Exploring Parkinson’s Disease’s Impact on Sex and Intimacy

On a recent episode of APDA’s Dr. Gilbert Hosts, I spoke with Dr. Regina Koepp, a clinical psychologist with expertise on sex, intimacy, and Parkinson’s disease (PD). We covered a lot of ground during the broadcast and answered questions from the audience. It was a very informative conversation, and we encourage you to watch the full episode, but for your convenience we’ve listed the topics and questions from the episode below with timestamps, so you can skip to what interests you most:

02:17 Dr. Koepp presentation

26:57 APDA’s ParkinSex book and kit

30:09 Should people with PD ask their doctor for medication for erectile dysfunction?

32:21 What would you recommend to help women who are experiencing dryness?

34:56 How do I find a good sex therapist?

35:36 What can be done about hypersexuality that occurs from PD medications?

39:38 What to do if PD interferes with your sense of masculinity?

42:25 Are there over-the-counter medications or remedies for the sexual problems of PD? 

44:08 Does Medicare cover seeing a sex therapist?

45:00 If you have PD, how and when do you start a conversation about sex with a new partner? 

48:15 Can you give some recommendations concerning sex and intimacy if my partner has developed dementia?

52:40 How do you reassure your loved one that your love is not dependent on ability to perform sexually?

But there were many more questions that came in that we didn’t have time to answer during the live broadcast. Today we present some of those additional questions and their answers.

Additional Questions on Sex and Intimacy

Q: Is it OK not to have sex?

A. Absolutely. You may have reached a point in your life when sexual intercourse is no longer possible. However, before you determine that you have reached that point, it is important to ensure that there isn’t a correctable medical or psychological issue, that if treated, could allow you to continue to have a meaningful sex life.

There are many reasons why sex may be difficult for someone with PD. These include:

• Sexual dysfunction due to PD – e.g., decreased libido, erectile dysfunction, dryness, inorgasmia
• Motor symptoms of PD – e.g., decreased mobility, decreased dexterity, tremor
• Non-motor symptoms of PD – e.g., depression, apathy, fatigue
• Psychological factors – e.g., body image issues, mismatch between the sexual desires/needs of the two partners

All the above can be addressed (hopefully successfully!) by your medical team with changes in medication, sex therapy, or psychotherapy. There may come a point in the disease however, when one or more of these issues cannot be treated successfully and sexual intercourse is no longer possible. However, it is still very possible for intimacy to be maintained. APDA’s ParkinSex book and kit introduces novel ways to explore touch and intimacy – using tools such as a feather, a blindfold, a candle, and a bath bomb – that the couple may not have experimented with before. These items can broaden the definition of intimacy for a couple, thereby enhancing their physical and emotional connection.

Q. Does deep brain stimulation (DBS) affect sexual function?

A. DBS is a surgical treatment for PD in which thin electrodes are implanted into parts of the brain that control movement. A few studies have looked at the impact of DBS on sexual function in people with PD and results are mixed, with some studies determining that sexual function is improved, while others determining that sexual function is worsened. In a recent study of this issue, 24 people with PD were administered standardized clinical scales of sexual function (International Index of Erectile Function and the Female Sexual Function Index) before and after DBS. In this study, sexual functioning was not improved or worsened, but rather unchanged before and after surgery.

Q. Can PD medications contribute to sexual dysfunction?

A. Dopaminergic medications that are used to treat motor symptoms of PD do not usually cause sexual dysfunction. For most people they also do not improve sexual function, although in some, they can cause hypersexuality.

Other medications that are prescribed to people with PD for other symptoms however, can contribute to sexual dysfunction.

Medications that can contribute to sexual dysfunction include:

• Anti-depressants
• Beta-blockers (which can be given for tremor)
• Anti-cholinergic medications (which can be used to treat non-motor symptoms of PD such as urinary dysfunction and drooling)

Review all your medications with your doctor to determine if any can be changed or eliminated to help maximize your sexual functioning.

Q. Are there other treatment strategies for erectile dysfunction if medications such as Viagra are not sufficient?

A. Yes! There are many strategies beyond PDE-5 inhibitors (of which Viagra is one of three options on the market). These treatments include penile injection therapy, vacuum pump devices, intraurethral prostaglandin suppositories, and surgical placement of penile prostheses. All these advanced treatments require a consultation with a urologist.

Q. I am a woman with PD. I am still interested in sex and have normal arousal, but recently, I am unable to reach climax. Are there any treatments for this?

A. A sex therapist can provide instruction and exercises on new techniques and sexual positions for the couple, methods of self-stimulation, and training in the use of sexual enhancement devices, all of which may be helpful for anorgasmia (delayed, infrequent, or absent orgasms). There have been some medications tested for anorgasmia, but there is not enough evidence to support their use. Hormone replacement therapies including estrogen and testosterone, may have some benefit but must be used with caution as each has side effects. Discuss the potential use of these medications with a urologist or gynecologist knowledgeable in sexual dysfunction.

Q. I am completely exhausted after sex. How do I change this?

A. The important thing to keep in mind is that with age and chronic disease, your body has changed, and this will require making adjustments that you have not had to make in the past. Although it might seem unromantic, you will likely have to plan for sex in a way that you did not have to in the past. So, make sure that you factor in time after sex for sleep.  Also, make sure you are getting adequate sleep on a regular basis, and getting regular exercise that can help fortify your overall stamina and energy level.

This principle holds true for other issues that may interfere with sex. Planning can be very effective to help achieve a better sex life. For example, many people with PD find that their symptoms fluctuate throughout the course of the day, with some times of day being predictably worse or better than others. Therefore – plan to have sex at the times of day when you predict that your functioning will be best!

Q. What can I do about tremor that affects sexual activity?

A. Tremor of any kind – not just the tremor associated with PD – tends to increase with increased excitement or stimulation. The trigger could be one of many things including anger, hunger, anxiety, as well as sexual stimulation. I have had couples tell me that they have come to accept increased tremor as part of sex – and not necessarily a bad part. One couple told me that tremor is their gauge of sexual arousal.

If this strategy doesn’t work for you, consider asking your doctor if you could take extra PD medication before sex and see if this decreases tremor during your sexual activity.

Q. What can I do about apathy affecting sexual activity?

A. Apathy is a feeling of indifference or a general lack of interest or motivation in activities and can certainly interfere with an interest in sex. It is a non-motor symptom of PD that is difficult to treat because there are no medications that have been proven to be effective. If the person with PD is aware of their apathy however, and wants to address it, working together as a couple to re-establish intimacy, with focus on small goals, can be effective. Sex therapy, especially with a therapist who understands the challenges of PD, may be a valuable strategy to address this problem.

Q. How can I control bladder leakage during sex?

A. Urinary dysfunction can be a non-motor symptom of PD, with symptoms including urinary urgency, frequency, leakage, and incontinence. If you are having bladder leakage during sex, a referral to a urologist would be warranted. One treatment strategy may be pelvic floor physical therapy to strengthen the muscles that control urination. Medications to help control urination may also be helpful in this situation.

Q. What if there is a mismatch between the partners – one wants sex and the other does not?

There can be many reasons for unequal sexual desire between partners:

1. The person with PD may experience heightened sexuality – often due to PD medications – which is not aligned with their partner’s feelings.
2. The person with PD may not feel sexually desirable because of the changes that they are experiencing in their body. This may occur even if their partner continues to feel sexually attracted to them.
3. On the other hand, the partner may not feel that the person with PD is sexually desirable anymore. This could be due to the development of a symptom that may seem to be incongruent with sexuality such as drooling or urinary incontinence. It may be due to the development of cognitive decline or behavioral changes. The partner may have taken on a significant amount of caregiver responsibility and can’t meld a caregiver role with that of a sexual partner. 

In any of these situations, a sex therapist can help analyze these differences and try to help the couple communicate successfully to redefine their sexual and intimate relationship.

Tips & Takeaways

• Sex and intimacy can play an important role in a relationship and your quality of life, yet sexual symptoms such as decreased libido, erectile dysfunction, decreased ability to climax and dryness are very common in both men and women with PD.
• If sexual issues related to PD are a problem for you or a loved one, there are ways to improve symptoms and maintain or rebuild intimacy.
• Listen to an honest and very interesting broadcast dedicated to answering questions about sex, intimacy and PD.
• If you have a PD-related question, you can submit it to our Ask A Doctor portal.