Sex, Love, and PD – Webinar notes

Sex, Love, and PD – Webinar notes

In late February 2020, the Michael J. Fox Foundation (MJFF) offered a webinar on sex, love, and Parkinson’s disease (PD).  The panel of speakers included a person with PD, a professor of geriatrics, and a certified sex therapist. They discussed how PD can impact sexual function; the different sexual changes that men and women experience; how medications can impact sex; and strategies and treatments for sexual disfunction in PD. This was followed by an extensive Q&A session. We at Stanford Parkinson’s Community Outreach listened to the webinar and are sharing our notes.  

The speakers on the panel included:

  • Larry Gifford, member of the Michael J. Fox Foundation Patient Council. He also hosts the podcast, “When Life Gives You Parkinson’s.” He was diagnosed with PD at age 45.
  • Camille P. Vaughan, MD, MS, Associate Professor and Section Chief of Geriatrics and Gerontology, Emory University School of Medicine.
  • Daniela Wittmann, PhD, LMSW, Associate Professor of Urology, University of Michigan. Certified Sex Therapist.

To watch this webinar, visit here.

If you have questions for MJFF about content in this webinar, you can contact them via email or via phone at 800-708-7644.

The webinar mentions a helpful handout with tips for talking to your healthcare provider about sexual issues. It can be downloaded as a PDF here and here.

For additional resources on sexual dysfunction, see this page on the Stanford Parkinson’s Community Outreach website.

Now… on to our notes from the webinar.

– Lauren

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Sex, Love, and Parkinson’s – Webinar notes

Presented by the Michael J. Fox Foundation

Webinar on February 20th, 2020

Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

Please note – this post contains frank discussion of human anatomy, sexual issues, and some explicit sexual acts. It may not be appropriate for all readers.  

What do we mean when we say “sex?” The word can mean different things to different people, and does not only refer to penetrative intercourse, even though this is often the first thing that comes to mind. Sex can be a lot of different things: sensual touch, masturbation, oral sex, vibrators, among others. There are lots of ways to be sexually active.  

Sexual challenges are common in people with PD. Some studies suggest as many as 70-80% of people with PD have some level of sexual dysfunction. Aging, hormonal changes, and some medications can also lead to or worsen sexual changes. These issues often go unaddressed since people don’t always feel comfortable bringing it up with their doctor.

How can PD change a relationship?

The symptoms of PD and the effects of the disease can change a relationship in multiple different ways:

Motor symptoms – such as tremor, stiffness, slowness, and imbalance – can make intimacy more difficult and negatively affect confidence. People may worry that they are unable to do the same motions or positions as they used to. For many, sex has been a nonverbal act without much direct communication; the motor challenges of PD may make it necessary to discuss sex more frankly, and this adjustment can be a steep learning curve for many couples. Sometimes, a partner is afraid to touch or inadvertently harm the person with PD.

Sex tends to be pretty nonverbal for many people during most of their lives

Expressing oneself becomes more challenging due to masked facial expression and speech difficulties, which can impact how you express affection to your partner.

Spontaneity may be more of a challenge than in the past. Couples often have certain routines around sex, and sometimes these need to change to accommodate the individual with PD. For instance, often couples tend to be intimate at night, which is often the worst time of day for someone with PD. Communicating about the best timing for sex can remove some of the spontaneity but can pay off in making intimacy possible for both.

Non-motor symptoms can impact sex drive and performance, such as sleep changes, fatigue, depression, anxiety, and apathy. It is important to remember these are symptoms of the disease.

Self-confidence and body image are often affected by PD. All aging adults start to experience an erosion of the control we once had over our bodies; in PD, this can be accelerated. People may feel uncertain how they will function during sex and also what kind of pleasure they will be able to provide to their partner.

For all of these challenges, communication, reassurance, and openness are really important. The panelists discussed specific sexual issues that can occur in PD and ways to address them.

Sexual changes women with PD can experience

Some women with PD may already be post-menopausal, which can cause many of these difficulties as well.  

  • Desire: decreased sex drive/libido
  • Arousal: insufficient lubrication
  • Orgasm: inability to achieve climax, though usually stimulation of the clitoris works
  • Pain: pain in the pelvic area during or after intercourse – it is really important to talk to one’s gynecologist or neurologist if this is happening

Vibrators are good for stimulating blood flow. They don’t need to only be used as substitutes for a penis. Water-based lubricant can be helpful as well.

Sexual changes men with PD can experience

Changes in the nervous system that occur in PD and sometimes also with aging can affect a man’s ability to participate in sex. Medications for other conditions can also impact this; retrograde ejaculation, for instance, can be caused by prostate prescriptions. There’s nothing really dangerous or problematic about retrograde ejaculation, it just may be very different than one is used to. 

  • Desire: decreased sex drive/libido
  • Erection: inability to attain and/or maintain erection sufficient for intercourse
  • Ejaculation: delayed or too early ejaculation
  • Orgasm: inability to achieve climax

Larry mentioned that every time he sees his urologist, there is a question on the intake form about sexual function, but then it’s never discussed directly during the appointment. People often wish the doctor would bring it up; ideally, they would, but often they don’t.

It can be helpful to send a message to the doctor ahead of time letting them know you would like to discuss sexual function. You may need to be persistent until you get the right person who can discuss this with you, whether it’s a urologist or a mental health specialist with experience in sexual issues.

Medications that can impact your sex life

Dopamine agonists such as pramipexole (Mirapex), ropinirole (Requip), and rotigotine (Neupro) can cause hypersexuality, sometimes to an unhealthy extreme, but also lower blood pressure, which can make it more difficult for men to sustain an erection.

Antidepressant medications may lower sex drive and negatively impact performance; they can also make it harder to orgasm. However, leaving depression untreated is also not a good option! Depression itself can decrease libido as well, not to mention impacting quality of life. If the prescribing physician authorizes it, sometimes a “drug holiday” can be helpful to give you a break and facilitate intimacy.

Prescription medications for erectile dysfunction can also lower blood pressure. If you have PD, it is important to be aware of how well-controlled your blood pressure is – many people with PD tend to have low blood pressure, and this can prove dangerous if combined with a medication that will lower it further.

Some medications may tend to cause greater or fewer sexual side effects. Communicating with your provider about your sex life is important, so they know to offer alternative medications if needed.

Other treatments for sexual problems

Therapy is an important component in managing sexual dysfunction. Depending on the issues at hand, you may want to consider which type of therapy will be most helpful: sex therapy, behavioral therapy, or couples’ therapy?

There are also devices that can be helpful, such as vacuum devices to help achieve an erection, and vibrators to stimulate blood flow and arousal. Penile rings can sometimes assist with an erection as well. Lubricants help to achieve arousal and decrease pain with penetration.

For some men who have difficulty sustaining an erection, a surgical implant can provide a mechanical way to become erect. The procedure is performed by a urologist. However, the pump requires manual dexterity to operate, so for many people with PD, this may not be a good option.

Tips for talking with your doctor about sexual issues

Think about which of your doctors you will confide in. A primary care doctor, neurologist, or urologist is most likely to be able to help. If possible, message or call your doctor’s office ahead of the appointment, to let them know you’d like to talk about sexual function at the visit.

Think about realistic goals you are hoping to achieve at the appointment, and try to be clear and direct with your doctor about what you are experiencing. Bring a list of specific questions so that you don’t forget something!

Main takeaways

  • Be open, honest, and communicative with your partner.
  • Consider broadening your sexual repertoire to include non-penetrative sex.
  • Schedule sex ahead of time and choose a time of day that tends to work for you both.
  • Be adaptable and patient.
  • Speak with your doctor about any sexual issues you are experiencing.   

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Question & Answer Session

Q: Can orgasms be helpful for PD by releasing extra endorphins / dopamine?

A: We don’t have evidence on this specifically. For lubrication, having more sex will help with lubrication issues. Sexual health is a part of our overall well-being, whether it has any specific effects on PD or not.

Q: How important is it for people to have a healthy sex life?

A: It’s driven by the individual and what their goals are. For many people, it’s just as important as a regular exercise routine or stress reduction. For others, sex is not that important. The frequency of the activity might vary a lot, person to person, but it’s important for most people’s happiness and relationships. For a single person, a healthy sex life may mean masturbation. Studies have shown that being sexually active is generally good for one’s mental health. The flirtation and anticipation can also be a lot of fun!

Q: Does levodopa cause erectile dysfunction?

A: It can affect blood pressure, specifically lowering it. To the extent that low BP can make it more difficult for the veins in the penis to fill, that can possibly be an impact. Erectile dysfunction is not a common side effect of levodopa itself, and can help someone move better during sex, so in general, it is probably better to have levodopa on board.

Q: Sometimes when I get anxious or excited, such as during sex, the tremor is worse. Any advice about this?

A: You can try to time sexual activities when your meds are at peak effect. If your tremor is worse, maybe that’s a day you do something besides intercourse.

Q: How to navigate sex with someone new as a person with PD? When should I disclose my diagnosis?

A: That’s up to the individual. If you’re looking for a long-term relationship, honesty is an important component. Disclosing that you have PD is probably best done earlier in the relationship than later, though not necessarily on the first date, if you don’t feel comfortable. It also depends on your motor symptoms! Some people have very visible symptoms. Disclosing is a kind of test of character and commitment to a relationship.

Q: Can cannabis impact libido positively or negatively?

A: Cannabis is more of a depressant for most activities, and does not generally enhance sexual function. She does not generally recommend cannabis use in people with PD, and certainly not for sexual function.

Q: Do you see sexual changes more commonly with young-onset PD or with older people with PD?

A: Younger people tend to be more aware of the changes; it may impact them more dramatically and they may be more sexually active. As people are older, they may already have less sex drive and it can be less impactful.

Q: Every time I see the neurologist, they ask me if I have been experiencing any compulsive behaviors such as gambling, excessive shopping, hypersexuality. Why?

A: Dopamine agonists are a class of medications used in PD that can cause hypersexuality and other behavioral issues. These can be really disruptive to life and relationships. If someone starts experiencing these issues, the dosage may need to be reduced or stopped. These impulse control disorders are often noticed more by the care partner than the person with PD.

Q: Caregivers may experience exhaustion and depression, or other issues that can affect their libido. Any advice for the care partners?

A: That relationship is built on many things beyond just PD. Communicate and find ways to make it work for both of you. This might mean shaking up the routine, going to a hotel, using music, remembering romantic times, lighting candles, or other things you have shared as a couple over the years that tend to bring out the romance. Also, timing is everything! Scheduling ahead of time can be helpful for both. Keep in mind that intercourse isn’t the only activity you can do; non-penetration touch and stimulation can really help people connect and kindle those feelings.

Q: Can medications for erectile dysfunction lose efficacy over time, with repeated use?

A: Not as far as she knows, though anecdotally, some people do report decreased effectiveness over time. It may be that their PD has progressed and is impacting the nervous system more than before. Pills improve the ability to have an erection but don’t cause one on their own; stimulation and arousal are also important. There’s also a window of time that these are effective, for instance, about 4 hours for Viagra.

Q: Should I see a sex therapist?

A: If sex is important to you, then it’s important to have a resource you can go to. Sex therapists can be a great resource, especially if they have experience with PD. It may not be that easy to find one, but the American Society of Sexuality Educators, Counselors, and Therapists (AASECT) can be a helpful resource for finding one in your area.

Q: Any advice for those who are unable to achieve orgasm?

A: Try to be sexually active when you are well rested; fatigue can make it much more difficult. Manual stimulation and vibrators can be helpful. Men and women can both play with vibrators for stimulation. Pay attention to the environment and try to make the room comfortable and pleasant. The FDA did approve a device to help women achieve orgasm, called the EROS clitoral therapy device. It brings blood into the clitoris and can help facilitate orgasms.

Q: How to discreetly obtain a vibrator, for those who are embarrassed to go to a store?

A: The online retailer Good Vibrations is a great way to order such equipment online.  (They also have a number of store locations in the SF Bay Area.)  

If you travel with your vibrator, make sure to put it in your checked luggage to avoid embarrassment while going through airport security!

Q: Are testosterone supplements helpful?

A: Several NIH studies in the last few years looked at testosterone supplements in older men (not men with PD specifically). About 700 men enrolled, but they had screened 50,000 participants total! This means there were a lot of exclusion criteria. There may potentially be some benefits for specific symptoms or if you have very low testosterone, but it’s a very small percentage of men in the general populace that are going to benefit from it. These studies weren’t necessarily looking at sexual function relating to the testosterone either.

If you plan to ask your doctor to check your testosterone levels, be aware that accurately diagnosing low testosterone is a cumbersome testing process that takes place three days consecutively, at the same time of day.

Q: Does deep brain stimulation (DBS) surgery have an impact on sexual changes?

A: The panelists were not aware of any negative impacts; it may very much help motor function and lower the need for other meds, so it can actually be helpful.

Q: Any advice for someone trying to navigate a sexual relationship with a person with PD who has cognitive decline or impairment?

A: This can be very painful; this person may not feel like the same person you had a history of intimacy with. Partners sometimes feel guilty about limiting or discontinuing sexual activity but their feelings are important too. Physical contact and sexual activity can be important but if there isn’t mutuality, it’s okay for the partner to reevaluate whether they are okay continuing to be sexual.

Q: What is the difference between hypersexuality and a strong libido?

Hypersexuality is when the sex drive is so strong that it’s causing behavioral issues, especially that may impact the partner. Examples include pestering a partner for sex, or compulsively viewing pornography.

Q: Do you recommend ultrasound wave technology for ED?

A: This is experimental; she does not recommend it unless as part of a controlled trial.

Q: Any advice specifically for the LGBTQ community?

A: It is very important for those with PD who are part of this community to reach out to each other and connect with others. They have historically been marginalized but their needs are important too.