This questionnaire is closed
This questionnaire is closed but can still be viewed. Thanks to everyone who filled out the list; almost all input has been included in the book. Below, you can still view the questions, but there is no longer an option to answer them. You can always contact me at monique@parkinsonbasics.com.
Let’s talk about sex… And Parkinson’s
Sexual health in people with Parkinson’s is not often discussed. This area can become a challenge for people with Parkinson’s and their partners. I’d like to make this subject easier to talk about. Previously I wrote the Handbook Parkinson’s Symptoms, to tell you ‘What’s going on? What’s to be done?’ and ‘What’s better to avoid?’ Now I am doing the same on the subject of intimacy and sexual health.
I compiled information from neurological handbooks and articles about the subject and translated them to laymen’s terms to explain what’s going on and to share possible solutions that can improve our sexual health.
As in the Handbook Parkinson’s Symptoms, I would like to add the experiences of people with Parkinson’s, their partners and health care professionals. This is where I need you. I’ve created an anonymous questionnaire and would like you to take a
moment and think about what you can share about what helped you. (Nothing will be saved to the site, the answers only end up in my mailbox, without your name attached).
Your answers will provide others with ideas on how to improve their situation. It’s not about comparing to how things were before Parkinson’s, but rather about sharing what adjustments you’ve made, what works now, and what might help others, facing a similar situation. Or about what advise you gave, as a healthcare professional.
To give you an idea what this would look like in the book, check out some examples here.
Take a look at the suggestions below and use any or all boxes to type your answers. If something is not applicable, just pass by it. You may always email me at monique@parkinsonbasics.com (this is not anonymous; I will see your email address. I will not share text or email address with anyone though).
Although most of the book will be about intimacy and sex with a partner, it will also discuss solo sex. Please also add your experiences with this if you would.
I will use the answers as much as possible in the book or on this site, sometimes in combination with similar answers.
The questionnaire (closed)
If you can share anything about what works for you and your partner, or what you as a healthcare professional have advised, it will help many of us to enjoy this wonderful part of life to the fullest. Thank you so much!
Below are some possible questions to get your thoughts going. Please share anything you think might help someone else:
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How do you discuss this subject with the Parkinson’s nurse and the neurologist?
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How do you discuss this subject with your partner?
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What words do you use to talk about sex?
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How do you start a conversation?
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What signals do you use to communicate about sex with your partner?
- What positions give problems?
- How did you solve that?
- Does pain play a role? Have you found solutions?
- Which positions work best for you?
- As a woman, do you have trouble with lubrication? If so, what remedies or tools do you use to help with this?
- Are you able to maintain a rhythm?
- Do you experience irregular sensations in your hands, legs or other body parts during sexual activity? What solutions have you come up with for this?
- As a man, do you have problems with premature ejaculation, difficulty reaching orgasm or erection problems? Do you have any tips you can share for dealing with these problems?
- Are you experiencing problems with sexual desire? What do you do to deal with this?
- How do you deal with a difference in need for intimacy or sex
- Have you discussed with your specialist to temporarily stop taking certain medications because of the negative effect on sexual desire?
- Do you suffer from disinhibition in the area of sexuality (a possible side effect of medication)? Are you able to deal with this? What has helped you with this?
- Does the tremor or dyskinesia worsen during orgasm?
- Do you have any tricks to reduce this?
- How do you deal with decreased fine motor skills and limited/reduced hand function?
- What tips do you have regarding tools? What works for you?
- How do you deal with urinary or bowel problems during sexual activities?
- What do you do about excessive sweating or saliva during sexual activities?
- Have you expanded your sexual repertoire? What tips can you give?
- Would you like to say something about how easy or difficult it is for you to talk about sex with your partner or healthcare professional? (And as a healthcare professional: how do you broach this topic?)
- Do you discuss with your partner what you do or do not like during sex?
- Have you openly talked with your partner about your personal views on sex and have you ever thought about what exactly you mean by sex?
- Do you find it difficult to talk about it, what would help you to make the topic discussable?