Motor neurone disease (MND) can change movement, energy, breathing, communication and relationships. It does not take away your right to closeness, pleasure, privacy, boundaries or choice. Read only the sections that feel useful to you.
"You do not have to be having sex to be complete. MND may change how you reach for pleasure, closeness or connection, but those choices are still yours."
Person living with MND
Important
This page provides general information, not individual medical or legal advice. Ask your healthcare team about symptoms, breathing, equipment, pregnancy, medicines or safety. Call Triple Zero (000) if someone is in immediate danger.
Inclusive language
People of every sexual orientation, gender identity, relationship structure, cultural background and age can value intimacy. “Partner” includes a spouse, lover or significant other. “Sex” includes many activities that everyone agrees to. It does not only mean penetrative sex.
About the quotations
The quotations on this page reflect experiences that people may find hard to voice. They come from people with lived experience of MND.
Intimacy and sexuality can support wellbeing and quality of life. MND does not usually affect genital sensation, fertility, arousal, erections or orgasm. However, symptoms, medicines, mood and changing roles can affect how you express your sexuality.
There is no “correct” level of interest in sex. It may become more or less important after diagnosis. As MND progresses, physical contact and time together can still bring comfort, closeness and pleasure.
"Is it ridiculous to care about sex when so much else is happening? No. It is human."
Person living with MND
A conversation worth having
Sex and intimacy may not be raised routinely in clinic. You are allowed to start the conversation. Try:
Can we talk about something personal?
Do other people with MND find that…?
Could we talk about how MND affects intimacy, desire or sexual activity?
Who on the team is comfortable helping with this?
You can ask your GP, neurologist, MND nurse or another member of your healthcare team. You can also ask an accredited psychosexual therapist. If someone is not comfortable discussing this, ask for a referral.
Desire, mood and confidence
Diagnosis can bring grief, anxiety, fear, low mood and changes in body image. These feelings can reduce desire or make it hard to relax. Tiredness can affect you and your partner. Some couples feel closer; others experience tension or miss being spontaneous.
"The person living with MND undergoes severe physical changes, and this makes them very self conscious about their appearance. For me, my husband was intrinsically the same person and this is what I saw when I looked at him; the physical changes didn't change the way I felt about him."
A partner of a person living with MND
Name the worry instead of waiting for the other person to guess. One partner may want to avoid pressure while the other wants reassurance. An honest, low-pressure conversation can help.
Changing roles
When a partner becomes the main carer, the relationship can centre on medicines, personal care, equipment and appointments. Outside help may give you more time and energy to be partners. The aim is to protect the relationship alongside the caring role.
Thinking and behaviour changes
Some people with MND have changes in thinking, judgement, empathy or behaviour. These may affect relationships, consent and safety. Ask the MND team for an assessment if changes are new or worrying. Communication difficulty does not mean a person cannot make decisions. They may need support to understand and express their choice.
Medication and other health factors
MND is not always the cause of sexual changes. Medicines, depression, menopause, heart conditions, diabetes, pain and other health issues can affect sexual function. Ask your GP or pharmacist to review your medicines. Do not stop taking medicine without advice.
Plan around energy and breathing
Choose a time of day when energy and breathing are usually best.
Keep sessions shorter and build in pauses.
Use side-by-side, supported or semi-upright positions to reduce effort and pressure on the chest or abdomen.
Keep prescribed non-invasive ventilation available; some people use it during sexual activity. Ask the respiratory team about your individual situation.
Stop and seek clinical advice if activity causes significant breathlessness, chest pain, faintness or distress.
"Fatigue is very hard to accept, especially when you have been active in the past."
Person living with MND
Positioning and equipment
Pillows, wedges, a supportive chair, an adjustable bed or transfer equipment may improve comfort. An occupational therapist or physiotherapist can advise about positioning, pressure care, transfers and equipment. Do not improvise with a hoist or sling. Follow professional advice and the manufacturer’s instructions.
Bedroom cheat sheet
Breathe first. Pillows are equipment, not decoration. Lubricant can help. Plan around fatigue. Keep communication and any call bell or communication device within reach. There are no medals for doing it the hard way.
Touch, toys and masturbation
MND does not usually remove the sense of touch. Kissing, stroking, massage, oral sex, mutual masturbation and sex toys can give pleasure with less effort. If grip or reach has changed, consider lightweight devices, simple controls, remote controls, straps, sleeves, hands-free mounts or wedges.
Choose body-safe products and follow the manufacturer’s cleaning instructions.
Use lubricant if helpful; use a condom-compatible product when condoms are used.
Choose a flared base for anything used anally.
Avoid improvised electrical alterations or anything that restricts breathing, circulation or a quick change of position.
Ask an occupational therapist about safe grip, switch, mounting and positioning ideas.
"Memorable moment: Being single and needing intimacy and sexual activity. Choosing an aid."
Person living with MND
Feeding tubes, saliva and continence
You can often secure a feeding tube close to your body with clothing or recommended tape. Ask the gastrostomy team how to protect the tube and stoma. Side-lying positions, towels, darker clothing or prescribed treatment may help manage saliva. Keep continence and hygiene supplies nearby.
Communication and consent signals
Before you begin, agree on signals for yes, no, pause, discomfort and “not sure”. Use speech, text, gesture, eye gaze, a switch or another reliable method. Consent must be current and ongoing. It cannot be recorded in advance.
Body mapping
Body mapping, or sensate focus, means exploring touch without making intercourse or orgasm the goal. Notice what feels pleasant, neutral or uncomfortable. Go slowly and communicate. This can reduce pressure and help you discover what works now.
Intimacy is broader than sex. It can include touch, affection, attention, humour, shared memories, companionship and feeling known. If you do not want sexual activity, or it becomes less important, you can still make time for closeness.
Go to bed or rest together, even if you later sleep separately.
Place a single bed beside an adjustable bed so touch remains possible.
Hold hands, cuddle, kiss, wash each other’s hair or massage shoulders.
Listen to music, read aloud, watch a favourite program or share photos.
Dress up, flirt, plan a date at home or revisit a ritual that belongs to the two of you.
Say what is still true: “I love you”, “I’m attracted to you”, or simply “I’m still here”.
"Every night he adjusted his bed so it was exactly the same height as mine. It was so important that we could reach across and touch."
Person living with MND
Different levels of desire
No one owes another person sex. If you want different levels of sexual contact, talk when neither of you feels pressured. Be clear about what is welcome. You might offer another form of closeness. A counsellor or psychosexual therapist can help if the difference causes distress.
Permission to laugh
A cramp, cough, alarm or badly timed feeding-pump beep may interrupt the moment. Laughter does not cancel romance. Sometimes it is what keeps intimacy alive.
Not having a partner does not mean you stop being a sexual person. You may want touch, pleasure, fantasy, dating or masturbation, or none of these. Being single does not define how desirable you are.
"I miss being touched as a person - not examined, washed or repositioned."
Person living with MND
Private intimacy
Private intimacy may include pleasure on your own, erotic stories, music, clothing or affection with someone you trust. It can also mean wanting no touch. Each choice counts.
Privacy may need planning
You may need help to get comfortable, place equipment or set up a device. Keep a call bell or communication aid within reach. Be clear about the help and privacy you want. Support workers must follow professional boundaries and workplace policies. Ask a care coordinator how they can support your privacy.
Dating
You choose when to tell a date about MND and how much to share. Check access, transport, tiredness, communication and support. Consider an exit plan and meet new people in a way that supports your safety. Consent must be willing, clear and ongoing.
When you miss touch
Missing touch is real. Tell someone you trust and ask for the connection you want. This might be a hug, company, conversation, a hand massage or less time alone.
Consent
Consent means freely agreeing to a specific sexual activity. Everyone involved must be able to decide and communicate agreement. You can withdraw consent at any time. Pressure, fear, deception or abuse of power make consent invalid. Seek legal advice about specific situations.
Communication disability is not the same as lack of capacity. Provide time, accessible information and communication support.
Agree on a clear way to say yes, no and stop. Check in throughout.
A person who is asleep, unconscious or unable to make the decision cannot consent.
Paid care workers and health professionals must maintain professional boundaries and cannot provide sexual services as part of care.
If you have experienced sexual violence or abuse
Sexual violence can be recent or in the past. It can involve anyone you know or a stranger. It is not your fault. If you are in immediate danger, call Triple Zero (000). For free, confidential support at any time, call 1800RESPECT on 1800 737 732, text 0458 737 732, or use online chat or video call at 1800respect.org.au.
Safety and privacy
If you think someone is monitoring your device, use a safer device if you can. Ask a trusted service about technology safety. Use an accessible way to communicate when you report harm or ask for support.
Sex work and disability in Australia
Sex-work laws differ between states and territories and can change. Check the current law where a service will take place. Touching Base provides information and referrals to disability-friendly providers. Plan for consent signals, access, communication, sexual health, hygiene, privacy, transport, personal-care boundaries and emotional support.
Current NDIS guidance says sexual services and sex work are not NDIS supports. Do not assume an NDIS plan can pay for them. Ask your NDIS contact or an independent advocate about other supports, therapy or equipment that meet current rules.
"Sometimes I miss being someone’s partner more than I miss sex."
A partner of a person living with MND
You may be both a partner and a carer. You may also organise medicines, equipment and advocacy. Missing your old relationship does not mean you love the person less. Grief and love can exist together.
"Heightened emotion and awareness of feelings for each other. The roles of being the 'protector' and the one cared for are reversed. You have to draw deep on your resilience to manage every role and task that was previously split between you as a couple."
A person living with MND
"We are closer and more open. We have had many difficult conversations and been more vulnerable with each other. We have had conversations that no married couples want to have. We love each other and are close."
A partner of a person living with MND
Protect the couple relationship
Ask what each of you misses and what each of you wants now.
Accept practical support where possible so all energy is not consumed by care.
Create rituals in which neither person is “the patient” or “the carer”.
Reassure each other about attraction without promising sexual activity.
Use clear consent and comfort signals; never rely on guessing.
Seek separate support as well as couple support when needed.
"Knowing the inevitable outcome of an MND diagnosis, brings everything into sharp focus with an awareness of what's important in life: love, family and legacy. Emotions are heightened and one has the opportunity to share one's innermost feelings and leave nothing unsaid. This brings you closer to your partner. From a practical point of view, you have to physically adjust your lovemaking to fit the constraints of your partner's limitations (positions, respiratory capacity, etc) and this is an ever-evolving adjustment as the disease takes its toll. Hospital beds are really practical for this purpose! Having a dark sense of humour helps enormously, as the situation is so bleak, you have to prise moments of joy out of what is an incredibly cruel disease. Laughter--even at the most inappropriate moments--brings intimacy and relief."
A partner of a person living with MND
You still have choices
You are still allowed to be a flirt, spouse, partner or lover. You do not have to become “just the carer”. Caring can be exhausting, and no one should feel pressured into sexual activity. Counselling, respite and carer support can create room for conversation and rest.
If behaviour has changed
Changes in thinking or behaviour can affect empathy, self-control, judgement or sexual behaviour. Contact the MND team promptly. Ask for assessment of risk and decision-making capacity, communication support, and a care plan that protects everyone.
Pregnancy, contraception and menstruation
MND does not usually affect fertility. Use contraception if you do not plan to become pregnant. If menstrual products become hard to change, ask a GP or sexual health clinician about practical aids or ways to reduce bleeding. For pregnancy, seek personal advice and plan for breathing, medicines, genetics, mobility, birth and support afterwards.
Residential aged care and supported living
Australian aged care standards recognise rights to choice, privacy, intimacy, sexual expression and gender expression. Ask how the service supports private time, partner visits, room access, communication, equipment and care boundaries. If a concern is not resolved, contact the Older Persons Advocacy Network (OPAN).
NDIS, My Aged Care and practical assistance
Eligibility and funding depend on current rules, age, goals, disability-related needs and your plan or assessment. Supports may include personal care, help at home, assistive technology, communication, allied health and community activities. Ask your MND Advisor, NDIS contact, support coordinator or aged care assessor to explain options in writing.
Professionals who may help
GP/specialist | Review symptoms, medication, mood, contraception, sexual function and referrals. |
Occupational therapist | Positioning, energy conservation, access, grips, switches and safe equipment. |
Physiotherapist | Movement, comfort, transfers, respiratory positioning and fatigue strategies. |
Speech pathologist | Reliable communication methods, including consent and stop signals. |
Respiratory team | Individual advice about breathlessness and prescribed ventilation. |
Psychologist/counsellor | Adjustment, grief, body image, relationships, trauma and mood. |
Psychosexual therapist | Sexual concerns, desire differences, pain, arousal, adaptation and couple communication. |
MND Advisor | Local MND services, equipment pathways, carer support and service navigation. |
Services, opening hours and funding rules can change. Check each website for current details. This list is a starting point and does not endorse individual providers.
MND Australia and state MND Associations
National MND information and links to state-based MND Advisors, clinics, equipment and support. MND Info Line: 1800 777 175 (business hours).
Healthdirect Australia
Government-funded health information, including sex and disability, sexual health and service-finder information. Health advice line: 1800 022 222.
Relationships Australia
Individual, couple and family counselling and relationship support. National connection line: 1300 364 277.
Society of Australian Sexologists
Directory of accredited psychosexual therapists and sexuality educators.
ASSERT
Australian professional organisation with a directory of accredited sex therapists.
Touching Base
Australian disability-and-sex-work organisation offering information and a referral process for disability-friendly providers. Check local law.
1800RESPECT
Free, confidential 24/7 domestic, family and sexual violence support. Call 1800 737 732; text 0458 737 732; online chat and video call available.
QLife
Free, anonymous LGBTIQ+ peer support and referral. Call 1800 184 527 or webchat, 3 pm-9 pm daily in each state or territory’s local time.
Carer Gateway
Australian Government carer information, counselling, respite and practical support. Call 1800 422 737.
Older Persons Advocacy Network (OPAN)
Independent aged care advocacy, including rights, privacy and intimacy. Aged Care Advocacy Line: 1800 700 600.
National Relay Service
Phone access options for people who are deaf, hard of hearing or have speech disability.
Sources
Information on this web page is based on evidence and recommendations from:
Survey and feedback from MND Australia Lived Experience Network August 2026
UK MND Association factsheet: Relationships and family MND Association of England, Wales and Northern Ireland: Sex and relationships
ALS Canada factsheet Sexuality, Intimacy and ALS
International Alliance of ALS/MND Associations Allied Health Professionals Forum 2021 presentation, “I would rather die from sex than ALS/MND”, Gudjon Sigurdsson, MND Association of Iceland and person living with MND
Healthdirect Australia, Sex and disability. Source
NDIS, What are NDIS supports? Current exclusions include sexual services and sex work. Source
Aged Care Quality and Safety Commission, strengthened Quality Standards: person-centred care, including the right to intimacy and sexual and gender expression. Source
1800RESPECT, sexual violence and disability support information. Source
Touching Base, information for clients with disability. Source