Sex and relationships when you have Parkinson's

Parkinson’s may affect sex and your relationships whether you have Parkinson’s or care for someone who does. Here, 5 readers, who wish to remain anonymous, share their own experiences. 

This reader is 77. He has had Parkinson’s for 10 years and been married for 56 years.

Parkinson’s has changed my relationship with my wife. What seem to be trivial events become major issues. We don’t sleep in the same bed or even the same room in case I disturb her. We may go out for walks, but we don’t hold hands anymore because I use a walking aid.

Our relationship has often been pushed to the limit because of my own frustrations at wanting to be independent and my wife who wants to help as much as she can. The result is tension and strain. I feel as though we are in 2 different marriages.

As my carer, my wife gets exhausted and can feel isolated. She’s ‘lost’ the person she’s shared previous years with. And she feels guilty when everything just gets too much. To me, she is worth her weight in gold though. Throughout our challenges, our ‘Parkie’ friends listen and provide shoulders to cry on. They are invaluable to both of us. 

This reader’s husband was diagnosed with Parkinson’s 2 years ago. She is 68 and he is 72.

Before my husband was diagnosed with Parkinson’s, we had an active sex life. After diagnosis, you stop, you panic, you wait a while, and then you get on with life as best you can. But he has changed, I have changed, life has changed. 

For us, sex means intimacy and it also gives us an opportunity to talk about things we don’t at other times. We cuddle, caress and kiss often. My husband has Viagra on prescription, but he usually doesn’t need it. That makes him feel really good and I’m happy for him.

As we have got older, sex is not so important to me, but it gives my husband some kind of normality. In turn, it makes me feel like I’m doing something to make him feel good, which he deserves as he is the one living with this wretched condition.

This reader is 64 and his wife is 52. He has had Parkinson’s for 2.5 years. 

I can’t totally blame Parkinson’s for the decline in my sex life or relationship, but it has played a part. 

My restricted movement has limited sexual activity and requires more imagination when we are intimate. Confidence is also an issue. Parkinson’s often makes me feel I am no longer the man I used to be and the more needy I get, the more my wife resists.

Most significant to me, is the subtle change in our relationship. My wife treats me differently, acting more like my carer than a partner and lover. While I appreciate her helping me button my shirt, I would prefer to struggle with these physical chores and keep the intimacy in our relationship. Overall we have a strong relationship but we find this difficult to talk about without it descending into an argument. 

Parkinson’s has brought us closer together as we understand each other’s needs far better.

This reader is 43 and was diagnosed with Parkinson’s in 2017. She lives with her partner and 2 daughters. 

Some days I struggle to feel attractive, especially when I move around like an old lady and am in pain. But there is an underlying pressure that my partner and I need to make the most of our relationship before Parkinson’s takes over.
 
As a couple, we’ve had to work hard to ensure we still have an active sex life. Open conversation has really helped with that. For example, my tremors can get worse when I am excited, but to begin with, my partner found this difficult as he thought I wasn’t enjoying sex. Now he knows I do want to have sex but my body is just a little slower at communicating that to him.

It’s as if you need to redefine how you want to experience intimacy with each other. Strangely, Parkinson’s has brought us closer together as we understand each other’s needs far better.

This reader has been married for 35 years and was diagnosed with Parkinson’s in his early fifties. 

After being diagnosed with Parkinson’s, I joined a few local and online support groups and started talking to other men with the condition. I learned that reduced sexual function can be part of living with Parkinson’s, which was difficult to hear.

My ability to make love with my wife has become somewhat unreliable, and often leads to less desire on my part to even try. Basically, I’m not sure when I’ll want it and whether I’ll be able to do it when I do.

Our sex life is now a work in progress. It needs different timing and positions and lots of patience from both of us. But my wife is very supportive.

When you are married, if one person is sick, its like both spouses are. These days, I try not to feel guilty about the impact of my health on my wife – and importantly, I’m learning that love and the way you express it changes as you age.

Find out more about relationships, sex and Parkinson's here