Being in a relationship

We've met many couples and families who say that coping with Parkinson's together has made their relationships stronger.

But some people find that Parkinson's does affect their relationships, and this can happen at any stage of the condition.

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Parkinson’s may affect your self-image, mood and how you communicate with others. This may happen if you’re in a casual or committed relationship, or if you’re single. Some people have relationship issues in the early days, when they’re adjusting to diagnosis, while others may run into problems after many years of living with Parkinson’s.

Each person with Parkinson’s has their own experience of the condition. The symptoms you have may be different from other people. It’s important to remember that many people go through sexual and relationship issues at some stage in their life, so any problems you have may have nothing to do with Parkinson’s at all.

First reactions

How you handle the issues Parkinson’s presents can have a big effect on your relationships. For example, how you and your partner react to a Parkinson’s diagnosis can affect how you feel.

Your reaction will be personal to you and people can go through a range of emotions, including anger, frustration, denial or guilt. You may even experience relief at finally knowing what’s been causing your symptoms. It’s not unusual to go through a number of stages when you’re coming to terms with your diagnosis. People affected by Parkinson’s have told us how important it was to their relationship to allow this period of adjustment to take place.

Expectations

Your expectations of Parkinson’s may be very different from someone else’s. Some people are fearful and assume they will become disabled very quickly. Others may barely expect Parkinson’s to affect their lives.

If you’re in a relationship, you and your partner may have different expectations. Perhaps one of you is more optimistic than the other. One of you may like to talk about problems, while the other prefers to reflect on them alone.

There’s no right or wrong way to come to terms with a diagnosis. But trying to understand each other’s view can help to minimise conflict. Talking frankly to each other can be a great help.

Wherever possible:

  • share your opinions without judging each other
  • make sure you get as much accurate information about Parkinson’s as you can, so your expectations are as realistic as possible
  • share this information with the people in your life who you think will be affected

Emotional changes

After a diagnosis of Parkinson’s, some couples find themselves in a period of mourning for the life they previously had. You may be coming to terms with changes in your lifestyle, personal identity and your working life.

If you have Parkinson’s, your self-image may be affected. You may have symptoms like involuntary body movements, poor posture or excess saliva, that make you feel self-conscious or embarrassed. Low self-esteem can cause you to become withdrawn, which may affect your relationship.

When relationships are going well and we feel positive about ourselves, it’s easier to manage life’s ups and downs. When they’re not, even simple things can feel like a struggle. You may find your relationship changes in ways you hadn’t expected.

Talking openly to each other can bring you closer as a couple. Some people may find they’re dealing with these emotions on their own and they may feel isolated and resentful. If this sounds familiar, you may want to try relationship counselling. A Relate counsellor can help you both talk about the problems you’re facing together (see the end of this information for contact details).

Changing roles

When someone has Parkinson’s, it’s common for relationship roles and the dynamics of a relationship to change. This can happen at any stage of the condition. Any long-term condition or disability is likely to have a big impact on even the healthiest of relationships. As Parkinson’s progresses, you may find you and your partner take the roles of carer and cared-for. This can be difficult if your relationship was very different before – for example, if the cared-for person was used to being the main earner and decision maker in the household, or if the carer had an independent lifestyle.

Some couples find it hard to see each other as equal partners in these new roles. It may take time to adapt to a new type of relationship that continues to be fulfilling. You could both try to:

  • maintain a sense of independence. You should have time to be alone and do your own thing, as well as doing things together
  • take any opportunity to reverse the caring role. This may be where the person with Parkinson’s continues to give emotional or intellectual support
  • find mutual activities, like playing board games, spending time watching a film or socialising with friends, where you can be equals
  • come up with a list of things you can continue to do together, or new things you’d like to try
  • keep communicating with each other. Parkinson’s can affect all types of communication – verbal, written, and facial expression, but it’s important to keep these channels open as much as possible

Find out more about communication and Parkinson’s.

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How you handle the issues Parkinson’s presents can have a big effect on your relationships.

Whether you have the condition or are in a relationship with someone who does, how you both react to the diagnosis can affect your wellbeing and your relationship.

Your reaction will be personal to you and people can experience a range of emotions, such as anger, frustration, denial or guilt. You may even experience relief in finally knowing what has been causing your symptoms.

It's not unusual to go through a number of stages when you’re coming to terms with your diagnosis.

People affected by Parkinson’s have told us how important it was to their relationship to allow for a period of adjustment.

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Adjusting to life with Parkinson’s may be stressful, whether you have the condition yourself or you care for someone who does. Some people may experience feelings of depression. This can be due to Parkinson’s itself or felt as a reaction to living with the condition.

You may find the following tips useful:

Ask for support

The support of friends, family and professionals can help. You may want to talk about your feelings with your GP or Parkinson’s nurse. You can also call our helpline on 0808 800 0303 to speak to a trained adviser, or ask them for the details of your Parkinson’s local adviser, who can offer one-to-one information and emotional support.

Relax

It’s easier to say than do, but it’s important to relax. To lift your mood, you could try having a bath, going for a stroll, reading a book or just chatting with friends.

Treat yourself

Take every opportunity to give yourself a treat. It might be something as simple as enjoying a cup of tea, listening to a new album, having a foot soak, or something bigger like having a weekend away.

Start a journal

Many people find it helpful to write down their thoughts and feelings. Try to do this at a quiet point in the day when you won’t be interrupted. It can be encouraging to look back over the weeks and see how much you’ve moved forward.

Look after your physical health

Sometimes, it can be tempting to eat comfort food and spend a lot of time sitting on the sofa, but this will only add to your negative feelings. Taking regular exercise and eating a healthy diet will benefit your mind and body.

Talk

Not everyone will feel comfortable with this, but talking stops us feeling alone and allows us to connect with people. It doesn’t matter who you talk to – it could be a trusted friend or a family member. If you’re in a relationship, it’s important to talk to each other.

Let yourself cry

There will be some days when you may just want to cry. It’s important to allow yourself to do this – recognise how you feel and let yourself express your emotions. When you’re angry, let those feelings out too, where you can do so appropriately. Keeping powerful feelings bottled up tends to make things feel worse.

Laugh

It may be difficult to find things to laugh about sometimes, but when you laugh, your body releases feel-good chemicals. If you like TV comedies, keep watching them, and ask your friends to tell you their latest joke.

Find out more about depression and Parkinson’s, and anxiety and Parkinson’s.

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These tips are often suggested by Relate counsellors:

Love yourself

A strong relationship starts with positive self-esteem. If you don’t love yourself, it’s hard to believe anyone else will.

Accept difference

We’re all unique, so differences of opinion are a part of life. Accept arguments as a healthy part of life as a couple.

Argue well

When you argue, make sure you confront the issue, not each other. Listen, be respectful and try to find a common solution.

Say sorry

Love does not mean never having to say you’re sorry. We all make mistakes and get it wrong sometimes, so be ready to apologise.

Listen and learn

People change and grow over the years. Don’t ever think you know your partner so well that you can predict what they’re going to say.

Make good quality time

It’s a cliché but it’s true – quality is more important than quantity. Make sure you make time to talk, laugh, chat, or just to be quiet together.

Share goals

Another way to connect is to talk about and work towards common goals. It doesn’t matter if that’s planning a party, decorating a room or saving for a holiday. The important thing is that you share the goal.

Spend time with other couples

It’s easy to think that only you have problems, but when you spend time with other couples, you’ll see you’re not alone. All relationships have their ups and downs.

Give each other the benefit of the doubt

Don’t jump to conclusions about each other’s behaviour or motivation. If you feel irritated about something, first check that what you think they’re saying is what they meant. If it wasn’t then let it go. If it was, sit down and discuss the problem.

Explore your senses

Exploring your senses is something you can share and enjoy. You can try:

  • laughing together – this is one of the best activities for helping you bond
  • lighting scented candles or experimenting with different smelling oils in an oil burner
  • enjoying taste together by trying a range of foods
  • listening to music

Physical affection

Physical intimacy is a crucial part of many relationships. Some movement symptoms may make it more difficult to be spontaneous. But touch is an essential part of being human and you can experience this, whatever your physical condition. Touch has the power to soothe, support and encourage, whether it’s a peck on the cheek, a hug or making love.

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We’ve heard from many people with Parkinson’s whose relationships have broken down. Sometimes the effects of living with the condition and the demands it makes on a relationship can be a contributing factor. But there are lots of other reasons why a relationship may end and often it isn’t due to one reason alone.

It’s important to come to terms with what happened if your relationship has ended. This may take time. It often helps to talk to friends or family about things as this can make you feel less isolated. It can also help to give perspective. You could also consider talking to a counsellor. Setting yourself goals or making plans is very useful – achieving something can be a great confidence booster and a helpful reminder that you’re moving on, even if on some days, you may not feel like you are.   

For some people we’ve spoken to, a separation or divorce has been a very difficult experience. Others have told us that they saw the end of their relationship as a change for the better. Whatever the circumstances, if your relationship does end, it can feel overwhelming and you may worry about what the future holds. But there will be others going through a similar experience and it’s important to remember there is support available to help you.

Organisations such as Relate offer counselling for people coming out of a relationship. You can find their contact details at the end of this information. Your Parkinson’s local adviser can also offer emotional support to you and your family.  You can also call our helpline (0808 800 0303) or speak with other people in a similar situation on our online forum.

 

Video

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Changing roles in a relationship

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"We've had to adapt our lifestyles to live with Parkinson's, but we've never allowed it to take over our lives."

In this video, Shamsa and her husband talk about how her diagnosis has affected them as a couple.

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Relationships, sex and Parkinson's (PDF, 611KB)

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