Sex and intimacy with Parkinsons?

[Ally]

Hi Toni, I couldn’t agree more. I think some doctors feel uncomfortable broaching the subject (which is weird to me – it’s perfectly natural and human to be sexually active) and want to wait for the patient to make the first move. I found this article online, which may help you start the conversation, if you haven’t already.

The National Institute on Aging also has some resources online about sexuality in later life.

Hopefully others will share their experience and recommendations, too. Thanks for raising this important topic.

[Lori DePorter]

There are some resources as

well….

 

https://www.michaeljfox.org/search

https://davisphinneyfoundation.org/?s=Intimacy+

 

[Toni Shapiro]

Thank you Ally and Lori.  I appreciate the information and you taking the time to reply.  I am aware of some of what you have recommended and I will be watching a new one from Parkinsons Society BC, CA on Feb 17. I believe it is open to everyone.

Rather than see another webinar or read another article I was hoping some people would share their personal stories here but so far I have been disappointed.  I understand it may be too personal.

 

[JB]

Hi Toni,

My husband is 59, Young Onset PD….. and I agree it’s interesting that it never comes up in conversation either with our Neurologist on the irregular visits we have or with anyone else (which is normal I think).   I do update her how things are going though with our sex life, and then we discuss, so it is nice to do that.  She has suggested some medications to help in the past, but we really don’t want to add more meds to an already over ‘med’d’ situation.

I have found over the past 20 years, that our sex life has become less by quite some.  What is part of normal aging vs Parkinsons is an interesting question though?  I’ve been encouraged and discouraged by the way Parkinsons OR the meds cause different issues with our sex life though.

Also you mentioned Rejection… that definitely for me, being the non-PD in our relationship, was really difficult for a time until we started to really deeply talk about how things affected him, physically and mentally…. and me putting away my precious ego I suppose, thinking it was me, when it really wasn’t and isn’t.

We don’t think Sinemet CR 200/50 or 100/25 affects it.  Anti depressants definitely have an effect so he is not on any now for 7 years.  But as much as we feel the PD meds don’t interfere particularly with his interest in sex, over the past few years the cognition does.  Distraction is a huge thing for us, where he needs to be fully ON and focused.  Spontaneous sex you would think would be out of the question, but in reality it’s the only way for it to happen, as in when he is ‘ready’ mentally.   BUT in saying that, I have been able to stimulate him to be able to have sex even when he has been fast asleep, so potency is not really an issue.  Just patience.

The biggest issue is ‘staying power’ and physically nothing going on even when mentally he is interested.   The body just does not want to co-operate.  😉  Again patience is THE only thing to do for us or wait another day.

As I mentioned about aging and spontaneous sex – well that’s not <span style=”text-decoration: underline;”>always</span> so easy for women to just be ready, well I have found that anyway.  Our bodies change after it seems age 50.   That was a bit of a shocker, it seemed to be like a light switch.  The whole saying “if you don’t use it you lose it” seems to not be a phenomenon after all darn it.

Anyway – there are ways around that as we all know and it works well… but as I say, I feel, or we feel that if the desire is still there, and the love then there is no reason a good healthy sex life cannot be achieved.  Definitely not as many times as when we were younger, but hey, it really doesn’t matter.  One intimate moment can be enough, and should be enough, whenever that is, when you love someone and at some point there could possibly be no more actual ‘intercourse’, and if that happens, then we will deal with it at the time.   Good old fashioned talk goes a long way too, as does just touching and holding someone you care for.  So many options in reality isn’t there…

The other thing that causes an issue is the ACTUAL PD – the movement degeneration.   Getting the right movement started being an issue, so then of course you need to get more adventurous so that what you are doing is not putting undue pressure on the other to perform… Probably high wire acts are out of the question for example…. sorry only joking… it can be a hilarious subject actually can’t it, if someone can talk about it uninhibited).

I will leave it at that… I’m not sure if that helps at all…. but I can only say –  never give up, and also never put pressure on the other person, that definitely doesn’t help.. understanding and patience and BEING ABLE TO TALK ABOUT IT.

P.S.  You haven’t mentioned whether you are married or on your own, but I hope my answer covers both.

[Alan M]

Kia Ora JB! I just wanted to say how much I appreciated your forum post back in early Feb.  I most appreciated your perspectives on PD, sex and males vs. females.  Equally the issues of spontaneity and ‘staying power’ stood out for me.

Reading your statement “I say, I feel, or we feel that if the desire is still there, and the love then there is no reason a good healthy sex life cannot be achieved.  Definitely not as many times as when we were younger, but hey, it really doesn’t matter” brought a broad smile of gratitude to my face.

Can a healthy couple arrive at a compromise in terms of frequency in your experience?  How did you and your spouse do this, if so?

[Barbara Ernest]

My wife had PD for over two decades and recently passed away from a fall. My wife enjoyed sex and intimacy until she passed away at age 78.  But things did change over those PD years. Her mobility affected the types of intimacy she was capable of without getting into specifics. In fact, to my surprise about two months before her passing she out of the blue asked me if I was interested in some “playtime”.  So her desire was still there. I think at that point I noticed the physical effects of the disease took over.

[Mary Beth Skylis]

Barbara,

I’m so sorry for your loss. I can’t imagine how difficult it must be. But I’m glad that you were able to maintain a connection all the way until the end. I hope you’re doing well.

[Marie]

My husband was having erectile issues before he was diagnosed. And I read in article from here or another Parkinson’s source I get emailed, that ED early on could be a precursor to Parkinson’s. And then diagnosis at 48. So for us along the way we have had issues. Not to mention I lost my desire along the way. We still have moments of intimacy, here and there. Fortunately we find lots of reasons to laugh. I do not know if he and his doctor discussed our particular sex life, but I do know the subject came up, as he would tell me of some of the conversations they had at appointments, so he may have discussed.

[JB]

I think that is the thing Marie, isn’t it…..  there are so many amazing ways to connect, it doesn’t have to be purely sex, as laughter is absolutely one of the most amazing stimulants in my opinion.   It’s how my husband and I met, through laughter and smiles….Ha… nice thinking back on those times and realising how important it still is….

[CJ]

Hello to all,

Appreciate the discussion points and the topics raised – please carry on as extremely helpful. I am a 59r and was diagnosed four years ago and find the whole topic very real, and difficult to get much help from physicians that can help. ED has been an increasing problem, at first not even aware, but now it is a problem –  I have done extensive research with a  list of successful and what is not, including some that are definitely left of Centre!!

Keep up the comments. Thanks very much.

[Philip Margaret]

“I have done extensive research with a  list of successful and what is not, including some that are definitely left of Centre!!”

By all means, please give us the benefit of what you have learned and the best approaches to successfully dealing with and overcoming ED.

Thank you,

Philip

[CJ]

Sorry for the slow reply been busy; what I found after a lot of research and some recommendations from some Parkinson’s columns was the use of a Cage; I wear it every night, and my partner assists with the fitting + the odd diversion, and it works 100%  with all-night sleep, seems as the drugs used for restless legs upset the balance, and then you are awoken multiple times a night.  Just the fact of a better sleep pattern helps everything!

[Alan M]

To Toni and JB,

Allow me first to express my gratitude for your bravery and openness in broaching this sensitive topic!  Most peeps avoid it like the plague.  As a former therapist, I found clients shy away from sexuality as a theme, unless you happen to be a practicing sex therapist.

I’m 67 years young and am still very sexually active.  However, 2 years ago PD robbed me of my ability to be intimate with my spouse.  I saw my GP and he prescribed Vidafil (100mg) which at least allows me to attain an erection.  I reckon Marie is correct — PE & ED started up about 5 years ago (2.5 years post-diagnosis) in my scenario as well.

I have a friend overseas that suffered the ravages of Testicular Cancer (which became systemic).  He complains that ever since the medicos treated him, his partner lost all interest in sex.  He claims he’s had sex once in 8 years!  I’m noticing my partner is wanting sex less & less these days, as well.  Her reasoning is that she can’t be spontaneous and because she works nights (6pm to 2am).  She knackered in the mornings and occasional “afternoon delight” doesn’t seem to do it for her.

I don’t know so much if my spouse would rather be doing laundry than sharing intimate time together with me.  We strive for diligence in keeping our lines of communication open.  Mainly to do with our kids… but since I started expressing my feelings of loneliness to her, our more recent dialogues have been about how we connect (or don’t connect, to be more precise).  I remember some advice given to me by a therapy mentor I once had — he told me to look out for couples that “stop talking”.   He suggested that if two people stop D & M conversations, it’s not because they’re all talked out.  It’s not that they can read one another’s mind.  It’s because WHAT’S LEFT TO TALK ABOUT IS FAR TOO IMPORTANT.  I try to remember his sage words.

Has anyone encountered John Gray’s notion of “Love Languages” (LL)?   When he first started sprouking this notion down under, I assumed it was a bunch of hogwash (just another idea to sell more books).  But lately, I’m wondering if my LL isn’t ‘works of service’ and ‘touch’.  I do many things to help my spouse, as a way of showing her I love her.  And then I seek affectionate touch from her in return, as a way of confirming she does love me.  I see our sexuality as one of the (important) ways we can express our love for one another.  Cuddling, sharing our deepest intimate desires, imaging our futures, and seeking the physicality of coitus are also ways that speak to me – but maybe not so much to my spouse.

Lately, I’ve also been wondering if I love my boys more than my partner I love one another… but I cannot say for sure they feel all that close to me.  Try as I might to be the best Dad I can for them, I fail to see how my efforts are perceived by them.  This may well result from my own insecurities, I reckon.  I’ve always feared that I shot myself in the foot by not having more people in my life to connect with and share my deepest fears with.  As an ASpie, I’ve always struggled to make close friends.  And in keeping previous marriages together.  I’ve been known to have more than a few acquaintances but have always kept folks at “arm’s length”.  I’ve been bullied and pushed around by lots of folk in my life, mainly because they saw me as different.  Strange, even.

Sex has always been the way I’ve tried staying close with previous partners.  I understood it as the “glue” of closeness and intimacy.  When this glue dissolves, it’s hard to re-cement the connection, I reckon.  I’m sure as we live together for decades with our respective partners, our closest relations with them shift from “symbiotic” (seeking our sameness) to “differentiated” (sharing our differences).  Does any of this drivel make any sense?  Thanks very much for “listening” to my rambling.

[Timothy Zeddies]

I’m 72 and I’m not dead yet either. I was diagnosed 7 years ago (although my first tremors probably appeared 2 years before that). However, our sex lives are probably more influenced by aging than by PD. My wife (and I know I am a lucky man) wants to have sex, as do I, and is able to do so, as am I. It’s not as spontaneous as in our younger years—we set aside time for it, not just jumping into bed at night. I make sure to take my Sildinafil. It’s intimate, delightful, and we are both grateful we love and want each other so much.  This seems different from the experience of many, with and without PD.  My neurologist never asks if I’m “sexually active”, although since my PCP knows I am and the Sildinafil is in my chart, perhaps he doesn’t feel a need to. I totally agree that our health providers should take more of an interest in this—I think it’s an important part of mental health, which is even more important for PD—and it’s disappointing that they don’t seem to, usually. Thanks to all the above folks who shared their intimate lives—I feel for those for whom this is a problem—because communication is everything.

[Simmon Belka]

intersting

[Ron Lusk]

About 8 years ago I started to have ED problems and several things the urologist tried did not work until he gave an implant that I pump up an erection and keep it up as long as we want – hours/days. Unfortunately, about the time I got PD, my wife came down with breast cancer.  After many infections and 6 surgeries she ended with painful scars and that ended the sex.

[Darrell Hutto]

My partner and I have some issues in the bedroom. She is all woman and we have had really good sex until recently. I am 76 and she is a little younger. She has issues with pain that is not handled well by her PD meds and it has led to vaginal pain during sex. We have tried lotions which helps but not completely. Just wanted to know if there may something else that we can try.

[Bruce Closser]

Have you discussed estrogen with her doctor? That was very successful for my wife.

[JB]

I agree with Bruce that Estrogen products used for a few weeks can help some people. We have found that a product called Sensi-lube is fantastic. It’s like natural fluid / excretions that we as women normally have when younger. I recommend you try if you can get it. Normally from pharmacies or online around 7.00 Euro per item. Use lots of it on whatever or wherever you need…. Good luck.

[Bruce Closser]

I appreciate this forum topic, which I don’t think has received proper attention. I am a 78-year-old male who still has a pretty strong sex drive. My spouse died recently from Parkinson’s Disease. She had been diagnosed in 2010. I also have PD, (diagnosed 2019) which is very well controlled and does not seem to be progressing much, if at all (for which I am very grateful). She and I had an active sex life up until the last two years of her life when a series of injuries caused by falls led to hospitalizations and surgeries. The injuries eliminated her sexual desire (when your body is healing, it doesn’t have much time for sex). As she healed, her sexual desire would begin to return, but then another injury would eliminate it again.
Our neurologist was happy to answer our questions about PD and sex, but wasn’t really interested in a conversation on the topic.

[Bruce Closser]

I’ll keep trying to finish this post. System is not cooperating.

[Bruce Closser]

Still no luck in posting the rest of my response.

 

[JB]

Hi Bruce, I’m sorry to hear about the loss of your beloved recently. I won’t even try to imagine how despairing that must be. I worry about that if something ever happened to myself, how my husband with PD would cope.

I thought reading your response about your Neuro having little interest in the subject was sad. It’s such a huge part of all our lives, or was, so I’m really sad your Neuro is not comfortable to speak about it with you, or at least recommend someone to talk to about.

I’m so glad to read also that your symptoms are very well controlled. What a gift that is.
Keep smiling – and researching the subject is all I can say. I have not found anyone answers to the issues we have ( I wrote a large article above last year on the intimacy side) which you may have seen or not. The whole change in most women also with or without PD is a shocking thing to encounter. I mean who would have thought at the age of 60 that things could change so dramatically to ones body without being asked first about it. 😉
But Estrogen as you say above to Darrell I agree helps some people. I hope you have a good support network around you now your wife is not with you. x

[Bruce Closser]

Thanks, JB. I am so fortunate to have an excellent support system of family and friends. For example, I am writing this from Vail, Colorado, where I am skiing with my son and daughter-in-law.

I have been trying for weeks to post the rest of the article I started above, but with no luck. Also no response from the support desk to my messages. I hope this posts.

[Bruce Closser]

I’m going to try breaking it up into small chunks and posting each individually. Wish me luck!

[JB]

That’s wonderful to hear… very pleased you have family around and support and are enjoying some awesome outdoors fun. Bit of a shame your posting is not working. I have no idea what to tell you on how to get that to work, except maybe trying on a different computer or cell phone. Computers – they are wonderful and a scurge.

[Bruce Closser]

My wife was a great sex partner. However, the first PD-related sexual problem we encountered was mine. For the first time in my life I experienced erectile dysfunction (ED). Our neurologist told me that unfortunately, this is a common effect of PD, but that it usually responded well to conventional treatment.

[Jose]

All comments are excellent. My comments are not meant to detract from the seriousness of the conversation. I am 73 and was diagnosed with Parkinson three years ago. I believe what I have read many times that among other things, good sleep, good diet, and exercise as much as possible may be of value to slow down the progression of our ailment. Being intimate with our partner/soulmate, getting into a good mood, smiling, and enjoying good humor are also important.
Without wanting to make light of our shared illness and this post, I wish to tell you that since my Parkinson diagnosis my beautiful caring wife and I can only engage in one sexual position: doggy style: I beg; she rolls over and plays dead!
I hope I brought a smile to you! Keep moving!!