Sexuality

Sexuality-A Post Injury Issue That Must Be Addressed "Moderate to severe traumatic brain injury alters sexual function and desire, mostly for the worse," says Nathan Zasler, MD, director of Brain Injury Rehabilitation Services, Department of Rehabilitation Medicine, Medical College of Virginia. "Some people become hypersexual but most usually become hyposexual. In the long run, we commonly find that sexuality is negatively affected." Sexual problems can be divided into two areas: neurophysiologic and psychobehavioral. Neurophysiologic problems occur when the brain itself is damaged, causing either genital dysfunction (eg. erectile difficulties, decreased vaginal lubrication) as well as non-genital dysfunction (eg. paralysis, loss of sensation, dysphasia, spasticity, etc). The psychobehavioral problems that may affect the expression of sexuality include body image changes, behavioral disinhibition, social isolation, and cognitive deficits, among others. Zasler, a physiatrist noted for his work on brain injury and sexuality, believes various factors, which may cause or exacerbate sexual dysfunction, need to be taken into consideration, including neuroanatomic, neurophysical, hormonal, and psychobehavioral aspects. However, he notes, physicians should first determine whether other medical conditions (thyroid, vascular disease, diabetes, impotence) or medications may be causing the sexual dysfunction. Depending on the problem, treatment options do exist. For example, a person suffering from depression may be helped by pharmacological agents such as anti-depressants and other drugs. Implants, external devices, or injections may be used for impotence management. Desensitization training and drugs may help stop premature ejaculation. Counseling about alternative sexual positions may minimize the effects of physical or sensory deficits. Nerve blocks may decrease spasticity problems. And, pharmacologic agents, including hormones, may improve libido. Zasler adds, however, that there may not be a solution for every problem. "Due to his injury, one patient could not control his mouth or lips. His wife told me, "It's not that his penis doesn't work, it's that he can't hold me, kiss me, and caress me like he used to. Physicians must try to identify the problem and determine what they can and can't do for the patient. There are no magic answers." Sexual Acting Out Maureen Neistadt, MS, OTR/L, is on the faculty of the Boston School of Occupational Therapy at Tufts University and works mainly with patients in residential facilities. In general, she encounters "sexual acting out" behaviors that result from a combination of frontal lobe disinhibition and the frustration caused by lack of social outlets. Neistadt notes that in a residential setting the lack of privacy magnifies the problem. "There may only be a curtain around the toilet, with everyone traipsing through. If cognitive problems exist, it may be confusing to the person to understand why it is okay to be naked in the morning during an exam but not to expose himself during therapy in the afternoon." Staff members, she notes, must be aware of the importance of privacy, especially if masturbation is the person's only sexual release. "I teach my students to always knock first, even if the patient is comatose. Get in the habit of respecting each person's privacy. Let the person know you are invading his or her space." Neistadt recommends establishing clear limits so the patient knows that behavior such as inappropriate touching, exposing oneself, and verbal lewdness will not be tolerated. "Let the individual know that it makes you uncomfortable. 'I didn't give you permission to touch me. That makes me angry.' Patients tend to respect those limits. More severe problems may need behavior management, but if the person is generally together and the staff is clear about limits and respectful of the client's privacy, no lewd behavior should occur." She notes that these behaviors occur more often during earlier stages of recovery and tend to decrease over time. This is due to compensation within the brain as well as recognition by the person of acceptable limits concerning appropriate behavior. Neistadt adds, "For people living in a facility, there is less opportunity to socialize. For those at home, the problems are different. They may be able to meet others but may need social skills training to interact successfully." Dave Collins, a brain injury survivor from Wisconsin, says after his injury he was "pretty goofy for a while," grabbing his wife and making inappropriate gestures. "I think my head injury caused some of it but I also believe I was trying to get attention. My wife spoke to a physiatrist and he told her to ignore the behavior rather than get upset. Eventually, it subsided." Collins was 26 in 1975 when his car hit a utility pole, leaving him with brain injuries and paralyzed from a broken neck. Before his injury, Collins was "into this macho thing" but his view of sex has since changed. "Society is hung up on penetration-the national score card. Sex is really two consenting people exchanging pleasure. Sexuality is how we give and receive affection. I get a lot of satisfaction giving pleasure to Valerie. I have a healthy libido and I'd call my sex life intense, gratifying and warm. We communicate more now than before. There is a basis for intimacy. We are sharing souls and back rubs, it is all encompassing." Organic or Functional? Zasler, who has written articles and researched the subject of sexuality and brain injury, says, "Studies have shown a surprising number of brain injured males with a high incidence of sexual dysfunction, but we have not clarified whether it is due to organic or functional problems." A difficult and sensitive subject, brain injury and sexuality raise more questions than answers. Unfortunately, professional resources have been very limited; few physicians or therapists are trained in both areas. Recently however, steps have been taken to raise awareness of this specialty. The Journal of Head Trauma Rehabilitation devoted one of its 1990 issues entirely to the subject and the American Congress of Rehabilitation Medicine has established a national sexuality and disability task force for professionals. More and more research is underway. One recent study, conducted by Zasler and colleague Jeffrey Kreutzer, PhD, focused on the psychosocial and behavioral issues of sexuality. Their article in Brain Injury summarizes findings of a study of 21 men with brain injuries and identifies problems such as decreased libido (57%), erectile dysfunction (57%), decreased frequency of intercourse (62%), and orgasmic dysfunction (33%). A majority of the men reported feelings of decreased self-esteem (67%), decreased sex appeal (52%), and increased depression (71%). This study, however, found no correlation between self-esteem and sexual function, leading Zasler and Kreutzer to hypothesize that most problems may be organic. Time for Straight Talk One issue that worries occupational therapist Maureen Neistadt is that many of the patients she counsels are confused about sexual matters. "They have some basic misconceptions about sex, disease, and contraception. Some people assume they are infertile due to the injury. Some think that if they have a child, their offspring will have cognitive difficulties, too. "There may have been a lack of education about sex before the injury and if memory difficulties occur, the topic is even more confusing. " Fifteen years postinjury, Dave Collins, MEd, is now a counselor. He talks openly about his own difficulties and works to help others overcome theirs. He and his wife, Valerie, conduct seminars on sexuality and have appeared on national TV talk shows. Collins leads discussion groups several times a week, talking about things like self-esteem, communication, and sexuality. "People want to discuss it; it is a real concern. But it is important that the person answering the questions is comfortable with the subject." To illustrate his point, Collins mentions a movie that Valerie watched at the suggestion of a physiatrist. Once the movie began, the doctor left the room; no one was there to answer any questions she might have had. Collins also remembers a class he and Valerie attended at the University of Illinois. "The class was called Living to the Best of Your Ability. It provided a safe environment where we could ask questions and say things with no fear of attack-things we couldn't say to our own families. "It helped us a lot. We'd get a baby sitter and it was like we were going out on a date. We were able to get to know each other again…I'm optimistic that we can be more open about discussing the topic." Discussion will also cause controversy. Zasler believes that along with more research and information, we have to look at larger social issues as well. "As professionals, we tend to shy away from issues dealing with sexuality. But we need to deal with concerns such as sex education, safe sex, intimacy in an inpatient setting, minors and parental control. "Social skills training is important but some people may not ever be sexually active. That calls into question subjects like the use of sexual surrogates, assisted masturbation, use of pornography, telephone sex lines. This may be unacceptable for some people, but we need to grapple with these issues as well."