Life on Wheels (70 page)

Books and videos. For private stimulation, to share with a partner, or for instructive purposes.

You can make simple modifications to these products—such as a Velcro strap for a vibrator or dildo—to accommodate limited grip strength that might otherwise be needed to use them.

Pay attention to the setting for romance. Set soft lights or burn candles. Choose music that will enhance the mood. Wear sexy clothes that are fun to take off of each other or to caress each other through. Use perfumes or incense (we are biologically built to respond to sensual aromas), or surround yourselves with flowers. Remove items that could detract from romance, like prescription bottles at the bedside. Pay attention to the setting and have fun with romance.

In a scene from the film
The Waterdance
, a recently injured quadriplegic man is with his female lover for the first time since his accident. During their lovemaking, his catheter slips, wetting the bed. His reaction is embarrassment and frustration while she attempts to reassure him that it is not a problem. But the moment has been lost. They were caught by surprise in these new emotional dynamics of their sexuality.

Certainly loss of bladder control can interrupt the romance of the moment, but the couple in the film was facing the shock of their first encounter with the issue. When a couple develops a true intimate bond, their bodily fluids need not be repelling. We all deal with body fluids— urine, semen, menstrual blood. Experienced, committed couples are not troubled by such slips. They could even laugh it off—or, if there is stress in their relationship, perhaps it could bring up some conflict. Again, the disability is not the issue; it’s about the nature of relationship and the kinds of stressors that any couple must manage.

A brief spasm of urination or movement of the bowels might occur during particular motions. Some of the same reflexes triggered during sex also control bladder and bowel activity. Choose techniques or positions that are less likely to exert pressure on these areas. Go easy on liquid intake and empty yourself fully before lovemaking, and time such activities earlier in your lovemaking before the bladder begins to fill again.

Then keep a towel handy just in case. A regular bowel management program will help prevent surprises.

An indwelling catheter—which remains in place continuously—can be bent over and worn inside of a condom during intercourse, taking care to not exert any tension on it. Use of an internal catheter increases the risk of urinary tract infection, which can be passed on to a sexual partner. Emptying the bladder after intercourse will help prevent infections.

Women with indwelling catheters may be able to leave them in during intercourse, depending on the size of their vagina and the positions used. Some have found that a catheter is able to remain in place more easily when the man enters the woman from behind.

Men who wear a condom-like external catheter need to remove it before genital contact, cleaning the area to remove traces of adhesive and urine. Some men develop a sensitivity to latex and experience drying of the skin of the penis or open sores, particularly on the head, which is very delicate. A high commitment to cleanliness, the use of creams, or switching to a silicone type of catheter helps manage this problem. It is unwise to have intercourse while the skin of the penis is irritated or broken down. A normal prophylactic condom might be used at such times.

A partner or spouse who aids you in bowel and bladder care may come to have a difficult time seeing you in sexual terms. If personal-assistance duties are placing stress on your sexual relationship, take some time to explore ways to shift the responsibility from your partner by doing more yourself, if possible, or perhaps by employing a greater degree of outside attendant assistance. Perhaps there are portions of your support that you had not thought you could perform or that were unknown to your original therapist. There might be products available to aid in grip and dexterity that you were not aware of or had only thought of for other purposes, like feeding. Be creative and open minded, and possibilities will increase.

Although there are many options for satisfying sexual expression, it is the desire of most men to be able to reliably participate in intercourse. It is psychologically gratifying for a man to perform intercourse. As much as their partner might not begrudge a limitation on erection, most partners enjoy this form of sexual contact. More to the point, it is a lovely experience to share.

How erection occurs and is maintained is complex and depends on the physiology of the specific disability as well as psychological factors. Men with a disability experience either psychogenic or reflexogenic erections or some degree of both. More spinal cord impairments occur above the area of the spine at which psychogenic erectile function is processed in the hypogastric nerve plexus between T10 and L2. This means that fewer men experience erection psychogenically, since their erotic thoughts cannot stimulate that area of the spine, but their reflexogenic processes remain intact. In either case, surface sensation is not necessary to accomplish erection.

But loss of penile sensation might limit the ability to maintain an erection if a man’s expectation is that the sensation of intercourse is what stimulates erection. Loss of sensation (not always the case in a disabled man) might lead to doubts about the ability to maintain the erection, especially in positions in which the man cannot see his penis during intercourse. To the degree that a psychogenic process is involved, such mental distractions will affect the ability to maintain an erection.

This is not much different from problems of erectile dysfunction that many ablebodied men experience, in which the cause can be either psychological or physical. Thinking, “Can I keep it up?” is almost a guarantee of not being able to do so. It is simply a case of performance anxiety. The ability to clear the mind during sexual intimacy is as important a psychological skill for everybody as it is for disabled. In any case, our desires ebb and flow with our body chemistry and the events of our lives at the time. No one is always ready for sex.

Psychogenic erection can rely on very subtle forms of touch and contact. Being subtle, these sensations might be overridden by bearing a partner’s body weight or by body contact that pulls on hairs. A helpful strategy is to shift your attention to more subtle sensations that men with later disabilities might never have noticed prior to disability or might never have thought of as being sensual. These sensations, when allowed to rise above the noise, are in fact very powerful and gratifying. Sexuality educator Mitch Tepper notes:

Partners will need to work out techniques so that the disabled partner can still have the sensations that are pleasurable and maintain erection. Choose positions carefully, and emphasize the kinds of touch that are arousing.

An adolescent, injured at the stage of his peak period of testosterone levels (the male hormone) and his early sexual experimentation might imagine that he would have to maintain the degree of erectile rigidity he experienced as a teenager in order to be able to enter his partner. The inability to do so is thought of as a severe failure. According to this 36-year-old with spinal cord paraplegia:

The “stuff” method is a way to share intercourse with a lesser erection. The flaccid penis is pushed into the vagina; this is more easily achieved in certain positions. Squeezing the base of the penis will direct more blood into the shaft and head, increasing erection. Keep pressure at the base—or use an erection ring designed for that purpose—to prolong erection and keep your movement gentle.

Always ask your doctor about the implications of any treatment or elective surgery you might be considering. You may well choose to surrender some sexual function in favor of reduced pain or some other benefit in order to extend your independence. Just be fully informed.

There are a number of methods that reliably produce erections. Most men and their partners need to experiment to find the best solution. The invasive nature of some of these approaches is another reason to explore other sexual options rather than be overly reliant on penile intercourse.

Vacuum pumps have been used for erectile dysfunction over the last 20 years. A plastic tube with either a motorized or manual pump creates a vacuum that draws blood into the penis. An erection ring fits at the base of the penis, holding in blood to maintain the erection. The health of the skin on and around the penis needs special attention from regular users of the pump, particularly those who use catheters. Check regularly for irritation. Sexuality researcher Dr. Marca Sipski of the Kessler Institute for Rehabilitation in New Jersey says that:

Prostaglandin—marketed under the name Caverject®—is a drug that is injected into the corpora cavernosa, the area of the penis that fills with blood and therefore produces erection. Men are trained in making the injections themselves prior to sex. The drug causes blood to flow to the corpora cavernosa, and the resulting pressure constricts the area, which allows the erection to last longer. Erection occurs in about 20 minutes and lasts generally no more than two hours, depending on the dosage. One needs to take great care with cleanliness and must avoid veins in the penis that could bleed excessively if violated by the needle.

There is a danger of overstimulation. Priapism is a condition in which blood held too long in the penis can begin to clot. In general, an erection that lasts more than four hours is worthy of concern. This is a serious enough event to require immediate medical attention. An overdose or the excessive use of injections can cause permanent damage.

The oral drugs Viagra, Cialis, and Levitra are relatively new treatments for erectile dysfunction. Viagra has some known potential side effects, such as transiently changing one’s vision, it can pose health risks when taken with medications containing nitroglycerin, too high a dose can dangerously elevate the heart rate, it doesn’t work for all men, it is expensive, and some insurers or HMOs do not pay for the drug.

Nevertheless, Dr. Michelle Gittler of Schwab Rehabilitation Hospital in Chicago says:

There are also permanent, surgical solutions. Penile implants are available in various forms. One is a solid silicone rod that provides an immovable, semi-erect solution. Another is a flexible silicone rod so the penis can be adjusted downward for comfort away from sexual activity. A self-contained implant will become firm when it is squeezed or bent and return to a flaccid state after a period of time. Lastly, an inflatable prostheses—the most expensive option—allows manual control of the degree of erection as needed. There is some risk that the pump—also implanted under the skin— may leak or that pressure sores could form inside the penis.

Since these are surgical alternatives, there is always some risk from the invasive nature of their installation and the presence of a foreign object inside of the body. Discuss these options in detail with your urologist, and take the time to speak with others who have experienced them. Mitch Tepper comments on the dangers of implants:

A couple should discuss how these solutions will affect their sense of intimacy. Will the partner feel that the artificial erection—whether drug induced or an implant—has less to do with how appealing she is? On the other hand, a greater sense of security about their erection can allow men to focus more on the sensuality of the moment. The range of positions can also expand as there is less need to prevent the overriding sensations mentioned earlier, which can counteract erection. And, best of all, artificial erections last long enough that you can participate in intercourse for as long as you choose.

Disabled women need protection from pregnancy as much as ablebodied women do, though some special considerations need to be made, especially for those who have limited sensations in the genital area. Find a gynecologist familiar with your disability who can advise you on the fine points.

Menstruation is usually interrupted in women after a spinal disease or injury but usually returns within six months as the body recovers from its shock. Women who are close to menopause may find that their menses will not start again.

The pill is the most effective birth control method, but there is an increased risk for disabled women of thrombophlebitis—blood clotting as a result of poor circulation in the legs from not walking. Women who experience spasticity are less exposed to this problem, since muscle contractions assist in the movement of blood. Your gynecologist can perform a test for susceptibility to clotting.

Some professionals feel that the risk of clotting plus the inability to recognize problems because of limited sensation are cause enough for disabled women not to use the pill. Guidelines developed by Planned Parenthood of New York City specifically recommend against them. Others say that, with today’s lower dosages, the risks are minimal and that, if clotting has not occurred within six months after disability, it is unlikely to occur with the pill. You must also consider interaction with other medications you might take.