For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in


Topic How PD Has Changed Our Relationship Go to previous topic Go to next topic Go to higher level

By mytngenes On 2010.04.20 22:54
I am struggling with the affect Parkinsons has had on my relationship with my husband (he is the PD patient, I am the caregiver). He has been dx' since the age of 46 in 1998. No tremor, his main symptoms are stiffness, pain, weakness, freezing up and his autonomic systems are affected (low blood pressure, excessive sweating, trouble breathing, incontinence, impotence, constitpation, etc) and DBS in 2006. I mention this to give you a picture of how Parkinsons is affecting him physically. But not only physically, but emotionally and behavorially as well. I mention these to give you a better understanding of what we are dealing with.

My problem is of a highly sensitive nature, one you may feel uncomfortable discussing on a forum. If so, please feel free to email me (sjdraper56@hotmail.com).

For the past 2-3 yrs I have seen our relationship changing from that of husband and wife to more of a parent/child. And this is affecting everything. He feels I am bossy, a dictator making all the "rules" and I feel like his mother-cleaning up after him, making sure he takes his meds, handling all the household matters, making the decisions and working full-time.

The biggest problem area is in the bedroom. For the sake of propriety, let me just say there is no action going on there or anywhere else for that matter. And the problem is me more so than him (although he is impotent, but the desire is very strong). My desire level is a big fat ZERO-nada. My love for him is still very strong after 33yrs-afterall, he's the love of my life, the one I promised "to death do us part". But at the same time, he's not the same person/I'm not the same person. Its hard to put into words.

Am I alone in this? If not, and you are facing the same problem, please help me know how you handle it. For I do a terrible job of handling it--many many heated discussions and sulking moments. He just refuses to accept the fact that I am no longer interested in a sexual relationship-our roles have changed, neither of us are the same person we were pre-PD, and the situation is getting worse. I've seen a counselor about this, but nothing has really helped me to understand or conquer this lack of desire. I thought that perhaps I'm not the only spousal caregiver who is feeling this way.

Thank you for your help and understanding.

By LOHENGR1N On 2010.04.21 00:02
mytngenes, Welcome to the forum, I'm sure someone here can help you with your problem. I'm not qualified to do that. Just one thing to keep in mind if I may consul? You mentioned you saw a counselor? It is very important to find someone who has experience with Parkinson's Disease when going to any counselor. Our (patients) brains are not functioning as a "normal" brain functions also Our medications are mind altering drugs. These facts need to be considered in any form of counseling. So it is very important that these facts are present and considered during the process. Otherwise you have two apples talking about an orange and trying to sort out what can be done to make the orange into an apple. Again welcome. Take care, best of luck and hang in there.

By Emma On 2010.04.21 05:55
mytngenes, I just want to give you a big hug and a shoulder to cry on because I know exactly what you are saying and experiencing. I have all of the same feelings that you do, I understand. This is such a hard thing to deal with because we do love our husbands and we don't want to hurt them, but at some point we start feeling more like a nurse than a wife. More like a parent than a spouse. The sexual feelings and attraction just aren't there anymore, but the love is. For me the love I feel for my husband isn't any less, in fact it's probably more, but love changes as life changes, it takes a different form and is expressed in a different way. I show my husband my love everyday by taking care of him, by comforting him, by helping him when he cannot help himself. I clean him in the bathroom, I take him to his appointments, I dress him, shave him, shower him. But sex is something I just cannot do for him anymore. Unfortunately, in our case, my husband has an obsession with sex from the meds. That just complicates and amplifies the problem; he wants to have sex all the time and I want to never have it. There is a lot of tension in our house because of this. Sometimes I feel like I am a prisoner being subjected to constant sexual badgering. Sometimes it gets to the point where I can't smile at him or hug him because he takes it as an invitation. The stress I feel from this situation is the one thing that could break me, I can handle everything else. I do understand that he wants to have the kind of intimacy that we used to have, I get that, everyone wants to feel loved. It just frustrates me that he doesn't acknowledge the love that I show every day by being here for him, and instead focuses on the one thing I don't/can't do. I have no advice for you, I just want you to know that you are not alone. Em

By packerman On 2010.04.21 10:29
[deleted]

By MJ-Camano On 2010.04.21 11:33
I have totally gone thru the same feelings, I think this is the worst part of this journey and I so wish I had found this forum 5 years ago. As the Parkinson's has progressed, his desires have slowly gone away so I am feeling more comfortable now. My feelings were very much like yours, you become a mother to your husband and you just no longer have any desires for sex and the more you refuse it, the more he wants it (even if he can no longer perform!) I also talked to a PD Counselor several times - alone and with my husband. The counselor tried to explain it to my husband and he said he had heard this many many times. I could never find it in me to overcome this, I guess part of me had to be true to myself and I could not fake it. So many times I felt like I was being stalked, harrassed, I can't even find the words to explain the feelings. But for several years all he would talk about was sex and I wasn't fulfilling my marital duties.

I so feel for you and everyother person that has gone thru this, it feels good to finally be able to talk about this. My husband is 68, he now needs someone here all the time; he has dementia and is incontinent; still can walk, needs help with dressing, meds, showering, food.

By caregivermary On 2010.04.21 16:37
My

You are definitely not alone on this one. Everything you mentioned has happen in our case. My experience now is the same as Emma's with his primary Dr. adding citalopram to his med this. The desire has diminished almost completely.

I do believe Mirapex can cause sex addiction, etc. Requip in some PDers does the same. My husb took Mirapex for about 6 years.

I was just talking with a friend today about my husb's childlike behavior. It is very difficult to make the transition from dealing with this behavior and wanted to have sex. It does seem laughable at times but other times you just want to cry. I do think PDers do not live in the world we live in. They often think they are able to do many things they remember doing when PD was not present.

At times I am so mad because most people think Parkinson's is just a mobility and shaking disease. If they only knew!

My husb is 75, has dementia, incontinent, walking a very short distance, has an aide in the morning for showering etc., extreme fatigue, headaches, and a good sense of humor.

You are not alone. Take care and stay with us.

By mrsmop On 2010.04.21 20:45
I am so glad someone brought up this sensitive subject. Even though he tried to be independent, he did not have insight into how his PD had changed our relationship. I too, felt more like a mother to a "man child" than a wife. He couldn't understand why my feelings for him had changed when I refused to have sex. Also his personal hygiene left much to be desired. Seeing that others have had this issue makes me feel less guilty, and knowing that it's not just me helps. I did try to explain to him that how we express our love changes over time, but he sure didn't buy it. Sadly, my husband who just turned 66 misjudged where the bed was in the middle of the night (as he did not sleep well), fell and broke his neck. He had a cervical neck fusion a week ago, and all of his PD symptoms have gotten much worse. I guess I woon't have to worry about sex for a while.
mrsmop

By Reflection On 2010.04.21 21:50
mytngenes: thank you for bringing this topic up, and yes, I have the same feelings. Made stronger by his utter refusal/inability (who knows which?) to take responsibility for or try to make up to me for the lengthy affair he had, fueled, perhaps, in part by requip - but who knows? The kids and I knew he was behaving oddly, but we put it down to the Parkinson's, so cut him slack - the more fools we. He got the psychiatrist who was treating him for PD depression to prescribe Viagra so he could carry on his affair, untroubled by the impotence he had in our relation for years, that I dealt with as gracefully as I could because I thought it wasn't his fault, but the Parkinson's. My, do I perhaps sound bitter?

Lohengren: Your description
"you have two apples talking about an orange and trying to sort out what can be done to make the orange into an apple" - sheer genius. Thank you.

By jburkhart On 2010.04.22 13:01
Thanks for this discussion, I also have experienced the same frustration situations. The other thing I have noticed is if my husband watched a TV show that is at all suggestive, he gets aroused. I now feel like I need to be the TV police.
Thanks for helping me not feel go guilty.

By parkinit On 2010.04.23 10:39
For many of us, you have touched a cord... My husband made me feel inadequate when HE couldn't perform. He further humiliated me by going to the Internet and viewing porn to fulfill his insatiable appetite for sex. I've found that he was also going to local dating sites. He denied this.

I chalked it up to the drugs, as I have read many cause this type of addiction. I tried to bring it up with our PD doctor and he was young and didn't want to touch the subject, so rather than state: "Let's talk about your desire to constantly go to the Internet whenever your wife is out of the room?" He simply stated something like "Do you have any other problems EITHER of you want to discuss?" I had already told the doctor I felt my husband had a sexual addiction. Of course, the PD patient never see this as an addiction. You are torn between being mad at them and then knowing it is probably the meds, etc. He purchased pumps, prescribed pills, exotic other pills promising "performance," etc., and would use them whether I was participating or not. He would just go to the Internet to fulfill his needs. I grew to hate the computer - specifically, HIS computer.

It is a touchy subject, makes us feel humiliated, sad, challenged above anyone's wildest imaginations, and yes, stressed not only from the situation, but "what if he tries to find someone through an online dating service or someone finds out about the porn on the Internet" browsing by this upstanding citizen? It's like a horrible movie where my husband is the one and only featured actor who leads a double life, I'm the only one watching this horrible film unfold.

By mytngenes On 2010.04.23 12:47
Wow! We are all definitely on the same page!! Each response has described my situation and feelings to a "T"! Thank you so much for opening up here and helping me to better understand and cope with what I knew to be true.

I do think the meds are somewhat responsible....Mirapex is a beast! I would dare say that one med is responsible for most of my husband's behavior problems (i.e. OCD).

Just knowing that it's not all me is a big help and of great encouragement to me. I realize that I too share a responsibility here in how I choose to react/respond to this disease and it's intrusion into our lives/family. But at least it's not peculiar to me. Thank you!!

By daisy On 2010.06.07 15:11
Hi, Firstly, I hope that I do not upset anyone with the sensitive nature of this post. Please accept my apologies in advance. I am new to this site and to be honest I find it refreshing that finally someone (actually quite a few) have the courage to come out and tell it how it really is! Most of the sites I've visited skirt around this whole "sexuality" issue that I was beginning to think the problems and feelings I was experiencing were peculiar to me. I am sorry to learn that so many women feel as I do, as we all love our partners dearly, but on the other hand it is good to know we are not isolated in these feelings of guilt for loving the person "inside the person". My husband has only been diagnosed for 3 years and at 50yrs sex is a huge factor in our relationship. His symptoms are quite severe and he is taking a LOT of medication including sinemet and comtass x 9, requip, rivotril and amatripeline at night to help him sleep. Unfortunately, the tranquilisers aren't very effective and only make him very confused (talks gobbledegook etc). I have been under huge stress recently and found it difficult to meet his sexual demands (which have increased because of the medication). Unfortunately, he has started to accuse me a couple of times of denying him sex and then masturbating all night (me not him that is) which is a prepostorous suggestion. (Sorry to offend!!) He is really angry at me and I cannot even suggest that it might be all in his mind. I have read on different sites that this sometimes happens and I just wondered whether anyone had a similar occurance and if so, how would you suggest I handle this. I was thinking of recording nightime activity with a camcorder, but he would go mad if he knew I was doing it and probably wouldn't believe me anyway, as he is always right. I'm not really concerned that he would think I would do that, but my main concern is that his condition may have deteriorated to that extent and the fact that he is so hurt about my supposed rejection of him as I have tried to hide my real feelings about sex from him. It's hard to hard the ones you love and we still have our moments of closeness which I cherish.

By mytngenes On 2010.06.07 15:42
Daisy, please email me at sjdraper56@hotmail.com

By Emma On 2010.06.07 16:57
Daisy, Nothing is off limits on this forum and you will find a lot of honest candid people here. Even though we have never met in person I consider this group to be some of my best friends.

My husband has never accused me of maturbating but he thinks I'm having an affair with one of his friends. It's laughable, even if I did want to have an affair (which I don't) I'm too old and too tired.

Welcome to the forum, we're glad you found us.

By hubb On 2010.06.07 18:28
Just to let you know, they still have that thought at age 80! But after having been on meds for so long and so strong, most of the time it is just a thought, but the urge remains so they never outgrow it, but it's pretty difficult to feel too romantic in the bedroom after you have given him an enema in the bathroom and had to clean up after him - that pretty much will kill any desire of any kind! You do still love the guy you married, but they do change and as they get older and have PD longer, everything changes, including your own life, what little there is left to you. It does become a mother/child relationship and some days you feel like you don't have any life of your own left at all - everyone keeps telling you that you need to take care of yourself - I just wish someone could tell me how to do that.

By lurkingforacure On 2010.06.08 09:35
Making time for you:

We know if we don't, we won't be able to be there for our loved ones.

We feel guilty if we do, because we aren't there, for that brief time, for our loved one.

And we feel guilty because we are getting a break, and our loved one never does. (I even feel guilty because I have the option/ability to get a break in the first place, and my husband does not.)

I think if you are simply overwhelmed and don't know HOW to find a brief respite, contact social services in your area (I might even call hospice for some pointers in the right direction). They may be able to give you some suggestions on the logistics of how to get a break. I hope you can find a way.

By parkinit On 2010.06.18 13:11
Hi all -

I haven't been here awhile. Sometimes our PDers keep us busy, don't they? I will say as the disease has progressed, it appears that my spouse has passed through this stage to a "simply survival" stage. Can it be comforting in that those that are going through the insatiable sexual desire stage may understand that it may pass.

Also, have the doctor look at the pills that your spouse is taking? It could be a certain medication should be removed or adjusted that is causing this "addictive" side effect. See article on this topic: http://www.consumeraffairs.com/news04/2010/06/parkinson_drug.html

By daisy On 2010.06.19 15:52
At this stage, I admit I would be glad for mo LO to move onto the next stage, I have reduced his medication across the board, except for Ldopa and from today the Requip will be gone completely, however the sexual delusions are still there at night time. He have devised all kinds of bizarre plans to catch me in action, so to speak (most would be funny if it weren;t so sad) and every day after much persuasion, he is repentant but then the same thing happens again that night...
Does anyone know how long it will take the Requip to quit his system? I suppose I have pinned my hopes that on everything will return to "normal" then.
Presently, I am between a rock and a hard place. When he is not accusing me of being sexually deviant, he blames me for reducing his medication to such an extent that his motor function has become unbearable. I read on someone's earlier post "Be prepared to be the BAD GUY" Well if I wasn't then...I am now...

By pdspouse On 2010.07.04 02:44
Thank you to everyone for your posts on pd changing the husband/wife relationship.It has meant so much to me to read this tonight and not feel like I am the only wife going through this experience. I feel guilty too that I am talking about what i am going through, when my husband, the nicest man in the world, is the one with this horrible disease. It's lonely and kind of crazy-making, it helps a lot to get validation that these relationship problems are part of the disease.Thanks again to everyone, you helped me a lot.

By LOHENGR1N On 2010.07.05 19:20
pdspouse, Hi and welcome to the forum. Glad you've found Us, We're here to help all we can. Even if it's just an I know how you feel or what you're going through. All great hearted souls on here trying to get through this crazy disease as best we can. There's a broad spectrum of experiences we're going through at any given time, so while we don't have a sheepskin on the wall we've earned our degrees in the trenches, hands on and first person experience. Again welcome, I'm sure your input will help others, keep posting. Take care, best of luck and hang in there.

By pdspouse On 2010.07.05 22:13
Thanks for making me feel welcome, Lohengrin and everyone else. i am 58 and my husband, who has PD, is 68, diagnosed 6 yrs ago, has the muscle rigidity, not shaking kind. Before diagnosis, it was like all of a sudden, over the course of a few months, he became an old man. slow, staring into space, shuffling, weak voice, sometimes sounded like has was drunk. etc. Now he's been on Levadopa and Mirapex for 6 years. Some of the personality changes are subtle, some not visible to outsiders, like his sex obsession, and viewing porn on the Internet. His voice has become very hard to hear, others notice, and we drive each other nuts with me saying "What?" so often. He has become a huge collector, to the point where it's hard to keep the house neat, and there is no room for cars in the garage. His driving has changed, I hate to ride with him, usually drive myself. He was always neat and clean, and neater around the house than me. Now he goes around unkempt, and makes messes in the house like a three year old. I try to look at it like doing the activities he likes is all the energy he has, I'll just clean up after him, but sometimes it's hard to be patient. one thing that really frightens me is when he lapses out of reality. this is usually after he's been asleep awhile, and he starts talking, thinks other people are in the room, etc. once in a while though he does this when he hasn't been asleep. He called our 20 yr old daughter about the fight he thought she and i had, when we didn't have one. He talked in the kitchen for several minutes to our 6 yr old granddaughter when she wasn't here and hadn't visited for weeks, he left me a message on my cell once, asking me to come home, because the kids were there and he had to leave, when no kids were there or had been there. Hard to know if he had overdosed or underdosed, or is this early Alzheimers? Good luck to everyone dealing with this, I know i'm not the only one.

By LOHENGR1N On 2010.07.05 23:47
pdspouse, It sounds to me like his medication might need to be adjusted. Too much might be the reason for hallucinations (taking to those not there etc..) It could be delusions from the medication or dementia. Has this behavior started recently (I mean just out of the blue one day?) with dementia there is a subtle gradual worsening over time. Delusions just "show up" one day and can worsen but when looking back there is no pattern of slowly declining. Either way you should discuss this with his neurologist. When you do discuss this don't take a nod of the head or a "that's to be expected" from the Doc. Let the Doctor know your concerns, Ask about the medications and side effects to be on the lookout for. They know the course of and the effects encountered or expected from Parkinson's Disease, remind them you don't and frankly some are quite scary. They learned from books and observation (for the most part) but not from living 24/7 with this disease. Good luck and keep us posted. Take care, best of luck and hang in there.

By Emma On 2010.07.06 06:15
pdspouse, You are in the right place. I think that you will find this forum to be a great help, we all know what you are going through and just having that empathy from others in the trenches can be very comforting. Another bonus is all of the great advice and knowledge you will find here.

Although my husband's PD is more advanced your situation is very similar to ours. I am 59 and my husband is 68. Like your husband mine seemed to become old overnight. Before he was diagnosed he was suffering from depression and would often tell me that he was an old man. One day we were shopping and I noticed that he was shuffling his feet as he pushed the cart. I remember thinking to myself 'well he thinks he's an old man so he's turning himself into one'. Little did I know.

If you read some old posts you will find that many of us are facing the same issues that you are with neatness, delusions, all of it. I know that for me just finding out that there were others out there who knew first hand what I was going through was a huge help and relief.

Al is right, delusions can be part of dementia or they can be caused by the medication or a combination of both I suppose. Do talk to the doctor about it. I question, prod and disagree with our neurologist quite often and I know that I irrate him but I don't care, we're living with this and he's not. Good luck to you.

By parkinit On 2010.07.08 23:43
pd - One thing I would like to mention that may be clouded with all the other side effects of drugs or results of Parkinson's is the possibility of a head trauma. Hallucinations is not the result of this, but if your spouse is falling lots and the "norm" behavior (what is this - right?) becomes highly erratic all of the sudden, make sure that you have the head checked for trauma or any signs of trauma. My spouse had a subdural hematoma as a result of falling so frequently and with great force to the head. I know now what to look for, but I wasn't sure what was going on at the time.

By isthisme On 2010.07.12 21:22 [Edit]
Well....I finally feel like I am not the only one with this problem!
Hi...I am new here. My husband also has Parkinson's, he is 53yrs...diagnosed in 1999. This is a second marriage for both of us. I love him to death...but...having sex is the least of my concerns these days. He, however, would like to have sex every day. Every day! And when we don't (which we don't), he treats me like shit. He gets angry, and just becomes very irritable. I can't stand it much longer. He is driving me crazy. And of course our relationship is suffering because of it. We have been together for 13 years. His symptoms aren't horrible as of yet. He has difficulty with movement. His on/off periods are sudden. He is currently only on Sinemet and Azilect, and has had DBS surgery. He has been on most of the Parkinson's meds out there. None really work.
I am just really glad to see other people have this same issue.
I don't know how to deal with it, but it's good to know there are others out there.
Thanks:)

By Emma On 2010.07.13 04:21
isthisme,
Glad you're here with us, welcome to the forum! As you can see by the number of replies to this posting, sex has been a hot topic on this board. Like you, I don't know what to do about it but just knowing that I'm not alone comforts me a bit. You and your husband have been dealing with PD most of your married life, that has to be tough. I hope that being part of our "family" will be a help to you. Hugs. Em

By isthisme On 2010.07.14 21:09
Thank you Em. I have been browsing many forums on Parkinsons' caregivers, and have not come across this topic. I am glad I found this one. Yes, my husband and I have been dealing with this for 11 of the 13 years we have been together. However, it really has just begun having an affect. It is probably only in the last 6-12mos that the Parkinson's has been having an affect on our daily lives...at least enough for us to have to change it. We used to go out a lot more, walking around downtown, or shopping. But lately, he isn't walking so well, so we don't do much of that. I think most of it is his worry about what other people are thinking. I tell him not to worry about it, but I imagine that is easier for me to say than for him to do. He is a very proud man. He is a police officer. He is used to being the one helping people. It's tough, and I imagine it's only going to get tougher....especially for him. But I love him very much. I just hope we can make it thru all of this unscathed with our love intact.
Thanks for making me feel like I have finally found someone who understands.

By lilflower On 2010.07.22 10:20
I'm so glad to hear I'm not alone. My hubby has Pd over 10 years now. He's turning 60 shortly and His sex drive is never ending. I used to feel the same when I had the energy. But when you spend 24/7 dealing with everything my sex drive just ain't what it used to be. I love my guy with all my being but I would love to get out of the shower and not have him waiting there with that smile and come hither look when all I would like is to lay down and relax.

By parkinit On 2010.07.22 19:47
Welcome isthisme. Yes, many of us are in the same boat. My husband is used to being a "leader" and this has been difficult for him, too. He not only has PD, but also has trouble hearing. I feel so for him. He doesn't want pity, but he wants help. I worry about him, but have to let him do as much as he wants and can so he can "still feel like a man." He is in a powerchair now, but every now and then he feels well enough to mow the lawn or go out and kill weeds, so even though I worry (in this dreadful heat), I have to let him continue to be all he wants and can be. Hang in there.

By mrsmop On 2010.07.23 16:46
There's tons of stuff here about the sex thing. For me, the chemistry just isn't there any more. The caregiver role has changed all this for me. Ok, now how do you handle it? Not much in here about that.

mrsmop

By Emma On 2010.07.23 20:41
mrsmop, Unfortunately I don't think that any of us know how to handle it. Like mytngenes my husband and I end up having a lot of heated discussions, tears and sulking. It's a nightmare. I don't want to hurt my husband by telling him that I am no longer attracted to him so I blame my lack of desire on menopause. He doesn't care and just keeps bugging me. Counseling isn't an answer for us because he has dementia. His insight is just not there and that's a key element for successful counseling.

Sometimes I think I'm going to lose my mind and the more he pressures me the more I don't want to do it. I'm not sure that there is an answer but for me it helps to be able to talk to people who really understand how I feel and don't judge me for it. Until I found this forum I thought that we were experiencing things that no one else did, that our situation about everything (not just sex), was some kind of unique freakish PD experience. Knowing that it's not comforts me and I want to reach out to others who are going through this too if for nothing else than just to say I hear you and I care about you and you're not alone.

By shirley On 2010.07.23 21:49
mrsmop and Emma, I know exactly where you're coming from. We have not had many arguments since I would always find a way to make things work, even when they weren't really working. However, once we reached the point of my being much more involved with daily caregiving, ie bathroom duties and helping with moving from bed to chair, etc., I could not see our relationship the same way. I love my husband, but now I am his caregiver, his nurse, his orderly. We no longer sleep in the same room since has restless leg and horrible dreams that often get acted out. I miss our life together before Parkinson's took so much of him away. He has aged so in the last year and often I am mistaken for his daughter (I am 15 years younger). I actually feel more like a daughter now than a wife.

Dementia also plays a part in all this and there isn't any point in trying to explain things. He just doesn't get it. Sorry if I sound bitter. I suppose I am but I am working on being a better, more patient caregiver. As Emma said, thank goodness there are others experiencing the same issues. I was beginning to think I was going a little crazy. Perhaps in time things will get a little better for you.

By caregivermary On 2010.07.24 13:43
mrsmop,

My husb primary dr. put my husb on Citaloprm 20mg. If you look at the side effects, I believe it states it decreases the sex drive or something like that. It did change his interest level but not completely. I think with dementia they often live in the past and remember when they could do things they actually cannot do now. Meaningful sex is one of them. Unfortuately, for me even small moments of affection mean sex to him. Another thing I do is change the subject or move out of the room/place we are in and distract from it. This does work quite often. I do not believe there is a good solution and also I don't believe this will go completely away. I believe annwood said this on many occasions.

At this point for me at least, I'm the one who is lonely, lacking physical affection, and wondering how long I can go on like this. I'm sure many of you are in the same situation. No one is concerned or worried about my mental well being. I know I am the one who has to find ways to get beyond this.

Having all of you to listen and get advice from is the best I have.

By MJ-Camano On 2010.07.24 14:09
I so understand everyone's comments on this subject; I think I went thru about 4-5 years of this until I finally said no more (blamed it on no sex drive as I'm 65.) He finally (after over a year) accepts this, but I still get alot of comments, etc. The sad part is that any type of affection for years meant sex to him and would start the arguements. It seems we both have resentment from this sex obsession and we can't seem to just be affectionate now, which is sad. As the dementia is increasing so is his resentment towards me. But I no longer feel I am being stalked. I'm so sorry others have also experienced this - I so wish I had found this forum 3 years ago and could have shared the experiences at that time. This is one of the hardest experiences of the PD......

By terriweb479 On 2010.11.19 05:29
My husband has had PD for about 3 years now and is on Mirapex and we are going through he exact same things. I feel like we've turned into mother and son. The porn addiction has gotten to be too much. I found out he visited the local strip club when I've been out of town and then whenever he gets a chance, he goes to the computer. I have had to lock the computers, setting up a "child" setting so that he can't enter certain sites. This was on the heel of our adult daughter walking on a session. I am going to see if I can get him off Mirapex. His neurologist just tried taking him off without replacing it with something else. He is currently on Sinemet, Azilect and Mirapex. Any suggestions out there?
I find this forum very helpful but it's also very scary as to what we're facing in the future. This has been a big strain on our family and on our marriage. I feel like I'm defending him constantly to our daughters as they don't believe it's the disease. They feel he's playing me. I never realized what a horrible disease this is.

By Emma On 2010.11.19 06:10
terri - This has been such a big issue for us. The sex obsession is the one thing that I just cannot deal with. It got to the point that I had to lock myself in the garage to hide from him and call the neuro to beg him to take him off requip. We ended up reducing it to once a day for his restless leg syndrome and that helped. However, in the past month or so he is asking for more requip claiming that his legs are bothering him, I don't know if that's true or if he just likes the obsession. He can't get on the computer anymore so most of the obsession is directed at me, which means constant harrassment, and inappropriate behavior and comments - which he doesn't recognize as inappropriate. For instance, one day I told him that our step-granddaughter (age 16) was sick and couldn't go to school so she might be spending the day with us. His response was that maybe she would like to give him a sponge bath. He also sits in the living room while we're watching TV or whatever with his hand in his pants, masturbating I presume. It's all disgusting to me. I can handle anything else, maybe not well, but I can handle it. This I cannot and if it doesn't get under control again soon I'm done. So I hear you but I don't know the answer.

By karolinakitty On 2010.11.19 07:40
terri .. while we have been fortunate to be without this problem, the first question is why did your doc just take him off of it?
Mirapex like so many of our drugs have to have weaning off period. These drugs cause even worse things if they are not reduced slowly. There are several drugs that cause these obsessions and that is one of them. Since the doc wanted him off of it anyway, try slowly reducing the amount, and if needed call the doc for different mg levels, I am assuming he is having problems with RLS as well and maybe, Requip OR the new mirapex extended release, taken only at night, might be a consideration.
My guy was on regular Requip, and while not having obsessive problems, did have other side effect problems. The Movement doc put him on the RequipXL, he takes it at night and mostly all the side effects went away.

By terriweb479 On 2010.11.19 18:28
Emma and Karolinakitty

Thank you for your insight and your replies. I am so fortunate a friend told me about this website. It has been such a big help. Emma, how long has your husband had Parkinsons and how long has he been on Mirapex?

And karolina, thank you for the ideas. I don't know why she took him off cold turkey but I don't know about you, but it's hard for me to tell the doctor these things when he's sitting right there. I think he feels like I am picking on him. He has an appointment in December, so I am going to call the doctor beforehand and have a talk with her to see what can be done.

My husband isn't as bad as yours, Emma, but it's scary to think what might come down the road. Because of the obsession, I've locked him out of the computer and I have to say I allow him to visit the computer after I know everyone has gone to bed because I'm afraid if I don't let him where the obsession might take him. Will he try something he shouldn't, do something illegal and so as disgusting as it is, I let him go on from time to time but I would rather see him get away from this obsession. He also took up smoking again so I know this has to be the meds.

Thank you all. It's nice to know we can express ourselves and be totally honest with each other. I haven't been able to tell anyone, especially our daughters what's going on because this is not something they want to know about their Dad.

Good luck to all of you, too and tank you for the ideas. I am going to have a talk with her.

P.S. A doctor told my daughter that Wellbutrin increases dopamine in your brain, so why don't these neuros prescribe that?

By susger8 On 2010.11.22 08:21
Be careful about the computer access. People with obsessions can spend huge amounts of money online (or off-line, for that matter). Keep a close eye on your bank account and credit cards.

Sue

By TiredTexan On 2010.11.22 14:41
I find myself re-reading these posts...and understanding every word of them. Maybe I have finally convinced my PD spouse that sex is no more (even though we are pretty agile for 80 and 82)...he can't perform and I have too much arthritis to "play games"! Maybe my comment, "Let me have my dignity" helped out some. I don't know - I just ignore the occasional reference these days and we seem to get by. He only takes carbido/levodopa for PD and uses Exelon patch for the dementia. So far as our love for our spouses, if our constant care and efforts are not proof positive, what is?
I have a pet peeve - maybe it is just silly - but when someone says it is like having a child to care for, I don't quite agree. A child PROgresses - PD dementia patients REgress! It may be just semantics of a sort, nevertheless it is more difficult in many ways than rearing our five children ever came close to being!

By Emma On 2010.11.22 17:00
Tired Texan, I think I mentioned this on another post a long time ago but with a child it's like a plug is being put into them every day and they light up and learn something new. With Parkinson's those plugs are being pulled out one by one and slowly the light dims. It's hard for everyone. A few years ago my husband flew out east to visit his daughter (who has five kids) for a week. Once she got him on the plane to come home she called me and said that she was exhausted and would take dealing with her five children any day. Caregiving really is a labor of love even if it seems sometimes that we forget that. That's why we need this board and each other.


© 2003-2017 MyParkinsons.org · Privacy Policy & Terms of Use
Published by jAess Media. This website and Forum is sponsorsed by people like you