The impact of ALS/MND on sexual intimacy is rarely discussed because of the sensitivity of the topic. Consequently, many patients and their partners feel lonely, discouraged and overwhelmed. Good communication and successful strategizing with your intimate partner and the counsel of your healthcare team can help bring and maintain sexual satisfaction.
Because sexual health and intimacy are important aspects of a person’s wellbeing, understanding how ALS/MND affects sexuality is the first step to alleviate difficulties. Both involuntary and, to a much lesser extent, voluntary muscles are involved in sexual arousal and satisfaction. What this means, essentially, is that most patients will find their sexual sensation and pleasure to be essentially intact.
However, decreased respiratory function makes breathing—and therefore, potentially, sexual activity—more difficult. Non-invasive positive pressure ventilation (NIPPV) can help, though the equipment can also create added difficulty. Additional challenges may be fostered by medications, fatigue, emotional state, muscle spasms or tightness, and communication difficulty. Patients experiencing depression, self-consciousness, anxiety, and compromised body image, may find themselves uninterested.
The impact of ALS/MND on the patient’s partner is an additional factor. Most partners experience their own depression, fear and grief. If the partner is also the main caregiver—which is often the case for couples—overwhelming feelings of exhaustion and resentment over care duties can interfere with sexual feelings.
These issues are not insurmountable. Communication between partners is important and is probably the most significant access to sexual intimacy. Acknowledging and processing sexual difficulty together can help restore emotional intimacy and desire.
Your healthcare team—whether through a neurologist, a primary care physician, or, ideally, a multidisciplinary ALS/MND clinic are also important resources. Professionals are used to discussing the way that ALS/MND impacts sex and can help suggest resources, treatments and strategies. Occupational and/or physical therapists can suggest ways to minimize discomfort, conserve energy and overcome physical barriers. A mental health professional such as a therapist or psychologist can help process the emotional challenges of ALS/MND. In most cases, depressive feelings are highly treatable with therapy, medication or a combination of both.
Because every couple is unique in their preferences and comfort level, developing a fulfilling sex life is also a matter of experimentation. If old techniques are no longer working, try new positions to accommodate your body’s changing capabilities.
Sexuality is not only physical; emotional closeness is just as important an aspect of physical intimacy, one that can enhance your outlook on life and mental health as well as your relationship with your partner.
Suggestions for maintaining a healthy sex life:
- For those in a wheelchair, removable arms can help facilitate greater closeness.
- Plan sexual activity for the time of day when you have the most energy and symptoms are least intrusive. For many patients, this is during the morning.
- Wait at least two hours after eating to have sex, and take any required pain medication 30 minutes before sexual activity.
- Consider either manual self-stimulation or mutual stimulation with a partner. While not everyone is comfortable with this, it can be an intimate alternative to intercourse. Sexual aids and toys can serve a similar purpose.
- Because alcohol depresses the central nervous system, it can diminish sexual function in both men and women. Tobacco can also diminish sexual function. Studies have also shown there is a relationship between tobacco and erectile dysfunction in men; the same is true for marijuana.
- Bathing in warm water prior to sex can improve symptoms of spasticity and relax muscles and joints.
The Motor Neurone Disease Association has created an excellent information sheet, offered here, with additional suggestions in response to concerns about sexual relationships for those with ALS/MND. If you or your partner have any questions or would like to discuss our viewpoints expressed in this article, please email us at [email protected]. ALS Worldwide recommendations should be discussed with your neurologist, physicians and other medical practitioners.