Flowers Sexuality and Gender Issues in PD

Sex. We first explore our bodies while we're still infants, soon after we discover those wondrous things called hands. By the time we're five, we've found out we'll get a strong reaction from our parents when we use words like kaka and pee pee , and by the time we're eight or ten we've pretty much discarded both the idea of Santa Claus and the belief that we were delivered by a stork.

In adolescence, we're confronted with media images and peer whisperings that guide us toward our own (and usually very secret) entries into conscious sexual lives. Our bodies change: Boys have night-time ejaculations they cannot understand; girls sprout the beginnings of their breasts and start to menstruate. Both spend hours in front of mirrors or comparing progress with their friends.

Suddenly we're adults. Suddenly we're having sex instead of giggling about it. But for most of us, early childhood memories - while perhaps consciously forgotten - still hold sway. We remember Dad's or Mom's discomfort when we saw them naked. We REMEMBER that "if you play with it, it's gonna fall off." We REMEMBER "nice girls don't do that." It's all there and it all shapes our adult psyche and how we deal with sex.

Gender

Male and female roles were pretty confusing, too. While things are now changing, when we grew up big boys didn't cry. Little girls played with dolls and grew up to be good mommies. If a boy didn't enjoy sports, he was a nerd or a sissy. Girls were encouraged in literature and art; boys were expected to do better in science and in math. Women took care of the house and kids; men were the breadwinners and took care of cars and bills.

Most of us would like to think we've rejected those roles in favor of more modern thinking - and probably some of us have, almost. Others haven't, and some of us still catch ourselves feeling guilty if we don't fulfill what we learned, so many years ago, was expected of us as men or women in our own marriages and homes.

With all of this, it should come as no surprise that most of us are quite defensive about gender expectations and that sexual dysfunction is very hard for most of us to talk about.

Sexual Dysfunction

Sexual dysfunction is a pretty heavy term for something most of us experience at least occasionally during our lives. It happens when we're tired or when we're worried; it happens when we're working too hard or when we're angry with our spouse or kids or boss. During stressful times, we may simply not be interested in sex!

True sexual dysfunction, however, is a bit more than that. Sexual dysfunction means simply that one or both partners is experiencing unrewarding or inadequate sexual function and is unable to achieve sexual satisfaction on a continuing basis. While all of us are somewhat dysfunctional at times, it becomes a problem when the frustrations occur more often than the satisfactions and thus promote the danger of a self-perpetuating fear.

Why is our sexual relationship so important? We're sexual beings; sexual sharing fulfills one of our most basic biological needs. Gender expectations, too, play a role in making our sexual function so important, especially for the male, for whom sexuality is closely tied to manhood. For the male, performance becomes an intra-psychic issue and the inability to perform diminishes self-respect.

More than the gender-identity issues, however, are simple human needs for intimacy and touch, for the release of tension, for feelings of belonging and of pleasure. Intimacy, however does not equate with sexual stimulation. Not everyone needs sex. For many, an intimate experience, fulfilling needs for touch and pleasure, can be a wonderful massage or simply holding hands. Libido (sexual desire) is not required in order to live a full and joyful life.

The couple who is no longer having sexual intercourse must not allow themselves to be railroaded into believing that they need sex if they don't. The first discussion any couple who thinks they may be sexually dsyfunctional should have must be open and honest enough to discover what each partner really wants and needs from their intimate relationship.

The Impact of PD On Sexuality and Gender Identity

There's very little information on the impact of Parkinson's on sexuality, possibly because of the erroneous belief that Parkinson's effects people only after the age of fifty and our culture's tendency to negate the importance of sex to older folks. However, age may not be the only issue here. According to a recent study, only 6% of all physicians discuss disease impact on sexuality with their patients. Parkinsonians may not be alone in this information vacuum.

We do know, however, that Parkinson's affects the autonomic nervous system and that, doubtless, impacts on our response to sexual stimulation. Parkinson's, too, challenges us physically while it limits our agility and general ability to move. Parkinson's can effect our capacity to emote and can bring skin changes. It can create incontinence and bowel problems. Disuse atrophy - Use It Or Lose It - is very real. Drugs (MAO-B inhibitors, anticholinergics, antihistamines, anti-depressants, sedatives and some diuretics), of which the Parkinson's patient must take many, can affect sexual functioning and diminish the libido. Parkinson's changes our personal sense of who we are.

A balanced drug regime can reduce the symptoms of Parkinson's disease and improve agility and movement. The need for daily exercise can't be over-emphasized. Anything we do to keep our general health and maintain our muscle tone will provide greater movement, overall, and affect our sexual appetite and our agility in bed. Silk sheets can improve our ability to move. Simply being naked together creates intimacy that can nurture the desire for sex and is in itself rewarding.

Planning sexual activities around the Parkinsonian's "on" time is, for some, distasteful; these couples mourn the loss of spontaneity such planning means. However ... is spontaneity necessary for rewarding sex? Of course not! Remember when you were first together? One or the other of you probably planned the seduction of your partner fairly carefully - at least sometimes. Ladies, you'd take great care with your toiletries, select a sexy (though not too obviously sexy) dress, plan a wonderful menu if your guy was there for dinner, and create a romantic atmosphere complete with music and candlelight.

And men. Remember how carefully you once selected the restaurant where you'd take your fiance or bride? Wasn't there a time when you considered that just a little wine might help? Didn't you whisper "sweet nothings" (possibly suggestive?) in her ear when you took her dancing?

You can still do all those things in preparation...just add one more: Consider timing. Timing, to make sure your seduction coincides with your Parkinson's partner's "on" time.

We seem too, after we've been married a few years, to forget how to flirt. Flirting can be exchanging silly banter. It can be a provocative new dress. Flirting, in fact, is holding your partner's gaze for more than 3 or 4 seconds. Flirting, you may recall, is fun!

The wild passion of early stage love affairs doesn't ever last very long: 2-3 years is pretty normal. A person needs a passion for life. With that - and a little effort - passion for your mate is fairly easy to renew.

Sex can't be fireworks and earthquakes all the time. But it CAN always be the best, most intimate form of caring. The romance can continue; it can grow. The brain is our very sexiest organ. It's the way we think that guides our sexual response.

Romance: those candlelit dinners as soft music played. Dancing afterwards, at home (or out) for the intimacy aroused. Parkinson's patients, interestingly, can often still dance beautifully even after walking is impaired. Romance; ain't it grand? Bring her (or him!) a rose. Come home with a selection of exotic oils and give your partner a sensual body rub. Mail your partner an I love you store-bought card. Rent a romantic movie and watch it...holding hands.

Remember, too, that in your sexual, intimate relationship with your partner... anything goes as long as it's okay with you both. That will be hard for some of us to accept, but the anything goes approach is honest, healthy and very helpful. Open your mind to this one - and get help (psychological or sexual counseling) if you need it. The missionary (one partner on top) position can become difficult at times. Experiment! Make it fun and don't be afraid of being silly. Laughter is wonderful during sex. Stimulation can be quite intense - using your hand or fingers to bring your partner to climax. Oral-genital stimulation can create earth-shaking orgasms. Masturbating is allowed - and not only is it allowed, it is encouraged. Some partners find great satisfaction in watching the other masturbate or in masturbating together. Use vibrators AND the special attachments. Use a dildo. Fantasize! You're not being disloyal if you imagine it's really a sex-god or goddess in your bed. You're not depraved if you fantasize that you're actually doing it in the middle of Time's Square.

Male Issues

First of all, while young-onset Parkinson's patients are younger than the normal Parkinson's population, we're still aging. Most of us are in our forties or fifties. And, for men, that means there are some things that are age-related that simply must be faced.

The production of testosterone gradually diminishes after the age of about twenty-five and by the age of forty, can be experienced in the reduced size and firmness of the testicles. Once you've passed the age of fifty, achieving erection takes two to three times longer than it took ten or fifteen years ago, and full erection may well not be attained until just before you climax. After about fifty, too, men experience rapid penile detumescence - men lose their erections more quickly after completing orgasm and intercourse. Ejaculation changes, too, from the two-stage, well-differentiated process it once was to a single stage, the expulsion of seminal fluid that accompanies climax in men. In other words, some of the sexual changes you're experiencing have nothing to do with PD. ALL men (and women!) over a certain age experience sexual challenges that they didn't face before.

Incontinence

However, Parkinson's itself does impact sexuality in men. Incontinence, interrupted urine flow, urine retention, control of sphincter muscles and constipation can all result from the disease itself and/or from the anti-Parkinson's medications that you take. It must always be remembered, though, that these problems can have other causes; you can't just assume they're all due to PD.

There are a few things you can do to combat some of these problems on your own. Don't wait until you feel the urge to urinate to go to the bathroom, especially if you're contemplating sex. Just go. Empty your bladder as completely as you can. Drink 8-10 glasses of water or juice daily; drink grapefruit juice and coffee - both have their diuretic properties as well. Talk to your neurologist about taking water pills in the morning. If you're troubled with constipation, eat lots of roughage (fiber), including fruit, vegetables and bran with meals. Eating only fruit after 7 each night can help, as well.

Perhaps more importantly, see your urologist. Having a professional evaluation to discover the cause of incontinence is essential. Comprehensive assessment of incontinence includes your health history, a drug inventory, a physical and neurological exam, laboratory tests and diagnostic tests such as a cystoscopy (an examination of the urinary bladder by inserting a cytoscope through the urethra) and urinalysis (an analysis of urine by physical, chemical and/or microscopic means to detect abnormalities and infections). Treatment without comprehensive testing can make problems worse.

Impotence

Impotence is the inability to achieve or sustain an erection for satisfying intercourse. Erection is the state of rigidity achieved when the penis becomes enlarged as its tissues fill with blood, usually as the result of sexual arousal, but also occuring normally during sleep and as a result of physical stimulation. Erection of the penis enables the penis to enter the vagina for sexual intercourse.

The simple aging process, once again, can be the culprit if you're having trouble achieving an erection. When we hear about arteriosclerosis, we most often hear of it in conjunction with the arteries of the heart or the brain. However, arteriosclerosis can narrow penile arteries as well, and if the flow of blood is blocked or hampered, achieving an erection can be very difficult. Once again, your urologist can determine if this problem has occurred and can, in many cases, suggest treatment.

Parkinson's, again, effects the autonomic nervous system. That means that the messages necessary for erection may not be transmitted from your brain to the penis and erection may not occur. Drugs, too, can effect the ability to achieve erection and to maintain it. Penile nerve responses can be blocked by disease or drugs. You may experience venus leakage - in which the blood (necessary to achieve and sustain erection) drains back out of the penis prematurely, causing the erection to be lost. Venus leakage can often be corrected surgically. Hormone deficiencies, in aging men (men in their forties, fifties and beyond), are believed to account for ten percent of all impotence and can usually be corrected by hormone pills or injections. If impotence is the side effect of a particular medication, your physician may be able to substitute another medication for the trouble-maker and thus remove the problem. For the man who has had a thorough medical evaluation and has discovered that no typical treatment can correct his impotence, several alternatives exist which should be discussed with the patient's urologist.

The ErecAid System

The ErecAid System is a noninvasive product which can successfully manage organic, psychogenic, mixed and unknown causes of impotence. It is a manual technique designed to duplicate the natural process of erection, and like other bodily aids (eye glasses, hearing aids, dentures, etc.), it improves the quality of life by supplementing a lost natural function. It is important that the user of the system have motivation to be sexually active, have a willing partner, have normal penile vascular blood flow, have no injury or trauma that might prevent erection, and be willing to commit the time and effort necessary to learn how to use the system.

Pharmacologic Erection Program

A penile erection results when stimulation of the nerve of the penis releases certain substances called neurotransmitters. In the erection tissue, these substances initiate both an increase in the arterial blood inflow and a decrease in blood drain. The net effect is an accumulation of blood and thus an increase in pressure within the erectile tissue. When the pressure is sufficiently increased the penis is rigid enough for successful intercourse.

Researchers from several countries have recently demonstrated that a penile erection rigid enough for sexual intercourse may result following the injection of a small amount of drugs into the erectile tissue of the penis. This new treatment for male impotence, called Pharmacologic Erection, has already enabled numerous patients to resume sexual intercourse without the need for a penile prosthetic device. The drug used is a combination of papaverine hydrochloride and phentolamine mesylate, which, injected into the erectile tissue, mimic the action of natural neurotransmitters and cause both an increase in arterial blood inflow and a decrease in blood drain. Thus, injection of these agents allows a rigid penile erection to occur.

The rigidity and duration of the erection may be dependent upon the dose of the drug injected. This pharmacologic erection will usually take approximately 15 minutes to develop and will typically last between one and two hours. And may be improved in duration and rigidity with sexual stimulation. The drugs usually do not interfere with either ejaculation or orgasm.

Penile Prosthesis/Penile Implant

A penile implant is a device that is surgically placed into a man's body and is designed to help him get an erection. This option is a very successful method of managing impotence. It involves the surgical insertion of two cylinders into the corporal bodies of the penis, resulting in a stiffening. Many thousands of men have been helped to return to full, healthy sex lives following the rather simple operation involved in penile implant.

There are two basic types of penile implants: Inflatable implants and flexible rod implants. Both enable the impotent man to have an erection satisfactory for sexual intercourse. The primary difference between the two types is that the flexible rods produce a permanently hard penis while the inflatable types produce a controlled, more natural erection. There are four varieties of penile implants currently available:

For many men a penile implant offers the only solution for impotence. A man who is considering a penile implant operation should be emotionally stable and believe that sex is a vital aspect of his life. He should not have any injury or trauma that would hamper sexual functioning. Age itself generally is not a factor. Successful implants have been performed on men in their teens and in their eighties.

Female Issues

Men and women both experience changes as they age. In the fourth or fifth decade, women go through menopause. When they do, the clitoris shrinks, but a high degree of sensitivity remains. The production of natural lubrication takes longer and can be substantially diminished. Using KY jelly (or a similar, safe water-based lubricant) can make up for that. Orgasms continue to be experienced, but may be shorter in duration. The sex flush is lessened. There's a decrease in general muscular tension with arousal and the vaginal wall tissues become very thin, allowing less tissue elasticity. Many of these changes can be overcome with hormone therapy. Nonetheless, women (like men) experience sexual difficulties directly related to PD.

Incontinence

Parkinson's and some anti-parkinson's medications can, as reviewed in the section on the physical impact of Parkinson's on men, create incontinence, leakage, and the inability to delay voiding after bladder fullness is perceived. Women may leak when they laugh or cough. They may experience bladder spasms from drug-caused dyskinesias or from taking anticholinergics. All of these things can negatively effect the woman's libido and can impede her physical arousal.

The female Parkinson's patient experiencing bladder related problems, like the man, needs to be thoroughly examined by a urologist. She needs to discuss these problems, too, with her neurologist to determine if a simple change in drugs prescribed could hold the solution. She needs to drink lots of water, go to the bathroom before approaching sex (whether she needs to or not) and attempt to empty her bladder as completely as she can.

While women don't experience impotence, they may find themselves unable to experience orgasm (this inability is called anorgasmia) or at least having greater difficulty in reaching satisfying orgasm during intercourse. Muscle movement and autonomic responses are impeded by Parkinson's and, in some instances, by drugs.

The female patient, however, has a self-help system not available to men; a system that can substantially improve both problems of incontinence and difficulties reaching orgasm. This system is called the Kegel Exercise.

Kegel Exercise

This exercise is designed to strengthen the pubococcygeus muscle and surrounding musculature. The muscle and its adjuncts help control the urinary outlet; however they also appear to be associated with the ability for receiving sensory pleasure in the vaginal and clitoral areas. Women who have practiced Kegel exercise for a period of time report increased muscle tone in the vagina, improved ability to constrict the vagina voluntarily, and increased capacity for achieving orgasm.

In order for a woman to learn what muscles are involved and how to contract them, she should first stand facing the toilet as though she were a man about to urinate. Then she should pretend to release a stream of urine and abruptly inhibit it before the first drops are released. The contraction involved in inhibiting the stream is the basic maneuver of the Kegel exercise.

Once having experienced the method of contracting, the woman can perform the contractions while driving an automobile, sitting, lying, or doing anything that doesn't require a great deal of movement. She should contract the muscles, hold the contractions for a slow 1-2-3 (subvocal) count, release, and repeat the process. She may do it as many times a day as she likes; 90 or more times daily is optimal at least initially. In a few weeks she will be able to constrict her vagina voluntarily with considerable strength.

Another exercise involves bearing down as one does during labor or defecation. Again, hold the contraction for a 1-2-3 count, release, and repeat. Perform Kegel and this exercise each day. They can be continued indefinitely.

Hormone Fluctuations

While we don't understand the mechanisms involved, we do know that the fluctuations of female hormones - particularly progesterone and estrogen - can result in a diminished or fluctuating response to anti-parkinson's medication.

Menses

According to Dr. Caroline Tanner, of the Parkinson's Institute in Sunnyvale, California, she has never treated a pre-menopausal woman with PD who didn't encounter problems as menses approached. For most, difficulties occur immediately before menses every month. For these women, anti-parkinson's drugs seem simply to quit working. Some women experience this difficulty from several days before the onset of their periods all the way through their menses. Others find that when their periods begin, the problems disappear.

While Dr. Tanner's attempts to formally study Parkinson's and menses have been thwarted by the irregularities of her patient's cycles, her informal observations and efforts to find methods to counteract these drug failures are well worth discussing with your own neurologist. Just as no two people have the same experience with Parkinson's itself, the female response to various approaches to alleviate the menses/Parkinson's difficulties also varies widely. However, a number of approaches have each worked... for some. These (which we emphasize again must be discussed with your own physician) include:

Prescribing birth control pills in an effort to stabilize hormones throughout the cycle and thus minimize the fluctuations before and during menses.

Prescribing Diamox (generic: acetazolamide) can help by stabilizing the membrane while it acts as a diuretic to eliminate excess water build-up. The use of this drug, Dr. Tanner explained, has been found to be useful for women with epilepsy, as well, minimizing the flurry of seizures that can be experienced just before their menses begins each month. Diamox should be taken for 5 to 7 days before menses and should continue for 1-2 days into the patient's period. Diamox has also been found to be helpful for people with atypical tremor, suggesting the possibility of other mechanisms at work, as well.

Adding low dosages of anticholinergics can also be helpful, something that Dr. Tanner discovered through a patient who benefited, before and during menses, by taking Benedryl.

Finally, increasing the Sinemet dosage during the difficult times of the female patient's cycle helps some patients, though others Dr. Tanner has worked with reported no benefit from as much as doubling their daily dose.

Some patients find, too, that difficulties experienced just before and during menses can be reduced by avoiding alcohol, caffeine, concentrated sweets and tabacco during the second half of the menstrual cycle. Regular exercise and relaxation techniques may be beneficial, as well.

Menopause

Women entering menopause experience hormonal fluctuations too, which means they'll probably experience the same kinds of problems premenopausal women have with their menses.

According to Julie Carter, R.N., M.N., A.N.P. at Oregon Health Sciences University in Portland, Oregon, the two problems are definitely related; both are caused by hormone fluctuations. For the woman experiencing menopause problems, the challenge will be to keep hormone levels as consistent as possible. Work closely with your gynecologist during this time. "Once a woman is through menopause or stabilized on hormonal replacment therapy, she generally returns to predictable response to her anti-parkinson's medications," Carter says.

Pregnancy

There is very little information on the experiences of women who become pregnant and give birth after a Parkinson's diagnosis. Because we know that hormone levels effect the patient's reaction to anti-parkinson's drugs, most notably Sinemet, we can extrapolate that hormone changes during pregnancy will have the same affect they have during menopause or menses. Sandi Gordon, author of Parkinson's: "A Personal Story of Acceptance", was diagnosed during her eighth month of pregnancy and began taking Sinemet at the beginning of her ninth month. Sandi relates that from the time she began taking Sinemet until she gave birth to a beautiful, healthy daughter, she and her husband didn't notice much benefit from the medication. That might be, in part, due to the hormone changes Sandi was experiencing during her ninth month.

Research done by Dr. Neal Quinn and Dr. Eldad Melamed, while still fairly limited in the number of patients participating in their studies, indicates that taking Sinemet during pregnancy has no ill-effects on offspring, though it must be remembered that children born of mothers taking Sinemet are few in number and haven't yet been followed very long.

Parlodel should be avoided during pregnancy by the expectant mother who plans to nurse her newborn, since it has a clearly negative affect on lactation.

Hyper-sexuality

Dr. Caroline Tanner of the Parkinson's Institute, Sunnyvale, California, with Drs. Uitti and Rajput from Saskatchewan, investigated patient's reports of perceived increases in sexual interest experienced while taking anti-parkinson's dopaminergic medications.Tanner relates that hypersexuality is most often experienced by or at least is most frequently reported in association with male Parkinson's patients. Often accompanied by unusually vivid dreams and increased sleep disturbances, this condition can range from being fairly mild to quite severe.

Female well-spouse caregivers, Tanner continued, have reported that their hyper-sexual mates are "after them all the time." Further, dopaminergic agents seem to effect the sexual preferences exhibited in some cases. Behavior changes can include heightened or more colorful verbal references and demands for sexual experiences never before part of the couple's intimate repertoire.

The couple confronted with increased sexual demands made by one partner but seemingly excessive to the other, should discuss this increase in libido openly with their neurologist. A change in medications might bring them back to a mutually acceptable relationship. If there is no relatively simple solution, joint psychological counseling should be considered.

Psychological Impact

The Male Patient

If women in this country have been educated, over many years, to believe that their sexual pleasure is of questionable value, men have been simultaneously indoctrinated to believe that their sexual prowess is a major indicator of their overall manhood. For example, a boy is judged, by his peers, to be a real man only after his virginity is lost; men who father many children are often regarded as especially virile; and the swinging bachelor image is still coveted by many single men.

In addition, while female arousal is largely an invisible state, male arousal is signified by the erect penis. Failure to achieve an erection - in occasional or chronic impotence - is impossible to hide and, further, is viewed by most men as a cause of significant humiliation.

PD erodes many of the male patient's previous claims to manhood. As Parkinson's progresses, the male partner may no longer be able to function as the primary breadwinner. He may no longer be able to perform the "male" chores around the house. His independence may be severely compromised. His role as protector of the home and hearth can be diminished. In all this, his self-esteem is continually undermined and the sex act can become the sole remaining banner of his manhood.

Meanwhile, many of the issues faced by the female patient also confront the man with PD. Difficulties the couple may have had before the Parkinson's diagnosis - and sublimated afterwards - may still exist. Stress has undoubtedly increased. Communication between spouses has probably declined. Depression can be situational or biological in nature, or it can be both. Because, for many men, self-image is tied closely to all the things society dictates are manly, it is not surprising that the sex act can become more psychologically important for some male patients - while for the female patient, it's frequently the opposite: their desire for sex is often decreased.

The Female Patient

For most women, the sexual experience is as much an emotional state of excitation as a physical excitement. While women are certainly capable of enjoying the sex act (to include foreplay as well as the act of intercourse itself) for the physical stimulus alone, more often it is tied to a number of emotional factors including the degree of non-sexual intimacy the couple shares, difficulties in the relationship which may exist, other stress factors, and self-image.

To make matters even more complex, many women who are today in their thirties, forties, fifties and, of course, older, still deal with the psycho-social roles that tell them that having sex is a duty they owe their mate; women aren't expected to achieve orgasm with the same biological ease as men and, in some cases, even that sexual intercourse is an act of procreation only and/or that sexual intercourse is not meant to be enjoyed by the female partner. Intellectually most women know all these roles are inappropriate. The much-touted sexual revolution of the '60's taught us that. Emotional integration, however, doesn't necessarily follow intellectual acknowledgement.

Too often, communications between spouses are weakened as the disease advances and each spouse has fears of what the future may bring: fears that frequently aren't discussed as each spouse attempts to protect the other, wrongly believing that if he or she doesn't mention these concerns the other one may not ever have them. Both do, of course; all that is accomplished through this lack of sharing is the disintegration of communication skills that are actually more necessary than they've ever been before. Failure to discuss these fears, which are for many quite consuming, results in failure to discuss other aspects of daily life. Financial concerns are often present but not discussed; the productivity of the Parkinson's patient may decline, leaving the well-spouse/caregiver to assume greater responsibilities - again, without discussion or acknowledgement. Tension grows while intimacy erodes. Difficulties which may have been present in the relationship before the Parkinson's diagnosis are often shelved as the couple unites to fight the Parkinson's intruder, but those difficulties may still be present and, if ignored, can grow.

Merely having a chronic illness creates new stress for any patient; in Parkinson's that stress can become situational depression or can be increased by the depletion of dopamine and serotonin (another chemical - often responsible for depression - often decreased in the Parkinson's patient) which can result in a biologically caused depression for some 30% of patients. Parkinson's attacks the female patient's belief in her femininity and desirability. Self-image can decline as Parkinson's advances and the patient sees her tremor increase, recognizes that her facial expression is no longer under her control, experiences urinary difficulties, suffers dyskinesias and so much more.

The Well-Spouse Caregiver

As Parkinson's progresses, the well-spouse caregiver is thrust into multiple new roles. The patient's productivity decreases, leaving the well-spouse to assume more and more responsibilities. He or she may have once shared the responsibility of providing, financially, for the family ... something the well-spouse may now be required to handle alone. The couple may have once divided household chores but eventually the well-spouse must do most of them by him/herself. The well-spouse, understandably, is often tired. He or she may need to sleep in a separate bed or bedroom (just sleep); something the Parkinsonian spouses may find hurtful if they don't truly understand. The well-spouse is often worried, too, about the stricken spouse, about the finances, about the children, about his or her own ability to cope.

In later stages of PD unpleasant things must be admitted. The well-spouse can become breadwinner, maid, cook and nurse. Even more difficult to consider is that as the afflicted spouse enters later stages of Parkinson's today (though with the new treatments now being evaluated this may not be true "tomorrow"), the well-spouse may be called upon to help feed, dress, bathe and attend to bathroom needs for the much loved but increasingly dependent spouse. The well-spouse may get less and less sleep each night as the Parkinsonian spouse's sleeping patterns are more and more disrupted. The well-spouse has indeed assumed the nearly full-time role of nurse (in addition to many others) and he or she may well become emotionally drained as well as physically exhausted. So physically tired that getting through each day becomes the major goal; so emotionally exhausted that he or she has little left in reserve, a sexual relationship can become, for the well-spouse caregiver, not only unimportant but even dreaded.

The Patient and the Spouse

There may be no other single issue as difficult to confront, emotionally and psychologically, as the couple's sexual relationship. Because both partners carry at least some psychological baggage (impossible to escape in our culture) on sexuality and gender roles, men and women enter romantic and sexual relationships with very different beliefs and expectations. ALL of these beliefs and expectations are heavily emotionally charged. One doesn't really find the ideal spouse, one becomes the ideal spouse by working at it. Physically healthy partners very often have to do lots of work to become sexually compatible. A chronic illness, especially one like PD, with a broad variety of symptoms and life-style impacts, can only turn an already sensitive area into a minefield of potential problems.

Honest communications - coupled with real effort by each spouse to understand the other's needs - is, of course, the key. However, it should be remembered that many physically healthy couples are unable to negotiate the minefield without setting off hidden explosives. The couple coping with chronic illness has all the usual and very hurtful explosions to avoid, but in addition they're stressed, they're exhausted, they're frightened, they're in pain. They may well be too depleted to resolve their sexual relationship problems satisfactorily without professional assistance. Very often we are much more able to make statements and share feelings when a therapist is present to guide each partner toward efforts to understand - not merely react to - the other. Without a therapist, we're often afraid to make statements we fear might hurt an already wounded spouse or might trigger an explosion. A therapist's mission is to help both partners find the middle ground where they can comfortably co-exist and where their relationship can flourish!

Additional Material

Counseling Elderly Patients About Sex , David J. Fletcher, MD, Geriatric Consultant, September/October 1982.

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