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.1,3,4 For some people sex becomes more important following diagnosis, for others it becomes less important. Close physical contact, touch and time together becomes more important as a person’s condition deteriorates.2,3,4
People living with MND and health care professionals working in multidisciplinary MND clinics have reported the need for resources to facilitate discussion, increase knowledge and to address the gaps in information available regarding intimacy and sexuality.2 Despite this, the impact of MND on intimacy and sexuality is an area not often discussed or broached by general practitioners (GP) or health professionals during clinic visits and information resources are rarely provided.1,3 This leaves people living with MND and their partners unsure about where to find information and who to talk with about these issues.
Understanding how living with MND affects expressions of sexuality and intimacy is an important first step in addressing problems that may arise.3 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.1,3 However, people living with MND and their partners report experiencing many barriers to physical expressions of intimacy in their sexual and non-sexual relationships.2,3 Physical, emotional, psychosocial and cognitive-behavioural features of MND, as well as a lack of social support and use of assistive technology, may indirectly affect intimacy and sexuality.1,2,3,4 Increasing dependency and the consequent need for partners to take on a caring role can also create barriers.3
Weakness and reduced function of the mouth, hands, arms and legs can impact on sex and the ability to express love and intimacy. Fatigue is also frequently a problem for people living with MND and has a consequent impact.3 Other physical symptoms of MND such as difficulty breathing, pain, cramps and excess saliva, as well as some medications, percutaneous endoscopic gastrostomy (PEG) and non-invasive ventilation (NIV), can present barriers to maintaining intimacy and a sexual relationship.3 Speech difficulties may impact the ability to communicate needs, desires, love and affection.
Sense of touch is not affected by MND and you and your partner may find that touch and hugs play an increasingly important role if sexual activity becomes difficult.2,3
Physical changes can impact your body image and how you feel about yourself. This may lead to a lack of confidence, fear of rejection and a fear of not being able to satisfy your partner which can all impact desire, arousal and interest in sex.1,3 Some people may experience anxiety and depression in response to a diagnosis of MND which can also have an impact on sex and relationships.1
As the person with MND becomes more dependent and their partner takes on more of the caring role the balance of the relationship may change. For some couples this can lead to increased tension and decreased sexual interest.1 For others, facing the challenges together strengthens their relationship. Partners of people living with MND may also be experiencing feelings of grief, fear, stress, fatigue and depression which may affect their sexual desire.
Research has found that over 50% of people with MND can experience reduced abilities in thinking and behavior.5 Mostly these changes are mild, however a small proportion (5-15%) of people will show more significant changes.6 Changes may include apathy (reduced motivation and less interest in previously enjoyed activities), rigidity (resistance to changing routine or attempting new activities), disinhibition (difficulties in controlling behaviour or making social judgments) and/or emotional lability (uncontrolled laughing or crying). These changes may impact relationships and a person’s interest in sex, or their ability to express intimacy and communicate their needs.1
As MND progresses things will continue to change and it is important to try maintain open communication with your partner and/or loved ones about the impact of these changes and to seek help as required.
Research highlights the need for healthcare professionals working at MND clinics to give people living with MND and their partners the opportunity to talk about intimacy and sexuality, if they wish to, as part of the assessment process.1,2,3 Some professionals, however, will find it difficult to raise and talk about this subject and may instead invite the person with MND and/or their partner to telephone or email with any concerns they may have.2,3 Either approach opens the door for people with MND and/or their partner to talk about the impact of MND on their sexuality and relationships.
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.3
The quality of pre-existing relationships will influence each couple’s ability to talk about the impact of MND on their relationship and adapt to the many barriers MND poses for their coupled relationship.
Intimacy and sexuality are 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.
Depending on the stage of the disease you may need to change how you do things to maintain intimacy and sex. It may take some time to adjust and feel comfortable with these changes and it is therefore important to try to:
MND may affect speech, however sex is often a time when people can express themselves without having to talk. 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.
Not everyone requires help or advice when they experience barriers to physical and sexual intimacy.3 It is important to be aware that some of the physical, emotional, psychosocial and cognitive-behavioural features of MND can be managed to minimise impact on intimacy and sexuality. Try and discuss any worries you may have with someone from your healthcare team who you trust and feel comfortable talking to.2 You can do this as a couple or separately if needed.2 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:
Physiotherapists and occupational therapists can help with managing fatigue and weakness including advising on the use of assistive technology and best positions to make sex less tiring for the person with MND. They can also help to ensure the introduction of assistive technologies such as electric beds and pressure mattresses takes into account the need to maintain intimacy.4
If you have difficulties with breathing a physiotherapist or specialist respiratory nurse or doctor may be able to advise on the best sexual position to minimise the impact on breathing. They can also provide information and advice on the use of ventilatory support such as a BiPap machine during sex.1 If you have a PEG or feeding tube you may feel more confident if it is taped to your skin or covered with a close fitting top during sex.3
Non-physical expressions of intimacy may be impacted if facial muscles and speech are affected. Speech pathologists and occupational therapists will be able to provide advice about communication aids, voice banking and recording software you could use to maintain communication and tell loved ones how you feel about them.
Your GP, neurologist or palliative care physician can help with medications to manage pain, spasticity and excess saliva. Medications to manage excess saliva may cause vaginal dryness but lubricants available from chemists or pharmacies may help with this.
Ask your GP about any changes to sexual function as this may not be caused by MND1 and remember that life events other than MND may impact intimacy and sexuality, for example menopause and other health issues or medications.3
Your GP, neurologist or palliative care physician can help with medications to manage depression, anxiety and emotional lability. If the person with MND and/or their partner is experiencing emotional or psychological barriers to intimacy and sex then a referral to a social worker or psychologist for counselling may be of assistance. Talking with your healthcare team about strategies and medications that may help with these symptoms is important.
If the person with MND is experiencing cognitive and behaviour changes then they should be referred to a neuropsychologist who can help with strategies to manage these changes. This may be particularly useful for partners to help with understanding how MND may be impacting behaviour - see MND Australia Fact Sheet Cognitive and behavioural change.
It is important to seek help and support with personal care and household tasks. People with MND under the age of 65 are entitled to receive supports through the NDIS. Older people living with MND may be able to access similar support through an aged care Home Care Package.
Taking time out and maintaining interests is also important for the person living with MND and their partner. Talk with your NDIS support coordinator or MND Association Advisor about support and respite options available.
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 here
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 - see also the links below.
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 – see link to booklet below.
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. For women with MND pregnancy can pose a number of risks and it is therefore very important to talk to your neurologist and specialist doctors about the implications of pregnancy and childbirth to assist with decision making.7
For more information and referral for support contact: