ALS & Your Sex Life

by Yvonne K. Fulbright, Ph.D., M.S.Ed.

Looking for information on maintaining sexual intimacy amidst an ALS (amyotrophic lateral sclerosis) diagnosis can be like looking for a needle in a haystack. Research shows that your doctors don’t want to talk about it. But it’s your sex life, and you want answers. What problems might you encounter? And how do you deal with them?

ALS, also known as Lou Gehrig’s disease, is an incurable condition where motor neurons in the brain and spinal cord, slowly die. These nerve cells control one’s muscles and, hence, movements, with ALS patients gradually becoming more immobile as the neurons stop sending signals to the muscles. Over time, the individual has trouble with muscle twitching and weakness, fatigue, stiffness, spasticity, and the use of one’s fingers and hands in completing tasks. Problems with walking, talking, eating, swallowing and breathing can result in illness, injury, and eventually death.

While ALS doesn’t affect the autonomic nervous system, and thus doesn’t impact sexual functioning directly, its difficulties can make for sexual problems, like impaired sexual arousal, orgasmic disorders, sexual aversion, and decreased sexual desire. Research conducted at the Munich University Hospital in Germany found that sexual problems increased from 19% of patients prior to ALS to 62% after the disease’s onset. The percentage of partners reporting sexual problems also increased from 20% prior to diagnosis to 75% with ALS a reality. Problems reported included increased decreased libido and partner and own passivity. These were mainly due to physical weakness and body image changes due to ALS.

Issues such as these can, however, also be attributed to any loss of positive body image or self-esteem, especially with altered appearance and immobility, the individual experiences. Add to this the fear, anxiety, depression, psychological distress, exhaustion, and grief experienced by an ALS patient and his or her partner, and loss of sexual interest is common for either partner. When sex happens, it can be frustrating, painful and embarrassing.

With sexuality such an important and problematic issue for ALS patients and their partners, you need to make every effort to nurture your sex life. The following are efforts you can employ:

    • Pursue physical and occupational therapy, as well as speech therapy, for staying strong and independent for as long as you can. Such also helps you to avoid problems associated with ALS.
    • Talk to your doctor about how your medications, e.g., baclofen, are affecting your sex life, especially your libido. Is there a dosage that can provide you with comfort and relief of symptoms without greatly impacting your sexual functioning?
    • Empty your bladder and bowels ahead of a sex session for zero disruptions.
    • Seek to relax your muscles and joints prior to sex since arousal can bring on spasms. Spasms may be minimized in bathing beforehand, stretching and massaging, taking extra medicine (after consulting with your doctor), and the relaxing effects of sexual touch. You may want to ice sore areas as well.
    • Seek out sexual interactions during the time of day when you have the most energy and your health problems are minimized. This strategy should also include sexual exchanges at least two hours after eating and 30 minutes after taking pain medications.
    • Avoid alcohol and tobacco products, as these only have a negative effect.
    • Explore different types of touch. Try, for example, incorporating spasms into sex play, placing a spastic hand against a lover’s groin when they occur.
    • Incorporate sexual enhancement products, like lubricant or a vibrator with hand straps, in making efforts easier.
    • Tune into your senses during lovemaking, as your sensory nerves have not been affected by ALS. Experiment with ways to enhance all of your senses, e.g., arousing scents.
    • Get counseling or join a support group to talk about your feelings and to garner suggestions on how to maintain sexual intimacy from those who know your situation well.
    • Stay open-minded and try to be positive about the sexual discovery and the potential to be realized.

When it comes to getting into sexual positions, a water bed is recommended in relieving joint pressure and weight issues. A wheelchair with removable arms is an option as well. No matter where or how you try to have intercourse, explore different positions. For a man who has trouble straightening his legs, for example, sex is best had while he’s on his back, his partner on top, leaning against his legs. For a person with a knee or hip contracture, spooning, with a pillow between his or her legs, is most comfortable.

Your relationship and sexual satisfaction are major quality of life factors. It’s important to remember that sexual intimacy can be a source of support, comfort and pleasure, as well as a way to feel “normal.” So seek to maintain your sex life in any way possible, all the while communicating with your partner about your likes and dislikes, as well as what’s going on with your sex life. The only way to deal with issues is to first put them out there.

"He has Van Gogh's ear for music." Billy Wilder


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