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PPS and Intimacy

Linda Van Aken and Henry Holland MD

Studies for aging show that sex is still a very important part of life even as our endurance decreases and our libidos fade. Humans are very sensual animals and intimacy is often just as important to our emotional well being as all the other things we do to take care of our bodies. Dr. Richard Bruno, a neuro-psychologist and Director of the Post-Polio Institute of the Englewood Hospital and Medical Center in Englewood, New Jersey, has written an article entitled "Sex and Polio Survivors." Dr. Bruno writes "The first step to intimacy and sexuality is recognizing and dealing with the emotional reality of the original polio and any abuse you have experienced because of it. Next, you need to identify your own negative feelings about yourself and stop projecting them into the heads of potential friends and lovers."

There is a lot of psychological substance to Dr. Bruno's statement. "Recognizing and dealing with the emotional reality of the original polio" is a heavy assignment. For many of us, the memories of the original polio are stamped in our remote memory, but rarely truly shared in depth. Our denial has allowed us to guard against dealing with our deepest feelings connected to acute polio, but our denial has also helped us to overcome our respective obstacles in life and to get on with achieving goals and to function relatively normally. To let go of our defenses and deal with our original polio reality can provoke some anxiety, uncover some anger, and even result in feeling depressed. Support groups can certainly facilitate this process, especially in small group discussions. Some may require individual counseling to deal with these long submerged feelings. Others may never be able to deal with these feelings, but all of us should be able to treat ourselves in a more empathic and compassionate manner.

Dr Bruno also mentions above that polio survivors also need to deal with any "abuse you have experienced because of it" (polio). He mentions that "nearly one-third of the polio patients we treat have been physically or emotionally abused and 25% of the women have been sexually abused. Not surprisingly, those who have been abused are much less likely to risk intimacy or be interested in sex." Individuals who have suffered abuse in childhood often have damaged self-esteems, repressed anger, and may distrust and experience estrangement in an intimate relationship. For children who had polio at a preschool age, any abuse that may have occurred as a result of polio may be repressed or pushed into the unconscious. The experience of PPS has stimulated some flashbacks and partial memory of these earlier experiences. Some are recalling the fear (anxiety/panic) associated with the separation from parents during isolation periods. Emotionally, psychological damage may have unintentionally resulted. To be able to experience intimacy in a relationship, resolving feelings connected to any abuse would serve the polio survivor well.

What does Dr. Bruno mean when he says, "You need to identify your own negative feelings about yourself and stop projecting them into the heads of potential friends and lovers?" This simply means that we should make a thorough self examination of what we do not like about ourselves, especially our polio or PPS selves, and not take it out on our loved ones. Last fall's survey of our own group revealed that 70.5% of us are married. Thus, for most of us, it is logical to assume that our spouse is the individual most likely to be the object of any blame or projected negative feelings. If this is happening in a marriage or any other intimate relationship, it will likely cause problems. Search within yourself and try to avoid this trend. PPS can have a negative impact on a relationship and sometimes the negative input may originate from the subtle withdrawal of the more able bodied spouse. On the survey of our group, 51% reported that PPS was having some impact on the family system. Often, this impact was negative and could impede communication.

With the onset of Post-Polio Syndrome, many of us find that it is difficult to maintain a healthy sexual relationship with our partners. Let's explore new ways to maintain an intimate relationship with another person. If you are married or have a significant partner, flirting and touching can still be very much a part of your daily life. Actual sexual encounters may need to be more structured. Due to reduced energy levels, it is often necessary to plan for an intimate encounter. Save your energy reserves and plan for a special time together.

Frequent kissing and hugging moments at various times throughout the day can be rewarding. It is rather like constant foreplay all day long. It is a perfect way to set the stage for a very romantic evening. Consider dressing with "intent." For ladies, wear that lovely lingerie you save for special occasions. Everyone can take just a little extra time with their grooming so that they feel good about themselves. Wear soft comfortable fabrics. Soft woollies and silky satins are tempting to the touch. Being warm is often so important for those of us with PPS. So light a fire or turn on a heater in your bedroom to help keep the chill out of the room. Set the mood, light candles, and play soft music. Make each encounter the most romantic day possible.

All of us are familiar with the concept of pacing our energy throughout the day. This same approach may be helpful in our sexual activity. Those who have considerable motor weakness or fatigue as a result of PPS may find it more satisfying to allow the more able bodied sexual partner to be the more physically active participant. The proper use of lubricants and utilizing the most relaxing sexual positions usually will facilitate successful sexual pleasure. The satisfaction of an orgasm is not always necessary for successful intimacy. Stimulating touching, caressing, and massaging is often very soothing and gratifying. Even if you are single, there are ways to find comfort in your own sexual thoughts and fantasies.

If there are sexual performance problems, Viagra is not necessarily the solution for all men nor are female hormones for the women. Communication between spouses or lovers is often the most important factor in improving a sexual relationship. "Many factors can diminish sexual drive in PPS sufferers, but none is greater than an unwillingness to communicate" says Dr. Stephen Sloan, a psychotherapist and staff member at the Shepherd Center and Emory University Center for Rehab Medicine. "Sex is a challenging subject for many people, and perhaps especially those with a disability. Everything from body image to medication can interfere with sexual performance and confidence", Sloan said, "Talking about these things is key." Sloan added, "Do not get hung up on traditional methods of arousal and intercourse, there are no rules. And don't forget humor. To have good sex, you have to be able to laugh."

Sexual arousal also has medical value. Arousal can help to produce endorphins in the brain and endorphins help pain. Dr. Brigitta Jann, the medical director for the Emory University Center for Rehab has written that sex helps build cardiovascular health. Thus, sexual arousal is one way to improve cardiac function when jogging, swimming, and other methods of physical exercise are not possible options for many folks with PPS.

Does it matter how often you enjoy sexual encounters? No! It only matters that you still find ways and the time to explore your sensual self.

Henry Holland, Richmond., Virginia, USA.

October 1998

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Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.
Created: 15th November 1998
Last modification: 22nd January 2010.

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