A couple holds hands in the front seats of a car at night. They look at each other worryingly in the rearview mirror.

When Parkinson’s Is Ruining the Romance

How would you define intimacy? Maybe it's having a cup of coffee with a friend while sharing your thoughts about the latest “The Handmaid’s Tale” episode. Then again, maybe it’s when you have a hot and heavy kiss with your partner. Well if you guessed the hot make-out session, you were only partly correct... they both are types of intimacy.

Types of intimacy

There are two types of intimacy, and they are:

  1. Physical: Physical intimacy is sensual proximity or touching, examples include being inside someone's personal space, holding hands, hugging, kissing, caressing, and other sexual activity.
  2. Emotional: Emotional intimacy is when you feel connected to someone by shared experiences, transparency, empathy and trust. An example of this would be close friends sharing a traumatic story about their childhood. A group of men, going on their annual camping trip.

Intimacy roadblocks of Parkinson's disease

As many as 68% of men and 88% of women with Parkinson's disease (PD) experience decreased libido, problems with sexual functioning and a sense of decreased intimacy with their partner. Due to the stigma that comes with sex, there is a lack of research and attention given to the topic of intimacy. PD is thought of as a movement disorder, but the frequency of non-motor issues can be swept under the rug. (Kristoffer Rhoads Ph.D., APDA Washington Chapter)

Intimacy challenges

A number of intimacy challenges come along with having Parkinson's disease. Sense of self is impacted with PD, i.e. “I am I attractive anymore?” or “Will I be able to satisfy my partner’s needs?” Struggles with managing basic grooming such as shaving, putting makeup on, or styling hair also occur. Facial masking and decreased expressiveness can make showing affection difficult. Additionally, non-motor issues such as drooling, sweating, or change in body odor can affect intimacy. Sleep disturbances, fatigue, and low energy occur frequently in people with Parkinson's as well. And finally, medications for depression or anxiety can cause sexual dysfunction.

Ok, so now what to do about it?

You did fall in love and those feelings are still there, regardless of the changing roles. Don’t view yourself as a patient and caregiver, it will just take a little more work. Find rituals that you can do on a regular basis together such as sharing dinner together, without distractions or walking the dog. Take time every evening and morning, to snuggle, hug, hold hands, or kiss to reaffirm closeness. Don't forget once a week, plan a date night! Don’t make it complicated!

Intimacy vs. intercourse

Many people think of intimacy and sex as the same thing, but there are important ways that couples can experience intimacy without intercourse. Communication is key! Talking openly and honestly about what your needs/wants/desires are. What does intimacy mean to you? Demonstrate love, respect, warmth, and togetherness in non-sexual ways, such as holding hands or each other. Watch your favorite TV show together. If sexual intercourse is possible, experiment with different routines such as switching the time of day to initiate lovemaking, trying different positions.

Time to talk

Although talking about intimacy can be terrifying, remember that you are will your safe, loving partner. There is nothing to be embarrassed about. Take this opportunity to redefine and rediscover intimacy with each other. Involve a therapist and your medical physician to ensure you are on the right track, mentally and physically. Remember Parkinson’s disease is not a death sentence!

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