5 Myths about sexual health and intimacy in Parkinson disease
This week on the Parkinsonsecrets.com blog we are going all in on the topic of sexual health and intimacy. It is taboo for most physicians and care teams to discuss this issue. We would argue it is critical that these discussions occur openly and frequently in the healthcare setting.
This blog was written from excerpts from a chapter “Sexual Health, Wellness and Nonmotor Parkinson’s” by Dr. Subramanian and the amazing Dr. Sarah Brindle who met at yoga teacher training. The chapter is for a book edited by Prof K R Chaudhuri and Miriam Parry. The chapter also heavily references the work of Gila Bronner. This is Part 1 of the blog. Stay tuned for Part 2 next week.
Dr. Brindle received her Ph.D. in Counseling Psychology from the University of Iowa and is a California-licensed psychologist, having practiced in southern California for over 14 years. She completed her clinical internship at the VA Long Beach Healthcare system and post-doctoral fellowship at Rancho Los Amigos National Rehabilitation Hospital, focusing in rehabilitation psychology and working with individuals with physical disabilities and chronic health problems. She has provided inpatient and outpatient psychological services to paralyzed veterans at the Long Beach VA Healthcare System in the Spinal Cord Injury Service for 16 years. In 2011 she created the SCI Peer Mentor Program at the Long Beach VA, specifically designed for newly injured Veterans receiving inpatient rehabilitation. Through this program, she facilitates a monthly social hour with invited Veteran speakers sharing their injury experiences as well as community disability organizations presenting information about their programs. She also facilitates a weekly support group for newly injured Veterans.For the past several years, she has facilitated a spirituality support group that provides spiritual community and discussion for SCI Veterans and addresses the unique intersection of spirituality and disability. More recently, in pursuit of her interest in the mind-body connection, she became certified as a yoga instructor, with specialized training in adapting yoga for people with disabilities. In addition to her psychology work at the VA, she has been teaching 2 different adaptive yoga classes at the VA for the past year.
Myth 1: Sexual health does not make a difference in
quality of life of People living with Parkinson’s
disease (PWP); so I should not complain about it.
Social connection is one of the key determinants of health and sexual expression, in particular, it can be an integral part of connection within a wellness approach. Achieving fulfillment in the sexual realm and feeling connected through sexual intimacy can be important to the well-being in PWP. Positive sexual expression is highly correlated to positive mood, emotional wellness, and quality of life. Intimacy, in touch, even from just hugging has been shown to promote release of beneficial chemicals such as oxytocin and endorphins which can promote happiness, decrease pain and decrease stress hormone cascades. For individuals with chronic health problems, such as PD, sexual dysfunction and other aspects of physical functioning can impact sexual self-esteem and—in turn—overall quality of life.
Bottom line: Sexual health is important for your quality of life.
Myth 2: Since my doctor does not ask me about my
sexual health it must not be important to my PD and
I should not bring it up.
Too often, sexual health assessment is focused purely on the treatment of sexual dysfunction, rather than including the broader more subjective experience of sexual well-being. People with chronic health problems and disabilities have traditionally been limited in healthcare settings by an ableist, heterosexist view of sexuality that parallels the medical paradigm- ie. in order to have sex you have to not be disabled and you should have a heterosexual partner. Holding a PWP to an able-bodied standard of sexual performance, however, can often cause a PWP to avoid sexual expression entirely if they are struggling with physical and psychological symptoms which may prevent a “normal” sex life— by society’s standards. Many providers may simply overlook assessment of sexual health concerns since they assume that the PWP’s medical condition precludes interest in sexual activity or that the PD by default must be more important and pressing than consideration of the sexual aspect of life functioning. Some providers may even believe that it is inappropriate or ill-advised to encourage sexual activity for a PWP. Society at large is also guilty of these assumptions and biases, especially for medical conditions like PD that can appear to “predominate” a person’s lifestyle. A PWP may in turn sense discomfort in their providers when discussing this topic or simply not bring up issues around sexuality due to their own discomfort or fears that their providers will not be supportive. Contrary to these beliefs and assumptions, people with chronic health conditions, disabilities, and normal physical changes associated with aging— these people do continue experiencing sexual interest and activity throughout the lifespan. Indeed, the World Health Organization states that “sexuality is a basic need and aspect of being human that cannot be separated from other aspects of life" (World Health Organization, 2002). It is important to remember that disease or aging does not diminish the basic human needs to feel loved, be touched, be intimate physically and emotionally, or to feel like a sexual being. Clinicians are encouraged to incorporate screening for sexual health concerns for all patients, regardless of the assumption that some patients may not be interested in the topic. . This would mean engaging with the issues described in Table 1.
Myth 3: My sexual health does not have anything to
do with my PD.
For PWP there are many aspects of their disease experience that may directly or indirectly impact sexual expression and sexual satisfaction, including motor and non-motor symptoms, as well as the psychological and relational sequelae often associated with these symptoms. Problems directly related to sexual functioning can include decreased desire, erectile dysfunction, loss of lubrication for women, difficulties reaching orgasm, and hypersexuality associated with certain PD meds.
Other associated problems that can interfere with sexual activity include incontinence, tremors, muscle stiffness, lack of fine motor control, excess drooling and sweating; among others. Many PWP can experience depression, anxiety, lowered sexual self-esteem, and body image concerns that may affect their willingness to engage in sexual activity. Some non-motor issues can lead to sleeping in separate beds from your partner which can further impair intimacy. Identifying effective ways to manage these symptoms and to engage in physical intimacy can represent a source of pleasure and relative normalcy within a disease process that can feel out of one’s control.
Myth 4: I can only get health benefits from sexual
intercourse in the classic sense; so if I am unable to
engage in intercourse then I should forget about
other forms of intimacy with my partner.
Expanding the idea of intimacy and social connection to include non-romantic or non-sexual relationships is key. For some PWP, social isolation along with apathy, are a significant problem for a variety of reasons. Social isolation and loneliness have been associated with worse symptom severity and decreased quality of life in PWP. It can prove to be be a vicious cycle in which a PWP feels embarrassed due to stigma and then becomes isolated; which can subsequently worsen their motor and non-motor symptoms. This cycle leads to further isolation and loneliness.
Hence, it is important to educate people on the importance of social connection. Research in social connection has shown that it is important to create meaningful relationships in not only intimate spheres (with a spouse or romantic partner), but also with relational (friends circle) and societal spheres with a community of people who have similar purpose and interests (Parkinson’s support group, religious group, etc). Many variables can influence an individuals’ prioritization of sexual intimacy (e.g. past negative experiences with intimacy, sexual trauma, etc.), but exploring other forms of connection and intimacy can be important. Using social prescribing to proactively identify persons at risk for loneliness or depression and by connecting them with social support— this is a new approach that is gaining recognition.
Myth 5: There is nothing I can do to improve my
sexual health so I should not bother to complain.
The emotional aspects of intimacy should also be explored. There are many aspects of intimacy including emotional, erotic, physical (sensual) and mental/spiritual. Some PWP may be yearning for love and understanding but confusing the physical sexual aspects of their life with these emotional needs. Establishing a good “open line of communication” is crucial. Education and empowerment is key. Support from a mental health provider may also be helpful in terms of exploring emotional intimacy needs and how to meet them. It may be beneficial to speak to other PWP in support groups. Some people may find that reframing their concept of erotic intimacy from sexual intimacy to a different type of physical/affectional, emotional, or spiritual intimacy may be helpful.
Exploring physical touch through therapeutic massage, self-touch/massage, and other practices can be very healing. Practicing yoga, meditation, or prayer with others can also be spiritually connecting. The simple act of prescribing a hug for one minute to a couple can be therapeutic.
Couples should know that having personal time to themselves outside the couple relationship can also be important and can prove to be “restoring.” Having non-sexual relationships outside just the intimate sphere of connection should be encouraged and nurtured. It is important for the PWP and their care partner to get some time away from each other and build relationships outside of just the one they have as a couple.