Caring and sharing – the importance of learning to let it out
Why good communication is essential in families affected by Parkinson'sREAD MORE
Sexuality and intimacy are huge challenges that face people with Parkinson’s and their partners. But as specialists Gila Bronner and Orna Moore explain, open channels of communication are essential for a decent quality of life
Intimacy is an important aspect of human behaviour that involves communication, physical and emotional closeness, and interpersonal interaction.
Sexuality is one of the primary manifestations of intimacy. It is a complex process that is influenced by the interaction of biological, psychosocial, economic, political and cultural factors. Sexual dysfunction, meanwhile, is a problem that affects a person’s health, as well as their emotional and physical wellbeing.
In Parkinson’s, disturbed sexual function is commonly associated with motor disturbances, emotional and cognitive difficulties, sleep disorders and the side effects of medication. Each of the disease’s symptoms can create further emotional, physical and cognitive difficulties, which may be expressed in changes to the intimate interactions between the person with Parkinson’s (PwP) and their partner.
Facing the reality
Living with Parkinson’s involves dealing with a variety of motor and non-motor symptoms that may affect relationships and sexual lives, and result in frustration, sexual inadequacy and sometimes loss of self-esteem. While some couples easily accept limited intimacy or the cessation of sexual activity, for others it can lead to a significant reduction in their quality of life.
Motor impairment such as rigidity, tremor, immobility in bed or difficulty in fine finger movement may impair the touch needed for intimate moments (hugging, kissing, caressing) and sexual activity. Other symptoms of the disease such as excessive sweating, drooling and gait disturbances make people feel less attractive, while masked faces can be interpreted as showing a lack of affection or desire. Movement disorders may also cause patients to be sexually passive, thus imposing a more active role on the spouse.
According to our clinical experience, spouses often feel rejected and insulted when their partners with Parkinson’s ignore them intimately and sexually. On the other hand, PwPs may refrain from making intimate advances themselves due to the fear of rejection or failure.
Coping with motor and non-motor symptoms
Non-motor manifestations of Parkinson’s can often be more disabling than the motor symptoms. They may include bowel dysfunction, drooling, urinary problems, hallucinations, fatigue, cognitive impairment and dementia, sweating, and skin problems. Some of them, such as olfactory dysfunction, constipation, depression and rapid eye movement sleep behaviour disorder (RBD), can precede the motor symptoms. Others, especially cognitive symptoms such as hallucinations and dementia, tend to occur in the later stages of the disease.
Three out of four PwPs suffer from constipation. Bowel dysfunction and constipation can cause feelings of irritability, heaviness and pain. It is obviously very difficult to be intimate under such conditions.
Bladder problems are also common – in fact, they affect one third of PwPs. The most common problem is an overly active bladder, the symptoms of which include getting up to urinate at night, frequently passing urine and a sense of urgency when needing to go. These types of urinary problems, including incontinence, can damage a person’s self-esteem, leading them to feel less attractive and sexual as a result.
In addition, depression, anxiety and self-esteem frequently contribute to sexual dysfunction and impaired sexual fulfilment. Again, these issues affect one third of PwPs. Even those people who are moderately depressed lose interest in pursuing sexual activity and are very difficult to seduce and arouse.
The medications used for depression and anxiety will also have an effect on intimacy and sexual function. While an improvement in mood may result in the ability to communicate intimately and become sexually active again, antidepressant medications may also cause erectile dysfunction and difficulty reaching orgasm.
Elsewhere, sleep disorders and excessive daytime sleepiness may lead to bed separation and reduced opportunities for intimate touch and sexual activity. Partners may be nervous, impatient and tired, and their anger and frustration regarding these sleep disorders can have a serious impact on the relationship. Meanwhile, couples who used to talk and share their feelings might find that speech problems decrease the opportunities for further intimate communication.
The contradictory role of the partner-caregiver
Under these difficult circumstances, the carers of PwPs frequently face contradictory roles. On the one hand, they are partners or spouses with their own natural feelings and needs for intimacy and sexual activity. At the same time, however, they are required to function as caregivers who cope with the implications of a chronic progressive illness. These obligatory tasks are often expressed with overwhelming feelings of frustration, depression, fatigue and a sense of loss. The consequential build-up of unresolved stress factors, therefore, can contribute to undesirable characteristics within relationships.
It is important to remember that caregiving demands a lot of time, attention and energy. Consequently, PwPs and their caring partners may spend too much time together. All healthy relationships require some space and distance, which means that each couple needs to allocate time for separate activities in their weekly schedule to do things they enjoy – such as exercising, meeting friends or going to the cinema. These separate experiences will enrich the relationship, create some much-needed space and promote better sexual closeness.
The role of the professionals
PwPs frequently feel embarrassed about their sexual needs. They may fear that their interest in sex is inappropriate – especially when many are so ill or so old. Some PwPs are also unaware that their sexual dysfunction is related to their condition or treatment and, as a result, they do not raise these issues with their neurologist.
It is essential, therefore, for healthcare professionals to be aware of the sexual changes that occur as a result of the disease and its treatment, and to acknowledge the importance of sexuality to their patients. If sexual problems are left unresolved, the PwP’s self-esteem decreases and it becomes harder to adjust to changes of body image or bodily functions.
Most PwPs and their partners value the opportunity to talk about sex and intimacy with trusted healthcare professionals. however, many would welcome some guidance on how and when to share their feelings, and would prefer their physician to initiate the discussion. They want to describe how it feels to have a chronic illness, how it has affected them psychologically and physically, and how much their personal life has been affected by the disease.
Talking about sexuality and intimacy enables people to adapt to an ongoing illness that involves body changes, altered sensory patterns and fatigue. By providing this support, healthcare professionals can help couples understand the way Parkinson’s affects a PwPs’s abilities, allowing them both to adjust accordingly.
While every PwP should be given the opportunity to explore issues of intimacy and sexuality, couples should also be encouraged to raise sexual issues with their healthcare professionals and become a driving force for better treatment of sexual dysfunctions. Such a patient-centred approach can lead to significant improvements in quality of life.
Gila Bronner is a certified sex therapist. She is the director of the Sex Therapy Service at the Sexual Medicine Center, part of the Sheba Medical Center in Israel. She can be contacted at firstname.lastname@example.org
Orna Moore is a Parkinson’s disease and movement disorders nurse specialist. She also manages the Memory and Attention Disorders Center’s Department of Neurology in the Tel-Aviv Medical Center, Israel. She can be contacted at email@example.com
This article originally appeared in EPDA Plus.
Why good communication is essential in families affected by Parkinson'sREAD MORE