Talking to Children About Parkinson's

Sharing a Parkinson’s disease (PD) diagnoses with friends and family fosters connection and support.

Sharing a Parkinson’s disease (PD) diagnoses with friends and family fosters connection and support. It is also important to decide when and how to tell the children in your life. Simple answers to basic questions can help children better understand Parkinson’s.

Tips for Talking to Your Children or Grandchildren

  • Use simple terms to explain your diagnosis, including the symptoms and what behaviors to expect.
  • If you have more than one child, try to initially talk with them one at a time.
  • Prepare to answer basic questions, such as if the diagnosis is fatal, if PD is contagious and if your child will get PD.
  • Encourage your child to ask questions and prepare for some of them to be sensitive in nature.
  • Set up a visit for your child with your neurologist to talk about the disease and what to expect.
  • Let your children know that there will be some changes in daily living and that working as a team will help your family.
  • Explain that people may stare at you because of the disease, and that it is usually because of curiosity and not rudeness.
  • Teach your child how to explain the disease to their friends, in case they are asked about it.
  • If your child has a particularly tough time dealing with your diagnosis, ask their doctor to recommend a therapist who specializes in helping children whose parents live with a disease.

Your doctor, friends and other family can also offer suggestions on how to best answer children’s questions. For other questions and resources, call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636) or watch our Expert Briefings webinar: Parkinson’s and Parenting: The Impact on Children and Young Adults

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