Common Myths About Sex And Neuromuscular Disorders

[QuadMedic]

There are many kinds of disabilities and reasons for wheelchair use. A few disabilities cause some sexual problems; fewer still cause total disruption of sexual function.
However, you may be surprised and dismayed to find out how many people actually believe this myth. Even parents of young people with disabilities are sometimes confused about how the disability affects or doesn't affect sexual function.
Some of the confusion may have come about because of heightened attention to spinal cord injuries in the last few years in movies such as "Born on the Fourth of July" (1989) and "Passion Fish" (1992), and widespread publicity about the effects of multiple sclerosis. Both these conditions differ from the neuromuscular diseases in MDA's program. They both can affect several aspects of the nervous system, including, in some cases, sexual function.
Almost all the disorders in MDA's program, by contrast, involve voluntary muscles or the nerves that control these muscles, and little else. Sexual function is largely the result of an interchange of signals among sensory nerves, autonomic (involuntary) nerves, involuntary muscles (including those that line blood vessels and make them dilate or constrict), and the brain (see "How Sex Works," below). People use their voluntary nerves and muscles while making love to enhance their experience and express affection, but these parts of the body aren't in the mainstream of sexual sensation or response.
To be strictly accurate, there are a few exceptions here. There are voluntary muscles in the pelvic area in both sexes (around the vagina and at the base of the penis) that contract during orgasm (see "How Sex Works," below). They contract in an involuntary way, under the control of the autonomic nervous system, but via signals from the voluntary nerves that normally control them. If these muscles are weakened by muscle disease or disorders of the nerves that control them, the strength of orgasm and ejaculation may be diminished. This type of muscle weakness varies in different disorders and even in people with the same disorder.
It should also be said that some MDA-covered conditions do involve systems other than the voluntary nerves and muscles. Charcot-Marie-Tooth disease and Dejerine-Sottas disease involve sensory nerves, and, theoretically, in a severe case, some sexual sensation may be lost. In Friedreich's ataxia, many parts of the nervous system are affected, with sensation affected in varying degrees. The potential for decreased sexual sensation is present.
Finally, two MDA-covered conditions -- myotonic muscular dystrophy (MMD) and X-linked spinal-bulbar muscular atrophy (Kennedy's disease) -- sometimes show hormonal abnormalities that have the potential to affect sexual function and fertility. In X-linked SBMA, male hormones (androgens) aren't transported into cells in the usual way. This condition, which only affects males, can affect fertility and, possibly, sexual function. In myotonic dystrophy, there are likewise hormonal abnormalities, in this case in both sexes. Fertility is sometimes affected. Men sometimes have atrophy of the testicles, while women sometimes have menstrual irregularities and miscarriages. People with myotonic dystrophy rarely report difficulties with sexual function.
So, although there are a few exceptions, in most neuromuscular conditions, most of the time, sexual function is not impaired.

Myth Number Two:
Gradual debilitation and loss of interest in sex are inevitable if you have a neuromuscular disease.
Reality:
Everybody gets tired, especially after a day's work in middle age, and most people aren't as sexually active at 50 as they were at 30. But, losing all interest and consistently not feeling up to having sex doesn't have to be tolerated, even if you have a neuromuscular disorder.
Planning and timing, without being too hung up on the idea of spontaneity, is the key. "You have to be a problem solver," says Mitch Tepper, who is pursuing a doctorate in human sexuality education at the University of Pennsylvania. Tepper, who injured his spinal cord as a young man and has since married and fathered a child, likes to remind students that most people plan their lovemaking, and that "the Friday night sex you had in high school or college was one of the most planned events in history." Contrary to popular belief and TV soap operas, he says, "There isn't all that much sex on the kitchen table happening out there. Some -- but not much."
Even if you end up making love less frequently, identify your ideal conditions and time your lovemaking to coincide with them. "Ask yourself, when am I most rested? When do I have the most energy?" Tepper recommends. "Maybe you should decide on some special time, even if it's not as frequent as you'd like. Timing should take into account times when you're not stressed or fatigued."
People with neuromuscular disorders are more likely to develop respiratory and cardiac problems, although they're common in the general population, too. Sexual intercourse generally uses about as much energy as walking three miles an hour, and that can be a strain for people with weakened respiratory or cardiac muscles. Some positions require less energy than others, so experiment. Many people find a side-lying position easier, and some recommend a waterbed. Keep in mind that not all sex has to be intercourse, and not all intercourse has to end in orgasm.
Of course, respiratory and cardiac problems should be evaluated and treated by a doctor, for the sake of your sex life -- and your life.
Weakness of the respiratory muscles, especially the diaphragm, leads to too much carbon dioxide and not enough oxygen in the bloodstream and brain. There are many symptoms of respiratory insufficiency, which is sometimes misdiagnosed as depression. Common symptoms include trouble sleeping at night but trouble staying awake during the day, early morning headaches, difficulty concentrating and remembering, loss of appetite, and a general sense of lethargy and disinterest in things.
One solution is part-time mechanical ventilation through a mask. (There are several types of portable and removable devices.) In any case, the problem needs attention from your doctor.
Heart problems are also common in neuromuscular disease, and your MDA clinic doctor is probably checking for these. Loss of your usual energy, difficulty breathing with exertion or chest pain with exertion should be brought promptly to your doctor's attention. You may need a referral to a cardiologist. There are some cardiac problems where high-energy sex is ill-advised, but many heart problems can be successfully treated with medication.
And, speaking of medications, some can have unfortunate effects on your sex life. Some drugs prescribed to lower blood pressure and, somewhat ironically, to treat depression, also cause impotence in men. (Reports of their effects on sexual function in women are remarkably lacking.) Blood pressure drugs in the beta blocker family, such as propranolol (Inderal) are common causes of erection problems. Antidepressants in the fluoxetine (Prozac) family, the serotonin reuptake inhibitors, can also cause impotence, as can an older class of antidepressants, the so-called tricyclic drugs. Amitriptyline (Elavil) is an example of one of these.
Of course, drugs that cause nausea, headache or depression aren't likely to enhance your enjoyment in the bedroom either.
If you think you may be taking a drug that's affecting your sex life, check one of the many laymen's guides to drugs available in libraries and bookstores. Check the side effects of medications you're on, and then review them with your doctor. Don't stop taking medications on your own, but you may be able to safely switch to a less troublesome product with your doctor's guidance. If not, you may be able to time sexual activity to coincide with the trough, rather than the peak, of drug side effects.
Of course, general health has a lot to do with interest in sex for everyone, so eat a well-balanced diet, exercise in whatever way you can (with your doctor's guidance), and be sure you're getting enough rest.
According to Dr. Irwin Goldstein, a well-known urologist and author of the book The Potent Male, the same factors that lead to clogging of cardiac arteries in later life -- a diet high in fat and cholesterol and low in fiber, little exercise, and smoking -- also lead to clogging of the pelvic and genital arteries and to sexual dysfunction, at least in men.
Of course, stress, depression and conflicts in relationships can cause sexual difficulties for anyone, male or female, able-bodied or disabled. If you suspect this kind of problem, try to analyze where the stress is in your life and make constructive changes. Don't hesitate to seek mental health counseling to distinguish among stress, depression, grief or loss and physical problems. Sorting things out alone can be overwhelming.

Myth Number Five:
A sexual relationship is the only way to overcome loneliness.
Reality:
It isn't.
Psychotherapist David K. Reynolds calls this "sleeping sickness" in his book Playing Ball on Running Water, saying people who believe this often sleep with other people in a vain attempt to ward off loneliness and absorb magical powers from their sex partners.
A fulfilling, connected life can be found through non-sexual friendships, communal living arrangements, satisfying work or spiritual faith, as well as through an intimate, sexual relationship. (For a look at modern celibacy through the eyes of a married woman poet who takes up residence in a Benedictine monastery, see Kathleen Norris' The Cloister Walk.)
A decision to lead a non-sexual life is a personal one and a valid one. Make sure it's your choice, however, and not a restriction based on neglected, correctable health problems or acceptance of society's prejudices.

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How Sex Works
Sexual sensation and function, although it seems simple enough, is actually the result of complex interactions among the sensory nerves, autonomic ("automatic") nerves and muscles, the brain, and to a lesser extent, the voluntary nerves and muscles.
Arousal
Sexual arousal -- what we usually think of as the start of the sex act -- can begin at many points in the system. Often, it begins with touch. Sensory nerve cells (receptors) anywhere on the body, but especially in the erogenous zones like the genitals or nipples, send signals to the brain and spinal cord that indicate that sex is a possibility.
Alternatively, arousal can begin with a sight, sound, smell or even a thought. In this case, the brain starts the process of activating other parts of the nervous system.
In the muscular dystrophies, motor neuron disorders and inflammatory myopathies, sensation and the thinking parts of the brain are generally completely normal, and so is sexual arousal.
The Readiness Response
After the initial arousal event, one part of the autonomic nervous system, called the parasympathetic system, goes into action. The cells of the parasympathetic nervous system, located in the spinal cord, send muscle-relaxing chemicals down their fibers. These chemicals dilate blood vessels in the genital region in both sexes, causing erection of the penis in men and the clitoris in women. The blood vessel dilation is actually caused by relaxation of muscles that line the vessels. This type of muscle, called smooth muscle, isn't the same as voluntary muscle, and isn't ordinarily under voluntary control. (The intestines, uterus and other organs are also partly made of smooth muscle.)
In women, the parasympathetic nervous system chemicals also cause the vaginal walls to secrete a lubricating substance.
All these events can be thought of as getting the body ready for intercourse.
In the muscular dystrophies, motor neuron disorders and inflammatory myopathies, the parasympathetic nervous system and these "readiness" functions are generally completely intact.
Monitoring By The Brain
Meanwhile, the brain is getting signals that arousal and readiness are occurring. At any point, it can either enhance or inhibit the process by the thoughts and images it receives and processes. Thoughts like "I shouldn't be doing this" can have a negative effect and begin reversing arousal. Thoughts like "I really like that perfume" can do the opposite.
The brain is not affected in most MDA-covered conditions.
Orgasm
After a while (sometimes no more than a few minutes), arousal changes. The other division of the autonomic nervous system, known as the sympathetic system, gains control over the parasympathetic system, and begins to set in motion the process of orgasm.
The sympathetic system also has cells in the spinal cord, but they're in a different place and they behave slightly differently. The cells of the sympathetic system normally cause an animal (or person) to tense up to fight or flee from an attacker. They normally increase blood pressure, send blood to the skeletal muscles and stop digestion. Their function in the sex act is a specialized one, however.
Here, the sympathetic nerve fibers carry chemicals that cause contractions in structures in the pelvic area in men, moving semen from these areas into the penis. In women, these same fibers stimulate the uterus and vagina to contract. The muscles that are contracting are mostly involuntary (smooth) muscles.
Usually, within minutes after sympathetic activity begins, muscles in the pelvic and genital area in both sexes contract rhythmically for several seconds. These contractions, which are extremely pleasurable in both sexes, move semen from inside the penis to outside the body in men. Their function in women (other than pleasure) isn't clear. Some of the muscles that contract in this phase are voluntary muscles, under the control of voluntary nerves. These voluntary nerves and muscles are triggered by the autonomic nervous system rather than by conscious intention, however, in a process that resembles shivering. (When the body is very cold, the autonomic nervous system activates voluntary nerves and muscles that increase temperature by causing movement.)
In people with muscular dystrophy, motor neuron disorders or any other condition in which voluntary muscles are severely weakened, the strength of orgasm could potentially be lessened. This doesn't necessarily occur.
Here again, the brain can interrupt or enhance the experience at any point. Anxiety, depression, dislike of one's partner, or unpleasant physical sensations can all be processed by the brain to stop sexual activity or inhibit orgasm. Positive thoughts, pleasant sights, sounds and smells, and warm emotional feelings enhance the sex act in humans.
A spinal cord injury (SCI) affects a man's sexuality both physically and psychologically. The type and level of injury both can play a role on the impact that the injury has on a man's sexuality. After injury, men may face changes in relationships, sexual activity, and their ability to biologically father children. Men can also experience emotional changes that can affect sexuality. All of these issues involve both the man with SCI and his partner. Therefore, it is very important to understand and confront these issues as a part of the overall adjustment to life after injury.

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Physical Changes
Men normally have two types of erections. The first is a psychogenic erection, which results from sexual thoughts or seeing or hearing something stimulating or arousing. The brain sends these messages through the nerves of the spinal cord that exit at the T10-L2 levels. The messages are then relayed to the penis, resulting in an erection. For men with spinal cord injury, the ability to have a psychogenic erection depends on the level and extent of injury. Generally, men with an incomplete injury at a low level are more likely to have psychogenic erections than men with high level, incomplete injury. Men with complete injuries are less likely to experience psychogenic erections.
The second type of erection is a reflex erection. This occurs when there is direct physical contact to the penis or other erotic areas such as the ears, nipples or neck. A reflex erection is involuntary and can occur without sexual or stimulating thoughts. The nerves that control a man's ability to have a reflex erection are located in the sacral segments (S2-S4) of the spinal cord. Most men with spinal cord injury are able to have a reflex erection with physical stimulation if the S2-S4 pathway is not damaged.
Many men with SCI are capable of having an erection. However, the erection may not be hard enough or last long enough for sexual activity. This condition is called Erectile Dysfunction (ED). There are various treatments and products available for treating ED but men with SCI may have special concerns or problems with their use. It is important to see a doctor or urologist for accurate information on the various treatments and products as they relate to men with SCI.
Because each spinal cord injury is different, each man's physical response is different. Men with SCI need to rely on their own observations and experiences to fully understand the changes in their sexual functioning.
Sexual Aids & Options for Men with SCI
The most recent breakthrough in treating ED is the use of the medication Viagra® (sildenafil), a pill taken by mouth. The Food and Drug Administration (FDA) approved Viagra in 1998 for use in the treatment of erectile dysfunction. It quickly drew the interest of men because it is a noninvasive technique and can be self-administered. Research studies show that Viagra, taken as required (not more than once daily), significantly improves the quality of erections and satisfaction with sex life in men with ED due to spinal cord injury between T6 and L51. Men who have low or high blood pressure or vascular disease should not take Viagra. Some medications can not be taken with Viagra so all medications should be reviewed with the prescribing physician.
Penile injection therapy is another treatment option. It involves injecting a single drug or a combination of drugs into the side of the penis. This produces a hard erection that can last for one to two hours. These drugs must be used exactly as prescribed by the physician. If not used correctly, the result could be a prolonged erection, called priapism. When priapism occurs, the blood fails to drain from the penis. This can damage the penile tissue and be extremely painful. Other risks from the injection are bruising, scarring or infection of the penis. This method is not recommended for use more than once a week. A penile injection is a difficult option for a man with limited hand function due to spinal cord injury. Therefore, he must have assistance in getting the injection.
Medicated Urethral System Erection (MUSE), or transurethral therapy, is a relatively new treatment option. A medicated pellet is placed into the urethra where it is absorbed into the surrounding tissue. This causes the blood vessels to relax and allows blood to fill the penis. The drug, alprostadil, is the same as used in penile injection therapy. Reported side effects include a risk of infection, a burning sensation and decreased blood pressure and fainting.
The vacuum pump is a mechanical option for producing an erection that, for most men, is sufficient for intercourse. The penis is placed in a vacuum cylinder and air is pumped out of the cylinder causing blood to be drawn into the erectile tissues. The erection is maintained by placing a constriction ring around the base of the penis. This ring also prevents urinary leakage that some men with SCI experience. It is important to remove the ring after intercourse to avoid prolong pressure and the risk of sores. There are several models of vacuum pumps available. A battery-operated model is an option for those with limited hand function. Other models require good hand function to press the pump against the skin to create the necessary vacuum.
Surgical implantation is often the last treatment option for ED because it requires a permanent penile prosthesis. The surgical procedure involves inserting an implant directly into the erectile tissues to obtain an erection. Three types of implants are available: semi-rigid or malleable rods, fully inflatable devices, and self-contained unit implants. There are risks of mechanical breakdown and the danger that the implant could push out through the skin. Men with SCI usually do not have good sensation in the genital area, so there may be no signs of pain to indicate that the implant is breaking through the skin. All surgical implants also carry a high risk of infection. If an infection develops, the prosthesis may need to be removed. Penile implants are the most expensive option and some health insurance plans do not cover the costs.
Talk to a doctor before any treatment. Men with spinal cord injury who are experiencing ED should have a thorough physical exam by a urologist familiar with SCI before using any medications or assistive devices. Level of injury, possible side-effects, and other medical conditions need to be considered when deciding which treatment option is best. With all treatments, men with SCI must be watchful for signs of Autonomic Dysreflexia (AD), a life-threatening condition. Signs of AD include flushing in the face, headaches, nasal congestion and/or changes in vision.

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Fertility
Men with SCI also experience a change in their ability to biologically father a child. The major factor interfering with a man's fertility is primarily due to an inability to ejaculate as a result of damage to the spinal cord. In fact, 90% of men with SCI are not able to ejaculate during intercourse; this is called anejaculation(2). Another problem men with SCI may experience is retrograde ejaculation. This occurs when semen does not leave the urethra but travels back up the tube and is deposited in the bladder.
One myth is that the the number of sperm that a man produces decreases the longer the time after injury. There is no evidence that this occurs and should not be a concern for men who want to biologically father a child(3). However, the motility (movement) of the sperm is of concern. The average motility rate among men with SCI is considerably lower than for the average man without SCI. Recent research shows the average motility rate of sperm in semen samples from men with SCI is 20% compared to 70% in able-bodied men(2).
Options are available to assist men with spinal cord injury improve their ability to father children. Men who are interested in fathering a child should get medical advice and treatment options from a fertility specialist experienced in issues of spinal cord injury. The fertility specialist needs to be aware of methods that can improve sperm quality in men with SCI, as well as complications that can occur, such as autonomic dysreflexia.
Penile vibratory stimulation (PVS) can be used to achieve an erection, but its main purpose is to produce an ejaculate for those who wish to become fathers. A variety of vibrators/massagers are available for this purpose. Some are specifically designed with the output power required to induce ejaculation in spinal cord injured men. It is important to consult a physician before using a vibrator. One danger of using a vibrator is it could cause swollen or inflamed skin. If the male does not have feeling, the vibrator must be used very carefully to avoid any bruising, bleeding or ulceration.
Rectal Probe Electroejaculation (RPE) is an option if PVS is not successful. RPE is when a doctor inserts an electrical stimulation probe into the rectum, and the controlled electrical stimulation produces an ejaculation. When sperm cannot be retrieved using PVS or RPE, minor surgery can be performed to remove sperm from the testicle. Once sperm are collected they can be used in artificial insemination.

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Emotional Changes
Men with SCI can experience many emotional changes that can influence sexual functioning. Men are often concerned with maintaining their ability to perform sexually as well as how their injury might affect their relationship with a partner. Men who do not have a partner at the time of injury may also be concerned with how to meet and attract a partner.
A man can continue both a romantic and an intimate relationship with a partner after a spinal cord injury. However, good communication with his partner is essential. Many men with spinal cord injury become angry, depressed, and/or uncertain about relationships after the injury. It is important for both partners to understand the physical changes that occur after injury, but it is equally important to talk about how each person feels about the issues. Without good communication, these emotions can be inappropriately directed at each other, which can result in more negative feelings. The couple can talk about, explore and experiment with different ways to be romantic and intimate. Together, they can then discover what is sexually stimulating and fulfilling for of them.
A professional counselor can help in processing feelings that are common after injury. This may include working through feelings of anxiety over establishing or continuing a healthy relationship after a spinal cord injury. A counselor also can work with couples on healthy ways to communicate their needs and feelings.

[kur1in]

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