morning, trying different positions, etc.). As difficult as it may be, the desire to break out of the old routines and adapting to your challenges are the most important ingredients for redefining and rediscovering intimacy.

After you've begun the conversation with each other, it's time to talk to your doctor about treatments, effects of medications, and possible referrals to specialists or counselors, if needed. Treatments for men have received much attention and include oral medications, injections, pumps, vacuum devices, or prostheses. For women, there are oral estrogens, creams, lubricants and devices to provide added stimulation. Keep in mind that not all interventions will work for every individual, every relationship, or every situation. Again, perhaps the most critical intervention is to maintain your curiosity and willingness to keep looking for answers, as well as your ability to keep talking with each other.

In addition to the steps above, it will be critical for you and your partner to keep working toward solutions, repeating the same conversations and experiments as necessary. Acceptance of where you are and "what is" will be important, as will be the need to shift your focus from "what you can no longer do" to "what you can still do." This is no easy task given all of the demands of caregiving and the toll taken by PD. However, remember that you will not find the time for intimacy, you will have to make it!