Ask an Expert: Elaine Book and Gila Bronner Discuss Sexual Health and Intimacy in Parkinson’s
Elaine Book, MSW, RSW has worked in the field of social work for over 30 years in a variety of community and hospital settings, with an interest in the geriatric population. She is the Center Coordinator and Clinic Social Worker for the Pacific Parkinson’s Research Centre at the University of British Columbia (UBC) in Vancouver, Canada. She is also a Clinical Instructor in the Faculty of Medicine in the division of Neurology at UBC. She has become a leading speaker and presenter in the Parkinson’s community, and serves as a mentor with the Parkinson Foundation, a planning committee member of the World Parkinson Congress, and a member of the Parkinson Canada Medical Advisory Council. Elaine has also been active in research projects focusing on coping with Parkinson’s and the role of social work in providing care to people with Parkinson’s disease and their carepartners.
Gila Bronner, MPH, MSW, CST is one of the leading sex therapists in Israel, and a world-renowned expert in sexual rehabilitation in neurological disorders. Gila is the Founder and Director of Sex Therapy Services at the Sheba Medical Center in Ramat-Gan, Israel. She trains healthcare professionals in sex education, and helping their patients to cope with issues of sexual rehabilitation. She also specializes in treating patients with Parkinson’s, Huntington’s, epilepsy, multiple sclerosis, and stroke. Gila’s international work includes lectures and workshops in Europe, North America, Asia, and Australia. She has also spoken at the Movement Disorder Society Congress and the World Parkinson Congress.
How common are concerns around sex and intimacy among people with Parkinson’s disease?
EB: Concerns around sex and intimacy are very common, as there are a number of factors related to Parkinson’s disease (PD) that can result in challenges in sex and intimate relationships. Some of these factors, which can affect both people with PD and their carepartners, include physical factors like pain, fatigue, and motor symptoms, or emotional factors like depression, anxiety, apathy, or shame. There are also common sexual function diagnoses, such as erectile dysfunction (ED), low sexual desire, or hypersexuality, that can often contribute to sex and intimacy concerns.
What are some effects Parkinson’s may have on an individual’s sex life? How are men and women impacted differently?
GB: Our sexual functioning is affected by our mood – people with Parkinson’s and their carepartners may experience a higher frequency of depression and anxiety due to the challenges of the disease, which may in turn affect the ability to experience desire and sexual excitement. Parkinson’s can also cause a lack of motivation, which may inhibit someone from initiating intimate activities. The motor symptoms of Parkinson’s can also have a significant impact on an individual’s sex life. For example, bradykinesia or tremors negatively affect fine motor ability, which allows for the gentle, rhythmic touch and movement involved in sexual activity. These difficulties in movement create distractions, which can cause men to lose an erection or cause women to lose lubrication, reducing the ability to orgasm. Motor symptoms can also affect the ability to give and receive pleasant, non-erotic intimate touch, such as hugging or holding hands.
How can certain common medications that people with Parkinson’s take contribute to changes in sexual function?
GB: Antidepressants are one class of medications that may contribute to decreased desire and sexual ability. Some individuals with PD report a feeling of heaviness while on these medications, affecting their ability to get aroused or reach orgasm. On the other hand, the dopaminergic treatments often used to treat motor symptoms of Parkinson’s can cause increased sexual desire and hypersexuality. When this occurs, the person with PD experiences these heightened feelings as a result of their medications, while their partner continues to experience normal or even lower levels of desire – this gap is referred to as sexual desire discrepancy. Talking to your doctor about an adjustment in medication or seeking advice from a therapist can help you work towards closing this gap and improving sexual function.
What are some common treatment options or strategies that may help individuals improve their sexual health, and what are some overall benefits of a healthy sex life?
GB: Increasing understanding and awareness is one key strategy. Educating people with Parkinson’s on the effects that different medications may have, or the challenges they may face in regards to sexuality, may provide insight into their options and a sense of relief. It is beneficial to understand sexuality as a holistic, comprehensive matter. Sex is not simply a physical act. Intimacy includes non-erotic activities like hugging, touching, talking, and feeling close to one another. Increasing these non-erotic acts often positively impacts general health concerns like pain, stress, and anxiety, and may help to restore an intimate connection between couples experiencing sexual dysfunction. Additionally, planning sexual activity for times when you feel better may reduce distractions and anxiety, while using things like ED medications, oils, or lubricants may be recommended to treat specific concerns.
Sexual health questions may be uncomfortable for some people to address with their doctors. Do you have any advice on how a discussion on this topic can be approached, and why it is important?
EB: Sexual health questions are important because sex and intimacy impacts quality of life significantly, and thus it is worthwhile to address any changes in this area, whether it is related to PD or other health conditions. Remember, sex and intimacy are normal parts of life, and it is normal to have challenges in this domain whether you have a health condition or not. This may feel like a taboo or embarrassing topic, but it is not! Your physician and healthcare providers are there to help address health issues in your life, including sexual health concerns. If you are not asked by your healthcare providers about your sexual wellness, advocate for yourself, share your concerns, and be honest. Talk about your concerns with your partner before your visit, and consider attending appointments together so that you are on the same page.
What specific steps can a person with Parkinson’s take if they are experiencing concerns about their sexual health?
GB: Firstly, find a healthcare professional that you trust and feel comfortable sharing intimate details with, whether that is your neurologist, family physician, or a nurse. They are there to help you, and you can ask them to refer you to someone who may be more specialized to treat sexual health concerns. Men may be referred to a urologist, as they can help with issues like ED and premature ejaculation, and women may be referred to a gynecologist for issues such as painful sex or vaginal dryness. Finding a sex therapist or a relationship counsellor, and working with this kind of expert as a couple, may help to address any relationship issues that have arisen due to sex and intimacy concerns. The most important thing to remember is that there is help available.
How can spouses or partners in caregiving roles maintain healthy intimacy with their loved ones with Parkinson’s?
EB: One key to balancing intimacy with meeting care needs is to practice self-care. In order to give and receive in a relationship, you as the carepartner need to be physically, mentally, intellectually, and socially well taken care of. Also, consider changing up or delegating some of the challenging or more time-consuming tasks associated with caregiving to make time and space for an intimate connection with your loved one with Parkinson’s.
Is there anything else you would like to add?
EB & GB: Whether you are single or with a partner, think about and/or communicate your intent to have more intimacy in your life, then come up with a realistic plan as to what that looks like and how it will happen. If intimacy has been missing for some time, start slow and have reasonable expectations. A small change like a daily kiss or expression of gratitude can make a big difference. Make it a priority and be proactive – there are a lot of resources available with suggestions of steps you can take to maintain or improve your intimate life. Don’t give up, every person has a right to have a satisfying and positive sex life.
This content was published in the Winter 2020 edition of our quarterly magazine, Viewpoints. The content was accurate as of this publication date.