Spring 2002

Love, Sex & Parkinson's Disease

by Jeanne Rosner

Love in a long-term relationship can be difficult even in the best of situations. Having Parkinson’s disease should not be a deterrent to showing your partner the love you have — whether you are the patient or the spouse.

Love your PWP, love your partner. And remember to show it often. It makes life so much more pleasurable.

A first piece of advice is not to forget simple romance. Both partners should make every attempt to make the expression of love as warm and tender as possible. In any relationship, both partners must shoulder their own share of the preliminaries to lovemaking. In sexual matters, this is very important. Foreplay is a two-way street. As one long-term PWP once told me, humans are hardwired for touch and if we don’t receive it in sufficient amounts, we can wither and die – emotionally and physically. Holding hands with or caressing the cheek of your partner, giving a wink or blowing a kiss, can all help to remind the other that the love that brought you together still exists even if the complete physical expression of that love is no longer as easily shown.

If a fully physical sexual relationship is no longer possible or wanted (by either or both individuals), it becomes even more important to find ways to show your partner that the love between you endures. One husband told me he always remembered to bring home a rose for his wife after he’d been out. A wife told me how she’d started bringing home something sweet early in her marriage and still made a point to bring some chocolate for her husband (now mostly homebound) to satisfy his sweet tooth. These are both wonderful expressions of the love these partners have for their PWPs.

WHAT CAN BE DONE?
Making love is a natural expression of a wide and deep love between the partners. What happens to the physical display of that love when a physical disability is present?
There are several “levels” on which Parkinson’s disease might affect a sexual relationship. On a physical level, having Parkinson’s disease might mean that the symptoms and effects of the disorder may simply make the patient (or the spouse/partner who is now a full-time caregiver) too tired to perform sexually. Being well rested can not only provide PWPs with the energy needed to engage in the sexual act but also the interest. When one or both partners is tired, even thinking about expending the energy to initiate (not to mention complete) a sexual encounter may be difficult to imagine. For many people this is a good reason for initiating sex in the morning, or in the early afternoon following a nap.

On a medical level, having Parkinson’s disease can affect the autonomic nervous system. It is this system that, among other things, controls a man’s ability to achieve and maintain an erection. In this way, the disease can directly affect a man’s ability to perform sexually. As such, adjustments to the antiparkinson medications might be helpful in limiting these effects. For the woman who may have to deal not only with her PD symptoms but also with menopausal effects such as vaginal dryness or pain during intercourse, additional treatments may be necessary to assure a more pleasurable encounter.

On a cosmetic level, having Parkinson’s disease could make a person embarrassed by their shaking, drooling or other less-than-graceful movements. These same symptoms can be sexually deterring to the partner as well. One man who spoke very candidly about this said his solution was to keep a hard mint candy in his mouth when making love to his wife. The presence of the mint encouraged more frequent swallowing and consequently less drooling.

The presence of Parkinson’s in a relationship changes the quality of the relationship. These changes typically occur gradually, as the disorder itself gradually progresses.

In the beginning, just after diagnosis, some spouses have reported being scared of hurting their patient/spouse. One woman called our office scared that she was making her husband’s PD permanently worse as a result if their lovemaking. She said that following making love, her husband’s tremors and other symptoms were always worse. When assured that this was a temporary result due to expending of energy —similar to a good physical workout in the gym — the caller was greatly relieved.

During the months following a PD diagnosis, indeed, neither partner may be too interested in pursuing a sexual relationship. Each may have his or her own worries about such issues as disease progression, decreasing independence, or being a burden on the spouse.

One answer to this is to read and learn as much as possible about Parkinson’s disease so that the very human fears each of you might have now and in the future can be put into perspective and properly handled.

As the disorder progresses, more severe or added symptoms of PD may discourage lovemaking by sexually “turning off” the unaffected spouse. For the more advanced PWP, the partner who must be more of a caregiver may find it difficult to switch back to a “partner/spouse/lover” role. If the spouse has to take a more active role because the patient cannot, the age of the spouse — and his or her own health concerns — may also interfere with the ways in which the couple might be able to express this physical love.

Make sure all medications and therapies are optimized so that the PD symptoms are as well controlled as possible. Exercise daily so that your mobility is at its best and energy levels are maintained. Eat well-balanced meals and make sure you get the rest you need.

Timing may mean everything as the disorder progresses, so you may have to be flexible and spontaneous. As PD progresses, some patients can experience significant difficulties with maintaining “on” effects as well as the consequence of not knowing when they’ll be “on” and when they’ll be “off.” If the patient is “on” and neither partner is too tired, the housecleaning can wait, a meal can be delayed or the store gotten to at a later time. It has been suggested that the use of Viagra, a male potency medication, may also diminish the severity of dyskinesias (studies are now being started). Certainly, pharmacologists have not found any problems in utilizing Viagra for its approved/intended purposes in combination with the different antiparkinson medications currently available.

Most importantly, talk to one another. Share your fears, concerns and worries because, as my grandmother used to say, “it’s easier to cope with just about anything when you share the problems with someone you love.”

Jeanne Rosner is Associate Director for Educational Programs and Director of the PDF’s Midwest Office.