How can I continue to be intimate and have sex with my spouse who has been diagnosed with Parkinson's Disease?

I have absolutely no experience in this area since I cared for my dad in my home but I think it's a great topic and am glad you brought it up. I'm sure there are many spouses of disabled people who are in the same boat.

I'm sorry I can't help but I totally respect your situation and your desire to talk about it.

Most likely it would devastate him if you told him. Are you okay to continue sexual relations with him? Is it too much too ask?

Several months ago someone posted about not having sex with their husband that was suffering from dementia. They didn't feel their husband was their equal anymore. I had read their statement to my husband who commented that sexual pleasure was such an animal instinct. He felt sorry for the man that he was deprived of his prior state and lost his sex life with his wife due to her distaste. My husband was really upset about it.

My MIL did continue to have sex with my FIL, he had lost 2 legs (both were cut off above the knees) and he was demented. Still had a strong sex drive and she continued to have sex with him, before dementia got her, and after. I don't know how she felt about it, I didn't ask.

Men place a great deal of importance on sex. Can you go through the motions without being attracted to him?

What's that old line? The man speaks during sex and his wife tells him "be quiet, I am trying to fantasize now and it's not you I am fantasizing about".

Thanks so much for your comments. I have been going thru the motions but find that I try to avoid sexual contact as much as possible. I have such mixed feelings about it. I'm having trouble wrapping by brain around it. I think "physically I can do this", but mentally is where I'm having difficulty.

I am so sorry:(

If you don't drink, I apologize in advance, but maybe tequila?

Thanks so much for giving me a chuckle!!

I've decided to try the old Nike attitude, "Just Do It"; kind of like a mental approach to working out. We'll see how that works out.

You are a sweetheart. Has his personality changed much with the Parkinson's? I once was in touch with a man whose wife had cancer and the treatments prolonged her life, but took away all sex drive. He had trouble facing the rest of his life without sex, but still loved his wife. Not quite your problem, but just to say that illness of one kind or another can be devastating on so many levels. ((((((hugs)))) p.s. the tequila might be an idea ,)

I absolutely have no experience in this situation, so my suggestions may be off the wall - I apologize in advance, but here we go. Is there anything that calms him enough to reduce the tremors that would promote intimacy? Fragranced bath together, mood music, candles? How about talking about how things used to be, such as "remember that time at the beach when we.....?" or "remember that sexy nightie I used to wear - what were you really thinking back then?" My significant other and I are no longer physically intimate but still very dear intimate friends and we sometimes reminisce about our 'crazy' times together and have some great laughs. It's true nothing works quite like it used to! One of our favorite comments is that if we didn't have our imagination we wouldn't have any fun at all!! I truly hope something works for you two, but feel free NOT to give us the 'details' if any of these suggestions work! LOL :)

FeelingHelpless,
I have similar feelings, with less excuse. My husband and I recently agreed to a schedule. That gives me the feeling that he won't be coming at me the rest of the time. I am surprise to find a little bit of interest stirring as the date approaches. He wishes that we could be more spontaneous, but I asked him which he would prefer, a schedule or no sex?

I used to like sex, honest.

Intimate question - are you getting sexual pleasure yourself? I'm thinking if you are then maybe the tremor could eventually seem like less of a big deal. This is an issue I used to see when taking care of adult rehab patients as a resident. Back then we did not spend enough time and effort making sure people could go back to their sex life, and probably a lot of people just never spoke up about sex and disability. I remember one who did, and admitted that she could not feel sexual with her husband because of the catheterizations and care that had to be done. And it ended up being even worse with that, both families seemed to think that she should give up everything she did to do his care full time and nothing and she knew she needed a life...we tried to tell her of course to go ahead and pursue some of her own interests and not let people guilt trip her like that, but they ended up splitting which was really sad. I'm not saying you would do that, but I'm saying there is no reason not to have sexual pleasure in your life if it is possible! You could even consider seeing a sex therapist to see if it will help you find a mutually satisfying sex life again, however crazy it sounds. They are supposed to consider both the physical and the psychological/emotional aspects, and you could start off consulting one on your own and taking it from there.

Thank you ALL for your comments! It helps me just knowing that others care! Not to get too graphic, I was getting sexual pleasure when his tremors were slight. I could still feel them when we embraced, but was able to put them out of my mind. They have progressed to the point where it is now impossible for me to do so, even with the help of numerous medications. I have always needed to have a clear mind so I could strongly concentrate on my own feelings in order to reach sexual pleasure, but now because of the constant jerking motions it has become impossible. He knows that I do not reach climax and that I have lost my desire for sex but I've told him its because of my having gone thru menopause and my own body image issues. I think that he just thinks that the more we do IT, I will get over it. I don't want to tell him that his Parkinson's is what is effecting me. He will think that I don't want him because he is "broken". Thanks once again for letting me vent. This alone has been a great help!

Hi, just another point of view regarding the sexual aspect of anyone suffering from a chronic illness... my husband was totally unable to cope with this disease of mine, Parkinson's ,and he himself started to develop depression and whilst he told me he could not care for me, devastating as it was to hear he was revolted by the disease and so our sex life went out the window, i told him i could never abandon him and would always be by his side, always.....sadly this was not enough for this beautiful man, my husband of 41 , years , his pain and shame was so hard to bear that he took his own life last year. tragic that he could not or would not seek help.....so he is at peace now, whilst i have to pick up the pieces....nothing is so bad that you have to take your own life, when he killed himself, he killed me as well. i urge honesty and courage to keep the lines of communication open, things can be worked out, sex is not the be all and end all of life,,...love, friendship, companionship in my mind are things i can't live without, but i am having to do so.....i am glad that you are not telling your husband what you feel, whilst one needs to be honest, there are some things that are best kept to yourself, after all it is not our fault we are inflicted with Parkinson's! Good luck, your husband is lucky you are willing to be his caregiver. My future alone scares me to death.

I'm having the same problem. My husband has Parkinson's. There is little about him that is the same as even four years ago. He even has to use blue pills to make himself work correctly. He can't work anymore so I have to work full time. It's like I'm angry but not really at him. His tremor isn't bad but he freezes. I don't feel attracted to him anymore. Doesn't mean I don't love him. I feel different about him being in a care giving role.

My heart goes out to you, This is strictly second-hand information. My best friend of thirty + years has been diagnosed with Parkinson's. At this point, most of her symptoms are under control with medication. She is 60, and her husband is five years younger. We are close enough to talk about everything under the sun, so naturally the subject of sex comes up now and then. They still have an active sex life, and it makes her feel so good that her husband is still attracted to her. She is feeling like a future burden and unattractive, and she has put on quite a bit of weight. I have no idea what his thoughts are, but I admire him for making her feel sexy and attractive. So, my point is that they are dealing with her illness together and keeping their intimate life healthy. My suggestion to you would be, after the tequila LOL, to put YOURSELF into a romantic mood by wearing something special, wearing a special fragrance, and feeling sexy. If you want to fantasize, why not? Maybe you could even fantasize about the days when you were both young, healthy, and vibrant? If he is still interested in having sex with you, consider it a compliment. Psychologists say that 90% of sex is in our minds anyway, so try to overlook the way he is and remember the way he used to be....and enjoy anything you want in your mind. Gee, I don't want to be too explicit! Feeling sexy in your mind might lead to more physical enjoyment for both of you, and perhaps that "loving feeling" might return. I wish you the best. If none of this makes sense, there is always therapy for you or for both of you. I am embarrassing myself, so I will just say I am sorry you are having to deal with his illness and I wish you the best.

Thank you ProfeChariGive a hug

Thank you wantinghelp and ProfeChari for your comments. I still struggle with this issue today. I keep trying to avoid any sexual intimacy and just continue to go thru the motions. I agree with you, wantinghelp, that now being in a caregiving role has changed how I feel about my husband. I still love him and will continue to care for him, but am no longer sexually attracted to him. He continues to pursue sex while I continue to run the other way. ProfeChari, your suggestions are excellent for someone whose spouse has moderate symptoms. I know, because that is exactly what I did for a number of years. My husband's tremors are now pretty intense and, though I try to fantasize and get my mind in a more "sexy" place, the constant shaking won't allow me. Wantinghelp, I too feel angry and, like you, not with my husband but with this Parkinson's Disease.

I too had difficulty hugging my husband when the tremors were so bad. I can't get passed the anger some days at how Parkinson's has forced us to change our lives. It is hard to see beyond the tremors when it causes your body to shake also. It is very unnerving and so sad it as if I can never get away from the illness. My husband has had the DBS surgery 2 years ago. The tremors are gone but now he has no interest. My husband started having personality changes several years ago including memory issues. I can now hug him without feeling the tremors. I am his full time caregiver too. If you can find a wife of Parkinson's patients you might want to consider joining it. Or ask your local Parkinson's association to start a support group for wife's.

tequilla. its the best and most consistant advice here.

I too understand. My husband is 72, I am 53. He has had PD for 15 years, had DBS.. no tremors, but no function. The "pills" do not work and he is searching desparately for anything. I really have no desire but go along with everything. His incontinence was the first turn off. He found a urologist that is treating him with botox in his bladder for that. Same urologist is gung ho on Erectile disfunction and talked him into ultrasound tests and injections for firmness. All well and good, but he is not physically able move much, so if there is any function, I would be doing all the work. All this probably sound pretty selfish and I don't mind caring for him. I love him dearly but at this point, Sex seems like yet another "task" on the endless list of things we caregivers do.

My heart aches for each and everyone of us who are experiencing this dilemma. We have the same situation in our relationship. I've tried the "Nike Attitude", but want to cry every time I force myself. I hate the fact that I avoid him when I sense "IT" approaching. I hate the feeling that I am being stalked by my own love. I do know that if the sexual needs are more frequent (maybe even daily) than they were before this diagnoses and beginning some Parkinson's medications, the neurologist should know about it. It seems that some of the Parkinson's medications can escalate sexual desire in a patient. It was a rather touchy situation to mention, with my husband in the exam room, when I decided that this was creating a wedge between us and had to be dealt with. I decided to be brave and take the plunge anyway. I told the Dr. that there was way too much affection going on. He got it. My hubby was extremely unhappy about this. One suggestion I have for anyone pursuing this suggestion would be to inform your husband that you intend to mention it to the Doc, before you get there. I should have. Then stick to your guns. We were able to discuss it later and move on, but he doesn't get it. A few changes in medication has helped some. The sexual desire just seems to suffer on my side with everything else I have to do and I imagine that it is the same for others. I feel more like his mother than his wife. Thanks for the suggestion to schedule a day. I am thinking about trying that. My husband also wants spontaneity, however I agree, a schedule or no sex. Perhaps I will not feel like I am being stalked if he has a day to look forward to. I also can get myself focused and make the time for us. I truly believe that it is impossible for them to understand what Parkinson's does to us and how it affects us. Many blessings to you all. We continue to pray for something new to treat this ugly disease.

Hi, how do I move forward in a sexless marriage? My husband has had 4 major spinal operations in the last 3 years and has been disabled now for 1 year, and I am now is carer. He is 40 and I am 39, we have been happily married for 20 years and have always enjoyed a very active sex life. He now has no desire for sex and it has been over a year since we last had sex but I am really struggling to cope without it, especially the intimacy and closeness it brings. I still love him dearly and find him attractive but he has no desire for me whatsoever, although it hurts, I totally understand his situation, but I wondered if anyone out there is in a similar situation, and if so I would appreciate any advice on how to cope?

Elliemorris, sorry to hear of your husband's troubles. Sex is not everything. My parents had some health.concerns at about your age, no more was possible, no little blue pills in rthose days. Love is not sex or vice versa. Love is a choice and a commitment. Sex is an animal act, not needed for survival, really. You and your husband may have different sexual urges, but that doesn't mean love has changed. You might need to explore self-gratification at times/places your hubbie won't be around. There is nothing wrong with relieving the sexual urge and then you will be free to attend to your love commitment, taking care of his physical needs which no longer includes intercourse. In time, your own sex urges will subside, especially with menopause.

Maybe it's time for intimacy instead of sex. There's nothing wrong in cuddles or hand holding.

Ellie, you are so young to have to give up on the intimacy and closeness you enjoyed with your dear husband. I hope you have been able to talk with him about this. Even if he has no sexual desire any more, but he loves you, he can bring pleasure to you. This is something he can do, with a bit of imagination and maybe some 'sex toys' from a shop that sells that sort of thing. I hope it can be a private pleasure the two of you can share, from planning, shopping to doing.
My hubby makes this effort for me, and while it isn't the wonderful sex for either of us that we had when young it keeps us bonded in that way. I hope your hubby is able to participate in caring for you like this too.

Sexual activity must be mutual agreed. Anything less than both wholeheartedly saying Yes, is abuse, even if it is a spouse with a diagnosis. Nobody ever has a right to demand you participate in sex acts. I know there are some Uber - conservatives that say a wife must always submit, and if that is the wife's choice to enter into a marriage as that is, then she has to submit. For the rest of us, the time may well come when sex isn't going to happen-- it may be due to advanced pregnancy, or sickness or who knows what. Heck, there are plenty of times (at work, for example) when an individual wishes for sex.....but they have to give up on that idea (real fast!). Our culture is so sexified that people believe all sex must be instantly available, always awesome, and certainly if 2 people (or more!) are in a room together, hey let's have sex! I for one reserve the right to say, NO. Even within my marriage. If I don't want it, then if he wants to go take a long shower, fine with me. We are still married. And if he wants to divorce me for standing up for my desires (or lack thereof), bring it on. I can't wait to talk, in front of a judge, about everything I have not been able to enjoy because of his not "wanting" to do so.

malloryg8r, excellent post. You brought up a good point about both parties need to wholeheartedly say yes.

My sig other was surprise to learn men were from Mars and women were from Venus, and our wants and needs were not the same as his especially as we get older and go through menopause. And that for some women sex was just another chore on their list of things that needed to get done around the house. I think many of us are just too tired of doing 90% of the housework after coming home from a full-time job, plus dealing with elderly parent(s) to even think about getting physical. Just give me a hug, that would make me happy :)

I have been married to a man with Parkinson's for 9 years. In retrospect I think he was looking for someone to take care of him when the disease worsened. He retired 3 years ago and I have to tell you it's been hell. He has become indifferent, lazy, either watches tv or has his head buried in a book 24/7 (he never used to read at all). He does not help with the housework one bit and I do all of the yard work. He will trim a few spots with the self propelled mower. We have 1-1/2 acres to cut and I do it all. We have two dogs of which he never thinks to take them out. May I tell you that he blames his Parkinson's for everything.....lack of memory mostly. It's funny how he can get on the phone with his friends and recall football, baseball and basketball plays.....what game, who it was, scores......so what I'm getting at is his memory is very selective and uses his disease to his advantage. Funny how every morning he wants to lay in bed until his pills kick in as he says......but if he's off to a 3 day golf outing he's up and out the door by 6 a.m. no problem. Several years ago I found he had been on all the nasty dating sites....found all of this on his iphone in history, he even had himself registered on one of them and I am convinced he was communicating with various women and having virtual affairs if you will. He says it was because he was feeling sorry for himself, was fantasizing, wanted to see how the internet worked and what was out there. My god this man is 64 years old and used a computer for most of his career??? Starting see a massage therapist for muscle relaxation and then one week went to see her 3 times of which once he took a cialis before he went and lied to me about where he was going. Said he decided after he left to go and get a massage and that was not lying in his mind because he didn't call for an appt. before he left the house. Anyway, what I'm getting at is he blames all of this on his disease and I'm not buying it. I know the pills and disease can make you compulsive, however I have yet to receive any apology for anything as he feels he has done no wrong. I don't buy that Parkinson's has done all of this to him. I know there are two sides to every story, but I have been nothing but a good wife to him, but now everything has been sucked right out of me. I have no desire for sex, nor does he, which is fine with me.

I would NOT tell him, there is no reason to hurt his feelings when he can't help it. Instead, I would just view it as my day to turn him on so to speak. Pick a day or schedule it as someone said, make yourself sexy with fragrant smells from a soapy bath, perfume, etc. Come to bed with a sex toy just in case. Close your eyes and remember the man you married and how thrilled you were with him when he held you and you make the effort to have sex with him. You might just be surprised by his reaction. If the room is dark, you won't see the shaking and hold his hand gently so he can do what he needs to do to continue to feel like a man. Sex means something different to a man than it does to a woman. Men equate sexual arousal, size, feelings, hit a home run; with their own thoughts of being a MAN. If they can't perform, they think they aren't a man anymore which is far from the truth but hard to convince them of it. When they have sex, they just feel the sex like it was something that was due to them, their rights to have it. Women, on the other hand, use it as a way to turn someone on who is on their radar. They may be looking for a husband and the ritual begins. She can tease more than one at a time but prefers one at a time. All women like to be "wanted" and even though they tease, that's all it is, teasing. That's where they go wrong with some men and get into trouble. But most women handle themselves fine and when they find the right one they want to settle down with, all gloves come off and they fight for the one if needed. She thinks of sex as a way to get him and keep him, to have her children with him and grow old with him. Some don't even care if they never or rarely have sex after 30-40 years with him. They settle into companionship and daily kissing is enough for many. If you love this man, do what you can to make it a great experience and do what you would want him to do if it were you that had PD. Put the shoe on the other foot. He didn't go out and "get it", it just hit him one day and he's dealing with it. Deal with it with him. If you need sex away from the house and the toy won't do, consider what would he do and do it. You should be in this for the long haul.

Yes I agree with Golden23 ILLNESS OF ONE KIND OR ANOTHER CAN BE DEVESTATING. Thirty years ago after I had My first of three brain operation for a craniotomy, and I found Myself on medications for Life thereafter. After a few years I discovered though My Life was saved medications were killing My quality of Life. Now I'm 55 and I know in My Heart that Life for Me didn't pan out as I would have wished, but I had to learn to accept Life as it is, and I am happy. 🇮🇪