Ok, so I was already registered here but decided to make a new account to ensure real confidentiality (read on as I will be very open!)
I was diagnosed about 5 years back aged 52 and progression slow and not severe. My wife was at that time slightly less interested in sex but in the past three years it went from infrequent to zero. Not even a hug or cuddle or encouragement for me to play with myself. Ostensibly menopause and mild depression being her issues. but she won’t really talk about it and bats off getting counselling.
As a normally sexed bloke this is hard. I have had a couple of affairs for the pleasure of someone kissing me and showing desire, and currently have one I am seeing and one I am chatting to. If I am honest I have always been one to stray easily although not to this extent
I know that all sounds terrible to those of you with a moral high point, but I cannot bear the thought of zero sex for the next 30 years. Porn and hand jobs doesn’t do it for me properly
I am on a decent dose of co-careldopa (sinemet plus) - is that the cause? Or I am ajust a greedy selfish sod?
Really just wanted to get a friendly non-judgy input from knowledgeable strangers!
and by the way thanks to the moderators for their understanding. Being a new account it needs checking, and in view of the subject I anticipated some judginess
thanks for your reply Kath. Interesting about the smell thing. The only thing we have noticed is that my already feeble sense of smell has got worse. My wife has not mentioned me smelling different, or tasting, but there has been no attempt at taste if you get my drift.
I am not sure if the Sinemet is causing any of this. If it isn’t I guess it could just be a reaction to three years of no sex (or more specifically no affection/desire - I think I could cope with the no sex if she encouraged me to do other sexual things knowing it was important.) As it stands I will have to just continue as I am…
I’m glad that you you’ve 'already received some advice from Kath, I know this can be quite awkward to talk about. Based on the information you’ve shared, I think you and your wife could benefit from couples therapy to improve the communication between you both.
If you think counselling may help, ask your GP if there are services available in your area, or contact your local Relate centre. They’ll advise you what they charge and how they may be able to help if payment is an issue. For more information on this, you can visit our website here: https://www.parkinsons.org.uk/information-and-support/relationships-and-parkinsons-support-you.
Additionally, impulsive and compulsive behaviours are a possible side effect of some Parkinson’s drugs. You might be experiencing hypersexuality - this is a focus on sexual feelings and thoughts.
Sexual impulses become more intense and might be felt at inappropriate times and towards people other than a partner. Some people may experience a change in sexual orientation or there could be a risk that someone will behave in way that’s socially unacceptable. You can find more information on this via our website here: https://www.parkinsons.org.uk/information-and-support/impulsive-and-compulsive-behaviours-parkinsons.
Our helpline and Parkinson’s local advisers are here to answer any questions you may have so do give us a call on 0808 800 0303.
Hi Jonny, this is certainly a subject which needs more discussion, it’s not something I’ve seen covered elsewhere. Thanks for shining the light on this sensitive subject.
Hi Jon I just wanted to say thanks for bringing attention to this (May be a British thing?)Anyway your story is almost exactly what I am experiencing right now (minus the extra marital bit.I can’t see a way forward with this myself so it ill be interesting to see what others say
Cheers
@Gaz in your case have you tried discussing with your partner? What does she (or he) respond, or is it just batted away like mine?
And do you think medication related? My feeling is there are three possibilities
1 Drug side effect
2 natural desperation after 3+ years of nothing
3 The onset of PD in my 50s prompting me to throw caution to the wind as life is too short etc
I had been diagnosed with PD in July 2013. My wife just said out of the blue no more sex, I had not done bad. She was going to concentrate on her sewing hobby and I could take up model making. I said I was not going to be a monk. 7 years down the line we have not had any physical contact, no discussions just skate around the subject. I would feel very guilty if I was to have an affair. It feels like we have separate lives now and just tolerate each other we are both in our late 60’s and looking at 48 years marriage this year. I visit the various x-rated web sites now and then (I do not think this is drug related). Keep busy with a couple of hobbies from my younger days model railways and vintage guitars.
I’m really sorry to hear that you have been experiencing intimacy issues in your marriage, this isn’t uncommon for people with Parkinson’s and there are a lot of members on the forum who understand exactly what you’re going through. As well as the forum, there are professionals that you can turn to for advice and support including relationship counsellors, pychosexual therapy or speaking to a Parkinson’s specialist. We have more information on this on our website here: https://www.parkinsons.org.uk/information-and-support/relationships-and-parkinsons-support-you
I would encourage you to first speak to your GP about this. Parkinson’s nurses also provide expert advice and support to people with Parkinson’s. They’re used to dealing with anxieties about sex and relationships. We have a team of fantastic advisers via our confidential helpline who have a lot of experience dealing with issues like this and would be happy to support you on this. Please give us a call on 0808 800 0303 or email us at [email protected].
It’s called “Brother and sister” syndrome…
When you have no sexual feeling for your partner but Still live together.
It works well for a lot of people
Hubby
This is so common regardless of Parkinson’s. The common theme is a lady of a certain age starts to experience the effects of Menopause. Their world is thrown into turmoil and a common result is Men on Pause.
The Menopause has many different effects and treatments, some of which have potentially life threatening side effects. With or without meds Women are left feeling uncomfortable through hot flushes and pain during sex due to dryness. These are just two common effects. There are many others that impact on their mood and self esteem. Ask your wife about how the Menopause affects them.
Now add in their partner being diagnosed with Parkinson’s. It hardly surprising that many wives see the whole situation as their cue to do what they know and see the carer role as a nurture role, and that excludes sex for them and you as a result.
So in the early days of earlier onset Parkinson’s your mobility is less of an issue and the meds can make you feel almost normal. These meds tend to be dopamine or dopamine agonists, both of which have side effects that make you less in control of your inhibited desires. These desires may be sex, spending, gambling, hobby related.
You need to recognise what desire has become more uninhibited for you and talk to your doctor, and partner about how to keep track of things and how your meds can be altered.
There’s so much more I could add. Start with your doctor and the meds review. Then discuss with your wife how you still desire her and go carefully and slowly from there.
Hi
I’m a wife of a PD hubby and tbh feel very much the way your good lady does.
No, I’m not menopausal, hopefully along way away from that, but tbh, the thought of having sex after a day working, looking after hubby and kids, the change in him -physically and mentally- doesnt really put me in the mood. The meds do change him in that department, his desires etc, and it puts me off.
For a woman, the body and mind have to be in the same place.
Try and talk to her and really listen to what she has to say, ask her the questions to see if it/ur desires etc are too much. The responses might be tough to hear, but just talking about it might be the start of the situation normalizing.
10kmk
Thank you for the balance your comments have added. It has reminded me that a PWP’s body smell is apparently affected, not that we can smell it. This must affect your pheromones, which I’ve read are a critical part of another person’s subconscious attraction to you. Or conscious if you don’t shower regularly.
Suddenly taking 2+ showers a day without discussions with your partner, could cause suspicions over your actions though.
Hi Jonny. Thanks for explaining what it’s like for you. This is my first post and it helps to hear what it’s like for other people. My husband was diagnosed with PD 4 years ago. He’s 78. We’ve had a thriving, very communicative sex life for the 30 years we’ve been together - and haven’t needed or wanted to talk to anyone else about it. Now, it is so difficult, I feel disturbed, upset, emotionally blackmailed, tired, compromised. My dear husband wants sex pretty much all the time. Cuddling - which I need a lot, especially at the moment! - is impossible without it quickly becoming sexual, so either I go with it, or gently refuse which leads to days of moodiness and verbal aggression. It’s as if he is tormented by sexual need. We have talked about it a lot and arrived at agreements but he finds it difficult to stick to. I don’t want to let him down - he’s losing so much else in his life, like being able to walk, being able to read. It’s crap for him. But I don’t seem to be able to get it right. he wants passion, not patronising. We both hate the thought of talking to anyone else for help but now I’m writing this with him in the next room. There’s more, but later …
Mandy, sorry to hear that. You are a slightly different position but similar problems. my situation as described above has not changed really but I don’t think that I have obsessive sex like some people do
Thanks Jonny. I’ve read quite a few more posts about this since I wrote last week. It seems that lots of people have concluded from experience that the hypersexuality is brought on by certain PD medication - and that changing the meds should help. However, I don’t think my husband sees his constant obsession with sex as a problem. I think he’s pleased that his libido is so strong at his age and that it’s me that is the problem for not joining him at the same rate, how can I not, it’s one of the few pleasures he has left etc. He never used to be critical or manipulative like this and we had what felt to me - and I think (?) to him a pretty balanced carry on.
I think he’d take any suggestion that his meds are changed in order to suppress his urges as a sort of attempt at chemical castration.
What do you think ? Maybe I should just put up with it, do my best to keep him happy-ish.[quote=“jonny2020, post:18, topic:22656, full:true”]
Mandy, sorry to hear that. You are a slightly different position but similar problems. my situation as described above has not changed really but I don’t think that I have obsessive sex like some people do
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