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Topic uncharacteristic secret sexual stuff Go to previous topic Go to next topic Go to higher level

By hug2000 On 2012.02.23 01:18
I can't sleep, I have a long day at work tomorrow, I haven't slept for the two previous nights because I am so upset and disgusted and I can't tell anyone. But I found this here goes. My husband with PD is alone during the days because I still work, but he still drives, and does a few things. But I have come home on several occasions to find evidence of peculiar things, like women's underwear, nipple clip things, things I think you stick in your bottom...this stuff seems disgusting and perverted to me. But I have read that different responses occur with this disease, and the medication, such as increase in gambling, and sometimes it's sexual stuff. I don't know what he does to pleasure himself during the day and I don't want to know, but because of cognitive losses I think he forgets to hide it and I find it and I am just heartsick and disgusted. I work really hard and that helps me a lot and I love my work, I see a therapist about twice a month and I have alluded to this stuff but not in any detail because I am ashamed for my husband, and yet this feels like way too much for me to carry, but I can't tell anyone. I really can't see myself telling this to anyone. Plain old masturbating is one thing, but this other stuff seems , well, disgusting to me. I don't even want to kiss him and I don't feel loving towards him although I am always kind to him and I do know that I can't even begin to understand what he is going through with this disease. I feel sorry and sympathic towards him although these "discoveries" are eroding that feeling quickly. It's worst at night when I can't sleep and just wish I had someone to talk to. So if you read this and respond, I would be grateful and thanks for listening. I feel better already.

By susger8 On 2012.02.23 07:33
This is a difficult topic and I can tell it's not easy for you to bring it up. This is not unusual for people with PD. It is often, maybe usually, related to the PD medications. In particular, the dopamine agonists (Requip and Mirapex) sometimes cause obsessive behaviors, such as looking at porn, gambling, compusive shopping, etc. If your husband is on either of these meds, you might discuss with his neurologist whether he could discontinue them. (Gradually, going off cold turkey is NOT a good idea.)

One of the major issues with these behaviors is that the person with PD often is spending large amounts of money that the spouse or other family members may not be aware of. You should keep an eye on your charge cards and bank accounts.

I don't expect your husband is using these items on another woman? Just for his own "fun?"

My personal point of view is that people with PD have a tough life with diminishing sources of enjoyment. I found that my father had a stash of porn videos and a few items that I think were "free" with the videos, such as cock rings and lubricants. I don't care for porn but I didn't have a big problem with my dad getting some kind of pleasure from it. Not everyone feels the same way, of course, and it's difficult since this is repulsive for you. And I imagine it would be a very different matter for a spouse versus a parent.

You know, many people here who are caring for a spouse find it difficult to keep a sexual relationship going, while the caregiver becomes almost more like a parent than a sexual partner. If you can bring yourself to discuss it with your therapist, it might be helpful. I'm sure your therapist has heard much worse things.

Best wishes to you.


By hug2000 On 2012.02.23 09:20
Thank you , Sue, I feel reassured that it is part of the disease/medication. And, maybe I can supress my anger and upset. I would like to scream and cry but I've never been good at expressing anger. Mostly I feel alone and hopeless. My marriage to him is a second marriage, we are in our 60's but have only been married 9 years and he was diagnosed 6 years ago. I don't resent him, but I do feel trapped in this life, and you are right, he is no longer a partner and I do feel like a parent. I love him, but like a child. For example, you don't yell at a baby for crying--they are just doing what babies do. And it's the same with him, how can I be mad at him when he is just doing what people with PD do, and for the most part he is doing his best. I just feel so alone. I will bring this up with my shrink. Thanks for your supportive reply.

By jaxrock On 2012.02.23 12:04
neuro took my husband off Requip........have had no such issues since...

It IS strange.....and disturbing - I don't even think my husband remembers doing some of the things he began doing.

Good Luck

By LOHENGR1N On 2012.02.23 15:54
hug2000, I agree with Sue and jaxrock as to this behavior being caused as a side-effect of Requip or Mirapex. These drugs are known as causing such. Like jaxrock said the Doctor took Him off the medicine and the behavior stopped. As Sue said weaning off the drugs would be called for if his doctor agrees to stop them quitting "cold turkey" isn't advised and can be dangerous. This problem is one recognized as stemming from the medication and not necessarily the disease itself. So to group the problem as being part of the disease/medication isn't correct and could lead to misconceptions about our diseases and the actions of all Parkinson's Disease patients. I just wanted to clear that up I hope you don't take this the wrong way as it isn't meat to be hurtful or harmful as your post wasn't meant to be either. Please keep posting and welcome to the forum we're glad to have you here and hope you will find some help, friendship and answers here. Also that you'll become comfortable and help others with your kindness and knowledge throughout your journey with this disease. Take care, best of luck and hang in there.

By phoenix On 2012.02.23 22:07
So, for those who have been taken off Requip, what can be taken in its place? My husband is down to less that half of the requip he was taking a two months ago because of nasty hallucinations, but is not doing very well at all. As for the parent/caregiver/spouse/sex thing - this is really tough, and he doesn't understand that, not his fault. I need help too.

By susger8 On 2012.02.24 07:59
Some people increase the dosage of Sinemet. My dad came off Requip when we switched neurologists, and the new neuro (bless him) felt Dad was over-medicated. We took him off everything but Sinemet and it was definitely an improvement. For older patients who have had the disease a long time, the meds lose their effectiveness and just contribute more side effects.

For younger patients, I am not sure what could be substituted. Amantadine can also contribute to confusion and hallucinations, although some people do quite well on it. Maybe some other board members can offer a suggestion.


By parkinit On 2012.02.25 14:46
Hug -
I know where you are coming from. My spouse did this, and I strongly feel it was medicine related.

I only saw sexual-related addictions - not the shopping or any other kind of addiction. His sexual addiction came as an obsession with porn sites. He had a massive number of visits per day, pledged that he wouldn't do it and two days later, he was back into excessive porn viewings.

No one has ever mentioned this, but I also wondered that too much dopamine in the system could also cause these traits. He was taking a massive amount of Sinemet when he was displaying these characteristics. Does your spouse have dyskenesia often? This could be a sign of too much dopamine in the system - pleasure seeking, pleasure loving dopamine. Check that out as well.

My best to you in this journey.

By hug2000 On 2012.02.26 14:39
Thank you so much for your response. I feell like I am ready to throw up all the time--OK maybe that's a little dramatic--but I feel like the man I married has disappeared or devolved into someone I don't like. What happened with you guys? Where are you in your journey, if you don't mind my asking.

By carefulcohen On 2012.02.27 00:40
6 years ago when my husband started Mirapex, he felt he was being 'taken over' by a different (sex obsessed) entity. He bought a book about Dybbuks (medieval Jewish quasi-myths of possession by other souls) so alien was this sexual obsession to his core identity.

By parkinit On 2012.03.01 10:33
My guy's Sinemet was reduced down to 1/3 of what he was previously taking. He also no longer takes any Mirapex or Requip. For me, this was a dark time as his obsession controlled him and it was his quest all day long. He could do other more productive things and this was what saddened me so - he wasted so many hours viewing porn when he could have been doing something much more productive for his mind and/or his body.

He is in the latter stages of PD, so this is no longer a problem.

Encouragement: This, too, shall pass. It really will. Stay strong.

By drshepard On 2012.03.13 22:10
My husband was just taken off of Requip. This drug became a disaster. On top of PD, he also has Obsessive Compulsive Disorder (OCD) and Obsessive Compulsive Personality Disorder (OCPD). While these were traits before PD, Requip had the symptoms going full speed. I once took him to the doctors with dopamine levels over the top. He gets pain in his knee when his dopamine levels are high. In a wheelchair, he clutched a plastic bag like it was the last thing that he owned. When I got home I realized that that he had hoarded belongings that include a lubricant and vibrator (God knows where he got it). And, a week ago there were contractors in the house and he had a vibrator in his shirt pocket. I did one big snatch from his pocket and he became very hostile. But, in addition to the sexual stuff, hallucinations became psyhosis that large doses of Seroquel couldn't squash, and the credit card ended up at $29,000. Good God, we'll never get it paid off.

By cmonge On 2012.03.14 21:48
My husband has had reactions from all the Parkinson's drugs, I won't go into all the lurid details but many of them are similar to the stories here. After being taken off of everything he doesn't even remember the episodes. But I do. He now takes nothing for his PD, we have decided it's just not worth it. He had DBS and we just have to be happy with the relief that has brought. We are a young couple and I too feel like I am more of a caregiver than a real wife at times. I allow myself to feel self pity and wonder how much longer this will go on. You can't help it-it's just the reality of the disease and the situation. Don't feel bad about your feelings. You are allowed to feel sorry for yourself and feel mad and disgusted. You are coping and doing the best you can.

By lpenrod50 On 2012.06.07 12:49
My husband takes Requip for restless legs. He takes Sinement and Sinement CR for his parkinsons. He also takes Lamictal and lexapro for bi-polar. He's had the compulsive gambling and he addiction to sex. He gets on porn sites and other gross and discusting sites on the computer. He does gross stuff to himself and it's always when I'm not around. He's gone outside without his pants and the police have been called to my house 3 times. He use to drive around without any pants on. He would go to strip clubs and spend money hand over fist until I took his MAC card. He probably spent at least $5,000 doing this. Since then I've taken the keys to the car. I even take the laptop when I go to work. It scares me at work every time the phone rings that it's going to be something about what he's doing at home. He never remembers this, and feels horrible afterwards. This always happens after he's on porn sites and has taken too much sinemet and has alot of dyskinesia. When we have family functions, he wants to talk sex all the time and people really shy away from him because they don't know how to take him anymore. I'm at the point where I'd rather just stay home than to take him anywhere. When he's like this he can do just about anything but when I ask him to do stuff around the house to help me out, he can't because he has parkinsons. It gets very upsetting and I find myself drifting away more and more from him. I love him. We've been married for over 40 yrs. but it's really hard to deal with this. I find myself getting shorter and shorter with him when he needs help walking, going to the bathroom, getting dressed or going to bed. We each have our own bedrooms now, so when he can sleep I don't wake him up. Lately I've been thinking of putting him somewhere so I don't have to deal with him anymore but when it came down to it, I don't think I could. Has anyone else had to deal with this obsession with sex like this? I've told him that I feel like his mother more than his wife. Thanks for reading this. It helps to know that I'm not alone.

By lurkingforacure On 2012.06.07 14:34
Not the sex stuff so much, thank heavens, but I had to respond as your comments about not having energy to do anything but what he wants to do really hit home.

I can handle all the housework, grocery, bills, everything, not well, but I manage, but what is really hard is he has no energy for our kids. It is heartbreaking to hear our youngest clamor for daddy time and he will make every excuse. But then he will go for a walk, or bike ride, ten minutes later. Or he will play on his computer for hours. I know he needs the exercise, even the computer is good for the finger dexterity. I never complain, but the kids see that daddy won't do shit with them but can go on all these walks and bike rides.

Too, I wonder if he is avoiding them on purpose. Sometimes our kids want to go with him on a walk, and he tries very hard to get them not to go. It's too late, too hot, he'll go too fast for them, it'll be too long of a walk, blah, blah, blah. They in turn pull away. Then he will have a day where all of a sudden he wants to bond and our youngest has been almost cruel in rejecting him. It's weird and horrible and yet I can't blame our kids when this person who never does anything with them suddenly wants to bond. Or if they take the bait and have a bonding session, the next day he blows them off because it's not a good time for him: his meds aren't working, he doesn't feel well, he has no energy, he didn't sleep well the night before, fill in the blank. I understand, but they don't care. They don't care WHY, they just know they are hurt again. Which translates into further distancing.

I have no idea what to do about this. It's just sad and draining. Summer being here makes it so much worse because everyone is home.

By parkinit On 2012.06.10 16:17
I have to say that my spouse was diagnosed with OCD about other things as well, too.

Also, in a past post, I mentioned he is in the latter stages and I thought he no longer dabbled in the porn stuff, but lately he has been again. He quickly shuts down the computer when I enter the room, but I often see what is on his screen. It saddens me. Yes, I thought this was behind us.

Over the past several months he has been taking the dopamine agonist transdermal patch, Neupro. I have to guess that it is giving the same effect as the other agonists.

Darn, I thought this was behind us.

By LOHENGR1N On 2012.06.10 23:22
parkinit, unfortunately yes it will have the same side-effects as other agonists. The medicine is an agonist, the delivery system is different but the drug belongs to the same class of drugs (agonists). I know this doesn't help correct anything for you or your husband but I just wanted to confirm your conclusion. It would really help if the Doctors would tell you these things right up front and not leave for you to find out afterward! Take care, best of luck and hang in there!

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