How can I talk to children about Parkinson's?

If you've been diagnosed with Parkinson's and have children or grandchildren, you may be thinking about how to talk to them about your condition. We share some tips to help guide the conversation.

For younger children, keep it simple

For younger children (under the age of around 7), try to avoid medical terms. Even with older children, try to describe new words or ideas in an accessible 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

Children may not be able to take everything in at once. Afterwards, check with them what they’ve heard and make sure they’ve not misunderstood anything. 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.”

Parkinson's is different for everyone

Make sure children understand that Parkinson’s affects people differently, and it may affect you differently to other people they know or have seen in the media with the condition.

Be open and honest

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. For example, you may know that Parkinson’s is not contagious, but do they?

Older children may want more information

They 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

Let them know it's ok 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.

Be clear about your feelings

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.