Having Parkinson’s will undoubtedly affect the many relationships you have with friends, family and your support network. The impact will be very individual but gradual adjustments will probably be needed on both sides of a relationship as you each adapt to life with Parkinson’s. See our Relationships and communication section for more information on this.
If you are in an intimate relationship then you will both probably experience some difficulties regarding intimacy, sex and sensuality. These can be associated with anatomical, physiological, biological, medical and psychological factors, all of which can impact on self-esteem, quality of life, mood and relationships. Sensual perception and intimate communication may be affected by the physical and emotional changes Parkinson’s can bring, resulting in a less active, intimate and enjoyable sex life.
Sexual difficulties (sometimes called sexual dysfunction) can be experienced by anyone and can result in sexual dissatisfaction for both the person with Parkinson's and their partner. The most frequent difficulties are:
- decreased sexual desire and motivation to engage in intimate activities
- increased sexual interest, sometimes resulting in a desire discrepancy between partners
- compulsive sexual behaviour or hypersexuality, a feature of impulse control disorders
- arousal problems, meaning that you can't respond physically or emotionally to sexual stimulation or you do get aroused but cannot sustain this. For men this may involve erection difficulties whilst for women vaginal dryness and sexual pain are common
- orgasmic problems related to medications used for treating depression and anxiety, to physical limitations in maintaining movements or sexual positions, and to concentration difficulties
- difficulties resulting from the need to change roles in sexual activity
- limitations or inabilities in intimate touch
- limited choice of sexual positions
- difficulties in intimate communication.
How can Parkinson's affect intimacy, sex and sensuality?
Parkinson’s does not always lead to problems with intimacy and sexuality, so do not assume that you will experience difficulties. But for some people problems can occur due to physical symptoms such as slowness of movement, rigidity, tremor and poor coordination, or because of emotional symptoms such as anxiety, fatigue, decreased motivation or depression.
For many people a healthy sex life plays an important role in their quality of life and the quality of their relationship. Physical touch (such as cuddling, kissing, caressing and hugging) is important. These physical activities produce important neurotransmitters, such as oxytocin and endorphins, which may decrease stress, increase our pain threshold and contribute to the health of the person with Parkinson's and their partner. If one partner in a relationship experiences a problem with intimacy, it is likely to impact on the sexual enjoyment of the other, reducing their motivation to engage in intimate touch or sexual activity. Consequently, resolving such difficulties can improve general satisfaction as well sexual satisfaction on both sides of the relationship.
It is not unusual for sexual desire in all women, with or without Parkinson’s, to fluctuate due to changes in mood, contraception, the time of the monthly cycle, medication, childbirth or menopause. But if you have Parkinson’s you may also now experience reduced desire and/or reduced lubrication, resulting with painful intercourse or difficulties in achieving orgasm. Men with Parkinson's may also experience erectile dysfunction and premature ejaculation that had not previously occurred. These difficulties can place an additional strain on relationships which may lead to tension, particularly if you don't communicate as a couple on sexual problems. But with the right help, these problems can be resolved or alleviated.
Over time sexual disturbances may be heightened by falling dopamine levels and by unwanted side effects of some Parkinson’s medications.
People with Parkinson's often say they feel less attractive. Carers may be afraid to impose their needs for physical relationships and may refrain from initiating any intimate activities. This can lead to their partner feeling more unattractive and their self-esteem is likely to be reduced.
In short there are many factors that may be involved and some adjustment will almost certainly be needed for both partners over time.
Managing sexual problems in Parkinson's
The physical symptoms of Parkinson’s, such as stiffness and slowness of movement, may affect sexual activity. Making sure your Parkinson’s medication is working effectively may improve these symptoms – speak to your specialist or Parkinson’s nurse. Planning your intimate and sexual activities for when symptoms are at minimum and finding comfortable positions may help. Members of your care team, for example a physiotherapist, occupational therapist or Parkinson's nurse, may be able to advise you concerning positions and effective touching.
Fatigue can be a symptom of Parkinson’s. Some medications for this, such as amantadine, have been shown to improve sexual function. If tiredness is an issue, try being intimate or having sex at a different time of the day when you are more alert. You may also choose to divide attention: one intimate session will focus on the needs of one partner, while the other assists, and on another day you change roles. You may find that your satisfaction is greater. When are the giver, you concentrate only on the pleasure of your partner, then in the next intimate session, you feel safe and calm, knowing that it is your turn to receive pleasurable touch.
Bowel and bladder problems
Fear of incontinence during sexual activity may have a negative impact not only on self-esteem, but also on sexual arousal, especially in women with Parkinson's or female partners.
If you experience urinary incontinence, certain drug treatments may be helpful. Emptying your bladder and avoiding drinks for two hours before intercourse may help with continence.
If you experience bowel incontinence, an enema before intercourse or using an anal plug may be helpful.
Your medications should be reviewed for any side effects they may have on sexual function. Some drugs for depression may cause a reduction in sexual desire, problems with arousal and delayed, or lack of, orgasms. These problems cause many people to stop taking their medication.
Sometimes a change in medication may help with regaining sexual satisfaction. For some people a 24-48 hour medication 'vacation' can improve sexual response but this should always be discussed with your doctor or Parkinson's nurse first.
It is best to speak to your specialist or Parkinson’s nurse about the options available for you.
Hypersexuality (Compulsive Sexual Behaviour)
Some people who take dopamine agonists experience impulsive and compulsive behaviour. For a small number of people, other types of Parkinson’s medications, in particular levodopa, have been shown to have similar side effects. Impulse control disorders is one of the non-motor symptoms in Parkinson’s. It encompass compulsive, repetitive or reward seeking behaviours, such as hypersexuality (compulsive sexual behaviour), compulsive gambling, shopping, or eating.
Hypersexuality is characterized by a preoccupation with sexual thoughts and impulses, increased demands for sex, sometimes involved with excessive use pornography.
These might be felt at inappropriate times or towards people other than a partner. In spite the fact that such compulsive behaviour is rare, it can be distressing for the person and those around them. With hypersexuality, there is also a risk that someone will behave in a way that is socially unacceptable (e.g. sexual harassment), or may even break the law. There is also a health risk of acquiring sexually transmitted diseases and AIDS.
Consequently, this type of behaviour can have a big impact on the person affected and the people around them. It may be accompanied by sexual delusions and hallucinations, such as imagining that a partner is having an affair or thinking others are having sex when they’re not.
While some couples may enjoy the extra sex, for some it may become a difficult and distressing problem, particularly if the sexual desires feel out of control and are out of character.
If you think you are experiencing this behaviour, the first step is to talk to your specialist or Parkinson’s nurse if you have one. You may find it uncomfortable to talk to a healthcare professional about the difficulties you are having. But remember they will have spoken to others with similar problems before and everything you tell them will be treated confidentially.
Sometimes people who experience impulsive and compulsive behaviour may not realise they have a problem. If you notice your partner’s sex drive has excessively increased or their sexual behaviour has been inappropriately changed towards you or anyone else, it is important to discuss it with a healthcare professional as quickly as possible.
Compulsive sexual behaviour can be treated. Sometimes a change in medication can ease or remove the problem. Some people may need to seek more professional support, for example from a psychiatrist or a psychologist or psychosexual therapist. Ask your doctor for advice on this. See also Compulsive and impulsive behaviour.
Decreased sex drive and arousal difficulties
Many people with Parkinson’s and their partners experience decreased sex drive or arousal problems. This has to do with the psychological and emotional impact of diagnosis as well as the result of the motor and non-motor symptoms of PD. General tiredness, anxiety and depression, which are common for someone with Parkinson’s, can reduce motivation to act and also lower desire. Your doctor or specialist will first try to treat any depression or mood disorders you may experience.
There are many different things you can try to get in the mood for intimacy or sex. But, first start with communicating these issues to your partner. If the discussion is awkward or provides no solutions, ask your doctor or other healthcare professionals to moderate such a discussion. You should do whatever suits you as a couple, but you could try the following:
- take time to relax in the bath
- have a sensual massage by candlelight
- do something more energetic or playful together to get you in the mood
- change your routine, for example have sex in the morning when you’ve got more energy, instead of the evening
- revive the spark by investing in new lingerie or sex toys, watch an arousing DVD or read erotic stories to each other (there are plenty on the Internet).
Allow yourselves to enjoy an intimate or erotic touch without being forced automatically to shift to intercourse. Whatever you do, agree beforehand that your goal is to get close and enjoy time together. The result may be sex, but it may be non-erotic pleasure. Take the pressure off by investing your energy into creating the right environment. The outcome will happen more naturally.
Both men and women may experience reduced or absent orgasms. Some men may experience problems with premature or delayed ejaculation, or not ejaculating at all. These problems are also quite frequent in older men and women as part of natural aging. Some treatments (e.g., antidepressants) may inhibit or stop the ability to orgasm.
Treatments for orgasm problems may include therapies such as psychosexual therapy or cognitive behavioural therapy. This can help individuals or couples find more helpful ways of sexual communication.
If you have problems reaching orgasm:
Try not to worry
- As with all sexual problems, the first thing to do is to try and minimise anxiety. If you worry about orgasm, it’s more likely to happen too quickly or not happen at all. Spend more time on general excitement and pleasure. Agree that it won’t matter if one of you doesn’t experience orgasm – you’ll enjoy the time spent together.
- Understand what you enjoy and share with your partner.
- Solo or mutual masturbation can help you understand what you find enjoyable. Give yourself enough time to explore what you find pleasurable without being disturbed. Feeling ashamed or embarrassed about what you are doing will not help you achieve orgasm, so try and relax into the sensations you experience
- If you use medication for anxiety or depression, check with your doctor if they can be changed.
Get to know each other
Take time to really get to know each other’s bodies. Ask about the kind of stimulation your partner likes. Try to fine-tune your technique so you’re always giving the best experience. When sex is approached in a more relaxed and exploratory manner, orgasm may follow more naturally.
Sex aids including vibrators and vacuum devices may be of some use to aid stimulation and orgasm. If your tremor or dyskinesia disturb the way you touch, you can also use various materials for effective and pleasant touch. When you use massage oil the hand slide gently. You can use gloves (e.g. microfiber dusting gloves are perfect), silk, fur, feathers or other materials. You can also use body massagers.
Pelvic floor exercises
For some women, pelvic floor exercises may help increase awareness of pelvic floor contractions and improve pelvic tone. These exercises can be tricky, but a physiotherapist, nurse or GP will be able to explain how to do them properly. They might recommend on using vaginal trainers or biofeedback treatment.
If problems persist, then speak to your GP, specialist or Parkinson’s nurse. A change in medication can often help.
Who can help?
Although talking about intimate relations can be awkward – in fact some doctors and healthcare professionals also find it difficult to address sexual issues - seeking help is important to maintain a healthy relationship. There are many professionals who can help so try to overcome any embarrassment and share your concerns so that you find the help you need.
Sex therapy treats a wide range of difficulties with sexual function and expression. It brings together specialised clinical skills in helping men and women as individuals and/or as couples to deal effectively with their sexual expressions.
Sex therapists help people overcome sexual difficulties and hopefully regain an active and satisfying sex life. In many countries sex therapy involves special training for those who already have professional experience as doctors, clinical psychologists or clinical social workers. In order to become a sex therapist, these professionals must be trained specifically to evaluate and carry out treatment of sexual disorders. In many countries nurses are trained as sex counsellors too.
The basis of sex therapy rests on the premise that sexual behaviour is learned and that difficulties can be alleviated through sex education, sensitisation exercises and improved communication between sexual partners. Treatment is generally short-term and focused specifically on the sexual difficulties, although in some cases sex therapists may also address underlying issues in the relationship. The treatment is most successful when it includes the patient's sexual partner.
Important! Because the field of sex therapy is relatively new and can be defined in many ways, licensing for sex therapists only exists in a few countries. Anyone seeking sex therapy should therefore check out potential practitioners carefully and choose wisely.
If you’ve tried talking to each other about your relationship problems and you feel that you’re not getting anywhere, counselling may help. A trained counsellor can help you look at your problems in a different way, as a couple or individually, and improve communication in order to overcome challenges you face.
There are various types of counselling or therapy that can help, such as psychotherapy and cognitive behavioural therapy. Ask your doctor for advice if you would like to speak to a counsellor or therapist.
Websites and forums
You may also find it helpful to send any questions or requests for advice to a Parkinson's related forum or website. You may find on the Internet articles, Q&As, audio lectures and YouTube interviews on sexuality and Parkinson’s disease.
If you contact [email protected], your question will be forwarded to the author of this article, Gila Bronner.
How else can I help myself?
Parkinson’s has an impact on sexual function and intimacy at many levels. Diagnosis may affect both partners emotionally, resulting in lack of desire. If you try to have sex or intimate relationships in this tense period, you will probably find it difficult because of anxiety and low mood. Fear of rejection, a lack of self-esteem and sexual difficulties can be upsetting and unsettling.
It is therefore very important to have plenty of supportive, intimate love during this period, and if you do encounter any sexual difficulties, talk to each other about them and don’t give up. Don’t be afraid to discuss your worries with your partner, your doctor or a therapist - communication is an important part of finding solutions. You may find books and website that give you good advice and enable you and your partner to discuss your sexuality more openly.
Seeking medical treatment for depression and anxiety can also help you to regain your previous sexual desire and sexual function. But remember that one of the most frequent side effects of antidepressants is difficulty in reaching orgasm, so talk to your doctor if you think this may be affecting you. If the use of antidepressants is essential, a good sex therapist can help you maintain a satisfying sexual life.
Motor symptoms, such as rigidity, tremor and bradykinesia may influence your flexibility and may mean that you need to take a more passive role. Some couples cope well with these role changes; others need professional support to accommodate changes and physical limitations. Again, discussing the difficulties you experience is important in finding ways to overcome them.
We would like to thank Gila Bronner (certified sex therapist, expert in sexuality and Parkinson’s disease, director of the Sex Therapy Services at the Sheba Medical Center, Israel) for her help in reviewing this information.
Our thanks to Parkinson's UK for permission to use the following source(s) in compiling this information:
- Sex and Parkinson’s.
- Gila Bronner, MPH, MSW – Parkinson's disease: three steps to maintaining intimacy during the coronavirus:
- Wait and you shall see: sexual delay discounting in hypersexual Parkinson’s disease
- Brochure provided by World Parkinson's Program with information in 14 languages about sexual disfunction in Parkinson's
Articles from Parkinson's Life online magazine
- Podcast: Love, sex and Parkinson’s
- Perspectives on relationships, intimacy and Parkinson’s disease
- Webinar: let’s talk about sex and Parkinson’s
- Sex, intimacy and Parkinson’s: an expert guide
- The dating diaries: Allison Toepperwein
- Sex and young-onset Parkinson’s
- Sexuality, intimacy and Parkinson’s: getting help
- Intimacy, sexuality and Parkinson’s
- Why women need to talk about sex and Parkinson’s
- How my husband’s Parkinson’s has ruined our sex life
- Let’s talk about sex (and Parkinson’s)
- Caring and sharing – the importance of learning to let it out