Will I still be able to work? How will I take care of my family? What is my long-term prognosis? These are common and pressing questions after a diagnosis of a neurologic condition such as amyotrophic lateral sclerosis (ALS), Parkinson's disease, or multiple sclerosis (MS), or after experiencing a stroke, a spinal cord injury, or a traumatic brain injury. It may not be until months later, after you've settled into your new day-to-day life, that you ask yourself, “How will my condition affect me sexually?” or, “Will I ever have intimate relationships again?”
These are normal, legitimate questions that experts say shouldn't be discounted or ignored. “Sexuality and intimacy are often put on hold after a diagnosis. And that's sad, because they are so nurturing,” says Debbie Schlossberg, a patient services coordinator with the greater New York chapter of the ALS Association. “Both people in the partnership need intimacy in order to thrive and care for one another.”
Certain realities such as erectile dysfunction, numbness, and loss of feeling can't be glossed over, but they don't have to be permanent obstacles to intimacy, says Schlossberg. “In the face of so much loss, you want to maintain those things in your life that feed and sustain you,” she says. “Intimacy is such an important source of connection and meaning and expression for people. It shouldn't be abandoned.”
And, of course, not everyone does abandon intimacy, says researcher Liza Berdychevsky, PhD, professor of recreation, sport, and tourism at the University of Illinois who studies sexual health and well-being. In a study of discussions of sexual topics in 14 online communities geared toward adults age 50 and older published in 2015 in the Journal of Leisure Research, Dr. Berdychevsky found that although health conditions, including neurologic disorders, sometimes constrained older adults' physical abilities, those who were willing to reappraise and adapt their sexual activities were able to continue to enjoy fulfilling sex lives.
“Not everyone perceives a stroke or a condition like Parkinson's disease as the end of their sexuality,” Dr. Berdychevsky says. “Many people in these online communities repeatedly said, ‘We are sexual until we drop!’”
Dr. Berdychevsky, Schlossberg, and other experts offer advice on what to expect physically and emotionally after a diagnosis, and how to work around limitations so you can maintain, reclaim, or reinvent your sex life.
WHAT TO EXPECT
PROBLEMS WITH AROUSAL
Some neurologic conditions affect a man's ability to achieve an erection or a woman's ability to become aroused. “In Parkinson's disease, for example, the autonomic nervous system is often affected, which can lead to erectile dysfunction and delayed ejaculation in men and reduced vaginal lubrication in women,” says Jon Stoessl, MD, FAAN, Canada Research Chair in Parkinson's Disease and professor and head of neurology at the Pacific Parkinson's Research Centre and National Parkinson Foundation Center of Excellence at the University of British Columbia and Vancouver Coastal Health in Vancouver, Canada.
People with MS often have similar sexual symptoms due to reduced genital sensation or other neurologic impairments. And a study published in Urology in 2008 found that for men who have had a stroke erectile function was decreased by almost half compared to men who had not had a stroke. Most of the men had ejaculation problems during intercourse, but the most common reason they weren't having sex was a lack of desire.
OTHER SYMPTOMS THAT REDUCE DESIRE
In other neurologic conditions, sexual function isn't directly affected. Surprisingly, ALS is one of those. “ALS affects voluntary muscle movement, and since sexual arousal is an involuntary response, sexual function essentially remains intact,” says Schlossberg. “But people with ALS may not be able to move their limbs, which is a big factor in sexual intimacy. They may also have trouble swallowing, which can make something as simple and essential as a kiss difficult.”
Parkinson's disease, stroke, spinal cord injury, spinal muscular atrophy, and a variety of other neurologic conditions involve tremor, paralysis, rigidity, impaired coordination, or other symptoms that can make it difficult to express yourself sexually, says Mitchell Tepper, PhD, MPH, founder of the Sexual Health Network and an expert on sexuality, disability, and medical conditions, who is himself a spinal cord injury survivor. “Many chronic neurologic diseases and conditions also involve pain, and when you're in pain, it's hard to feel sexy.”
Bowel and bladder problems commonly associated with many neurologic conditions can also make sex more anxiety-inducing than exciting. “Multiple sclerosis, for example, often produces incontinence or bowel problems,” says Gila Bronner, MPH, MSW, a certified sex therapist and director of the Sex Therapy Service in the Sexual Medicine Center at Sheba Medical Center in Israel. “The fear of having an accident in the middle of a sexual encounter will of course reduce desire or inhibit arousal.”
Many people with neurologic conditions experience anxiety or depression, both of which can dampen sexual enthusiasm. Your disease may also make you feel unattractive or not worthy of love or sex. If your spouse or romantic partner is now your caretaker, that can also complicate your relationship, says Schlossberg. “The tendency is to put couplehood on the back burner because you have this growing list of caregiver tasks to attend to,” she says.
HOW TO REGROUP
Most people aren't comfortable talking about sex—sometimes, even with their intimate partners. It's a personal and sensitive topic, so much so that therapists like Bronner and Schlossberg say they are usually the ones who bring it up when talking with patients and their partners—much to the relief of their patients. “It's liberating,” Schlossberg says. “People will say things like ‘Yeah, I miss it. I miss you.’ They're not aware of the extent to which they've ignored it. Just expressing to each other that they crave that touch and intimacy does so much.”
Schlossberg and Bronner recommend partners talk to each other about how the disease or injury has affected each of them. They suggest asking questions such as, “What are you looking for?” “How can we satisfy each other?” and “What new things can we try?” It's important to create an environment of trust and safety during these conversations. That same sense of safety and trust is important during sex, too. If your partner has a neurologic condition, he needs to trust that he won't be judged or rejected if his condition affects his sexual performance, says Dr. Tepper. “We all want to feel like we're good lovers and can please our partner, and many of us are insecure about our ability to do that. Make sure your partner knows that you still find her attractive, that she still pleases you.”
Coping with a significant neurologic condition can often get in the way of the simple day-to-day things you used to do as a couple—and not just in the bedroom. What did you enjoy doing together before this happened? Whatever you can still do, make time for those activities, whether it's going to a movie, walking by the ocean, or listening to music together. “It's so important to have fun and connect on those levels,” Bronner says.
FOCUS ON PLEASURE
Instead of focusing on “having sex,” think about giving yourself and your partner pleasure, and all the ways that can happen. “We have a lot more sexual response than just what's going on between our legs,” says Dr. Tepper. Products like vaginal lubricants and medications for erectile dysfunction can be helpful, but it's just as important to make that emotional connection with your partner.
He recommends abandoning sexual scripts you may have relied on before. “Go back to the beginning. What did you find attractive about your partner? What did you like to do? Think about the times when you were just petting, touching, and kissing, having erotic pleasure without intercourse.”
Practice first with yourself, he advises. Touch yourself with no purpose of achieving orgasm or even arousal. Just notice what you feel and what you don't feel, and where. If erotic videos or books used to arouse you, try those, and notice if you still feel your pulse rate increase or your face flush even if you don't have a reaction in your genitals. Then try flirting with your partner. You don't have to be able to move much of your body to flirt with your eyes and your words. From there, try touching your partner, again with no goal in mind. Holding hands can be intimate; your breath on your partner's neck can be erotic, he says.
Mundane caregiving tasks such as bathing or stretching exercises can be made more intimate with a little imagination, says Dr. Tepper. Add candles and long, lingering strokes of the washcloth or sponge during a bath. Incorporate kisses or tender words during massages or range-of-motion exercises.
TIME IT RIGHT
If there are times of day when you or your partner will have more energy, or when medications allow for more flexibility or fine motor control or less pain, consider initiating intimate contact then. “Don't save intimacy for the evening if by then you or your partner are understandably worn out,” says Schlossberg. “Use your day differently.”
ASK YOUR DOCTOR FOR HELP
Talk to your physician about helpful resources, including counseling for depression and anxiety, physical therapy to help improve mobility, positioning, and strength, and sexual therapy. You can find a sex therapist or counselor through the American Association of Sexuality Educators, Counselors, and Therapists at http://aasect.org. “This isn't embarrassing,” Bronner says. “It's something a lot of people are dealing with. Take advantage of the therapists and interventions that may be available.”
DON'T KEEP SCORE
Avoid comparing your current sex life to what you had in the past. It's not productive, Bronner says. “You've had to make changes in other parts of your life, and you need to be flexible here in the same way that you must when dealing with eating, walking, or taking a shower. If, for example, you can't cut meat because your hand trembles, that doesn't mean you stop eating. If you don't get exactly the sexual menu that you're used to, you have to learn to compromise and try another recipe. Stop counting the number of orgasms. Focus instead on giving pleasure and getting pleasure, giving love and getting love. These are the essentials that we need in life.”