Author: Gila Bronner and Orna MoorePublished: 25 October 2017
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In the fourth part of our series focusing on sexuality and Parkinson’s, sex therapist Gila Bronner and nurse consultant Orna Moore offer an insight into coping with the impact of young onset Parkinson’s disease on a couple relationship
People with Parkinson’s of all ages have to confront both motor and non-motor symptoms, as well as the side-effects of medications. One of the most common non-motor symptoms, however, is disturbed sexual function – and this appears to be more marked in the one in ten Parkinson’s patients classified as ‘young onset’ (aged 50 or under).
These differences in psychosocial functioning between young onset and older people may be partly due to differences in symptoms, such as the more common occurrence of treatment-related motor complications. However, differences in the impact of the condition on social factors such as employment, perceived stigmatisation, and marital discord may also contribute to greater psychosocial dysfunction and depression in those with young onset PD.
Young people with Parkinson’s experience the disease differently. They are coping with its various symptoms while also being in the middle of life challenges. Socially, they may be devastated because most of their friends are probably healthier. They may be parents of young children; they may be at a different stage of their career and less able to deal with the challenges of a disabling condition, and they often have less time to look after themselves.
Maintaining a sex life
While sex and intimacy are important for the wellbeing and quality of life of every human being, this aspect of life has a special significance for young people. However, maintaining a sex life in the modern age is not easy. Long working hours, being occupied with children and household duties, and the distractions of social media limit the ability of young couples to invest in their intimate life. Their lives can be characterised by constant fatigue.
Consequently, studies find high prevalence of sexual dysfunction among young people. For example, in our sex therapy clinic in Israel, half of the young and healthy patients (under 45 years old) who applied for sex therapy last year complained of erectile dysfunction and one in five suffered from low sexual desire.
Let’s now imagine a young couple living with Parkinson’s. They have to cope with the physical and emotional problems arising from the condition – and its impact on their sex life. These changes can have a major impact on self-esteem, body image and self-perception – and can lead to additional stress, anxiety and fatigue, all of which exacerbate their sexual difficulties. Feeling less intimate and less trusting can augment the deterioration of intimacy and social relationships. There are some role changes within the couple’s life that are not easy to get used to. These problems negatively affect couple relationships, sexual satisfaction and the desire to engage in sexual or other intimate relations.
Openness is key
Couples should try to talk openly about these changes – and seek help where needed. Health professionals can help people with Parkinson’s and their partners to sustain their intimate relationships through active assessment and the sharing of techniques. They can also help those with the condition to understand their own abilities, as well as the limitations brought upon by their illness, and allow them to adjust accordingly.
Finally, it is important for couples to discuss the reality of the condition with their children. Sharing information about Parkinson’s with young children and teenagers is not simple, but children often cope better with difficulties when the story is told in an open way. Attempting to hide the diagnosis from children may not be the best decision: they feel it instinctively when something is not right in the family. Keeping secrets steals energy, which should be directed towards coping with the demands of maintaining a marriage, making a living and raising a family.
Tips for maintaining sex and intimacy while living with Parkinson’s:
1. Find ways to talk openly about your intimate and sexual needs with your partner.
2. Make time for intimacy.
3. Don’t have sex in your intimate time.
4. Enrich your emotional relationship: share, talk, listen, encourage one another.
5. You may enhance sexual expression through your senses with quiet and romantic music, candles or scent.
6. Enrich your physical intimacy: hug, kiss, hold one another, have a bath or a shower together, give a massage to one another, or just lie near one another without having intercourse. You’ll be surprised how pleasurable it can be.
7. Plan dates for your couple time: mark it on your calendar. Go out, have fun together, revive your romance.
8. Plan sexual activity for a time of day when symptoms tend to be least bothersome and energy levels are highest. Make sure that you are both rested and relaxed. Complement one another. Be kind and generous.
9. Plan privacy: intimacy and sexuality need privacy, a closed door and quiet, which will enable you to focus on yourselves with no interruptions.
10. When you have sex, focus on pleasure and stop counting (number of orgasms) or measuring (time and size).
11. If you have any sexual problems, don’t wait till they get worse. Consult with specialists (urologist, family physician, gynaecologist, couple therapist, psychologist, sex therapist or PD nurse specialist).
12. Finally, Parkinson’s is a progressive disease. Getting used to discussing sexual issues will help you in the future, when more changes are necessary.
Gila Bronner is a sex therapist specialising in sexual rehabilitation. She is director of the Sex Therapy Service at the Sexual Medicine Center, Tel Aviv, and a sex therapist at the Institute of Movement Disorders, Sheba Medical Center, Israel.
Orna Moore is a nurse consultant, working with families with neurodegenerative diseases. She works at the Department of Neurology, Tel Aviv Medical Center, Israel.
For comprehensive information about intimacy, sexuality and Parkinson’s, please visit the EPDA website.
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