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.