Intimacy and sexuality are important to quality of life and emotional well-being and remain important to people living with motor neurone disease (MND) and their partners, regardless of age and level of disability.
Close physical contact, touch and time together often becomes more important as a person’s condition deteriorates but it is very individual how diagnosis impacts the importance placed on couple’s intimate lives.
Despite this, the impact of MND on intimacy and sexuality is an area not often discussed during clinic visits leaving people living with MND and their partners unsure about where to find information and who to talk with about these issues if they wish to.
It may be reassuring to know that MND itself does not directly impact sensation, sexual function, arousal, fertility or the ability to have an erection or orgasm.
The physical symptoms and emotional impact of MND can impact the ability to physically express love and intimacy. Fatigue can also be an issue for the person with MND and their partner.
For some people with MND, having a partner who takes on more of the caring role changes the balance of the relationship and affects desire.
Speech difficulties may impact the ability to communicate needs, desires, love affection. You may already have a special way of communicating with your partner using signs and signals such as blowing a kiss, but you may need to try new ways of communicating and signalling how you feel.
Whatever you try, a willingness to laugh together while you experiment can help to maintain intimacy.
As MND progresses things will continue to change and it is important to try maintain open communication with your partner and to seek help as required.
If the subject is not raised at clinic visits, try to ask for help if you and/or your partner are struggling with the impact MND is having on intimacy and sexuality. Your GP, MND Association Advisor, nurse, palliative or allied health care professional will be able to talk through your concerns and refer you to the right person.
Not all barriers can be overcome but it is possible, with support, to adapt and make changes to maintain intimacy.
Intimacy and sexuality is also important for single people living with MND who may find this area of their wellbeing overlooked by their health care team. It is important for single people to also seek advice and support as needed.
Not everyone requires help or advice when they experience barriers to physical and sexual intimacy.
Try and discuss any worries you may have with someone from your healthcare team who you trust and feel comfortable talking to. They will be able to talk through your concerns and, if needed, refer you to the appropriate health professional.
Conversations about sex and intimacy are not always easy to initiate and can feel awkward. If your healthcare team does not start the conversation, you might like to ask:
NDIS Participants with MND who want to continue dating or wish to seek a sexual partner may be able to have funds included through their NDIS plan to assist with maintaining social and community engagement. Information regarding how the NDIS funds sex therapy and family planning is available at Plan Partners
The NDIA is yet to develop a sexuality policy to encompass reasonable and necessary support for sexual expression through NDIS funding. Talk to your NDIS support coordinator about how NDIS funds can be used and the various state and territory laws regarding payment for sex.
If you, or your partner, are unable to be cared for at home and move to residential aged care facility it is important to ask questions about how the facility can support you to maintain intimacy and express sexuality.
If menstruation and changing sanitary products becomes difficult a GP may be able to prescribe a long acting contraceptive to reduce or stop periods.
MND does not affect fertility and therefore contraception should continue to be used if a pregnancy is not planned.
If a couple wish to start or add to their family, there will be many factors to consider and pregnancy can pose a number of risks. Talk to your neurologist and specialist doctors about the implications of pregnancy and childbirth to assist decision making.