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    • #23157
      Toni Shapiro
      Participant

      Hi, I see very little about Parkinsons and sexual health and intimacy in this forum other than how to start a conversation about it with your doctor.  I have had two good neurologists and an excellent GP however none have ever asked me about my sex life.  I am 73 but not dead yet and think it’s an important topic for discussion.  Intimacy is a big part of me feeling good about myself. I am interested to know how people handle rejection and what they find helpful dealing with sexual issues.

    • #23160
      Ally
      Keymaster

      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.

    • #23167
      Lori DePorter
      Participant
    • #23183
      Toni Shapiro
      Participant

      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.

       

    • #23189
      JB
      Participant

      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.

    • #23192
      Barbara Ernest
      Participant

      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.

      • #23195
        Mary Beth Skylis
        Moderator

        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.

    • #23193
      Marie
      Participant

      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.

      • #23197
        JB
        Participant

        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….

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