Parkinson Basics

Menu

Examples from the book

Below you can read examples of anecdotes in the book. You will read information and tips that I give and accompanying statements/anecdotes. Everything between quotation marks are anecdotes from people with Parkinson’s. I also hope to get anecdotes from partners and healthcare professionals.

Discussing sexual health

Bring the subject up openly to reduce tension and avoid misunderstandings or self-blame.

  • “I haven’t been taking much initiative lately or responding to yours. I’ve been dealing with a lot of muscle and joint pain these past few weeks. I’ll let you know when it’s better.”

Talk about the “hassle” How can you reduce discomfort or frustration?

  • The difficult movement: “Leaning over you is uncomfortable sometimes. Could you come and stand in front of me?”
  • What works, what doesn’t: “I prefer lying on my other side; it’s more relaxing for my body.”
  • When a cramp happens during sexual activities: “Wait, I need to move my leg; it’s cramping.” (Beforehand, I had explained that my foot or thigh sometimes cramps during sex. I’ve also asked him to massage my foot afterward, as it gets very tense. By bringing it up earlier, it makes it easier to talk about it in the moment.)

Use humour while experimenting:

  • “Ah, that’s what you were trying to tell me. Come here, let me hold you.”
  • “Oh no, abort! Cramp position. Let’s rethink this, please.”

Motor symptoms

Being excited may increase our tremor or involuntary movements.

  • “When the feeling of orgasm builds, my arm starts shaking uncontrollably. It’s very distracting, and I lose the sensation. I’ve noticed that if I hold on to a pillow, it doesn’t happen—or happens much less. Now, Now, I make sure to grab a pillow when my body starts taking flight.”

Change positions if you can no longer maintain a rhythm.

  • “When I’m on top, sometimes I can’t keep a rhythm going. My pelvis just kind of stops moving. My partner knows this and responds to my physical cue to change positions. After it happened the first time, I simply changed positions, and my partner followed. Afterwards, I explained that my body couldn’t continue the rhythm. He said he thought that might have been it, because he felt the hesitation in the movement.”

Consider using a fast-acting dopamine medication before sexual activity to improve movement.

  • “I keep Madopar in my bedside drawer. I take it not only when I can’t get back to sleep in the middle of the night, but also sometimes when we want to make love. Madopar helps me move better and prevents cramps.”

Use humour when things don’t go smoothly.

  • "Getting out of my nightshirt can be a real challenge—especially when I’m lying on my back. Sometimes I get stuck in the shirt and cannot move any which way, which always makes me laugh!"

Talk about what works:

  • “When we have sex; I sometimes need to adjust positions, to relieve muscle tension and prevent cramping.”

Adjust positions. Keep pillows handy.

  • "It helps me to support my leg with a pillow, so I don’t get cramps in my thigh or buttock."

Consult your MDS or Parkinson’s Nurse about pain-related issues.

  • "I get cramps during certain positions when I have sex. Could using fast-acting levodopa beforehand help?" (I now keep madopar in my bedside drawer. By the time we’re through with foreplay, it’s kicked in.)

Adjust small things in familiar positions to avoid pain or cramps.

  • "When I sit on top, I make sure to extend my toes and pull them up. If I don’t, and keep them flexed, they often start cramping."

Discuss the different desires you have—acknowledging that sometimes you seek intimacy, while at other times you may want to engage in sexual activities. Make agreements about how to communicate about this and how to clearly express what you want in the moment.

  • “Sometimes, when my partner approaches me with the intention of having sex, I don’t feel aroused or am not in the mood. But I know that I may very well become aroused. My partner knows what works to excite me. So, I respond to him and am open to what could happen. Sometimes I don’t get very aroused, sometimes I do. But in both situations, I enjoy being close to my partner. So, for me, even if I don’t get very aroused, I am still enjoying myself. It’s okay that it’s not ‘fireworks’ every time.”

Engage the senses to get into the mood. Touch, smell, vision and hearing can excite us. Seeing and feeling things work best with most people (Laan & van Lunsen, 2024).

  • Engage in pre-sex activities: Help set the mood by reading or listening to steamy stories, for example: “I have two audiobook apps that have some steamy content. When I want to get in the mood, I listen to one of these stories. It never fails to get me in the right frame of mind.”

Sexual mechanisms and related challenges

Using Tools and Techniques:

  • Lubricants: Use oil or cream to massage the skin, including intimate areas.
  • Massagers, vibrators and vacuum devices: Vibrator. "I've used a vibrator for solo sex for as long as I can remember. But since I started using it with my partner, it's become so much easier to reach orgasm. The vibration, combined with his fingers and/or penis stimulating me, is absolutely wonderful!"

Minimize Distractions:

  • You may have previously enjoyed stimulating your partner while receiving stimulation yourself. However, this can now become too distracting.
  • Concentrate fully on yourself as you approach orgasm, as any distraction may disrupt the sensation.
  • “It really helps me when I can fully focus on how you're stimulating me. When I'm distracted, I lose the feeling, which is why I stop touching you—to concentrate better.”

Repertoire

Express love through touch: Regularly touch each other lovingly without the expectation of sex.

  • “I enjoy sitting next to you/sitting against you.”
  • “I would love a hug.”