Talking to children and teenagers

If you've been diagnosed with Parkinson's and have children or grandchildren, you may be wondering how to talk to them and how they will react. It's likely they'll have questions about how it may affect you and your family now and in the future.

Should I tell the children in my family about my Parkinson's?

Yes, when you’re ready.

It’s natural to want to protect children from knowing about serious health issues in case it scares, upsets or worries them. But keeping the news from your children isn’t the answer.

This is because:

  • Children are very aware of what’s happening around them. Even if you try to hide your condition, they are likely to pick up that something is ‘wrong’ – from snippets of conversations or from changes in the mood or atmosphere at home.
  • Not knowing what’s wrong may mean that children develop their own theories about what is happening, and these may be worse than the reality.
  • As Parkinson’s progresses it will become more and more difficult to hide your symptoms and your children may find out from someone else – and it’s much better that they hear about it from you. They may feel resentful or worried about why you didn’t tell them.
  • Trying to keep Parkinson’s hidden from your children may be difficult and exhausting for you.
  • You may feel relieved to tell your children. Speaking about your condition to your family may help to ‘normalise’ your situation and make it less frightening for everyone.

Who should tell the children?

If you are a parent with Parkinson’s, it would be best if your children hear the news from you and your partner.

Be aware though, that how you discuss it will be influenced by the way you feel about your Parkinson’s – you may need support with your diagnosis before you are ready to tell them or you may need other family members around at the time.

If you are a grandparent with Parkinson’s, you may wish to tell your grandchildren yourself or tell them with their parents around too. Alternatively, you may think it’s best for the children’s parents to break the news, and you speak to them afterwards.

When is a good time to tell the children?

There’s probably no such thing as a ‘perfect’ time, but it’s helpful to think ahead about when and where could be a good opportunity.

Try to tell your children as soon after your diagnosis as you feel you can. You don’t have to make it a big occasion, but make sure it’s in a calm environment, free from distractions and give yourself and your children the time and space you need.

Leading up to the initial conversation you may feel worried about how to do it, but often the thought is worse than the actual event.

Try not to think of talking to your children about your Parkinson’s as a ‘one-off’ event. Think about it as an on-going conversation – there is no rush to tell them everything in one go.

As your Parkinson’s progresses, and as your child gets older, you’ll need to talk about different aspects of your Parkinson’s. Starting the conversation as openly as possible will help children feel that it’s OK to talk about your condition as time goes on.

What should I tell them?

You can tell children about Parkinson’s at any age, but what you tell them will depend on what they are able to understand.

The younger your child, the simpler the information needs to be. But even for older children, it will be helpful to keep the information simple to start with. For younger children (under the age of around seven), try to avoid medical terms.

Even with older children, try to describe new words or ideas in an approachable way without using medical language. Try to use the same words or kinds of words your child uses when they ask questions or talk about their feelings about your condition.

Take the lead from your children about how much to say – they may not be able to take everything in at once. Afterwards, check with them what they have heard so that you can make sure they’ve not misunderstood anything.

As Parkinson’s affects people differently, how much the condition currently affects you is probably a good place to start. You might ask if they have noticed any changes in you. Or you might start by saying something like, “Mummy has something called Parkinson’s, which is why her arm is sometimes shaky.” Be specific and clear in describing your condition.

Be honest in what you tell them – children may feel mistrustful if they discover later on that you haven’t told them the truth. Also, don’t assume anything. You may know that Parkinson’s is not contagious, but do they?

Older children may want more information – and may even have questions you don’t know the answers to. That’s OK. Remember you don’t have to discuss everything in one go. Just try to get the message across that it’s OK to carry on talking about Parkinson’s.

Encourage your child to ask questions – not just when you speak to them, but at any time. This way they can really join in the conversation and feel listened to. They’ll also feel more involved and able to share their worries.

Whatever the age of the children in your family, don’t forget to remind them that although you may not be able to do everything you used to do, you still love them just the same.

Resources to help explain your diagnosis to children

Parkinson’s UK has many resources to help you explain Parkinson’s to your family.

  • For you to read to children aged three to seven (or older children to read alone), we have a range of children's books available called My grandad has Parkinson’s, My mum has Parkinson’s, My dad has Parkinson’s and My gran has Parkinson’s.
  • Our guide to Parkinson's for teenagers explains Parkinson’s in an accessible way and offers information on how to handle difficult emotions.
  • You can also find information for young carers on our website.

How might my children react?

Being told that a loved one has Parkinson’s can affect a child’s emotions, behaviour and even their performance at school. Every child will react differently, even those in the same family.

Try to prepare yourself for the following emotions:

  • worry
  • anger
  • embarrassment
  • frustration
  • resentment
  • relief
  • fear
  • sadness
  • grief

Let your children know that it’s normal for them to feel any of these emotions – and make sure they know it’s OK to talk about them.

You should also look out for them trying to hide their feelings. Children may do this because they think their reaction might worry you. Even if you think they’re hiding their feelings, carry on talking and encourage your child to talk to others too.

You may want to tell other family members, friends and your children’s teachers about your Parkinson’s so that they can keep an eye on them or be another source of support – but only if you’re ready to do so.

Although it can be hard for children to cope with a loved-one’s Parkinson’s, children are incredibly adaptable and with the right support, they may surprise you with how well they can adjust.

It may be one of those things in life that helps them become responsible, independent, patient, mature, open, aware or less self-centred.

Common questions children may have

  • How did you get Parkinson’s?
  • Why do you have Parkinson’s?
  • Will I get Parkinson’s too?
  • Will it go away?
  • Can the doctors help you?
  • Does it hurt?
  • Are you going to die?
  • Is it a secret?
  • Will you still be able to take me to football/music/drama/ballet/etc?

Who else can my child talk to?

There may be a time when you think your child needs extra help – or they may tell you they are finding things difficult. Sometimes it can be better for a young person to talk to someone who is not involved in their family life, such as a friend, their teacher or their GP, for example.

You might need to signpost your child's teacher to more information about Parkinson’s so they can best support your child. You can share this short film, designed to educate teachers on the impact of Parkinson’s on families. It was created by a mum who has Parkinson’s, working with members of our Excellence Network at Plymouth University.

If your child still seems troubled or depressed, or if interaction between your family is affected by Parkinson’s, the first step is to talk to your GP. They should be able to explain the different kinds of help available and refer you to an appropriate service. This might involve counselling – either for the child alone or with the whole family.

There are also several organisations for children and young people that offer confidential telephone support, for example Childline and YoungMinds.

Remember, every family is unique and you will find your own way of living with Parkinson’s. If you have any concerns about talking to your children about Parkinson’s, call the Parkinson's UK helpline on 0808 800 0303.

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Talking to children about Parkinson's (PDF, 176KB)

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Ryan's family are learning to cope with his dad's Parkinson's

A guide for teenagers

We've created information specifically for teenagers who have had a relative diagnosed with Parkinson's. It should help them to understand a little about Parkinson's and how it might affect their family.

Read our guide for teens
Sarah Webb playing with her children

Children's books

To help you talk to little ones about Parkinson's, we've put together 4 children's books that you can read through together.

Read our books for children

Last updated July 2014. We review all our information within 3 years. If you'd like to find out more about how we put our information together, including references and the sources of evidence we use, please contact us at publications@parkinsons.org.uk.