Communication with children about PD

Explaining a diagnosis of Parkinson’s disease (PD) to a child can be a daunting prospect. However, the tips listed below, and the article on children’s reactions (see link to the left of this page), describe how this can be done, and why discussing PD with a child is so important.

• Don’t try to hide the truth from your child, because you can’t. The child will feel instinctively that something is wrong and their fantasies of what could be wrong can be far more frightening than the truth.
• Give brief, clear information about PD.
• Ask for help when you need it so that the child does not have to guess, get it wrong and feel guilty that they did not help in time.
• Listen with an open mind to any thoughts and concerns that the child may have and try to alleviate their fears.
• Explain about changes within the home and how this will affect everyone, but that by talking and working together, you will be able to manage.
• Encourage older/grown-up children to learn more about PD, based on sources you recommend, such as those found in the ‘Further information’ section of this website, and on the ‘Rewrite Tomorrow’ website (www.rewritetomorrow.eu.com/en/PDresources/children.htm).
• Show the child that it is alright to have worries and concerns and that you can manage these.
• Be realistic and hopeful about the management of PD.
• Last but not least, show by example that life is good and that every day is alright, despite living with PD.