Yesterday was Valentine’s Day, therefore, I spent my day with my husband and kids. I did wonder what I was going to write about and then I opened my Facebook page and saw all the love being spread through social media and I realized PD and intimacy was the way to go.
Do you know that there are changes in intimacy and sexuality that can be accompanied by Parkinson’s disease (PD)? The symptoms are rarely discussed with the doctor. As many as 88% of women and 68% of men with PD experience decreased intimacy with their partner due to decreased libido, and problems with sexual functioning. A small percentage experience increased libido causing some patients to wander around for more sexual intimacy, other than at home. This disruptive sexual behavior can be difficult to discuss with the doctor. Due to the fact that patients rarely discuss this with their doctor, research is rarely completed. Patients and their partner should discuss these problems to be able to learn how to improve their sexuality and intimacy for those affected by PD.
Motor impairments can lead to problems being able to move much in the bed. Medications and the disease itself may cause changes in the way the person looks such as sweating, gait disturbance, changes in body odor due to medication or the disease, as well as, drooling. Sexuality is less spontaneous and infrequent, due to partners bed separation caused by sleep disturbance.
Other things that also cause problems with intimacy are depression, diabetes, heart problems, and previous sexual problems.
So what can couples do to begin to reclaim the intimate parts of their relationships?
The first step is to think about your feelings and your concerns. Make a list so you don’t forget something. Schedule a time to discuss them with your partner. Try to figure out what you need and want. This step might be hard since most people have no clue. Don’t forget to talk about the positive things that are working. You might feel uncomfortable discussing this with your partner, but don’t put up a wall between you two because things won’t get any better if you do. If you just can’t talk about it, you might want to make a video or write a letter. That would break the ice for communication.
Communication is extremely important…….Communication is extremely important. I can’t stress this enough to you. Once you have communicated your needs, wants, concerns, fears, feelings, and what’s working, it is time to listen. When I say listen; I mean keep your mind open to what your partner is saying, don’t think about your answer, LISTEN!
Once you have communicated and your partner has listened; I suggest going over how you interpreted what was said. After clarification, it is time for you to think about what was said. Take as much time as you need. Now it is time to respond to your partner. You can do this one concern at a time or all at once. Make sure you are clear and concise to make sure your partner understands. Talk openly about sexual and intimacy needs. If communication just isn’t possible, whether verbal or written, then you might consider a couples counselor. Make sure this counselors is extremely familiar with neurological diseases.
One thing I feel works when the walls are up, start from the beginning. Start with non-sexual intimacy. Yes, I said no intercourse. Start holding hands again while walking or just sitting watching television. Put on some old music that you both listened to while courting. Try flirting with your partner, at a party or gathering, from across the room. Now days, it is convenient to text a love note during the work day.
If you want to have a long and successful relationship, then you have to start with a baseline of mutual respect. You have to make sure that you see you and your partner as a team and that you’re considerate, honest, and compassionate as much as possible. However, nobody’s perfect, and you have to be prepared to apologize sincerely when you’ve made a mistake. If both you and your partner are willing to put in the effort, then you can have a fulfilling and respectful relationship.
Then you can start with kissing and touching. Sleep with no clothes on and hold your partner with your arms wrapped around and lay against each others bare skin. Sleep! Revisit the cuddling the next morning and revisit this with a new-found curiosity and sense of openness. If sexual intercourse is possible, experiment with different routines (e.g., switch lovemaking to the morning, trying different positions, etc.).
After you’ve had the conversation with each other, worked on intimacy, respect, and possible love-making, it’s time to talk to your doctor about treatments, effects of medications, and possible referrals to specialists or counselors, if needed. Treatments for men have received much attention and include oral medications, injections, pumps, vacuum devices, or prostheses. For women, there are oral estrogen, creams, lubricants and devices to provide added stimulation. Keep in mind that not all interventions will work for every individual, every relationship, or every situation. Again, perhaps the most critical intervention is to maintain your curiosity and willingness to keep looking for answers, as well as your ability to keep talking with each other.
I’m not saying this will be easy, however, it will be critical for you and your partner to keep working towards a solution, repeating the same conversations and experiments as necessary. Have fun with it. Acceptance of where you are and “what is” will be important, as will be the need to shift your focus from “what you can no longer do” to “what you can still do.” This is no easy task given all of the demands of care giving and the toll taken by PD. However, remember that you will not find the time for intimacy, you will have to make it!
© Written by Mary Killian