Intimacy and MND

Physical intimacy in a relationship is an important touchstone for many couples, and it is not just about sex. This also encompasses activities that involve physical touch like holding hands, massages, kissing and cuddling and ensuring that MND doesn’t stop physical intimacy in your relationship. Issues such as intimacy and sexuality are often not discussed and this can have implications for many personal relationships. Lots of people feel embarrassed to ask their consultant or GP the questions they have and therefore many people will enquire with the MND nurses about how it may affect them as the condition progresses. People can feel very reassured to know that MND has no direct link with fertility, libido, sexual arousal, or the ability to have an erection or an orgasm.

However, there are many factors that can affect a sexual relationship such as fatigue. The person with MND can experience fatigue associated with the condition and their partner can experience fatigue as they find they are taking on all the daily routine tasks that were once shared and also caring for someone can be exhausting. Flexibility is very important and finding a time that both people are rested can be an advantage.

Many people fear they may become breathless during sex and possibly this could be exacerbated by pressure on the chest or abdomen. It is possible to use NIV during sex and if the person would prefer not to, we advise them to keep it close at hand to wear it afterwards.

It is also possible to have sexual relations when you have a PEG. This is a common question we would get when the decision is being made on whether to opt for the insertion of a PEG or RIG. It may be beneficial to tape the PEG to the skin prior to having sex and possibly wearing a fitted top to avoid it being dislodged.

If someone’s mobility or movement is affected by MND it may mean that their partner has to take a more physical role in lovemaking such as a change of positions or activities such as massage. Even if someone has limited movement, their sense of touch is unaffected and they can still enjoy the comfort and pleasure of touch.

Communication is imperative for a satisfactory sex life with MND. The changes in someone’s body as the disease progresses can be a source of huge distress and a person may feel less attractive and therefore feel their partner no longer finds them desirable. It is extremely important that these feelings are discussed and recognised. Telling your partner how you feel about them is very important in maintaining intimacy. If a partner values the closeness and intimacy of kissing and cuddling ensure the other partner knows. They may now also value it more than ever.

For further help and advice on care or intimacy please reach out to your MND Nurse.