It's getting rather hot in the Notting Hill pub this week, as we convene to discuss the (t)horny question of intimacy. Birds do it, bees do it, even educated fleas do it – but do Parkies? The Movers and Shakers are joined by an expert sexologist and an intimacy co-ordinator to get to the bottom of the issues around sex. It's a candid conversation – covering everything from erectile dysfunction to vaginal dryness, viagra to lube – that will open your eyes to the possibilities of intimacy with the condition.
By Podot
Each week Rory Cellan-Jones guides us between the laughs and moans in the pub. To read Rory's summary of this week's episode click here.
Guest Biographies
Dr Angela Wright
Dr Angela Wright is a Clinical Sexologist - trained in psychosexual therapy and in the medicine of how sex works (and how to help when it doesn’t). This allows her to integrate what is happening in the body with the meaning and impact it is having in the mind and in relationship. Being dual trained gives her a rare perspective on the body:mind interaction and allows her to have a holistic approach to improving peoples sex lives. She works in the NHS, as well as in the voluntary and private sectors (at the Portland Hospital, The Wilmslow Hospital and online at Spiced Pear Health). She is a committee member for the British Society for Sexual Medicine. Angela is also qualified in Palliative Medicine and a British Menopause Society Accredited Menopause Specialist and specialist in menstrual hormonal health, both of which are often impacted by age and illnesses like Parkinson’s disease.
Rose Ryan
Rose Ryan has over 30 years professional experience and has been seeking to promote best practise within industry and education
when working with intimate scenes since 2019. Rose is an Intimacy Practitioner – Coordination and Direction, Movement Director and Educator. Rose has an MA from The Royal Central School of Speech and Drama, BA from Bretton Hall/Laban Centre and is an Intimacy Coordinator on the BECTU IC Registry.
Credits for theatre include Royal National Theatre, The Almeida and for Film and TV: Netflix, BBC, BFI. Rose produces thoughtful
and dynamic intimacy where the actor feels safe and liberated, working with a diverse range of people, abilities, and disciplines. Rose creates and implements intimacy guidelines for drama schools and universities.
A note from Dr Angela Wright...
Sexual problems are really common in Parkinson's Disease - with almost double the rate of loss of libido than the general population, 9/10 women with Parkinson's experiencing some kind of problem with sex and about 8/10 men with Parkinson’s admitting to erectile dysfunction. So why don’t we hear more about it? I think the answer lies in our lack of literacy when talking about sex - both within the medical profession and in patients. We simply don’t always have the right words and language for the conversation - nor are we always sure that it is a conversational topic that we are allowed to raise.
Problems with sex - regardless of their cause - are best viewed with a biopsychosocial lens. This means they may have their roots in body, mind or our wider world. Regardless of where the problem originates, our systems work head down as well as body up. Sexual problems create meaning and impact. They change our identities and behaviours. Trying to improve them means taking a wide lens, getting curious (and honest !) about all the ways in which this issue is affecting us. And - a bit like the British Olympic Cycling team - if we focus on making lots of marginal gains in lots of areas, we can significantly change our outcomes.
Parkinson's disrupts dopamine - a chemical that affects our pleasure, interest and reward, arousal circuits and movement. It also affects a couple's communication, the dynamic between them (adult:adult can shift to patient:carer) and it distracts and detracts from how things were. Sometimes sexual interest and arousal can become heightened (often medication related); sometimes everything can get dialled down instead. Pleasure, erection, arousal, lubrication can all be diminished.
Some of the issues that can affect you if you or your partner have Parkinson’s include:
New compulsions and sexual interests
Feelings of arousal and erection at unwanted moments
Problems with getting an erection
Loss of arousal or difficulty climaxing
Vaginal dryness or pain with sex
Difficulties moving in sex
Fatigue
Loss of libido
Pleasureless orgasm
Changes in ejaculation (early, late or absent)
Low testosterone levels
…and many more.
Some of these issues are caused by Parkinson’s itself, some are due to medications, and some are due to other health issues and/or ageing.
So - if you are struggling, where can you go for help?
You can start with your GP ( who may be able to support with vaginal dryness, erectile difficulties, and low testosterone, as well as assessing the impact of any other medications you are using). Your neurologist or Parkinson’s specialist nurse may also be able to support or refer you to a local psychosexual medicine clinic or psychosexual therapist for support. There are third sector organisations who may be able to support (e.g. Parkinson’s UK) and the British Society of Sexual Medicine. To find a psychosexual therapist, try the COSRT website or Relate. Dr Angela Wright can be contacted through www.clairemellon.co.uk otherwise www.spicedpearhealth.co.uk.
A note from Rose Ryan...
I wonder if we need to look at the broader spectrum of intimacy, including desire and pleasure, how we cross the space between with a long-term partner or someone we want to have a causal relationship with. I am struck by the fact that most people on Movers and Shakers are in long term relationships, what about those who are on their own and/or are seeking a relationship? Equally what about the LGBTQI+ community, men who love men, woman who love women and the trans community, there must be people with Parkinson's Disease in amongst those communities that are struggling with intimacy and sexual interaction.
I do think that most of the population do not know enough about the anatomy of sex.
There is a myth of the perpetual erection, when in fact erections fade and are refound before being full enough for penetrative sex. Another myth is that woman are perpetually ready for penetration, when women are often ambivalent about sex and need more time to become aroused. Men reach a point of desire in 8 minutes, but it takes a women around 20 minutes to reach a place of desire.
We also know that anxiety and stress cuts through desire like a knife and people with Parkinson's Disease are often struggling with anxiety and stress so the ability to find desire might evade them. What turns us on, is if we see ourselves reflected as beautiful in our partners eyes, with Parkinson's Disease I believe this is more difficult as the sense of your own attractiveness is questioned by the disease, how Parkinson's Disease is integrated into the sense of self is different for everyone.
Someone on Movers and Shakers said that Parkinson's Disease is the disease that keeps on taking. As a partner at times, I feel unable to initiate intimate contact as there has been so
much disappointment in my partners life that I do not want to add more. Sex is wonderfully messy and awkward but to fail, would be too much, for both of us. The need for nonpenetrative intimacy is a vital part of the picture. Equally the need to have wild and delicious sex might be important for one or the other partner.
Another myth is that a partner knows what you want. They don’t unless they are told or guided through hands and words. Intimacy and sex are dynamic through the journey
of our relationships, things that worked once and felt good might need to be changed. Positions that have been used previously might no longer be comfortable, so negotiation and adaptability is vital especially with the symptoms of Parkinson's Disease.
Then there is the impact of medication, there are the meds that create a compulsive
disorder to have lots of sex, what is the pressure on the partner? Equally some of the
meds cause erectile dysfunction and vaginal dryness, how is this navigated with a
partner or if you are newly in a relationship?
The individual is responsible for their own sexual pleasure. This is complex if you are
continually in pain or unable to be still, or and this is the big one, you feel shame.
This needs a sensitive psychologist to unpick the complexities of how someone with
Parkinson's Disease can take responsibility for their own pleasure and work with their emotions and feelings to come to a point of desire.
Something to consider is how we come to a place of touch, I know with my partner I can tell if he has taken his meds by holding his hand, I sense the rigidity in his body and feel his tremor. Touch is such a vital part of being human and part of the move towards intimacy. Is there a time where couples can share touch without the need to escalate to sex so that anxiety is minimised, then massage, guided touch is also pleasurable and masturbation. It would be good to encourage the need to build sensuality. Are there any studies around touch and Parkinson's Disease? My observation is that those in a relationship where touch is part of the language of communication fare better than those who are alone or unable to engage with intimacy/touch. This is purely my observation and unfounded!
I have a worry about those who are seeking relationships with Parkinson's Disease as consent may not be clear and they might be vulnerable to abuse. Consent is read in another both by verbal conversations and physical cues. With Parkinson's Disease the masking of the face and the dyskinesia makes reading the person challenging so the need for verbal
communication is important but again Parkinson's Disease often diminishes the ability to verbally communicate. This can lead to anxiety which is so unsexy and can leave those with Parkinson's vulnerable.
My observation of my partner is that stress is a huge part of his condition.
Imagine trying to find a relationship and having to explain about Parkinson's Disease, then the pressure to be intimate, the stress affects the meds, and then things can get very messy and confusing.
Physiological problems that can arrive for men with Parkinson's Disease and need discussing are erectile dysfunction, the inability to ejaculate or possibly premature ejaculation. What about men that love men and want to talk about anal sex, women who love women who use sex aids and toys? There is a whole discussion to be had about Parkinson's Disease and sex toys. Also, those who BDSM has been integral to their relationship, what happens and how does that change when they have Parkinson's? For a woman with Parkinson's Disease a discussion about vaginismus, which is the unconscious tightening of the vagina, constant pain from the nerves in the vulva and vaginal dryness. The need to use lubrication is important. I want Parkinson’s UK to be handing out packets of lube, it would be a blue packet with the words everything is better with lube, on it. Even if it is not used, it would start conversations about intimate and sexual relationships, which are the
conversations that need to be had. Sex and intimacy are always better with open
and clear conversations, and with agreement/ consent to touch.
My takeaway from our conversations is; as the partner to separate the role of carer from lover. Take time to see the person you fell in love with and love them for who they are….. be their lover.
I am happy to be contacted if you would like more information
Rose Ryan (she/they)
Intimacy Practitioner, Movement Director, Educator
Intimacy Coordinator on the BECTU Register
+44 7949 200 773
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