How has Parkinson’s affected your intimacy with your partner?

[Woodyoneshoe]

Yes Parkinsons has very much affected the intimacy level. My wife has become massively more close.I, being the one with PD, often wake in the morning with her doing some sexual thing to me. It’s fab and she’s like this as she feels I’m changing in other ways and she wants to help me feel as long as possible. Rock on I say!!

[Ally]

I’m so glad you and your wife are staying connected to each other!

[StarsUpstream]

My only partner is government cyberpeep who tortured me horribly and misused me in cruel and unusual ways. I assume it gives them full throated gurgle and infinite gloat.

[Alan M]

I’m gonna jump into the deep end with this issue, Ally. Thanks for asking… I’m 69 years young and to be honest, wasn’t counting on being robbed of intimacy this early in my marriage. I’ve since learned that <b style=”background-color: var(–bb-content-background-color); font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>erectile dysfunction (ED) is the most common sexual problem for men with Parkinson’s. Medication side effects, progressing disease and non-motor symptoms, such as anxiety or apathy, has the propensity to decrease sex drives negatively, and most importantly for men can effect erections and/or the man’s ability to even have an orgasm. As anxiety / depression commonly occurs with ED, I am left trying to treat the comorbid depression I’m currently experiencing. In my case, I’ve had little success so far.

My partner and I have lived in a committed relationship for decades. The fact that we have shared our life together like we did suggests we’ve at least considered, if not deeply explored, this very important subject. As a relationship therapist, I’ve known that when a couple stops communicating about said issues, it’s not because they’ve hashed it all out, but rather, it’s because what’s left to discuss is far too important! This is especially true when it comes to our sex life.

I’ve discovered that Parkinson’s disease has the potential to redefine who I am, or who I’m becoming — and, by extension, seems to define the parameters of our marital relationship (it messes with it). Recognizing that the disease is outside the intimate relationship, goes a long way toward keeping us closely bonded. I found the following post helpful in dealing with my own issues (I can’t speak for my spouse):

https://www.apdaparkinson.org/what-is-parkinsons/symptoms/sexual-effects/

I believe I have become angry, frustrated, vexed and dismayed with circumstances caused by this wretched disease, from physical symptoms to various stressors, thereby keeping the focus on the disease, not the persons who are affected it. The necessary things we have to do to manage my illness, such as going to doctors’ appointments and attending individual therapy sessions, has NOT become all we do together.

Me and my spouse see our therapists individually. My therapist has kept me abreast of certain webinars like the one noted below:

https://www.apdaparkinson.org/webinar/spotlight-parkinsons-disease-communication-intimacy/

What worries me most is that I’m afraid my wife might gradually become more of a carer, rather than my sexual partner. We haven’t had sex over the last 11 months. Don’t misunderstand, this isn’t ONLY about our sex life, though that’s a big part of our intimate connection from my perspective. I’ve had to confront certain losses, including some that go beyond just having sex. The disease has drastically changed how I (and maybe even we) imagined our intimate life together would play out.

I’ve become keenly aware how important talking through these losses are. Communication is extremely important for all human relationships. In terms of our sexual relationship, we always try to be open, honest, transparent, sensitive and experimental. I’d like to try to find ways to be sexual with my spouse without always involving the physical act. My spouse doesn’t seem at all interested in this approach, however. Sex Therapists are far too expensive at our stage (epoch) in our life. Sad.

apdaparkinson.org

Sexual Effects of Parkinson's | APDA

Parkinson's can affect sexual response and functioning, including imparied sexual coordination, vaginal dryness, ED, and inability to climax.

[RosemaryG]

Thank you Alan for your thoughtful and honest response. My partner (81) was diagnosed 2 years ago. Sex was always a big thing for him although he has had ED for a number of years but we found ways to be intimate. In the last 6 months he has lost linterest in intimacy and it’s hard not to think he has lost interest in me, although he says it’s not the case. He is very loving but I miss that aspect of our relationship. It’s made more difficult by the fact that we are long distance and we have to adjust each time we are together. He’s too embarrassed to talk to his physician or a therapist and I don’t want to add to the PD stress. I assure him that I still feel the same way about him but I’m not ready to give up. I believe that the dopamine loss is responsible for not getting a rush of desire and there isn’t much I can do but keep supporting and reassuring him.

[Ally]

Thank you for sharing, Rosemary. Your situation sounds very challenging and I hope that with your encouragement, your partner can seek some outside help so that you both feel better about the state of intimacy in your relationship. Thank you for opening up and sharing so honestly in response to my question.

[Ally]

Thank you for sharing your experience, Alan. The perspective and information you provided will surely help others in this forum community. I personally really appreciated your emphasis on intimacy being only in part sexual, and your encouragement around seeking outside individual help from a therapist. Many people struggle to talk about this topic with their partner, and I appreciate you opening up publicly so that others can learn and (probably in many cases) feel less alone in their experience, too.

[Lynch]

HWP is still very wanting of sex. Me? nope, just cuddling would be very nice. He has had since the diagnosis-ED but always chasing. Once the effects became so much, with my post menopause and his PD, I feel like a room mate. We go nowhere, do nothing, go to bed early. A) retirement was not supposed to be this way for me, and B) just watch tv or computer all day/night. With his PD he can’t absorb loud noises, bright lights-daylight, violence and crazy shows or movies. He eats very little and has an erratic eating which the moment he does, he freezes-meds stop working.
My .02 worth. Good luck to you all.

[RosemaryG]

I found your reply very interesting as my partner also can’t stand bright lights, noise or overstimulation, which means we don’t go out at night, or to restaurants as he gets overwhelmed easily. We tried going away to a resort and he only lasted one night before he wanted to go home . We were never party animals but life has been dialed back dramatically. It’s an aspect of PD that you don’t see mentioned.