On June 18th, PMD Alliance presented a webinar called “Intimacy in PD.” Intimacy encompasses deep emotional, mental, spiritual, and physical closeness in a relationship. Both the motor and non-motor symptoms of Parkinson’s can have an impact on all aspects of intimacy. In addition, care partners face their own challenges, exacerbated by stress and current sheltering in place. This webinar features Dr. Sheila Silver, a clinical sexologist. This webinar may be of benefit to both caregivers and those with PD alike.
The webinar was recorded and can be accessed through PMD Alliance’s YouTube page.
“Intimacy in PD”
Webinar by Parkinson & Movement Disorder Alliance
June 18, 2020
Notes by Adrian Quintero, Stanford Parkinson’s Community Outreach
Dr. Sheila Silver is a clinical sexologist with a private practice in Portland, OR. She sees individuals and couples with a wide range of sexological issues, including maintaining intimacy in the face of chronic illness, with an expertise in PD.
PD, Intimacy and Covid 19
Due to the pandemic, many of us have been primarily at home with our partners for months now. It can be a challenge being around a partner more than normally.
Tips To Enhance Physical and Emotional Intimacy
Dr. Silver explains that the physical and the emotional are interlocked. Factors such as ageing, any health issues, and especially PD impact one’s sexuality.
Relationships are like accordions, you need closeness and you need separation. Right now this time of sheltering in place might be very challenging, as there is nowhere to go to get the alone time/ time apart. Typically one person of the couple needs more solitude than the other person. Dr. Silver suggests to couples to make sure you get some couple time, some fun time, some outside time, and time just to yourself (maybe this is taking a walk, taking a bath, gardening, etc.) Make sure you’re having time just the two of you together where you are having fun. Balance this with time alone.
Dr. Silver encourages expressing admiration for a partner beyond saying I love you. A lot of long term couples may say I love you to their partner, but aren’t specific in their appreciations about who they are. These appreciations can ago a long way in creating emotional intimacy.
Treat your loved one the way you would treat a friend, in regards to politeness and tact. This may be more how you treated them at beginning at the relationship, before comfort and routine took over.
Staying attractive with what you wear, getting some exercise, and smelling good also make a difference. A lot of us right now aren’t going to any lengths with our appearance. How we dress and what we wear impacts us as individuals, not just our partners. This is important for our own mental health and well-being. It can easily slide if we are home a lot.
Switch up your routines. Surprise your partner. Time right now might feel like the movie Groundhog Day. We don’t have our same routines and our lives have less variety.
Be mindful about TV, news, phone, and social media. We are more isolated so it makes sense to gravitate more towards these things. Notice if there is a way to be more discerning with social media, or see how often you find yourself distracted by it. Could limiting your engagement with social media enhance your connection with partner?
Q: I have PD, and one problem I face is with drooling. I don’t feel attractive, and although my wife says she doesn’t mind, I feel repulsive.
Drooling is a typical PD symptom and one people often feel embarrassment about. As best you can, having something nearby (such as a hanky) to be mindful of that, and to treat it as neutrally as possible. Treat it as an adjustment you need to make, but also compassionately. In regards to health changes, there are things about us all, and certainly people with PD that we just cant do much about. Its part of the grieving process of wishing it was different, and it just isn’t how we want. Dr. Silver recommends looking into Dr. Kristin Neff who speaks a lot about self-compassion.
Q: When a person with PD is experiencing apathy or is just less engaged in general, what can help them to connect?
Make sure they are talking to their doctor or social worker (if one is part of their care team). There may be medicine adjustments that need to be made.
One question to ask is if the person with PD is moving as much in their day as they can? Sometimes the stillness perpetuates more stillness. Moving stimulates chemicals in the body that will help support the person to be less apathetic. Having something in the week to look forward to is another way to counter apathy.
Q: My husband has a higher sex drive than I do. Part of my challenge with this is I find myself struggling separating my caretaking role from my wife role. I often feel more like a mother than a wife.
This is a primary concern that hampers one’s feelings of desire. Moms with little ones, typically the sex drive goes down for many people, as they are in a busy, watchful mode. This can be true with caretakers as well. It makes it incredibly hard to want to be sexual and be able to get into that zone. If you have a plan to be sexual at a certain time, have a buffer between caretaking time and just being you time. Take that hat off for a short period of time, to help transition. Ask yourself, “what can I do to help me remember who I am and what do I need to not be in the caretaker role and feel more in a woman/ wife/ partner space?” “What can I ask for during this time, so it’s more what I want?” This is important so that the balance isn’t just out putting, but rather there is balance to receiving that works for you.
That said, some people with PD experience hyper sexuality because of medications they are on. It might be helpful to have a conversation with the neurologist about possibly adjusting medication.
Q: What if someone’s libido had fallen away, and then when they started a dopamine altering treatment, perhaps the normal level of sexuality returned, but for the partner, it might feel like hyper sexuality, when it is actually just the other person returning to their previous baseline?
There is also sexual desire discrepancy, which is different than hyper sexuality. If you are the higher desire partner, it doesn’t mean you have hyper sexuality as much as it means your desire is higher than your partners. Desire discrepancies show up in other ways in a relationship too. How do we resolve desire discrepancies in other areas? For example, one partner liking the house to be cleaner than the other, or going out and doing social activities. It doesn’t mean one partner is right and one is wrong. How do you compromise when one person wants something more than the other person? The compromise is going to be less than the higher desire person wants, and more than the lower desire person wants, and that is how it is regardless of the area.
Get Away From Performance Driven Sex
View sex as an opportunity for shared pleasure with no goal. In our culture, we often see sex as being very performance driven, and this sets people up for a lot of frustration and disappointment and feelings of failure. A big part of her work with people is helping them move away from the idea of goal-oriented sex (which may be both people have to have an orgasm, penetrative intercourse needs to happen, etc.) She tries to get people to view sex as an opportunity for shared pleasure and closeness with a partner.
What’s On the Menu?
If we saw sexuality as more of a menu, which varies with people, it might include:
- Relaxing touch (could be bath or shower together)
- Holding hands
- Sensual touch
- A long embrace
- Naked bath or shower
- Touching with “still” hands (could be hand on chest, arms around person, etc. For some people hands moving all over body can create anxiety or stress)
- No agenda pleasuring (not trying to create an orgasm, it doesn’t have to create arousal, there isn’t anything anyone’s body has to do)
- Holding each other in bed (facing each other or spooning)
- Stroking face, hair, or skin
- Erotic touching/ erotic kissing
How can you weave eroticism, sensuality and touching into your day? Without having to accomplish something or feeling bad about what your body is or isn’t doing. One’s sense of sex has to evolve with PD, other health issues, stress, and ageing. It’s important to have conversations about what the menu is, how to broaden it, and how not to be so goal focused and just enjoy each other.
Q: My husband has PD and struggles with erectile dysfunction. A lot of the time is spent focusing on him, and it can feel like I’m servicing him. When I say no, he often retreats from all physical affection, and I feel guilty. What would help us?
Start with the wife first and her own pleasure, and what would feel good to her. It makes sense she would feel left out if touch is only really focused on him. What would feel enjoyable and intimate to her?
Q: I haven’t been able to achieve an orgasm since being diagnosed with PD, what can I do?
This is totally normal, though that’s not comforting! Struggling with orgasm happens for many of us as we age, but is especially true for people with PD, and can be related to the medications they are on. It’s important to see it in this light. If you don’t have the goal of having an orgasm, you can be more gentle and relaxed and find more arousal in the process. Hopefully there can be more enjoyment. Sometimes orgasm happens when we are more relaxed, but having the goal being feeling close and connected can take the pressure off of whether it happens or not.
Q: What about sex toys? Especially for someone struggling with arousal or orgasm?
For some people, using a sex toy (such as a vibrator or a dildo) may be helpful in creating pleasure. If the goal is to create pleasure, whatever helps is welcome. Another thing to consider is medication and on/ off times, and when you feel your best. Your best time may not be bedtime, when we often think of sexuality happening.
Be Patient With Each Other
- Being patient in general with your partner or spouse supports a good relationship, especially now.
- Sexually we need to be patient with ourselves and our partner (self compassion)
- Enjoy where you are rather than where you want to go. (rather than what you think you should be feeling or doing)
Empty Your Frustration Tank
When our frustration/ anger tank is full, we don’t always realize this, and it can blow up.
Doing things on a regular basis to help things not get to that point may include:
- Talk to a friend (or a social worker)
- Writing/ journaling
- Physical Activity
- Doing things you enjoy
- Taking a break on a regular basis
Take Home Quiz
- What is working well in our relationship? (not a lot of couples talk about this)
- What could we do to create more intimacy? (physically and emotionally)
- My favorite way you express physical intimacy is….(the partner may not even realize)
- One thing I would like more of is…
Couples often don’t have the tools to talk about their relationships, but with PD you may need to have “uncomfortable conversations” around intimacy that you’ve never had before. This is a marathon not a spring, want to make sure we are our best selves with each other.
Q: Dating feels next to impossible with PD, I feel like no one will want to be intimate with me.
May not put on your online profile, but talk about in your first date. It’s important to recognize dating with PD is challenging, but important to talk about what you are looking for. Look for other non-sexual intimacy as well, so that it doesn’t all fall on a relationship/ dating. This might be hugs from family and friends, massage, etc. Also, self/ solo pleasuring is a great option as well.
Q: What about “sandwich” caregivers (caring for a parent with PD, as well as caring for children) who are feeling exhausted and having their intimate lives impacted by all the caregiving?
Try to simplify as much as possible. We often try to keep our lives moving and juggle things the way we did before, when things have changed, our parent has gotten sicker, or our kids are now home, but this is a new normal. Where can you take some shortcuts or say no to some things so that you can be more grounded and take better care of yourself before trying to help someone else? We don’t tend to do that when everyone needs us, but it’s important and you will be more efficient and more loving by doing so.
Q: If someone is having physical issues such as erectile dysfunction or hyper sexuality that is related to PD, how do you recommend someone bring these questions to their doctor?
Write down what you want to ask so you don’t forget, and start with those questions at the appointment. The doctors are treating your whole person, and sexuality is part of that. If it’s helpful maybe you want to practice bringing up these questions ahead of time. Since it could be medication related, the doctor is the right person to talk to about these issues.
Resources (non PD specific)
Sexual Intelligence by Marti Klien
Naked At Our Age Joan Kreis