Can We Talk about Sexuality and Parkinson's Disease?

Let's We Talk about Sexual Needs & How to Fulfill Them When One Has a Neuromotor Disease

Can we talk?
About sex and
anger, and sexuality and
sensuality, forgiveness, compromise, pragmatism and reality
and about trust and caring.

It's not easy to forget or ignore that cruel twist of fate, genetics, injury or environmental toxin exposure and we are angry, hurt, scared, confused, dejected for good reason. Some people suffer from PD and some people acknowledge its presence and move on. Wherever we are, either as one who has or one who cares, some of the package instructions may have changed.

We're trying or wanting to maintain an intimate relationship with our partners while life feels as if it has turned upside down. In a way it has. The changes justify those feelings but there is an opportunity to begin again. Perhaps to learn from past mistakes.

The changes are caused by medications, by physical changes and limitations, by the psychological changes caused depression, anger or fear. The anxiety caused by feeling that you can no longer be a sexual person but a PD patient or a caregiver. How do you get past these issues?

Identify the problems. What is different? Whether the issues are the inability to gain or maintain an erection, vaginal dryness, the inability to reach an orgasm, to ejaculate, they need to be faced. Can you roll over in bed, get on your knees? Those things make a difference in what you do now. If you can't find a way through these changes, you need to find a way around. Is there a diminished interest in sex or an increased focus? What do you need to feel That Way now? These aren't insurmountable issues but they may require a bit of finesse and creativity.

Everyone wants to see that SEX word but that isn't all I'm going to talk about. Even if you don't have a sexual partner we can still discuss this. Because this series is about the natural sensuality that is in all of us no matter how hidden.

What turns you on? We've gotten older, some of us, and perhaps that beautiful young exciting body has given in to signs of aging. Okay, life happens and no one can repeal the law of gravity - not without some very $$$$$ plastic surgery. I know that I look better in clothes now as opposed to that time when... Personally, I like to see my husband dressed in jeans and a decent shirt the way I always did. That's a turn on to me. What's your visual turn on?

I loved the low tones in his voice when he was younger. They mellowed with age and then they slowly disappeared with the onset of PD. We were lucky that the combination of meds, supplements and voice exercises restored some vocal flexibility. Because I still like to hear him.

Physical flexibility and strength. Mine are just fine, his is fading. Since he was never that flexible, it was his strength that lit my fire. So find something else. Don't dwell on what was unless you can recreate it. While he is working to regain some strength, muscle strength exercises will have to be a constant as PD can take away almost as fast as you regain it. We didn't do that much of the Kama Sutra when we were younger because sometimes it takes planning and he liked his spontaneity. Talked about it sometimes but...

While for alphas finding the direction might work in a more robust way such as laughing at a joke or something lustier, this can also be a time to find less aggressive direction. Candles, music and incense might not have been the way once, perhaps they can be now. It doesn't matter if you can't hear the music, can your partner?

Oddly enough, sometimes as sexual partners, it can be the little things that warm us. Complementing the cook. A casual touch on the face, neck or shoulders without any demands - just a sign of appreciation and affection. Holding hands. Just sitting quietly together. A smile. Trust.

Trust is tricky because if one of you can't trust your own body...but that's a stop on the way we're going. Trusting your body and your partner's. Trusting each other enough to confide your likes, needs, your fears. To be listened to and to be heard. To move your partner's hand to the right place because you feel that your partner will care enough to remember. This is a whole new level of trust.

Let's face it, some people were never that interested in sex because they weren't. While other people were always uncomfortable talking about what they liked. Sometimes they didn't know. Some people never had the great lovers who taught them about themselves and who knew all of the techniques. Others were just not raised to be able to talk about their sexuality.

I can't speak for men on this one but some women never masturbated to teach themselves about what really felt good to them. So how are they ever going to tell their partners who don't know either? Embarrassment can be two-way. One can't ask and the other can't tell. So no one knows. That needs to stop now. And that can feel uncomfortable.

So make your own list. What turns you on? What can you do? What isn't possible any longer? How would you like to be seen and see your partner? What are the psychological and physical impediments? What is realistic and what isn't. Share your lists if you're not comfortable talking yet...that trust or embarrassment thing, you know. You may not be able to meet in the middle. Wherever you meet, it isn't a place for anger. And don't force each other to lie. If you need to write about anger, that's fine; but don't put it in this list.

As a partner, you may be capable of doing exactly what you always did but as part of a couple, that isn't possible. As a caregiver your mindset has probably undergone some changes so take that into consideration because you are also living with this condition and identify with it even if it isn't your body.

When it's time for one of you to open the discussion, don't start by saying, Houston we have a problem. Begin with I Love You. I miss holding you, I miss touching you and being caressed. I want you in my arms. What do you want, what do you need?

We'll pick this up again in a few days.

Having Parkinson's and Sex

Sexual Relations Can Change with Parkinson's Disease Symptoms

I never thought when I was younger and stronger that as I grew older I would be writing about sexual issues. Writing about sex maybe but not because of problems relating to sexual intimacy. However, I never thought that I would have Parkinson's disease either but I do.

The issues are unexpected because they relate to muscle strength, nerve endings, hand stiffness, coordination, inability to move easily while prone. In a limited way they relate to loss of my senses of smell and hearing. The changes in my voice affected her because she loved the sound of my voice. I am lucky that meds and exercise have salvaged some of the old tones and the ability to not speak in that PD monotone. The issues relate to what I understood about a sexual relationship.

Parkinson's patients have a much lower level of the neurotransmitter dopamine than they had before they developed the disease. Dopamine affects the whole body physically and emotionally. It especially affects communication since most communication is non-verbal and Parkinson's often brings change in speech, hearing, and facial expression. These changes can creates lack of effective communication between the PWP and his/her carer which can create many misunderstandings and frustrations. This can lead to an avoidance of talking and a possible failure of the relationship.

For many PD patients and their caregivers there is confusion about roles. Many caregivers are spouses or most significant others, who probably got that role without asking for it or wanting it. The woman who was my lover is now my carer; she is very smart and feels she needs to learn everything there is to know about Parkinson's. I would rather forget about PD cuddled against her . Feeling sexual makes me feel younger and alive. I can forget PD for a while. Since PD is a chronic condition, my PD isn't going to get better baring a cure. It becomes that "use it or loose it" thing and I panic then and forget about the kind of communication we need to be having.

Because I feel a sense of urgency about time and the need to communicate to work this out, I think, "first I must put my hearing-aid in. So much for that spontaneity." But then I hear her invite me to her room to watch TV...with the dogs and sometimes the cats. And she turns up the volume so that I don't need my hearing aid. And lights a few candles.

And I realize that letting go of the fears about what we will be able to do and accepting what we can do is a step I have been reluctant to take. What works best for us might not work for you but that's okay. If it is talking about limitations and then what is possible, then that works for you. If it is something else, you may need to find your meeting place.

The good young days may have passed but the good old days are yet to come.